Once considered a toy for the rich and powerful, mass production methods made cars available to the general population. Since the early 1900s, this piece of machinery changed not only how we travel, but life as we know it.
There’s no denying the call of the open road. The 4 million miles of public roads in the United States offer a freedom that’s hard to match.
Most of us have childhood memories of that thing we call a “family vacation”. It involves piling everyone and only their “most essential” belongings into the family vehicle for the seemingly never ending cross-country trek to somewhere or some obscure relative.
Traveling is one of the challenges we encounter in the gluten-free lifestyle. Leaving the safety of your home can be unsettling - even for the most experienced. With a little planning and some creativity, we can make it a trip we remember for a lifetime.
Traveling by car/van/Wagon Family Truckster/Vista Cruiser is not the fastest mode of transportation, but it’s readily accessible, the most economical, and certainly the most flexible method.
Arrive two hours before departure. Stand in endless lines. Put up with ill-tempered TSA agents eagerly waiting to do full body searches. Pay for going six ounces over the fifty pound weight limit for luggage. Fahgettaboudit - we’re calling the shots - we’re traveling on our own terms. Heck, we can take 50 pounds of shoes if we want! However, we’ll be using our space more effectively by taking 45 pounds of food and only 5 pounds of shoes. Hey, we gotta be comfortable walking around the world’s largest ball of twine, right?
A successful trip starts before you even insert the key into the ignition. Planning is an important part of the equation - it’s even more important on a gluten-free road trip.
I’m going to assume you’ve already had your vehicle checked over and know that it’s road worthy. No one wants a breakdown on the way Neillsville, WI to see Chatty Belle, the world’s largest talking cow.
Are you ready to start your gluten-free road trip? Let’s go!
Create an Itinerary.
Local support groups can be invaluable when it comes to finding trusted sources of food. As you well know, groups and their most humble leaders are amazing resources.
- Mapping sites allow you to get directions to and from desired locations.
- Get a bird’s eye view of the area.
- Great reconnaissance tools.
- Create maps with your points of interest in order to quickly see how close or far these spots are from one another.
How far is that gluten-free restaurant from our hotel?
Trip Planning Websites
NOTE: No personal experience with these sites, but will be investigating them closer.
Find, Research, and book hotel rooms. I always use TripAdvisor to vet hotels. Guest comments are extremely helpful.
We do best if we plan for breakfast and lunch. For dinner, we try to seek out a reputable restaurant - of course - if at all possible, this is mapped out ahead of time.
Many hotels offer free continental breakfasts, but gluten-free options are usually limited to fresh fruit. If you’re lucky, you might find hard boiled eggs. Luckily, you brought your own!
When selecting a hotel, get a room with a microwave and fridge. Having these basic tools on hand makes it a bit more convenient. If you’re staying longer than overnight, find a place with a kitchenette. Of course this means packing some basic cooking equipment.
Stocking Your Mobile Pantry.
Since you’ve already scouted out some potential grocery stores at your stopping points, you can gauge how much food you’ll need to bring along for each leg of your Tour de ‘Merica.
Grab your favorite gluten-free crackers, pretzels, breads, snack bars, beef jerky or meat sticks, sandwich meat, packets/cans of tuna, hard boiled eggs.
Make up a cold pasta or tuna salad the night before you leave. This makes for a great lunch the next day. While you’re at it, fry up a pound or two of bacon (crispy please). You’ll be happy you did when you have access to a microwave.
Don’t forget your favorite fruits (whole apples, bananas, oranges, grapes, watermelon, cantaloupe, strawberries) and veggies (carrots, sliced bell pepper, broccoli and cauliflower florets, celery, snap pea pods, cucumber slices, cherry tomatoes).
No road trip is complete without a big batch of trail mix (a variety of nuts, dried fruits, chocolate chips or M&Ms…and any thing else you like - be creative).
Prepping some of the foods ahead of time will pay big dividends when you’re out on the road. Washing, slicing, pealing, and packaging foods will make them easier to eat. Put these foods into sealable air/water tight containers - like Ziplock Containers/bags, or Tupperware brand containers.
Practice safe-toasting. You’re hankering for a piece of gluten-free toast, but you can’t find a gluten-free toaster anywhere. No problem, toaster bags to the rescue!
Toaster Bags - Amazon
Individual/Travel Sized Products
Minimus.biz offers over 2,500 food & non-food products. A most interesting website!
“Only food products that have been labeled by the manufacturer as being Gluten Free are listed here in our Gluten Free Food shopping aisle. Though other products may also qualify as Gluten Free, they are not marked by the manufacturer. “
Improper food storage can result in food-borne illness; in severe cases it can be deadly. Bacteria thrive and multiply quickly in warmer temperatures. The danger zone falls between 40 and 140 degrees. Without refrigeration or a heat source, perishable food should not be left out for more than two hours if the temperature is below 90 degrees. Reduce that time to one hour if the temperature is at or above 90 degrees. Keep cold foods at or below 40 degrees and hot foods at or above 140 degrees. Throw an appliance thermometer in the cooler to keep an eye on the temperature.
Coolers come in many sizes, shapes, and materials (soft sided and hard sided). They range from simple low-tech styrofoam to hi-tech iceless car battery/AC powered travel coolers and refrigerators. The hard sided coolers offer longer cooling than soft sided. Spend some time researching which type of cooler is right for your needs - it’s worth the investment of time.
If you’re going old school with a traditional non-powered cooler, you’ll need to think about the type of ice to use. What?!? Ice is ice, no?
Crushed ice or cubes cools items faster, but blocks of ice last longer. Dry ice is also an option, but requires some special handling - we won’t cover that here.
Cube ice & water mixture is great for cooling beverages, but tends to be messy and doesn’t mix well with food. Soggy food is never good eats.
The best option is block ice - even better when the block is inside a container like a plastic bottle or sealable container. The container helps in reducing the amount of water in your cooler.
The best bottles I’ve found are Simply Lemonade/OJ/Apple Juice/etc 88.93 and 59 oz. Also Pure Leaf Iced Tea 64 oz. What I like about these bottles - they’re not round and have relatively flat sides - this means better contact with food for maximum cooling.
For smaller ice bottles, Pure Leaf Iced Tea 18oz are perfect. All of these bottles are made of thicker plastic and hold up very well. We use them almost weekly for grocery shopping expeditions. Soda bottles work well too.
You can also freeze water in quart sized Ziploc freezer bags or the 3” thick ZipLoc rectangular containers. I’d prefer the containers over the bags. The flat ice blocks can come in handy when layering items in the cooler.
Remember, water expands when it freezes. Do not fill bottles/containers all the way to the top - leave some room for expansion.
Looking for your first cooler? Looking to add another one to your collection? Here’s a few sites offering their reviews of different brands/models.
Field & Stream (High End - $$$)
Outdoor Gear Lab
Air & Water Tight Containers
Wondering what to put your foods in? Check out these containers:
Food Cold Storage Times
How long can I keep foods?
Univ. of MN Extension Food Safety
Wash it before & after using. These guys usually are stored in the basement, in the garage, under the crawl space, in the attic. They can be hot and dirty. If they’re not clean and dry, the inside can get funky. No one likes Cooler Funk.
Pre-chill the cooler with ice and water mixture for a few hours before packing. This will ensure the cooler is chillin’. Discard the pre-chill ice bath.
Don’t pack room temperature or warm items. These items make the ice melt faster, plus it takes a long time for them to get cold. Make sure everything you pack in the cooler is already cold. For most food, it’ll be coming cold from the fridge or the freezer, but for things like beverages - it’s best to pre-chill them - just like the cooler.
Store foods in air/water tight containers. I mentioned this above, but it bears repeating. You don’t want cooler water seeping into your food. Ewww, just ewww. Tupperware brand containers are supposed to be the cat’s meow for this type of storage. Canning jars with the rubber ringed covers would work too, but they’re glass and have the potential to break if dropped.
Place ice (whatever form you use) on the bottom of cooler. Place the perishable foods - those that need to be kept cold the most (pasta/potato salads, meats, dairy, eggs, etc) closest to or directly on the ice. Build layers of ice/food/ice using those flat rectangular containers or Ziploc bags containing ice. Items on top of the cooler should require the least amount of cold.
Keep the lid closed of your food cooler as much as possible.
Have a separate beverage cooler if you have the room. A smaller one just to keep a couple of bottles of your favorite beverage. It’ll help you stay out of the food cooler.
A full cooler stays colder, longer. If you start to run low on items in the cooler - add nonperishable foods, or even a blanket to take up space.
Keep the cooler out of the sun. Keep the cooler inside the car where there’s air conditioning - not in the trunk.
Find Local Gluten-Free Support Groups
Always check your destination for the nearest local support group. They’ll be able to direct you to shopping & dining places.
GIG of ECW Local Support Groups
Find Local Gluten-Free Dining
A few resources to help narrow down your dining selections.
Always ask questions and use your best discretion when dining out. If you’re not comfortable, politely leave.
(Smartphone app not free)
Gluten Intolerance Group Links
Traveling Gluten Free
Restaurant Dining - 7 tips for staying gluten-free
Easy to Find & Fix Snacks
GF Certified Food Services
Keep all snacks in a clear tote bag or container of some type. You’ll always know where they are and you’ll be able to see which container to grab.
In the same container keep some paper towels, wet wipes, or a damp wash cloth in a ziplock bag. You’ll want to wash those paws after snacking.
Salt/pepper/seasonings goes in the same container.
Eating utensils - disposable or non disposable - your choice.
Couple of kitchen knives - paring and steak knife.
Small flexible cutting board
Roll of paper towels
Simple On the Go foods:
Yogurt with granola
Hard boiled eggs
Protein Bars/Snack Bars
Hopefully these hints and tips have inspired you to plan your next great gluten-free adventure.
At this stage of the game, you’ve probably heard about some type of low or no carb diet template. As the name suggests, these diets remove all grains - yes, even the gluten-free grains.
Grain-free diets are known by several different names: Specific Carbohydrate Diet (SCD), Caveman, Ancestral, Paleolithic, Gut and Psychology Syndrome Diet (GAPS), Autoimmune Paleo Diet (AIP), Wheat Belly.
These diets tout a host of benefits that extend beyond a traditional gluten-free diet. Many members of the gluten-free community feel best when they’re grain-free as well.
By definition, grain-free should be gluten-free. “Gluten” is the generic name for the various proteins found in grains. You ditch the grains, you ditch the gluten. It’s a no-brainer! Um, not so fast Slick…
The purpose of this article is to make you aware of an important fact that is not always discussed by the proponents of grain-free diets.
Don't be lulled into a false sense of gluten-free safety by a grain-free food - even though it may be “Paleo Certified”. Sure, the food itself may be naturally gluten-free, but gluten-cross contamination could still be a threat. My concern is for those who may not know to be concerned about cross contact. The unknowing may wonder why they’re not feeling better while being grain-free due to gluten contamination.
Almond flour, coconut flour, chick pea flour, flax seeds (whole or ground), whole nuts of all kinds, herbs, spices, and seasonings are some of the popular ingredients in many grain-free foods. Sure, those are all single ingredient foods - but if these foods are ground, processed, packaged on lines used for gluten containing foods, then the end product could have detrimental levels of gluten.
The bottom-line for those with gluten-related disorders who want to be grain-free - make sure your grain-free foods/ingredients are labeled or certified gluten-free.
GIG of ECW Branch Manager
I cross paths with a number of members in the gluten-free community who are troubled, angry, and hurting [both emotionally and physically]. This leaves me with a heavy heart. Just maybe, the information found here, might help ease the pain - just a little bit.
Peace and blessings,
GIG of ECW Branch Manager
A special thank you to Pastor Kimberly Stowell [my spiritual leader] for "planting the seed". This article was inspired by a recent sermon.
Life is full of twists and and turns. We never know what's going to come at us.
Rumi's "The Guest House" poem reminds us to welcome all of our life experiences, even those we consider less desirable.
The emotions we encounter in this life offer us the ability to enter a new state of being - to learn something new about ourselves. Perhaps, they may be preparing us for greater things to come.
No one decides one day to play host to a gluten-related disorder. I know I didn't. This "unexpected visitor" appeared - liked the new digs and decided to hang around. In my heart of hearts, the path that I have traveled is not one I would have chosen. I am eternally thankful for what nutritionist and author, Melissa Diane Smith calls “the gift of gluten-free”. All those years ago when I was lying on the living room floor in the fetal position, I could not have imagined what was in store for me [besides death].
I had to give up gluten, but what I have received in return is beyond measure.
It took a while to realize it, but I was given an opportunity to use my skills and talents to help others. I discovered talents I didn't know I had! The biggest gem unearthed in me was a passion and a purpose - something that was lacking in my life previously.
I consider myself an ordinary, average guy. If this transformation can happen to me, it can happen for you.
It doesn’t take long to realize that going gluten-free changes our life - forever.
This new reality hits us with the force of a speeding freight train. In some cases, it comes out of nowhere. No lights, no whistles, no warning what so ever. WHAM! Our life is shattered into a million pieces.
With increased rates of anxiety and depression it’s no wonder those with gluten-related disorders consider ourselves to have a lower quality of life than our peers. As we might expect, grief soon appears. This is normal and healthy; we need to allow ourselves to process those feelings. It’s easy to understand how we could get caught up in a never ending downward spiral of negativity and despair; there are days we feel as if there is no way out.
I’ve painted a rather dark and brooding [albeit realistic] picture of what it's like to live with a gluten-related disorder. For some, it's all of this and more. For others, they adapt and adjust with minimal or no hardship. I believe we’d see similar pictures if we explored other chronic health conditions or tragic life circumstances.
We can’t help but wonder, will we ever feel better about our situation? Is there a way break out of these emotional and physical shackles? YES!
What is gratitude?
Dr. Emmons defines gratitude as:
He maintains that gratitude consists of two key components: affirmation of goodness, and knowing where it comes from. He writes:
I think it's safe to say that every gluten-free person has ridden an emotional roller coaster. People suffer for years [6 – 10 years on average]; endure numerous doctor's office visits and usually walk away with more questions than answers. Frustrating to say the least. The result of finally getting answers to the on-going health issues brings an immediate sigh of relief, almost a giddiness. “WHEW, I finally know what's wrong with me!”
All too quickly that euphoria dissipates when reality comes calling - “What am I going eat and how am I going to handle this?” Convenience – gone. Care-free dining – adios. The joy of family gatherings - replaced with dread and worry. Things that took little or no thought - now rivals the logistics of a Mars Rover launch.
For many of us, this transition can be a difficult time.
At first glance, the gluten-free lifestyle means giving up a lot things. However, as we start picking up the pieces of our life and clearing away the debris, we discover that goodness is still there. It has not abandoned us, it is merely manifesting itself in different ways - ways that we’re not used to seeing - it’s in disguise. Somedays, we may need to dig damn hard and deep to find the goodness.
Gratitude allows us to focus on what we have instead of what has been taken away.
Let’s explore of a few of these gluten-free gifts. Probably the most obvious and precious gift is the opportunity to improve our health. The gift of love from someone who cares for us when we don’t feel well. The gift of compassion from our best friend or loved one who is learning right along side us - cheering us on - being our gluten-free champion. The gift of kindness from a stranger in the gluten-free aisle at the grocery store as they help us avoid a nuclear meltdown because we don’t know which product to get. The gift of friendship as we meet others in the gluten-free community; we realize we are not isolated, nor alone. The gift of comfort when we find a product that is labeled and certified gluten-free. These examples simply scratch the surface.
For over a decade, Dr. Emmons and his associates have scientifically documented the social, physical, and psychological benefits of gratitude.
- Gratitude increases happiness.
- Gratitude reduces anxiety and depression.
- Gratitude blocks negative emotions.
- Gratitude improves health: strengthens immune system, reduces blood pressure, lessens symptoms of illness, decreases awareness of aches and pains.
- Gratitude improves sleep. Better sleep is important factor in improving overall health.
- Gratitude promotes forgivness.
- Gratitude fosters a “pay it forward” attitude.
- Gratitude strengthens relationships.
The Power of Gratitude: http://bit.ly/2ejTxQr
What Good is Gratitude? http://bit.ly/2feq4a6
The Benefits of Gratitude: http://bit.ly/2fAOX0e
Gratitude sounds great, but how can we best harvest these transformative powers?
Cultivating an attitude of gratitude takes a bit of work and practice. At first you may feel uncomfortable or awkward doing it. You may be wobbly and unsteady, just like taking your first steps or your first attempt at riding a bike. You might even find it emotionally painful - you know - kind of like those muscles you didn’t know you had until after raking the lawn. Like any skill or activity, the more we do it, the better we get. It is best to start slow and work your way up.
Dr. Emmons suggests these exercises to get started. Please be sure to click the links for a more detailed description of these exercises and the reasons why they work:
- Count your Blessings: Regularly make mental notes of your blessings - no need to write them down. Do it first thing in the morning or before going to sleep. Ask yourself,“What am I grateful for today?”z
- Three Good Things: For a minimum of one week, write down three things that went well each day. Small or large events - it doesn’t matter. A tangible, written paper trail is important. In detail, explain why things went well. Capture how you felt at the time and how you felt when remembering the event. Share your thoughts about what caused the event. If you happen to focus on negative feelings - shift focus toward the good events and those positive feelings.
- Gratitude Letter: Write a letter to someone who did something for which you are grateful but you’ve not fully shared your gratitude. It’s best if this person is still alive - someone you can meet face-to-face. When you meet, read them the letter. Take note of their reaction as well as your reaction. Together, discuss your feelings about the letter.
- Savoring Walk: For a minimum of one week, go for a 20 minute walk. Take a different route each day. During this time, notice as many positive things as you can - sights, sounds, smells, and touches. As you notice something, pause a moment and understand why it’s pleasurable to you.
- Keep a Gratitude Journal: This is similar to Three Good Things above, but more in depth. Evidence shows journalling one to three times per week elevates happiness better than daily writing. For a minimum of two weeks - at least once a week for 15 minutes, describe up to five things for which you feel grateful.
Some people find they do better when surrounded by others - like having a workout partner(s). Participating with another person or a group of people inspires and motivates them to continue.
We know the power behind the act of expressing our own gratitude - participating with a group of people expressing their gratitude has to multiply that power - right?
PK Gratitude Mission.
This is a closed group, created by Pastor Kimberly Stowell - my pastor and spiritual leader of St. Stephen's Lutheran Church, Rogersville, Wisconsin (home of the gluten-free communion). Only members of the group can participate and see the posts to the group, so you’ll need to request to join or be invited.
When asked about the purpose of the group, Pastor Kimberly says: “The Gratitude Mission is about helping and up-lifting others.”
If large groups frighten you, fear not. Currently this group is small; consisting of less than 80 people. Everyone is kind, courteous, and respectful. I am a member; I find witnessing other people’s gratitude moving and inspirational.
Thank you for your time. I will leave you with one final message of inspiration…
GIG of ECW Branch Manager
Your spouse, family member, or friend has suffered from recurring health issues for years. You’ve seen them at their best, and at rock bottom. Regardless of how long they’ve been suffering, you don’t like to see it.
Finally, someone figures it out; your loved one has just told you they must be gluten-free. You’re not really sure what gluten-free is or what it means, but you politely listen to their brief explanation and nod your head sympathetically.
“Wow,” you think. “That sounds horrible. Sure glad I don’t have to go through that.”
Sorry to break the news, but pack your bags – you’re going on the journey with them. Why? Because you are a caring, compassionate human being and you want them to be healthy and happy. Good for you!
If you’re a spouse, you made that commitment when you said, “I do.” If you’re a friend, you signed up when you accepted their most precious gift of trust. If you’re a family member, your name has been on the trip’s manifest since birth. They deserve your respect and help because that’s just what family members do for one another.
“…but, I know nothing about this, how can I be so important?”
The important take-away here – you have the power to help them. Your support in this effort is crucial; it could mean the difference between their success and failure.
Support doesn’t require money, or even specialized knowledge. It can be as simple as just being there for them in whatever way they need you - a smile, a hug, a sympathetic ear, or a strong shoulder. It can also be much, much more.
You may not know it, but hiding beneath your street clothes is a superhero’s suit just waiting to be called into action.
We have a few tips and wealth of information in The Gluten-Free Champion’s Academy (see below) to help you make the leap.
What do you do when someone you love gets sick? What do you do when nothing helps them to feel better? What do you do when your best friend, your soul mate and your life partner has changed so drastically that you barely recognize him...
That was the position I found myself in about 14 years ago. It all started gradually, an upset stomach here, some foot pain there, a little more burping and belching than usual. Nothing big, until it got big. When my normally cheerful, energetic, quick to laugh husband was replaced by a pale, thin, ill man I hardly recognized. A person who sat listlessly staring into space not wanting to see friends or attend family functions for no other reason than "I just don't feel good”.
As the complaints increased there was much "encouragement" to see the doctor and get these thing "checked out". The assumption was that a test or two would pinpoint the problem and a medication would be prescribed and everything would be fine.
That’s not what happened. A test or two turned into multiple tests and multiple doctors which did not find the root of the problem. Medications were prescribed that only helped a little or not at all. No real answers were to be found. In the meantime Al continued to get sicker, I felt even more helpless.
I worked in healthcare for God's sake, someone, somewhere must have some idea, something that would make him well again. With increasing frustration and fear, I often found myself crying in the shower so he wouldn't know how afraid I was. I wondered if he were dying as I was just standing by helplessly, watching.
Fast forward to March 2003 where we find ourselves on a white sandy beach surrounded by the beautiful turquoise blue water of Jamaica. When my unwell husband requested a vacation to somewhere warm, I, his loving and dutiful wife made it happen! That March was my turning point.
Al had been doing a lot of research and discovery about this thing called gluten and it's effects on some people. While the discoveries he was sharing with me were very counter intuitive; [read what do you mean crackers and toast can give you a belly ache?] they oddly sounded like him and his symptoms. His gastro doctor was willing to take intestinal biopsies for celiac disease, however the samples did not show intestinal damage. Finding non-celiac gluten sensitivity presented with similar symptoms without intestinal damage, Al started experimenting with a “gluten-free” diet but, the first real evidence I saw happened in Jamaica.
Before the week ended I had my husband back! The energetic guy who was actually looking for a pickup volleyball game! Some may say it was the magic of Jamaica and I won't disagree, but a large part of that magic was the naturally gluten-free diet that he ate.
That week "sealed the deal" for me. Any time that Al would question himself about whether being gluten-free was really the root of the problem or not, my mind went back to that week and the health it brought.
When Al started down the gluten-free path, I knew I would walk it with him. There was no question. If this is what needed to happen for him to be well, this is what we would do. I would help him in any way I could, we were a team. We both come from families where whining, fussing or complaining didn't get you very far; you took what was given to you and made the best of it. That's how we took on this challenge. I am not saying it was easy and we did everything perfectly....it wasn't and we didn't.
There were plenty of times the groceries I brought home went to the local food pantry because l had made the wrong choices; gluten-free labeling laws didn’t exist then. Full loaves of bread and bowls of pasta were chucked into the garbage because they were so bad Al couldn't eat them. The first batch of beautiful gluten-free cookies came out of the oven only to disintegrate into dust when I tried to take them off the pan! We learned from those experiences and tried to make things better the next time. We didn’t give up. I think the key word is we, I think that Al has been just as much of a support to me as I have been to him. He has always encouraged my efforts and has been appreciative of them.
As the gluten-free lifestyle became our new normal, it became more important to me that it be “normal”. When I was asked by family and friends about the diet, I always responded there are more things he can have than things he can't.
It also became my goal to show people that gluten-free was not synonymous with taste-free. I have always enjoyed cooking and baking for people. Nothing gives me more pleasure than to have someone eat and enjoy what I have made and then ask me to make it again. Slowly, I continued transforming all Al's favorite gluten-full treats to gluten-free treats. It became my passion to learn new ways of baking so others wouldn’t feel left-out. And then to be able to pass on what I had learned to others just added to my joy. It has become my way of supporting and helping others on their gluten-free journey. In my humble opinion no one, gluten-free or not should ever go without a good cookie or piece of cake!
Al and I have also been blessed with supportive family and friends. Their willingness to make sure Al can eat safely in their homes has been a Godsend to us. Their efforts have not gone unnoticed or unappreciated and have made my job as main support so much easier.
I never considered myself a "champion", but according to the definition, I am and will continue to stay the course.
You’ve probably discovered this will be a life changing event. It is not simply a change in diet - it’s a change in lifestyle. The cold, hard truth - it affects every aspect of day-to-day living. Not only for your gluten-free loved one, but for you too. Because of your relationship you will experience these changes with them, albeit in a different way.
Knowing how to deal with change is important. Change is never easy. In fact, it’s one of the most difficult aspects of this. It will take time and effort, but the gluten-free lifestyle will become the new normal both inside and outside your home.
As with anything new, there will be challenges to navigate and some things will need to change to keep your loved one safe.
Embrace these changes and you will see all the good things that will come with your new normal.
Know what you are dealing with.
Knowledge is your friend. Once it has been determined that gluten is the culprit making your loved one ill, learn about it.
You don't need to know the exact science, but have a basic understanding of what happens to the body when gluten is ingested, how can it make that body feel, where gluten is found and what should be avoided.
You will need to adjust how much you know around your loved one’s knowledge. If your situation requires you to be the “guardian of the knowledge” (e.g. for your child) you’ll slowly want to pass that knowledge on to them. Teach them how to look for gluten and know its hiding places, teach them how to cook.
As in most things, communication is key. An essential element of communication is listening. Your loved one is going through so many changes, both physical and emotional. If they are newly diagnosed there is a grieving process to navigate. Sometimes they may need someone to listen to their frustrations and fears...not offer opinions and solutions, but just to listen.
When emotions boil over, things can be said in the “heat of the moment”. Conversations can quickly turn into confrontations, further damaging the relationship. It’s important to know the difference between the two.
Conversations are fueled by curiosity.
Confrontations have an aura of a judicial proceeding.
Conversations frame a problem as something to be solved.
Confrontations have an element of moral superiority.
Conversations happen between equals.
Confrontations shield the confronter from any responsibility.
Conversations say “we’re in this together."
Conversations will preserve the relationships while the people involved work toward understanding and solutions.”
~Marie Hartwell-Walker, Ed.D.
Beside working through the physical and emotional elements, there will be many practical, day-to-day things that need to be discussed. Meal and menu changes, how to handle kitchen clean up and what precautions need to be taken to avoid cross contamination or make the house totally gluten-free, how to replace those family favorite foods with a good gluten-free alternatives.
You may need to communicate with family and friends about the new diet and the importance of your loved one's need to not deviate from it. Yes, a little bit of gluten does hurt!
Being open to and answering their questions and planning strategies on how to manage family functions and parties will be a large part of the communication process.
Warning: Family members can be difficult and unsupportive.
You may also need to convey gluten-free requirements to people outside your immediate circle - servers in restaurants, the pharmacist at the drug store, and the pastor at church, and yes - even medical professionals.
Be clear, concise and confident in your communications.
Sometimes your gluten-free loved one isn’t taken seriously, so it helps to have another person [like yourself] be an ambassador - an advocate [fancy words for a “kick-ass champion”]. Someone who will travel not ahead, nor behind, but beside them on the path to gluten-freedom.
It may be trying at times, but please understand they are not being difficult on purpose. Everyone wants to be happy and healthy, for some it requires a bit more effort.
There may be days when you feel like you are not making an impact, but know you are an important team member. Not every hit is a home run, and sometimes a superhero simply helps someone cross the street. No act of kindness is too small.
Kudos to you for stepping up and becoming a Gluten-Free Champion!
Peggy & Alan Klapperich
Gluten Intolerance Group of East Central Wisconsin
P.S. Your cape should arrive within four to six weeks.
updated 6/11/16 - Added "Partners of patients with celiac disease report relationship burden" article
According to a Columbia University study, celiac patients reported better quality of life when they participated in face-to-face support groups compared to online support groups. Also, longer duration of face-to-face support generated a greater quality of life.
In contrast, they found lower quality of life reports when patients spent more time in online support groups.
The gluten-zero lifestyle isn’t a walk in the park. It requires hard work, dedication, commitment, and knowledge. The emotional and physical stress of a difficult lifestyle change piled on top of years [often decades] of ill-health, takes it’s toll. Every opportunity for a positive outcome needs to utilized.
Network equipment giant Cisco performed a study of human behavior and the barriers to effective collaboration. Overwhelmingly, the study showed people were more engaged when they could see and hear each other well; interacting the way humans have been doing since the dawn of their existence: face-to-face.
Humans require direct, face-to-face interaction with one another in order to be happy and healthy.
Online groups can be a great source of support, however, it’s hard to replace friendly smiles, nodding head(s) of agreement, the sympathetic touch of a hand, or a spirit lifting hug.
If you do not belong to a local support group, please seek out the nearest group.
Looking for a group? You can search for group national affiliated [Celiac Disease Foundation (CDF), Celiac Support Assoc. (CSA), Gluten Intolerance Group (GIG)] groups here:
GIG of ECW Branch Manager
This article originally appeared in our January 2016 newsletter. Due to the [unexpected] overwhelming positive feedback, I decided to improve it and post it here.
I hope you find it helpful.
Stay strong & keep moving forward.
GIG of ECW Branch Manager
While many find it a blessing their condition can be controlled by a "simple diet" change, others consider it a curse of biblical proportions. It's no secret, transitioning to the gluten-free lifestyle can be tough. [Notice the word - lifestyle. The changes required go far beyond just diet.]
A new lifestyle requires the desire to change, knowledge of how to make the change, and the dedication and motivation to stay the course. Yes, it's quite a departure from the previous lifestyle of eating anything from anywhere at anytime.
Barriers to Compliance
When it comes to dietary compliance for the gluten-free diet, there are many barriers that must be broken down:
- Time constraints for cooking or preparing food
- Lack of knowledge or education (label reading, recognizing gluten)
- Lack of cooking skills
- Ability to manage emotions: depression, anxiety, fear
- Ability to resist temptation
- Feelings of deprivation
- Gluten-Free food availability (may be hard to find)
- Financial restrictions (GF diet can be expensive)
- Social pressures
- Peer pressures
- Lack of symptoms
- Effectiveness of the diet (it doesn’t appear to help)
This list seems almost endless, but unfortunately it's still incomplete.
It seems that removing gluten is easier said than done. Give up the foods that you’ve been eating for your entire life? That’s crazy talk!
"I need gluten. I can't live without gluten!"
Ironically, a heroin addict might say something very similar. This is not surprising since narcotics and gluten are addictive. Yes, let’s add "addictive" and "withdrawal symptoms" to the barriers of compliance list.
Addictive? Withdrawal? Seriously?
Yes, yes, and yes. Read on Macduff…
Think of gluten as a string of pearls that must be broken down into individual pearls [known as amino acids].
Humans do not have the enzymes to completely break down gluten into individual amino acids.
Large fragments [known as peptides] of undigested gluten remain after digestion.
Some of those peptides are known as gluteomorphins.
Due to increased intestinal permeability [also known as "Leaky Gut"], the gluteomorphins pass through intestinal wall and enter the blood stream.
Gluteomorphins react with the opiate receptors in the brain, just like heroin and morphine.
This reaction creates a craving - generating the desire for more of the substance.
Julianne Taylor, RN at PrimalDocs.com offers up a great explanation on how gluten creates an autoimmune reaction. http://bit.ly/1Pgh6QA
….and now, back to our regularly scheduled article…
Complications of Untreated Celiac Disease
While it may be easy to rationalize away gluten cheats as simple, temporary aches and pains or as minor [major] inconveniences - beneath the surface, your body could be gearing up for a civil war that would put Gettysburg to shame.
A 2015 study published by The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) found that 75.5% of the study participants had adequate gluten-free diet adherence.
So what about the other one-fourth (24.5%)? They may be setting themselves up for additional [often serious] medical conditions.
Some of the possible complications of cheating:
- Increased risk of heart attacks & stokes
- Increased risk of blood clots & Deep Vein Venous Thrombosis (DVT)
- Heart muscle damage
- Heart rhythm problems
- Coronary Artery Dissection
- Bone loss
- Ulcerative jejunitis
- Collagenous sprue
- Neurological disorders
- Increased risk of triggering additional associated autoimmune conditions
by Linda J. Dobberstein, DC
7 Serious Complications of Untreated Celiac Disease
by Sarah Patrick
Complications of Untreated Non-Celiac Gluten Sensitivity
Think you can escape the risks because you have non celiac gluten sensitivity? Sorry, gluten can still rear its ugly head with the likes of:
- Peripheral Neuropathy
- Multiple Sclerosis
- Amyotrophic Lateral Sclerosis (Lou Gerhig's Disease)
- and potentially much more
To learn more about the above list, please check out this link:
by Chris Kresser, M.S., L.Ac
ChChChChanges in Behavior
"Change is not measured in leaps and bounds but in the small steps we take toward a larger goal." ~Claire Dorotik-Nana LMFT
The Barriers to Compliance list above consists of things we can control and things we cannot control. Fear not, this lack of control does not a victim make.
The good news - we get to choose how we react in those situations; if we don't like it - we can change it.
The bad news - change is not always easy and requires effort.
The links below offer some information on how to make the changes that can lead to healthier, happier lives.
The Stages of Change
by Kendra Cherry
"Understanding the elements of change, the stages of change, and ways to work through each stage can help you achieve your goals"
5 Steps to Changing Any Behavior
by Alex Lickerman, MD
"Always remember: none of us was born with any habits at all. They were all learned, and can all, therefore, be unlearned. The question is: how badly do you really want to change?"
NursingTimes.net Vol 107 No 23 06/11/2014 - "Healthier lifestyles: behaviour change"
by Nicola Davies
"Unhealthy lifestyle choices such as smoking and poor diet are significant and preventable causes of long-term conditions. Nurses are well placed to encourage and support patients to make healthy choices. Through good communication, collaboration and goal-setting, behaviour change is possible. This article discusses evidence for the best ways to initiate and sustain behaviour change."
How to Withstand Food Peer Pressure
by Karen Diaz, RD
When you are trying to listen to your body, food peer pressure can be the last straw making you throw in the towel. Here are four important ways to withstand food peer pressure.
The risk of getting sick at every meal is a huge source of stress and concern. Now let's pile on the stress of family dynamics. We've got the fixings for an epic family battle royal. "Let's get ready to rumble!"
“My family puts the FUN in dysfunction”
I'm sure many can relate to the quote above. If you feel your family is the poster child for dysfunction, do not worry. All families are dysfunctional, it's simply a matter of degree.
Since the dawn of time, our existence has revolved around the acquisition and sharing of food. We have evolved and times have changed, but the primal need to gather and share food with members of our clan still remains. Holiday celebrations are a perfect example of that.
If we dig deep inside and look beyond the medical necessity of our food requests, we will find an emotional component. Our requests are an extension of ourselves. When our family and friends fail to acknowledge our food requests, we feel it as exclusion and rejection of us as a person. Maybe it is, maybe it isn't. Sometimes it's hard to tell what is inside the hearts and minds of our loved ones. I suspect the reasons are many and varied. Perhaps it is fear? Maybe they are afraid to try because they don't want to make us sick? Maybe we've yelled at them one too many times about food selection or preparation? What can we do? We have to talk to them.
Conversations are fueled by curiosity.
Confrontations have an aura of a judicial proceeding.
Conversations frame a problem as something to be solved.
Confrontations have an element of moral superiority.
Conversations happen between equals.
Confrontations shield the confronter from any responsibility.
Conversations say “we’re in this together.
For us today, gluten-free comes as easy as breathing, but it wasn't always that way. We were frustrated and confused, it's reasonable to expect family members will feel the same way. However, their behavior may appear to us as stubborn, unyielding, or uncaring. Remember, listening is a critical component of communication.
Despite our best efforts, we may have to accept the fact that some people just won't get it. This does not mean we can give up, however! Let's face it, we're up against years, decades, or in some cases centuries of traditions. The very definition of tradition allows it to brazenly flip Change, the bird.
Trə-ˈdi-shən: a way of thinking, behaving, or doing something that has been used by the people in a particular group, family, society, etc., for a long time.
"What?! No stuffing inside the turkey? Great-Great Grandma Brunhilde would turn over in her grave if we didn't use her recipe!"
Changing family traditions is downright heresy. Remember, to your family, gluten-free will be the new kid on the block. Situations like this call for the utmost patience. It may take some time for this concept to percolate through their brains and become a newly added family tradition. Don't panic, stay calm, and keep the lines of communication open. Keep up your educational efforts even if its only small tidbits here and there. Sometimes it's best not to flood them with information – ever try to drink from a fire hose?
I wish I had one simple answer that would solve every gluten-free holiday and family situation, but I don't. If I did, my name would be Dr. Phil and I'd have a TV show.
Bottom line – if you cannot resolve any of the food issues, try to put that aside and focus on the people that love and care about you – that is what really matters.
Here are some tips to get you through the holiday season.
- If you are brand new to the gluten-free lifestyle, it might help to have some basic information. Please see GIG of ECW's Gluten-Free Diet Boot Camp article: http://bit.ly/GIGECW_GFBootCamp
- Plain turkey is most generally gluten-free. Read the labels to verify. Several brands will now say "Gluten-Free" or "No Gluten". Make sure it has not been pre-seasoned or marinated; seasonings and marinades may contain gluten. Some turkeys will have a gravy packet. Verify the GF status of the gravy before using. Better yet, ditch the gravy packet and make your own...you'll be glad you did!
- Like turkey, most hams are GF [read the label], however if it has a glaze, it must be checked.
- A list of some gluten-free turkey and ham options: http://bit.ly/GIGECW_Turkeys
- If the turkey has been stuffed with gluten stuffing, do not eat the turkey, it's been contaminated.
- Stuffing [gluten-free or not gluten-free] made inside the turkey is a food safety concern. If you cook the turkey long enough to properly cook the stuffing [to a temperature of 165], the turkey is dry and over done. If you cook the turkey until it's done, the stuffing may not have reached the food safe temperature of 165. Either way, it's not good eats. Make the turkey and stuffing separately.
- Cooking bags are commonly used to help keep meats moist. However, the instructions state a tablespoon of flour should be added to the bag and shaken. The flour prevents the bag from exploding. Ask your host about this ahead of time. FYI - cornstarch or gluten-free flour will work too. [I never knew about exploding bags, we always use a bag and never put flour in it.]
- Mashed potatoes, a GF piece of cake, right? Not so fast, some recipes call for a bit of flour [oh the humanity!]. Scalloped Potatoes is another dish that more than likely has wheat flour. FYI, some potato salad recipes also call for flour. If you don't know how the host prepares their potatoes, it's best to ask.
- Mainstream "cream of" soups are not gluten-free and so are any dishes made with them, [think Green Bean Casserole].
- Progresso offers their Cream of Mushroom soup, but it's not quite as condensed as actual condensed soup, but with some slight recipe modifications it can be used.
- Cornbreads or corn muffins often times have a mixture of cornmeal and wheat flour. There several mixes that are available. Krusteaz brand has a pretty good cornbread mix that's available in mainstream grocery stores. http://bit.ly/1pAUT9P
- Veggie & fruit trays are always popular. Be sure to survey the neighboring foods and assess cross contamination risks.
- Stay away from the butter dish. It's a crumb magnet!
- Be wary of communal chip or veggie dips. They might not be GF and they could be contaminated due non-GF snacks.
- BYOF (Bring your own food). Bringing a dish to pass ensures you'll have something you know is safe. We may feel a bit guilty about asking others to go out of their way to accommodate our requests. Good news! We have the ability be part of the solution instead of the problem. Politely ask the host what you can bring. Ask them to allow you to help. Let them know you want to ease their work load and worry-factor - not add to it - when it comes to making something safe for you. It helps to know what's on the menu so your dish will fit in with the others. Tip: Make sure you bring plenty for yourself and others.
- Open a line of communication early. It's a delicate topic, but you have to discuss GF food selection and cross contamination concerns with the host if they are not familiar with preparing gluten free dishes. Because they are not immersed in the gluten-free lifestyle, they'll need your help to educate and guide them. The education process is not a "once and done" event, it occurs over time. This is not on their radar 24x7x365, so they will need gentle reminders. Sometimes it's hard for people to grasp, so please be patient if they don't get it right away.
- Enlist the help of an ambassador. Sometimes it's easier to have another person to be an advocate for you. Ask a brother-in-law, sister-in-law, aunt, uncle, or cousin that you trust to help the host find gluten-free options for you. The more family members you have on your team the easier it will be.
- Make sure the hosts know that you appreciate their efforts. Thank them, thank them and thank them again.
- Eat [at least something] before you leave home, it takes the edge off of your hunger.
- If you like to cook, host the celebration yourself. This gives you ultimate control. If the guests ask to bring something, request things that are naturally gluten-free. Veggie tray, fresh fruit tray, an undressed salad, a bottle of wine or other beverages (not beer unless it's GF), vanilla ice cream (suggest a good brand). Don't be afraid to suggest non-food items: festive napkins, folding chairs, family favorite tableware, etc.
- If guests do bring gluten items, have a designated area for GF and NGF dishes.
Inspiration for this article goes to:
Quick Guide to Holiday Family Dining
Celebrate Gluten-Free Newsletter Fall 2014
Gluten Intolerance Group of North America
25 Tips for handling a GF holiday
Gluten-Free Living - December 2014
Al Klapperich – GIG of ECW Branch Manager
I'm sure I was a jumble of nerves. I was only 6 months gluten-zero, still trying to get a handle on all of this, not 100% confident in my food choices [no labeling regulations existed in 2003], worried I'd get sick, and then try to explain all of this to family members. GULP!
I have been graciously blessed and my heart is filled with much gratitude and thanks. I have an amazing wife that has always supported and believed in me, even when I doubted myself. Without her, I would not be what I am today.
I have the best family and friends. They respect my choices and always watch out for me.
The members of GIG of ECW and the gluten-zero community in general. It's you, my peeps, that inspire and motivate me, keep driving me forward as a human being and support group leader.
I am eternally thankful for what Melissa Diane Smith calls “The Gift of Gluten-Free”. All those years ago when I was lying on the living room floor in the fetal position, I could not have imagined what was in store for me [besides death]. I gave up gluten, but what I have received in return is beyond measure.
I realized that I was given an opportunity to use my skills and talents to help others. Heck, there were talents that I didn't even know I had! The biggest item unearthed in me was a passion – a purpose – something that was lacking in my life previously. I was given a gift, and I was shown how to give it away. It was a profound awakening.
I invite you to think about your gluten-zero life and list the items for which you give thanks. Consider all aspects of your life – physical and mental health; your relationship with friends and family members; your eating habits; your spiritual practices [things that feed your soul]. You might be surprised at the number of items you have on the list!
I also invite you to inventory your gifts and find out what can be given away. What you receive in return may rock your world. You won't know until you try.
Stay strong. Be well.
Your humble servant,
Al Klapperich – GIG of ECW Branch Manager
~ Steve Jobs
The Gluten-Free RN shared this quote on Facebook. Yes, Facebook can be useful and is not a complete waste of time. Steven's words struck a very loud chord in me, much like the startup chime of the Apple Macintosh that Steve Jobs created. The late Steve Jobs imparted this bit of wisdom to the 2005 graduating class of Stanford University. Regardless of Steve's intended audience, I feel these words are quite useful for the gluten-free/zero community, even almost a decade later. Steve Jobs was a visionary on many levels.
Members of the gluten-free/gluten-zero community have endured a good bit of bashing as of late. Considering the increase in mainstream awareness, I suppose some abuse might be expected. Late night talk show hosts airing "Man on the street" interviews asking "What is gluten?" - with embarrassingly incorrect answers. Improperly researched and inaccurate information published in newspaper/magazine/ internet blogs, social media sites like Facebook/Twitter/Tumblr allowing anyone to offer up their [educated and uneducated] opinions on such topics. We can't forget those closest to us - sometimes they can be our toughest critics - perhaps thinking we're just being trendy, wanting attention or special treatment. Yeah, right, we're nothin' but drama queens...
Add to this cacophony, the mainstream medicine dogma that still exists when it comes to gluten-related disorders. Even though celiac disease is one of the most common life-long disorders, it's still vastly under diagnosed; and don't even get me started on Non-Celiac Gluten Sensitivity. Healthcare professionals do not recognize the "clinical chameleon" that sits in their exam room. The medical community has come a long way, but many are still behind the times holding fast to what they were taught in medical school - celiac disease is rare and only presents with weight loss and diarrhea. You and I know this is total crap [pardon the pun].
Many in the community will be able squelch all the negativity going on around them. You, who are active in a support group, and those that have properly educated themselves have gone through an annealing process to harden your resolve. I do worry about those that are just starting their journey back to health. For certain, all of that negativity can be emotionally taxing and mentally distracting. Lord knows, I get tired of it. Do they have enough knowledge and commitment to stay the course? Blocking those external voices could mean the difference between success and failure.
Mr. Jobs was right - our time is limited, and we need to maximize every second we are in an earthly-form. "Sick, tired and grumpy" is not the way to go through life. We need to focus on the positive, stand up and advocate for ourselves when it comes to our health. We must block out the noise that can overpower our inner voice - the voice that tells us what it takes to keep our bodies happy and healthy.
I will leave you with these 5 daily disciplines to stay in a positive state of mind.
2. Write a gratitude list
3. Fill your mind with positive messages
4. Surround yourself with supportive people
5. Stay Active
More details on the disciplines: http://bit.ly/PositiveMindTips
Stay strong. Be well. Keep moving forward!
Gluten Intolerance Group of East Central WI
I often get asked for information on celiac disease and gluten-free. Either it's someone that is just starting to investigate gluten as the source of their health issues, or it's someone that is just newly diagnosed and looking how/where to start. So, I gathered up a bunch of resources and created this document. The original Gluten-Free Diet Boot Camp was created in 2005. What you see here is an updated version of it.
I am throwing A LOT stuff out here, please don't let it overwhelm you. If your head starts spinning, stop reading for awhile. While it may be very confusing to you right now, please know that it does get easier - it really does.
Alan Klapperich - Branch Manager
GIG of East Central Wisconsin
Revised: 11/27/16 - see bottom of page for details
Note: Before traveling too far down the gluten free path, it is best to get tested for celiac disease and/or gluten sensitivity. Why? In order for testing to be as accurate as possible, you must be consuming gluten.
More information on celiac disease screening: http://bit.ly/GIGECW_CD_Screening
After you’ve been told you must go gluten-free, you naturally think, “Now what am I going eat?”. The more you think about it, the more you realize how big a task this is going to be. When faced with a large task I like to break it down into smaller, more manageable chunks. It makes things less overwhelming if you can focus on one small task at a time. Remember, more than likely you didn't get into this situation in one day, so how can you expect to know everything about a gluten free diet in one day?
The most important tool you can have when dealing with this is KNOWLEDGE. Knowledge means health. The more you know (about yourself, about your food, about this condition), the better you will feel.
Step 1 - Relax. This is not the end of the world! While it will take some time (it took me about 3 months to get used to it and one year to feel fully comfortable) for you to settle into the GF lifestyle, it is very do-able. It takes a bit of knowledge and a bit of planning. Many people all over the world live this way. Currently, it is now easier to maintain a GF lifestyle than any other time in history. More & more the awareness of this is being brought to the forefront of our society. Is it where it needs to be? Certainly not! But things are going in the right direction. There are so many GF food options now (this doesn't mean they are generally healthy though). Gone are the days of 20 years ago when it was the rice and banana diet. Fear not...you will not starve! The good new is that there are many, many foods that are naturally gluten-free - and darn tasty!
Understand that you may go through a grieving process upon giving up gluten and leaving your old lifestyle behind. This is common, normal and healthy. Do not suppress these emotions - recognize them and deal with them.
Step 2: Identify & remove the obvious foods from your diet. This is usually quite "easy" to do. I don't mean emotionally or physically easy to do, but easy to identify. Gluten is generic term for the proteins found in wheat (durum, graham, kamut, semolina, spelt), barley, rye & triticale (hybrid of wheat & rye). Any product made with or contaminated by these ingredients is off-limits - breads, crackers, cereals, pasta, pizza, cakes, pies, cookies, many soups, etc. Don't forget beer.
Whole foods are foods that have little or minimal processing done to them. Anytime a food is processed, there's a good chance gluten is added to it either by design or by accident [cross contact].
Think fresh fruits and veggies, plain meats, poultry, seafood, eggs.
Avoid products with marinades, sauces or seasonings-they may contain gluten.
Finding gluten in a head of lettuce or a bunch of carrots is pretty hard to do. After you start to feel better you can branch out a bit more in to the processed food if you wish, however I know many people stick to the whole foods.
Tip: Stick to foods with short ingredient lists - the shorter the better. It's better for you and requires much less reading. The best - single ingredient foods.
Step 3: Look for hidden gluten. This may take you some time for figure out. You WILL become a label reader. In order to stay healthy you will need to check every ingredient in every product you come in contact with - both ingested and topical. Be prepared to spend a couple of hours getting groceries. It will take that long due to label reading. After you read a few labels, you'll know why I suggested focusing on whole, single ingredient foods. Processed foods are a minefield when it comes to reading labels to determine if there's gluten. Not much to read on a head of broccoli, a bag of carrots, a head of lettuce, etc.
If you do buy processed/packaged foods check the ingredient label. If you see any of these words: Barley, Malt, Malt Flavoring, Malt Vinegar, Rye, Triticale, Wheat (Durum, Graham, Kamut, Semolina, Spelt), Brewer's Yeast - put the product down. If you can't tell from the ingredient list, call the manufacturer and ask them. Also look for a gluten-free certification. This seal tells you the manufacturer has specific standards, policies & procedures for making gluten-free foods. If you are unsure about a product, don’t eat it.
Avoid commercial or mainstream oats [think Quaker Oats] or products that use them because they can have high levels of gluten due to cross contamination. Pure, uncontaminated gluten-free oats can be tolerated by many, but for right now - this minute, no oats. Oats have been controversial for decades, please look at all the information before you decided to add oats to your diet. Please see our Oats section below for more information.
Other areas to look for gluten - medications, vitamins/nutritional supplements, cosmetics, soaps, shampoos, toothpastes, etc.
If a gluten-free food has cross contact with gluten, it’s off-limits. It only takes a crumb for many to get sick. Crumbs matter? Yes crumbs matter! It only takes a small amount of gluten to put your body into an inflammatory state.
ZERO gluten should be the ultimate goal for everyone following a gluten-free diet.
Have you double dipped in the peanut butter, Mayo jar, jam/jelly jar, butter dish, etc.? It's contaminated.
The best thing to do is go on a cleaning spree. Remove everything from your cupboards. Toss the gluten filled/contaminated junk and meticulously clean everywhere with hot soapy water - changing it often. Even move the stove and fridge!
A gluten-free diet is not like a diabetic diet where you can balance it out. There is no room for cheating. Everyone one will have different sensitivities to the gluten they might ingest. Some may be dreadfully sick for days/weeks from the smallest crumb. Others, may only have reflux, gas, bloating. Some won't have any reaction at all! Even though you may not be able to feel the effects of gluten, your body's immune system is in overdrive. Not adhering to the diet leads to nasty outcomes...the possibility of cancer and a cascade-effect of other auto-immune diseases.
Step 4: Join a local support group. As good as online sites are, there is nothing that can replace face-to-face, human interaction. They can direct you to local resources. Support comes in many different ways. Let's face it, any time you make a lifestyle change, it's not easy! It's not easy for you, it's not easy for your loved ones. Often times spouses, family & friends may not always understand exactly what you are going thru. They may not understand how vigilant you must be at keeping gluten out of your diet. In fact, unsupportive friends and family can be a huge detriment to your success; surrounding yourself positivity gives you the best environment to flourish.
One way to make it easier is to meet with others that walk in your shoes. They know where you've come from, they know what you're going through. They understand. Understanding is not something you always find in the gluten free lifestyle. You find out that you're not alone.
Connecting with others that share your same situation can give you a huge boost emotionally and physically. Many others experience the same trials and tribulations you do.
Gluten Intolerance Group of North America: Celiac Disease
Gluten Intolerance Group of North America: Non Celiac Gluten Sensitivity
Gluten Intolerance Group of North America: Getting Started
Gluten Intolerance Group of North America: Reading Labels
Gluten Intolerance Group of North America: Educational Bulletins
Gluten Intolerance Group of North America: Quick Start Diet Guide
Gluten Intolerance Group of North America: The Gluten-Free Nutrition Guide - Optimizing the Gluten-Free Diet
Gluten Intolerance Group of North America: Easy-to-Find and Easy-to-Fix food ideas PDF
10 Must-Do's for Newly Diagnosed Celiacs by Jules E. Dowler Shepard
A collection of lifestyle management articles that I've written.
Grain-Free for the Gluten-Free
May Contain - Voluntary Advisory Statements
Becoming a Gluten-Free Champion
What Oats Through Yonder Package Breaks?
The Risks of Cheating
Navigating the Holidays
Confusing Ingredients - GF or Not GF?
Back to School Resources
Guide to Gluten Cross Contamination
Grieving the Loss of Gluten - (Published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Winter 2013)
Lack of Support From Family - (Published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Spring 2013)
Educating Family & Friends About Gluten-Free - A collection of resources I assembled over the years to educate others. Includes a Powerpoint presentation I did for our church.
A Day in the Life: Living in a Mixed House - This is how we deal with having gluten in our house (I'm GF, my wife is not, but she's getting closer. YAY!)
Better Living Thru GF Chemistry - A primer on medications.
Gluten-Free Cosmetics and Hair Care Products - Gluten on the Skin?
GIG of ECW Newsletters
A list of WI support groups :
Search for a support group in your area:
Celiac Disease: A Hidden Epidemic (Revised and Updated Edition)
by Peter H.R. Green M.D. and Rory Jones
Gluten Freedom: The Nation's Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle
by Alessio Fasano M.D. and Susie Flaherty
Gluten: Worth the Risk?, Gluten-Related Disorder: Sick? Tired? Grumpy?, Gluten: ZERO Global, Gluten Brains: the brain-grain connection, The Gluten Syndrome: is wheat causing your harm?
by Dr. Rodney Ford
The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed
by Jules E. Dowler Shepard
Journal of Gluten Sensitivity
Living Without's Gluten-Free & More
GF Recipes can be found simply by searching the internet. There are so many bloggers and websites that offer GF recipes, it's amazing. A lot can be found on Facebook.
Here are just a few...
Recipes for most of our meals are posted on our group's website, as well as Peggy's [my wife] baked goods
You'll notice that many of our recipes are pretty simple. I really like taking simple ingredients and making amazing meals. It's truly a case of "The whole is greater than the sum of it's parts". We do a fair amount of entertaining and hosting of family events [because we both like to cook and because it's easier for us to control the food]. Our goal is to show that gluten-free food is not taste-free, crappy food. We are successful at it if I do say so myself.
Gluten-Free Girl and the Chef (Shauna James - well known GF blogger)
Ginger Lemon Girl
Beth Hilson (founder of Gluten-Free Pantry Products)
Annalise Roberts - Gluten-Free Baking Archive
Annalise Roberts - Gluten-Free Cooking Archive
Betty Crocker Gluten-Free Recipes (General Mills)
This is a published list of products that are gluten-free. Please keep in mind, you still need to read labels and sometimes verify GF status with manufacturers as ingredient lists can change - generally without notice. Use this guide, as a guide, not as the sole means of determining the GF status of a food.
A review of the top 10 GF apps:
Some ingredients can be quite confusing. Check out these links for some clarification...
The safety of oats for those on a gluten-free diet is a topic that has been debated for decades...and it still continues today. Please research this topic carefully before making your decision about oats.
What oats are used in gluten-free products?
This article examines the difference between Purity Protocol Oats vs Mechanically/Optically Sorted oats…and why it matters.
I can't eat gluten. Can I safely include oats in my gluten-free diet?
By Jane Anderson
Canadian Celiac Association
Position Statement on Oats
The safety of oats in individuals with celiac disease has been extensively investigated. Clinical evidence from numerous studies indicate that consumption of pure oats, uncontaminated with gluten from wheat, rye or barley, is safe for most individuals with celiac disease in the amount of 50 to 70 grams per day (1/2 – 3/4 cup dry rolled oats) for adults, and 20 to 25 grams per day (1/4 cup dry rolled oats) for children with celiac disease. These studies were up to seven years in length, used uncontaminated oats, but involved a limited number of subjects.
A small number of individuals with celiac disease may not tolerate even pure, uncontaminated oats. To ensure that persons with celiac disease are not intolerant to pure, uncontaminated oats, before incorporating oats into their diet they should be well controlled on a gluten-free diet, with no gastrointestinal complaints.
In Canada and the USA, pure and uncontaminated oats are produced by specialty manufacturers. These oats have been grown on dedicated fields; stored, transported and processed in a dedicated gluten-free facility and tested for gluten. These oats should not exceed the action level of 20 ppm (parts per million) of gluten as detected using current available methods. Individuals s with celiac disease and other gluten-related disorders who wish to add oats or oat products to their diet must ensure that the oats they are eating are free from contamination with gluten from wheat, rye and barley. Oats available in the marketplace labeled as “pure” are not free of gluten contamination and should not be consumed.
The Canadian Celiac Association’s (CCA) position on the safety of pure, uncontaminated oats is supported by Health Canada. Their review entitled Celiac Disease and the Safety of Oats is available on the Health Canada website
The safety of oats in non-celiac gluten sensitivity has not been studied. The CCA will continue to monitor the scientific developments in the area of oats in celiac disease and other gluten-related disorders and will keep its members updated.
Professional Advisory Board
Canadian Celiac Association
These guidelines under review by the CCA Professional Advisory Board, June 2014
Celiac Support Association (CSA)
Oats appear to be suitable for most people with celiac disease and gluten-related disorders, but not all. Medical experts advise waiting until symptoms have resolved before introducing pure, uncontaminated oats (labeled gluten-free). For some, this could mean delaying the introduction of oats for a year or longer. The current medical recommendation for adults with celiac disease or gluten-related disorders is to limit consumption of dry oats to no more than 50 grams per day (50/g day is equivalent to about 1/2c dry oats) and 25 grams per day (25g/day is equivalent to about 1/4 cup dry oats) for children. The CSA Three Step Diet approach to celiac disease and gluten-related disorders can be used as a framework for introducing foods such as pure, uncontaminated oats.
The FDA’s current proposed definition of gluten-free does not include oats as a prohibited grain. Therefore consumers sensitive to oats or different oat varieties will need to check ingredient labels closely when a final ruling is determined.
CONTAINS: Avenin, in Oats contains similar amino acid sequences as wheat gluten and can evoke the immune response of celiac disease for some people. Oats storage protein toxicity is not the same in all varieties of oats. Today, there is no way to predict ahead of time, which celiacs will or will not be able to successfully consume oats.
Gluten-Free Works - Why Oats Should Be Excluded from the Gluten-Free Diet
by Cleo Libonati, RN, BSN
Individuals with celiac disease vary in their immune reactions and symptom responses to gluten in wheat, barley, rye and oats. It is clear that oats are not a safe grain for all patients.
Prudence dictates that oats should be avoided until large-sample, long-term tests on oats are performed, strains of oats that do not elicit immune reactions are discovered, and tests that can accurately determine whether a patient reacts to oats become available.
On a personal note, my broad experiences with the gluten-free community reveal a sizeable number of individuals with celiac disease who do indeed react to oats in the same way they react to wheat, barley and rye. In speaking to gluten-free support groups, I would estimate at least 10% of people say they react to oats.
National Foundation for Celiac Awareness
A special caution must also be delivered when it comes to oats. While oats in their natural form do not contain gluten, a small portion of patients with celiac disease react to oats in their pure, uncontaminated form. Some literature suggests that a protein in oats can trigger a similar response to gluten. Additionally, most mills that process oats also manufacture gluten-containing grains, making the chances of cross contamination inevitable.
The best advice we can offer is to take a great deal of care before introducing oats into your diet, which includes speaking with your healthcare provider about this dietary change. There is no way to determine if you will react, so proceed with caution. Verify that the oats you are using are “pure, uncontaminated,” “gluten-free,” or “certified gluten-free.” Experts recommend that up to 50g of dry gluten-free oats are considered safe. Check nutrition labels for portion size.
University Chicago Celiac Disease Center
A large body of scientific evidence accumulated over more than 15 years has proven that oats are completely safe for the vast majority of celiac patients. Oats are not related to gluten-containing grains such as wheat, barley and rye. They don’t contain gluten, but rather proteins called avenins that are non-toxic and tolerated by most celiacs (perhaps less than 1% of celiac patients show a reaction to a large amount of oats in their diets).
Oats can be in a celiac’s diet provided they are selected from sources that guarantee a lack of contamination by wheat, rye or barley.
Some who add oats to their diet may experience GI symptoms. This may actually be a result of the increased fiber that oats provide instead of a reaction to the oats themselves.
Remember: Use published lists wisely. Always read the product ingredient list. If you're unsure, call the manufacturer [even from the store] and ask. GF status checks are generally the #1 type calls customer service reps get.
Also be conscious of the amount of processed foods you consume. Try to use them sparing or even better, not at all. Many in the GF community feel their best when all processed foods have been removed. Keep in mind, fine tuning your diet is a work in progress; you keep tweaking it so you can be at your best. Making the leap to gluten-free can be a daunting task, GF processed foods could be used as a stepping stone to help make that transition a bit easier. Everyone handles change differently. You need to figure out what works for you, what gives you best chance a success.
Tip: When checking the ingredient labels, use the 3-times rule. Read the label when you purchase a product, when you put it away in your pantry and again when you retrieve it to use. This will help minimize mistakes.
Tip: Stay away from naturally gluten-free foods in bulk bins - cross contamination risks are too high
Betty Crocker (General Mills)
Campbell's GF Products
Celiac Disease Foundation's Gluten-Free Resource Directory. This is a massive list of various GF products
Del Monte Products
Gluten Intolerance Group's Easy-to-Find and Easy-to-Fix
Festival Foods Gluten-Free Webpage
(We have Festival Foods about 20 miles away):
Note: Festival Foods Deli is not a dedicated gluten-free environment. However, their staff has participated in the National Foundation for Celiac Awareness GREAT Kitchens Program. A training program to educate food service professionals on gluten-free food preparation and cross contact.
The products I have listed here should be able to be found in any well stocked mainstream grocery store. Some items might be easier found at healthfood stores - often times they have a nice gluten-free section. You can also order from Amazon.com - they've got A LOT of GF foods, but you need to order by case-lots.
Udi's bread & bagels. This bread is found in the freezer section - http://udisglutenfree.com/
Mission Corn Torillas Most times I will put sandwich meat in corn tortillas.
RP's Gluten-Free Fresh Pasta - http://www.rpspasta.com/gluten-free-pasta/
Jovial Pasta - http://jovialfoods.com/gluten-free.html
Schar Pasta - http://www.schar.com/products/us-pasta
Tinkyada Rice Pasta - http://www.tinkyada.com/
*Pasta is listed in order of preference.
Pamela's Pancake & Baking Mix. This makes really good GF pancakes or chocolate chip cookies!
Van's Frozen GF Waffles - Be careful - Van's also have non GF products
Betty Crocker Chocolate Cookie Mix, Brownie Mix - almost any store will carry these. They are found next to the regular gluten-full cake mixes.
Udi's premade pizza crusts - Found in freezer case.
Kinnikinnick pizza crust - Found in freezer case
Pizza Toppings (note: these items are what I use, but there are other brands/products): Any favorite veggie. Hormel Pepperoni. Contadina Pizza Sauce (Original, Four Cheese, Pepperoni, or Pizza Squeeze in a bottle). Any brand name shredded cheese. Always remember to read the ingredient labels!
Gluten-Free Candy (updated October 2016)
Hershey's Gluten-Free List
Dining out is also a minefield. All too often, restaurants don't understand the intricacies of properly preparing gluten-free food. The risk factor for gluten cross contact is generally quite high. However, with proper training food service professionals can successfully create delicious gluten-free food.
In many cases, the restaurants that do the best job have a family member that must be gluten-free. They understand the workings of a busy kitchen and educate their staff how to keep their guests [and family members] safe.
There are many in the gluten-free community that do not eat out at all. They simply won't risk their health for a meal out. This is a personal choice that we all have to make.
Gluten Intolerance Group of North America - Restaurant Dining: 7 Tips for Staying Gluten-Free
Gluten Intolerance Group of North America - Restaurant Cards (for purchase)
Gluten Intolerance Group of North America - Quick Reference Ingredient Card (for purchase)
Triumph Dining - Restaurant Cards
Living Without - Let's Eat Out: Tips for Safe Gluten-Free Restaurant Dining
ThivingWithCeliac.com - Top 10 Questions to Ask When Dining Out:
Info about GF apps (many about dining):
Here are some local dining options for you to investigate:
Happy Bellies Bake Shop (Appleton)
Molly's GF Bakery (Pewaukee)
Updated Candy Lists
Updated various links
Updated Canadian Celiac Association's position on oats
Added GIG's The Gluten-Free Nutrition Guide - Optimizing the Gluten-Free Diet
Added: GIG's Easy-to-Find and Easy-to-Fix Link, LiveBetterAmerica.com Recipe Link, Annalise Roberts recipe link, Happy Bellies Bake Shop
A collection of back to school info for those with celiac disease...
Gluten Intolerance Group of North America - Understanding your Student:
http://bit.ly/2spBQT0 PDF Version
Gluten Intolerance Group of North America - School Trip Letter:
http://bit.ly/2spoxSF PDF Version
Gluten Intolerance Group of North America - Letter to Teacher:
http://bit.ly/2rvP5BL PDF Version
Glutenfreeda - So Your Child Has Celiac: First Steps for the Classroom and Beyond: (added 8/21/16)
Twin Cities ROCK - Navigating School and Daycare with a Gluten Free Diet:
Accommodating Children with Special Dietary Needs in the School Nutrition Programs:
Canadian Celiac Assoc's Teacher Info handout:
Boston Children's Hospital - Raising a Child with CD - Safe at School, School Environment, 504 Plan (download "Celiac Support Group School Packet"):
Verywell.com - Creating A 504 Plan For Your Gluten-Free Child:
Celiac Disease Foundation - Back-to-School and 504 Plan Guide: (added 8/22/15)
MassGeneral Hospital/Center for Celiac Research and Treatment - 504 Planning for Your Student with Celiac Disease: (added 06/02/17)
National Foundation of Celiac Awareness - Navigating the School System:
The Kids are Back in School - Tips for Making the (Gluten-Free) Grade by Danna Korn:
Gluten Free Art Supplies - note this links to a post that is old - please verify products are still GF
Soy-yer Dough (Gluten-free, non toxic and fun scented modeling dough)
The Savvy Celiac - Approaching your School about Gluten-Free Foods (2009)
The Savvy Celiac - Managing Gluten-free in the Classroom (2009)
The Savvy Celiac - Must Daycare Provide Gluten-Free Food? (2009)
06/03/17 - Removed CSA link, updated CDF link, shortened all links
06/02/17 - Add MassGeneral 504 link.
08/21/16 - Added Glutenfreea website.
05/27/16 - Remove American Celiac Disease Foundation links - website gone.
08/22/15 - Added CDF - School and Education Benefits Link
08/19/15 - Removed broken link. Updated CSA's Getting Along at School link. Added Soy-yer Dough Link
08/05/15 - Added NFCA's Back to School Toolkit
07/29/14 - Added Daycare Rights for your Celiac Children
05/21/14 - Updated broken links
Separate - Don't Contaminate!
Basic kitchen safety rules tell us that we need to separate ready-to-eat foods from raw meats, poultry, seafood and eggs - and to use separate cutting boards and utensils to reduce the risk of food poisoning.
The same rules apply to gluten and gluten-free foods - they must be kept apart!
The recipes found on our website are made with gluten-free ingredients. The food must also be prepared properly so it remains gluten-free. If you are preparing foods for a gluten-free guest, you must be ever mindful of cross contact.
This guide will help you to understand and prevent gluten cross contamination.
Before you start you need to know a few basics.
What is gluten?
Where is gluten found?
What does gluten do?
Think of gluten as a poison. How much arsenic would you like in your food? Very good, I thought you'd say zero.
Not only must the food be gluten-free, it must not come in contact with any gluten. The concept of “a crumb will hurt you” is hard for people to understand because it involves very small amounts.
Yes, crumbs matter!
Here's a perfect illustration. An average grain of rice weighs 28 milligrams. Now, divide that grain into 3 pieces. Those pieces are 9.33 milligram each – just under 10 mg limit.
Mind blown? There's more...
Many can not consume even 10 mgs of gluten without getting sick. Many in the gluten-free community strive for and attain ZERO gluten.
ZERO gluten should be the ultimate goal for everyone following a gluten-free diet.
Double dipping is strictly prohibited. Master the fine art of “Gob Dropping” or using a couple of spoons & knives to accomplish the task.
Purchase squeezable containers when possible.
Same goes for stirring or serving. Always use a clean utensil for gluten-free foods.
Have dedicated utensils for only GF use.
Please purchase new products that use shared utensils or have been contaminated.
Do not boil gluten-free pasta in water that previously boiled gluten-full pasta. Use fresh water for GF pasta.
It's best to designate a gluten-zero prep area where no gluten is allowed.
Toaster bags could be used in a pinch. You put your bread in a bag, then inside the toaster
Toaster Ovens w/Fixed racks - line with foil. Might not work well for actual toasting, but works well for heating.
Toaster Ovens w/Removable racks - Purchase and mark another rack for GF use. Foil existing rack or clean.
Either turn off the convection feature (circulated air) or make sure you have tight fitting lid on your gluten-free dish
Have dedicated GF cookie sheets
Those living in a mixed house will have dedicated gluten-free utensils, cutting boards, colanders, etc. It helps to have them color coded.
If cleaning or replacing isn't an option – grill your GF items on aluminum foil.
Have a marked & dedicated GF chip dip bowl.
If no room for separate GF/NGF foods, hold back some of the gluten-free foods before they are placed out for service. Tell your GF guests where to find these items.
Invite if your GF guest to go thru the line first – before any of the GF dishes have a chance of getting contaminated.
Clean these items the best you possibly can - it's tough.
“Producing Gluten-Free Products in a Non-dedicated Kitchen”
Gluten Intolerance Group of East Central Wisconsin
“A Day in the Life: Living in a Mixed House”
Gluten Intolerance Group of East Central Wisconsin
“Gluten-Free Diet Boot Camp”
Gluten Intolerance Group of East Central Wisconsin
“Educating Family and Friends about Gluten-Free”
04/22/17 - Removed bad link.
04/29/15 - Added "A Day in the Life: Living in a Mixed House".
04/22/15 - Updated GIG links and updated Printer Friendly version.
01/31/15 - Added AllThingsGF.com Cross Contamination page link
06/21/14 - Add convection oven
12/27/13 - Fix broken links
10/20/2013 - Clarify terminology
If you are struggling with grief and giving up gluten, I hope this of some help.
Al - GIG of ECW Branch Manager.
This article was published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Winter 2013
I think it's safe to say that every gluten-free person has ridden an emotional roller coaster on their journey to health. People suffer for years [6 – 10 years on average]; endure numerous doctor's office visits and usually walk away with more questions than answers. Frustrating to say the least. The result of finally getting answers to the on-going health issues brings an immediate sigh of relief, almost a giddiness. “WHEW, I finally know what's wrong with me!”
All too quickly that euphoria dissipates. The reality of the situation rears it's ugly head - “What am I going eat and how am I going to handle this?” Convenience – gone. Care-free dining – adios. The joy of family gatherings - replaced with dread and worry. Things that took little or no thought - now rivals the logistics of a Mars Rover launch. Buckle up tight, this is could be a bumpy ride.
Having to go gluten-free means experiencing a massive jumble of emotions. The biggest and probably most complex is grief.
In 1969, Dr. Elisabeth Kübler-Ross shared her experiences working with over 500 terminally ill patients in her well known book “On Death and Dying”. In this book she describes her Kübler-Ross Model [more commonly known as The Five Stages of Grief].
Even though this framework was initially seen in terminally ill patients dealing with their diagnosises, it has been applied to any type of grief/loss situation – loss of a loved one, a divorce, a job, a limb, a pet, a food, an old lifestyle – any life changing event.
The grieving process is important and necessary when someone experiences a significant loss. It's normal, it's natural, it's healthy. It's often hard to look beyond the big black wall that stands before you. As daunting as it is, it must be dealt with. Repressing or suppressing grief is detrimental to our well-being resulting in a variety of emotional and physical symptoms (headaches, gastrointestinal problems, heart palpitations). Just as we are working towards a healthy gluten-free body, we must work on a healthy mind/emotional state as well.
Processing those thoughts, feelings and emotions is intense work, but it helps us to accept what has happened. Grieving forces us to create a “new normal” out of our loss - whatever that new normal may be. We have power to create whatever we wish!
The grief cycle of Denial – Anger – Bargaining - Depression – Acceptance (DABDA) is unique to each individual. Everyone deals with trauma in their own way. These stages are not rigid or sequential in their order. We don't always move through the cycles in the described order, nor do we always experience each and every stage. Transition between the stages can be fluid; subject to the ebb and flow of emotions. Some stages might even be revisited.
Let's take a closer look at each stage and see how it relates to the loss of our gluten-full lifestyle.
Denial – A protection mechanism. It helps us to mask the pain of reality while we figure out how to handle the loss.
“No, it's not gluten, it's the < insert any food besides gluten >.”
“I feel fine except for my headaches, depression, and maybe this itchy skin thing, and maybe frequent trips to the bathroom. Heck our entire family is like this – it's normal.”
Anger – After the denial wears off; reality and pain comes flooding in resulting in anger. This emotion can be directed at anything or anyone, even ourselves. Due to the years of mis-diagnosises, the medical profession often times takes the brunt of the aggression.
“Gluten is in everything! What am I supposed to eat?”
“I want my old foods back. I can't have my favorite birthday cake. I can't go out with my friends. This sucks!”
“Gluten-free food is so expensive and it tastes terrible.”
Bargaining – The “What If” stage. We start asking questions of ourselves but also a higher spiritual power. We try to seek a compromise in an attempt to regain control of the situation.
“OK – just this one last cheat day...then I'll be good”
“Please God, I'll do anything – just don't take away my pizza”.
Depression – The reality of the situation is becoming even more evident. We start feel sadness, regret, fear, uncertainty. We are preparing ourselves for the “aftermath” of the things to come. We are in the early stages of accepting our new reality.
“Everybody else gets to eat anything they want and I can't”
“My life is over, it will never be the same.”
“No one understands what I am going through.”
Acceptance – Not everyone reaches this stage. Some may not even be willing to call it “acceptance”, but a mere “willingness to move forward”. While they may sound similar, there is a difference between truly “owning it” and “just doing what it takes to get by”. When there is full acceptance, there's a sense of calm – a feeling that all will be OK.
“You know, this isn't bad. I'm finding GF replacements for my old favorites”
“WOW! I've been GF only two days and I feel so much better.”
“Gluten-free doesn't have to mean taste-free, crappy food. I can rock this..."
Embracement – No, this is not one of the original stages, but others feel [myself included] this should be the sixth and final stage for those living a gluten-free lifestyle. With embracement we focus on the positives and benefits that the gluten-free lifestyle offers. We dive in to our new normal head first. We advocate, educate and help others that we come in contact with.
“People ask me to help them go gluten-free. It's great!”
“I wanted to help others, so I started a celiac/gluten-free support group in my town.”
Practical Ways to Cope in the
Dr. Kenneth W. Matheson
Local support groups have so much to offer when it comes to helping people deal with their new gluten-free life.
My Personal Path
Just as we all react differently to gluten, we all handle the grieving process in our own way and in our own time. A while back, I was asked how I handled the process of ditching gluten. Looking back, I don't feel I went through all of the stages.
Denial – I was sick and seeking answers, no denying something had to change.
Anger – I was upset with the medical profession but realized I had to let that go.
Bargaining – Nope, I was sick and wanted to feel better and would do anything to do so.
Depression – Minor, but I attributed it to being sick, not from giving up gluten.
Acceptance – I was ready to accept anything that made the problem go away.
Embracement – I'm all about that!
Below you will find the things the helped me find gluten-freedom. This was my path to a “new normal” without gluten.
Faith – While it may not be popular to talk about a higher spiritual power, it was an important factor in my own journey. Through-out the entire process, I didn't know why I was going through it, but I knew there was a reason for it. Later I would discover that I was being given a passion and a purpose; what an amazing gift!
Knowledge - I tend to throw myself into things to learn about it. When I was sick, I turned to the internet searching for answers or clues. I find that the more I know about something, the less afraid I become. The less afraid of it, the better I am at figuring out how to handle it.
Creativity – Even before I had to give up gluten I liked to cook. For me cooking is a creative process, much like all the other creative processes I enjoy. I guess I like the process of creating, regardless of what or how it is being created. With cooking I was faced with a challenge of using new [and often times unfamiliar] ingredients to create new and exciting foods as well as re-create healthier versions of old favorites. I was determined not to let gluten win this challenge. Creativity to the rescue!
Support - I was lucky when I stumbled across gluten as a possibility of my problems. I happened upon a discussion board that had a few people that really helped me figure it all out and how to deal with this. I had an online support system.
Not only did I have an online support system, I was lucky enough to have a very supportive spouse, friends and family. I don't think too many people outside of my wife fully knew what I was going through, how scared I was or how sick I really felt.
Having a support system to help you through those dark times is a tremendous advantage. They watch out for you and help guide you when you need guidance. Even though I didn't want to socialize with others, my wife was wily enough to convince me to go hang out with our friends or attend family functions. Once I got there, it did boost my spirits and made me feel better. Perhaps my wife couldn't fully understand what I was going thru [like another gluten intolerant might], but she was a sympathetic ear when I needed to vent, a shoulder to lean on when I wasn't sure I was doing the right thing. When I did need another “insider's” perspective, I had the online people in my corner.
Stepping outside - Throughout the time that I was figuring out my issues, I realized that I was gaining knowledge that could be of use to others. I could take what I was learning and help others. This allowed me to step outside of myself and my own problems.
I started by contributing to the very same online discussion boards that helped me. There were others just starting out – just as lost, dazed and confused as I was. Starting a local support group took the process to another level. It's an amazing feeling.
While it may appear that I was ignoring my own emotional state, I feel “doing for others” helped me to understand & process the feelings I was having. I quickly realized that I getting an extreme emotional boost from helping others. I consider this aspect most important for me. I found that my issues/situation was far from what others were experiencing. I found that I was quite lucky in the grand scheme of things. Pretty soon, things were lookin' pretty good in my household.
I don't think anyone likes to experience the pain of a loss. Unfortunately it's a simple fact of life; there is no way to escape it – much like death and taxes. It's just part of the whole “Human Experience”.
Grief is messy, contradictory and confusing, but it gives us a way to make sense of our world and what we are experiencing. It's a way for us to regain control of our lives; it allows us to let go of our sick and unhealthy past and prepare for a better, healthier version that is waiting to be claimed.
We will run into obstacles, we may stumble and fall on our journey. No one ever said the path to gluten-freedom was easy. The important thing is that we always, always always get back up and keep moving forward. We are in control and have the keys to unlock the door to our new life.
Nuova vita! New life!
Until next time...
Al Klapperich - Branch Manager
Other resources used in this article:
The 5 Stages of Loss and Grief
By Julie Axelrod
After a Gluten-related Diagnosis: Grieving and Smiling?
By Ursula Saqui, PhD
Grieving Gluten: The Five Stages of Loss of Gluten Plus a New One
By gfe's Shirley Braden
Finding a New Normal
By Jan LaPitz
Life After Loss: Dealing with Grief
Univ. of Texas at Austin
We all grieve in our own way
By Vaughan Bell
Sadly, this state of affairs is very common. In some cases, it goes beyond a simple lack of support, it crosses over into deliberate sabotage or willful "poisoning" of food.
Those that love us the most, can give us the most trouble about our desire to be at our best. This type of behavior is not limited to the gluten free community; it's quite prevalent in many with chronic health issues.
Fear and Denial and Insanity, oh my!
Why would someone that loves us not want to support us in anything we do - let alone something that might improve our health and quality of life? I suspect there are hundreds or thousands of different answers, unique as the fingerprints of those providing the answers. One of the most common opinions from GF community is fear.
Family members are afraid the health problems we are experiencing are closely connected to their own health struggles. If we are correct about the root cause of our troubles, that just might mean they have to go gluten-zero as well. In terms of celiac disease, it's hereditary, no ifs ands or buts. If you have celiac disease there is a 1 in 22 chance that your immediate family members could have it too, although they may not know it. When it comes to Non Celiac Gluten Sensitivity, gluten knows no family lines; it's just plain bad for everyone. Non Celiac Gluten Sensitivity affects a minimum of 6% of the population. Other medical professionals feel it's closer to 10% and as much as 30%-40%.
Denial is a very good friend of fear; you see them hanging together - a lot. Many family members are in denial - "Oh, I can't possibly have what you have - it's the _____________
While most family members would never say it out loud, some would:
While I don't profess to have all the answers [or any for that matter], I do have some things that might help you cope with misguided, uncaring and selfish family members. Like my Father-In-Law used to say "You can pick your friends, you can't pick your relatives".
1) Be clear about why you are going gluten-free.
Have a plan, have goals, direction, be specific. "I am gluten-free because ____________". If you don't have a clear idea about why you are doing it, how are others supposed to understand? Without direction, it's easy to get lost. It's like going on a car trip without a map or a GPS. If you already have a definitive diagnosis - your goal is clear cut - GLUTEN ZERO FOR LIFE - no exceptions - ever. If your family won't take your word for it, show them your doctor's office notes and lab results.
Having a medical diagnosis generally adds credibility to your efforts. If you doing dietary trials on your own without a doctor's backing, you're flying without a net. This means you'll need extra resolve to say the course. Strap yourself in, it's going to be a bumpy ride.
2) Take gluten-free seriously.
Sometimes, we're our own worst enemy. To be successful at being gluten-zero, you need commitment and consistency. There's no crying in baseball and there is no cheating when it comes to gluten-zero; it's all or nothing. If you don't take it seriously, how can you expect others to take you seriously? Seriously. They get confused and frustrated by your actions. One time you're gluten-zero, the next time you're eating a BigMac. That type of behavior just doesn't play, your credibility goes right down the toilet [pun intended].
Be aware that your own loved ones may try to sabotage your efforts. They may try to tempt or persuade you back to gluten foods. How many times have you heard "Come on, just one bite won't hurt". How many times have they waved your favorite gluten filled food under your nose or even tried to force it into your mouth? Giving in to that type of behavior, only gives them control - and makes you sicker. Stand fast and hold your ground. Eventually they should tire of it because you won't give in.
If you are doing dietary trials to see if gluten might be causing problems, clearly define how your trial is going to work. I bring up trials because it may involve putting gluten back into your diet - this might confuse your family members. Make sure they know about your plan. If you think you can cover up cheating under the guise of "doing a trial", you won't get away with it too many times.
Note: Before you start an extensive dietary trial, try to get tested first. In order for the tests to be as accurate as possible, you need to be consuming gluten. Click here for more info on testing.
If you are wondering, a trial should last three to six months at a minimum (six months is better). Depending on your symptoms, it may take a while for them to disappear, particularly neurological or skin [Dermatitis Herpetiformis] symptoms. Sometimes changes are subtle when you remove gluten, but very dramatic when you add it back in. I noticed changes on removal, but noticed larger changes when I went back on gluten. I started a 8 week gluten challenge to get blood work done and called it off after 5 days due to the symptoms. It was enough for me to determine that I will be gluten-zero for the rest of my days. I did have intestinal biopsies taken before I started dietary trials [yes, my testing sequence was reversed], no evidence of tissue damage was found. While I do not have a celiac disease diagnosis, a 4 month trial revealed gluten was an issue for me.
3) Communicate & Educate.
As simple as that sounds, I find it's not always done. Sit down with them and explain exactly why you want to explore gluten-freedom (see Tip #1). Be open about what you desire from them, so they know what to expect, they can't read your mind. Ask them for their help and co-operation; ask them to be a part of your team that makes you the best you you can be.
If we dig deep inside and look beyond the medical necessity of our food requests, we will find an emotional component. Our requests are an extension of ourselves. When our family and friends fail to acknowledge our food requests, we feel it as exclusion and rejection of us as a person. Maybe it is, maybe it isn't. Sometimes it's hard to tell what is inside the hearts and minds of our loved ones.
￼Opening up a line of communication is so important when it comes to resolution. Having a calm, heartfelt conversation about our health concerns and what it takes for us to be healthy and happy is the best chance we have at getting them to understand. It is up to us to kindly and respectfully educate them on how to do things correctly, no one else will do it.
I invite you to read this informative article on Confrontations vs Conversations from PsychCentral: http://bit.ly/1GQw2q1 It offers some great insights…
Conversations are fueled by curiosity.
Confrontations have an aura of a judicial proceeding.
Conversations frame a problem as something to be solved.
Confrontations have an element of moral superiority.
Conversations happen between equals.
Confrontations shield the confronter from any responsibility.
Conversations say “we’re in this together.
If you have trouble expressing yourself verbally, write a letter. Explain to them exactly how you feel, explain what you go thru on a daily basis, how you'd like to get your life back on track and how much it would mean to you to have their support.
Often times people tend to ridicule or dismiss things that they don't understand. If they are open to learning, find information from a reliable website and share it with them. Try not to overwhelm them with too much information. Once their eyes glaze over, you've lost them.
You might find something helpful here:
4) Letting go
Let's face it, you might talk and educate until you are blue in the face, there's a possibility they still won't get it. Be confident in the fact that you gave it your best effort. Don't let your emotions consume you over their unwillingness to support you. As hard as it may be, you'll be better off if you just accept it and keep moving forward, focus on getting yourself healthy. Don't let them suck you into their darkness.
5) If support doesn't come to you, you go to the support
OK, so maybe your family is a poster-child for dysfunction; incapable of understanding what you're going thru, refusing to work with you on any level...you need to seek out those that understand and have walked in your shoes. Connecting with others that share similar experiences can make the difference between success and failure.
It's imperative to surround yourself with people who are positive and who are pursuing their own goals. Positivity is contagious - so is loneliness and depression - which would you rather be? Dr. Barbara Fredrickson found a Positivity Ratio of 3:1 a tipping point for human flourishing. This means for every negative feeling, thought, experience, we need a minimum of three positive (love, joy, gratitude, etc) in order to be happy. The ideal ratio is 5:1.
Support comes in many different ways. Today, there is a seemingly endless supply of online communities you can join. The great thing about online communities is that they're always open - ready to accept the latest rant or cheer your most recent accomplishment. If online is not your bailiwick, a local support group is the way to go. While online groups can do wonderful things, nothing beats face-to-face contact. It's hard to replace seeing the look on someone's face, the sound of their voice, and at times, the touch of a hand or hug.
Search for local support groups here:
Good luck in your journey!
This article was published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Sping 2013
Update 03/13/15: Update Tip #2 Communicate & Educate - added Conversations vs Confrontations.
Update 11/23/12: Fixed typos and added additional information.
Easter is only one week away. In many families, this means Easter Dinner at someone's house other than your own. Oh the humanity...
Not only was today Palm Sunday, but it was also First Communion in our church. The kitchen and fellowship hall was a-buzz with activity.
A family was holding their First Communion celebration in the fellowship hall and everyone was bringing their contributions to the feast: deviled eggs, sliced ham, calico beans, sloppy joes, cakes, pies and desserts of all types. OH MY!
As I was watching all of this food pour in, I'm thinking...OMG what a gluten-free nightmare...
Peg and I were in the kitchen cleaning up from communion, we were invited to take part in celebratory feast. A family member knows I am gluten-free and said "Oh gosh, I'm sorry, we don't have any gluten-free buns, but there's plenty of other things for you...". We politely declined, but really appreciated the heartfelt invitation.
Dining out in a restaurant is hard, but I think eating at someone's house or a hosted event is even harder. Most times the host/hostess are unfamiliar with the gluten-free diet and the concept of cross contamination. Even professionally trained chefs may not always know the ins-and-outs of a gluten-free diet.
I don't blame friends, family and loved ones for not knowing about gluten-free. In fact, it's our [the gluten-free community] responsibility to impart that knowledge to them. If we don't do the education, who will?
In the end, if the people in our lives do not know how to accommodate our needs, we have no one else to blame but ourselves - to a certain degree.
Of course there are some people that just don't get it no matter how hard we try. If we've done our best to educate and it is just not sticking - at least we gave it our best shot. Sometimes family can be the hardest to get through to.
The whole education process doesn't happen overnight. Of course, we have to make allowances [bring our own food, eat before hand, etc] until we are comfortable in their knowledge and abilities. Sadly, in some cases, that day may never come, despite our best efforts.
Since 2003, I've had a lot of "educational opportunities" with our friends and family. They now know and understand cross contamination, they will verify products/ingredients with me, even save the labels for me to inspect. My family and friends have been very good about learning and making things safe for me. I connect with enough of the gluten-free community to know their behavior is not the norm. I am lucky...or...have I simply done a good job at educating them. I suspect it's a little of both.
Even though my family and friends are very good, I always bring at least one dish that I know is safe. Often times, I'll bring a second dish of the same food just for me that won't be put out for the masses. Also, we try to host as many family events as we can so we have as much control as possible.
I'd like to share some of the tools I've used to educate my friends and family members....
BeyondCeliac.org: Seriously, Celiac Disease - This is an effort to educate non-diagnosed family members about the importance of getting tested. As we’ve [often] discussed, our own families can be the most difficult. We talk, we educate, we lead by example. Whatever we do, has no affect. They just don’t listen to us. Celiac disease is genetic, it runs in families. If one person in the family has it, there is a chance someone else in the family has it too (1 in 22 for a mother/father/sibling) - they may not even know it. It’s very possible they could have it, and not have any symptoms at all! Be aware a single negative test does not clear a person for life. Celiac Disease can be triggered at any age - at any time. And so the struggle begins… Family members need to be tested, but getting them to do it is another story. This is where Seriously, Celiac Disease campaign comes in.
Living Gluten Free for Dummies by Danna Korn - I highly recommend this book. I see this book as a continuation or update of her Wheat free Worry Free book. It also goes a bit further in depth on certain subjects. There is no need to own both. Get this one if you don't have either book. Again, a great book to loan out.
Wheat Free Worry Free by Danna Korn - I got this book shortly after I went GF. Danna has a great persona in her books. Her style is very conversational, easy to read and fun! She includes humor in her books, which I think is a great idea. This is a great book to give to friends and loved ones. Often times they have a hard time understanding what you're going thru and why you have to do it. I lent this to my Mom, after that, she seemed to "get it"...or at least stopped questioning why I couldn't have ___________ ;).
A Celiac is Coming For Dinner - This is a nice article from Caryn Taity about accommodating gluten-free guests. I have given this article to several family and friends.
Cooking for Gluten-Free Family or Friends - Amy Leger [aka The Savvy Celiac], covers some of the basics.
Gluten-Free Diet Boot Camp - I often get asked for information on celiac disease and gluten-free. Either it's someone that is just starting to investigate gluten as the source of their health issues, or it's someone that is just newly diagnosed and looking how/where to start. This is a collection of many different links.
A Guide to Gluten Cross Contamination - This guide strictly addresses areas of gluten cross contamination and how to minimize the risk.
A Day in the Life - Living in a Mixed House - This is an article I had written several years ago for this support group. It explains how we handle having gluten in the house. This is knowledge and experience I have gained over the years - much of it I've imparted to friends and family members.
So, You Want to Bake Gluten-Free Cookies - I created this for a few non-gluten-free people that wanted to bake GF cookies. We put together a GF Cookie Baking Kit: This document that included the recipes, the proper amount of GF flour for a specific amount of cookies. I cover the basics of gluten, gluten-free baking and cross contamination - enough information so they can safely make GF cookies for someone. Note: You can tell by the logo, this was done before we became a Gluten Intolerance Group branch in May 2011
Celiac Disease - Stuff you should know, but didn't know to ask - A presentation I did for our church. Since our Pastor is also gluten-free I wanted to educate the other members. This presentation covers the history of celiac disease, what it is, what is gluten, is there a safe amount of gluten, cross contamination. Our church now has a completely gluten-free communion. Since the host is gluten-free so there is no chance of cross contamination. Note: You can tell by the logo, this was done before we became a Gluten Intolerance Group branch in May 2011
12/16/16 - Added BeyondCeliac.org's Seriously, Celiac Disease
10/29/13 - Added Gluten-Free Diet Camp.
6/24/2013 - Added Guide to Gluten Cross Contamination.
This article was originally written and presented to the members of this support group in March 2009. I decided to correct some typographic errors and add some additional knowledge/information I didn't have when I originally wrote it.
This document draws upon my knowledge and experience I have acquired since going gluten-free in 2003. I have given you, the reader, a glimpse into how I personally carry out a gluten-free diet in a mixed house. I am not suggesting this is the only way or the best way; it's simply my way. Nothing more – nothing less. Please do not take any information found here as medical or professional advice. I'm not a doctor/nutritionist/dietitian, nor do I play one on TV. Before making any changes, discuss them with your healthcare team to make sure they are right for you.
My only intent is help others that may be struggling with the gluten-free lifestyle.
GIG of East Central WI - Branch Manager
Not only do we have to be concerned about gluten ingredients that make up our food – we also have to be concerned about any gluten that may come into contact with our gluten free food.
Often times those that are new to the diet [or our friends and loved ones that don’t yet understand the diet], don’t fully understand the lengths we have to go thru to make sure our food isn’t contaminated. Yes, eye rolls and sighs are often the reactions we get. They think we’re being over cautious, anal retentive, drama queens…running around like Lucy van Pelt in A Charlie Brown Christmas “Ugh! I've been kissed by a dog! I have dog germs! Get hot water! Get some disinfectant! Get some Iodine!”
Gluten is gluten – it doesn’t matter how we come in contact with it. We need to be mindful of it.
GF or NGF [Non-Gluten-Free] Household – That is the question
Choosing what type of house to have depends on many factors. Economic, young children, percentage of members that require GF – just to name a few. I’m not going to defend or promote one way or the other. Every one must make the choice that fits them best. There’s no question that having a totally GF house would make things a lot easier on those that need to be GF. You have to weigh the practicalities of each side very carefully. However, as we continue down this gluten-free path, our house contains an ever dwindling supply of gluten. If we had kids, we might have chosen to be a 100% GF house right away.
Obviously those people that have a GF household are going to have an easier time of this. I’d venture to guess that, most people have a mixed house. I suspect that most celiac homes are mixed [meaning those that must be GF are, those that aren’t GF have gluten foods in the house]. I took a poll on one of the discussion boards I administrate. 77% (24) live in mixed houses.
I will say this – if you are having trouble getting your numbers down on your annual follow up blood work or still don’t feel well – you’d need to examine what is going on. How is gluten getting in? Are your food choices correct? Are you eating processed/packaged foods? Are you dining out? Could it be cross contamination at home? Did you check your meds/supplements? A number of things must be considered.
Those of us with a mixed house have our work cut out for us. We must always be on guard and always observant. Some people see this as a negative, because they don’t have a safe harbor from the rest of the gluten polluted world – that is completely understandable and desirable in certain circumstances. In my case, I don’t view it as a hardship, I view it as one of those “facts of life”. I feel it prepares me to deal with the rest of the world that doesn’t cater to me and my needs. Once you figure out a system, sharing a kitchen/pantry is do able – it just takes some planning – just like everything else with the GF lifestyle. “He who fails to plan, plans to fail”.
A very key element in having a mixed kitchen or 100% GF house – is having total buy-in of rule following from the others that live in the house. You’re really at their mercy in this. Sometimes this is not always easy – particularly with uncooperative spouses/significant others, kids [young ones] or yes, slobs. I’ve always said, it’s a good thing that I’m the one that’s GF, and not Peg. Yeah, truth be told, I can be teeny-tiny bit of a slob. In my defense, [I think Peg will back me up] when it comes to keeping the kitchen clean of food droppings, I think I do a pretty good job. I do my best to follow all the cross contamination rules just as she does. The kids – well – kids will be kids. As good as they can be, there’s going to be some mistakes made. The older kids, it might be easier to teach them what they need to do to keep things safe for their GF family member.
Regardless if you’re a mixed house or a 100% GF house, it’s always a good idea to give the kitchen/pantry a thorough cleaning when first starting out. Pull everything out of the fridge, cupboards, cabinets and drawers. Wash things down with warm soapy water – changing the water frequently. Gluten is not a living thing, so you can’t kill it – bleach does nothing. Heck as long as you’re at it, pull out the stove and fridge too - they can get pretty funky! For those with a mixed house – you’ll have to do this regularly if you don’t already do it.
As long as you have all the stuff pulled out of the cupboards and shelves, you will want to look at reorganizing them. You’ll want to have designated shelves, drawers and cupboards strictly for GF foods and for NGF foods. It’s best to keep the NGF items away from the GF items. It can also help to get some sealable containers so that you can place the GF food inside them – that way you won’t have to worry if something gets spilled or dropped on it. If you happen to have NGF flours – putting them in their own sealable container is also advisable. If you share pantry space, put GF items ABOVE gluten items. Since gluten rolls downhill, we don’t have to worry about “stuff” falling into it our GF foods. Also, make sure you clearly label GF and or NGF containers as such.
Also try to designate some counter or prep space strictly for GF items. Try to make a GF zone so that you always know you have a clean space to put things down. This can help a great deal when prepping meals.
There are some utensils that you’ll want to replace – hands down, no matter what.
Toasters - if you’ve ever toasted glutened products in it – get yourself a new one and mark it so everyone knows that only GF items are to be put in it.
Toaster Ovens – if you’ve got one with removable racks, call the manufacturer and see if you can purchase another rack for it. We purchased a Kitchen Aid, as soon as I got home I called them and asked about another rack. The representative seemed somewhat perplexed as to why I wanted another rack. I explained – he sent me another one free of charge! Now that’s customer service!
Colanders/Strainers/Flour Sifters – Since pastas/gluten often get stuck in the small little holes and slits, cleaning them fully is a nightmare if not impossible. We have 2 colanders.
Wooden utensils/boards/rolling pins – Porous item can harbor gluten.
Cutting boards [plastic or wood] – due to the deep cuts and grooves, it’s best to get a new one.
Cake pans – these pans typically have a lot of very deep cuts/grooves in them. Cookie sheets – you could always use parchment paper with your existing pans when baking GF cookies. I have my own cake pan, muffin tins, pizza pan, mini loaf pans, cookie sheets.
Non-stick pots & pans – if there’s any cuts or scratches in the surface, replace it. It’s reported that Teflon is a porous surface and thus is not GF friendly. I have relaxed my views on non stick surfaces over time. As long as the coating does not have any cuts/scrapes/grooves – and as long as it’s completely clean – it's not a problem. I sent off an email to Tricia Thompson aka The Gluten Free Dietitian aka the author of The GF Nutrition Guide. Since she’s done many scientific studies, I thought she’d be a good one to ask about Teflon. Here’s what she said:
"In my opinion, if a teflon pan has scratched and starts to peel it should be thrown away for reasons far more important (probably) than the possibility it harbors gluten. Maybe it's just me but I don't like the idea of eating those little bits of teflon even if they are chemically inert!! As for the possibility that nonstick pans absorb gluten, I am not aware of any studies but find this hard to imagine. I am not an expert on Teflon but based on what I've read, Teflon is chemically inert, is not porous, and does not absorb food. " ~ Tricia Thompson, RD
There are only 1 or 2 pans that we use for gluten foods – I use them if I have to [which is rare].
Cast iron skillets – the “seasoning” develops from years of use is definitely something to stay away from. I’ve heard of some people getting them sandblasted or scrubbing them with steel wool and starting over.
Ceramic bake or cookware – yeah, that old pizza stone ain’t gonna cut it. Foil it, or hand it down to the gluten eaters.
Having some type of marking scheme is important. People have to know what’s used for GF and fair game for anything else. In our house we use the color red as much as possible for GF items. Spatulas, spoons, Tupperware, etc – all have the color red somewhere. We do have a GF wooden spatula – it’s Pampered Chef Brand – it’s the only one of it’s kind. For our toaster oven rack, I’ve colored all 4 corners red with a Sharpie permanent marker.
We have even trained frequent guests and family members on how our house functions and cross-contamination concerns.
Figuring out how to navigate in this gluten filled world takes some doing. It requires a GPS – Gluten Position Service. Figuring out how to do it in your own kitchen is no exception.
Areas of concern
I’ve already discussed the utensils.
Counters – crumbs from making a NGF sandwich can be scattered and left behind. This is why it helps to have designated areas for GF and NGF. It just makes things a bit easier.
Dishtowels/sponges/dishrags – it helps to use paper towels because they’re disposable. If Peg is working with NGF products, she’ll clean first with paper towels then use a dishrag. After cleaning up she will switch out the dishrags with fresh ones. An average day in our house does not really generate much gluten usage.
Pets & Pet food – this is an easy one to overlook. If you’re feeding Rover NGF dog food, you might consider switching to a GF dog food [yes, pets do benefit from GF diets too!], or be very careful to wash your hands after feeding them. I have a friend that saw her testing numbers get worse – she finally pinned it down to bags of bird seed. That particular brand of bird seed contained wheat and she kept breathing in the dust [and swallowing it] when she was feeding the birds.
Kisses from loved ones – while this may sound strange, crumbs and residue can remain on hands/faces/mouths of loved ones for hours.
Microwave – how often do you put something in there and as foods heat up, things splatter around? These guys can be a real harbor for gluten pollution.
Grill grates – it might be time to replace the grates on the old weber. Of course you could try cleaning them, but sometimes that’s a nasty job in itself! If cleaning or replacing the grills are not an option – grill your GF items on tinfoil.
Hair/skin care products – if you happen to touch your hair, it’s possible for hairspray, etc to get on your hands and thus on your food or into your mouth. Most experts will say that topical connect from gluten will not cause a celiac reaction – it must be ingested in order for it cause problems. However, I know many people that do experience some type of skin reaction when they touch it. Is this a true celiac reaction or some other type of reaction – not really sure. This is a highly debated topic. Bottom line, if you react in any way – make sure the product is GF. Problem solved! For more information on GF cosmetics/hair care products, please check out: http://www.gigofecw.org/news/files/gf_cosmetics_hair_skin_care.php
Condiments (spreadable) – jars of peanut butter, mayo, butter, margarine, jelly, etc. These guys are huge cross-contamination magnets! Double dipping is strictly prohibited and a punishable offence! You’ll need to train people on the fine art of Gob Dropping or using a couple of spoons/knives to accomplish their task. Of course some of these products can be gotten in squeezable containers – this can help. If you think you can double dip just because you’re using GF products – think again… First of all, you won’t be able to tell if those crumbs are GF or NGF. Second of all, crumbs of any kind in those places are not good eats! GACK!
Shared bowls/bags of your favorite GF snack food - Think about when someone makes a monster sized NGF Dagwood sandwich, then they dig their gluteny paws into the potato chip bowl/bag. Bags of snacks must be poured out into an individual bowl.
Telephone/Keyboard/Mouse/TV Remote – yup these can get glutened too.
For a more detailed look at gluten cross contamination, please see our Guide to Gluten Cross Contamination.
A Day in the Life
Getting the hang of safely surviving in a mixed house will take some time. Let’s face it, you’ve probably lived NGF for a lot longer than GF. Old habits and actions take time retrain and rewire. You will make some mistakes starting out, count on that. I know, people are going to say “if you had GF house you wouldn’t have to worry about mistakes…”. Yeah, well, if you stay in bed, you don’t have to worry about getting hit by a car either. This is life, life isn’t perfect, so we do the best we can with the situation we have. After awhile you become conditioned – for better or worse. We were making lunch one day, Peg had her NGF bread on her plate already and she asked me to lay some sandwich meat on her bread since her hands were contaminated at that point. I pulled out a few pieces and I was starting and stopping with jerky movements. Peg thought I was messing around and asked what I was doing. I told her I was having trouble putting the meat on her NGF bread. I had become so conditioned to NOT do it, I had trouble doing it even when it was acceptable to do.
Spaghetti - Take cooking spaghetti for example…how do you test it to see if it’s done? No, throwing it on the wall to see if it sticks is not an option – at least in our house. Right – you taste it. We’ll that’s not possible if you’re cooking NGF pasta – however, old habits are hard to break! I know I’m not the only one that has put NGF pasta in my mouth to see if it was done then realized in horror what just happened. This was years ago, and I have since retrained myself not to do that. Now if I’m cooking pasta for Peg, I will do it by feel. Pinch it between my fingers – then have Peg taste it. Yes, I wash my hands after testing it.
I can hear you asking – “How do you keep straight which utensil to use?” It’s fairly easy actually. Since I’m left handed, I will put my GF pasta pot [yes I have my own pasta pot] on the left side of the stove. I will put Peg’s NGF pasta pot on the right side of the stove. I keep each utensil on the corresponding side. Also remember that my utensils are colored red – this helps in keeping things straight.
I can hear another question - “How do you stop gluten water from bubbling/splashing over into yours?” I stagger the time that I put in the GF and the NGF pasta. I’ll do mine first so it gets done first and thus drained first [into my GF colander]. If I have both going at the same time, I watch the heat to make sure it’s not splashing over the sides of the pot and I’m careful when I stir.
The pasta sauce is GF. Peg can add any NGF modifiers to her plate if she chooses.
This is pretty much how all of our meals are…the base of the meal is GF…then Peg can add whatever she wants. Most times it’s nothing NGF. Pastas, breads, pizzas, cereals/breakfast bars and some desserts – are about our only separate food items.
Baking – As I mentioned I have my own GF baking pans/tray/mixing paddles and mixing bowl [the bowl is stainless so it’s not a big deal anyway]. Peg still does some NGF baking [for fun and some profit]. Around the holidays it’s not uncommon for her to bake me some goodies then bake NGF goodies for herself or an order. Always, always always, the GF items are baked first. After she’s done with the GF baking, she’ll do the NGF baking – using the NGF equipment. It’s been reported that flour poofs around and and stays in the air for up to 24 hrs. Peg maintains that if you’re careful, you can keep the flour poofing to a minimum. She also maintains that GF flour poofs worse than NGF flour. Most generally I am not around when Peg has the NGF flour out, but I happened to watch her one time when she was scooping out the flour and mixing it – I did not see clouds of flour anywhere. The mixer is turned on slowly so flour is not spewed out all over. It would be interesting to do this under a black light to see if we could see it.
As an [unscientific] experiment, I placed several pieces of dark blue paper [sorry, no black was handy] around the kitchen before Peg started her non-gluten-free baking. No mixer was used in this experiment – all mixing was done by hand. Two pieces were sitting between 6” and 2 feet from the measuring/mixing/rollout area. The remaining piece was sitting about 2 feet away on the stove. The 2 pieces closest to the measuring/mixing/rollout area had a few small specks of non-gluten-free flour. The paper sitting on the stove, had no visible flour on it. I will say, that I have never seen or felt a coating of dust/flour after GF or NGF baking.
When NGF baking she clears off the counter so if flour does happen to poof around, it won’t settle on anything…other than the counter. When she’s done the counter is thoroughly cleaned and counter items put back after cleaning.
Hosting Family Events
In some cases family events tend to buffet type setups. Should this be the case, arrange all the gluten foods last in the line and away from the GF foods. It also helps explain to guests what foods are what and not mix the utensils. If you have things like BBQ’s [aka Sloppy Joes] or things that guests might have to build themselves – have 2 separate stations/containers for these -this way you can keep yours [the lion’s share] safe. It’s always smart to have smaller portions at the NGF station. Once it contaminated – you’re not going to want it – unless someone else in the house can eat it. Should you run out or low of the fixin’s at the NGF station you can always refill it from the GF container.
Another tip is to be the first thru the line so you know there’s been no cross contamination. There’s gotta be some perks to this GF thing, right?
Outside your Kitchen
Cross-contamination also occurs outside your kitchen too. We’ve already discussed the cross-contamination issues and dining out. It also applies to our food and how it’s processed and packaged at the manufacturer. You’ve probably all seen the “Processed in the same facility that process wheat, peanuts, cat hair, whale blubber…”
According to Cynthia Kupper, RD [Director of Gluten Intolerance Group of North America] in her talk at HealthNow's Gluten Sensitivity/Celiac Forum 2010, the “Processed in..” and “Processed on...” statements are voluntary advisory statements designed for those with IgE [anaphylactic reaction] allergies. Many companies use the statements to “cover their backsides” legally. In reality they have no meaning for celiacs. She stated a group of registered dietitians knowledgeable in celiac/gluten-free; determined it would be reckless of them to suggest that the voluntary statements be used solely to determine the gluten-free status. If you have a true IgE reaction, you need to heed the warning. I highly recommend buying and watching HealthNow's 2010 Gluten Forum DVD. Well worth the $15.00.
Some companies are better than others when it comes to processing our foods. According to a 2005 report from the Inst.of Food Technologists - nearly all companies do follow “good manufacturing practices” [except for the Peanut Corp. of America], which the IFT concluded to be “effective in reducing or eliminating cross contamination”. While many processes take multiple steps to protect consumers, some don’t take any. ACK!!
FDA studies conducted from 1999 – 2005 revealed*:
About 55% of food processors identified and separated ingredients with allergens as raw materials.
About 80% took one or more steps to keep food processing equipment clean and prevent allergens from spreading to otherwise allergen-free foods. This includes: dedicated machinery, cleaning shared machinery between runs. Clean was the most common.
The most common source of cross-contamination comes from the build up of food residue on equipment even after it has been cleaned.
About 25% of the facilities were still likely to have allergen contamination in foods they produce. FDA states this figure should not be used as a gauge of overall cross-contamination in processed foods since these inspections were not chosen at random – they targeted facilities where the possibility of cross-contamination was the greatest.
Some companies when they first switch from an NGF run to a GF run [after the cleanup process was done] will donate a certain percentage of the product from the first run to a non-allergic organization in an effort to reduce the cross-contamination risk.
*The source of this information was obtained from: Department of Health and Human Services, Food and Drug Administration, Center for Food Safety and Applied Nutrition, Food Allergen Labeling and Consumer Protection Act of 2004, Public law 108-282, Report to the Committee on Health, Education, Labor, and Pensions, United States Senate and The Committee on Energy and Commerce, United States House of Representatives, July 2006. The original PDF located at: http://www.cfsan.fda.gov/~acrobat/alrgrep.pdf could no longer be found.
- Choosing a 100% or mixed house based on many factors. It’s a personal choice, do what’s best for your situation.
- Large percentage of homes are mixed.
- To be successful, total buy-in from other household member to follow all the GF rules.
- Pull out everything and clean thoroughly everywhere with warm soapy water.
- Organize kitchen & pantry. Separate GF and NGF as much as possible.
- GF items are stored ABOVE NGF items.
- Store items in sealable containers. Label them GF or NGF.
- Have a GF zone somewhere in your kitchen.
- Replace: Toasters, Colanders/strainers/sifters, anything wooden, cutting boards, cake pans, scratched nonstick pans, cast iron skillets, ceramic bakeware.
- Labeling and marking of all items are important. Use colors to help remind.
- Areas of concern: counter tops, dishtowels/sponges/dishrags, pet food, kisses, Microwave, grill grates, ceramic bake/cookware, skin/haircare products, spreadable condiments, shared bags/bowls of snacks, telephone/keyboard/mouse/remotes.
Resources and web sites used for this presentation:
What Is Gluten Cross-Contamination? And Why Should You Worry About It?
By Nancy Lapid , About.com
Hold The Gluten 10 - Avoiding Cross Contamination
Gluten Free Living – Spring 2007 Issue
Living GF for Dummies by Danna Korn
GIG’s Producing GF Products from a Non-Dedicated Kitchen
GIG’s Quick Start Diet Guide
Tricia Thompson’s – The Gluten-Free Nutrition Guide
06/24/14 - Fixed broken links
In January I had to re-enter the world of pharmaceuticals [much to my displeasure, but best for my long term health]. If you think determining the gluten-free status of food is difficult, try doing it with prescription medications! It's difficult at best to determine it by reading the ingredient label, and getting a pharmaceutical company to say if their product is gluten-free is like pulling teeth. Ugh...
The Food Allergen Labeling Consumer Protection Act of 2004 [FALCPA] requires packaged food items to declare wheat and other allergens, but medications do not fall under the umbrella of the FDA's rulings.
Medications contain the active ingredient, but generally it needs to combined with something else - something called an excipient.
What's an excipient?
It's a pharmacological term used for an inert substance that acts as a carrier for the actual drug itself [the "active ingredient"]. Excipients are also used as a filler to bulk up formulations to ensure proper and accurate dosages and as a binder [pill form].
For an extensive list of excipients, see glutenfreedrugs.com Excipients List; complete with descriptions.
Drugs.com has an excellent Inactive Ingredients page. Does not address gluten, but very in-depth explanations of each item.
Starches found in medications can include:
Pregelatinized Modified Starch*
Sodium Starch Glycolate*
Since drug companies don't have to disclose source of the starch, there is no easy way to tell if certain ingredients are gluten-free. Calling the manufacturer is the only [and best] option.
Common gluten-free excipients include*:
Sodium lauryl sulfate
Cynthia Kupper, RD (Executive Director of the Gluten Intolerance Group) states that patches, inhalants, injectables, and liquids/elixirs are not problematic for those following a gluten-free diet. Source: HealthNow's 2010 Gluten Forum DVD
So far, Mylan Labs has the best response about GF status of several pharmaceutical companies.
I was doing a status check on a medication and had an interesting talk with a Mylan [a drug mfg] customer service rep. He was very knowledgeable and understanding. He was a nurse, so he had a clue about celiac disease. He even mentioned gluten sensitivity.
They have a manufacturing facility in Morgantown, WV where 80-90% of their meds are made. The rep I spoke with last was based in WV. The rep I spoke with earlier, was not from location, probably PA. They do outsource some meds to a facility in India.
I was told that no wheat, barley, rye, spelt or oats are used in that facility in Morgantown. I was told by the rep in PA 3 months ago, that the "no gluten" was no longer the case. I will still continue to verify that info every 3 months at refill.
I asked raw ingredients were tested for gluten...he said ingredients were tested for quality and purity, but did not specifically say gluten. He did mention that they did test one of their meds [I can't remember which one], and it tested as gluten-free.
When calling Mylan, try to speak with someone in the Morgantown, WV plant. They will need the name of medication, the dosage, and the markings on the medication. If tablet - they'll ask about both sides
Here are a few other links of interest:
As with all gluten-free lists - they should only be used as a guide - a starting point. Please verify the status of these products before you take them as ingredients can change.
A companion piece is this great webinar with Steve Plogsted recorded on February 11th, 2015:
Download the slides from that webinar - another excellent resource!
"Abstract: Celiac disease is a chronic condition involving an abnormal immune response to the ingestion of gluten-containing foods and products that commonly results in digestive symptoms, although other organ systems may be involved. The current mainstay of therapy is the avoidance of gluten-containing foods, beverages, and other products. However, if not equipped with the knowledge that medications, OTC products, supplements, and vitamins may contain gluten, patients with celiac disease may experience ongoing symptoms from continued ingestion of these products. Therefore, pharmacists play an essential role in educating patients and evaluating their medication use to ensure the optimal management of celiac disease."
Note: Due to the article's age, any brand name products that are stated as gluten-free, should no longer be considered GF. It's my opinion that any published list of gluten-free products, should not be blindly followed. Since manufacturers can change the ingredient list without notice, the product needs to be verified with each purchase.
Once a pill has been identified, additional information is provided, including brand/generic name, ingredients, and the National Drug File identification number.
Sadly, NFCA no longer offers a free online continuing education program for Pharmacists. However, a handout from the program is still available: Celiac Disease Training for Pharmacists. Still worth sharing with your pharmacist.
They also have a PDF for Pharmacists.
HR 2003: Gluten in Medicine Disclosure Act Update - November 2013:
NFCA interviews Nita Lowey about the Gluten in Medicine Disclosure Act - Read More...
Please, Click here to tell your Representative that we need better labeling on our medications!
Follow this bill's progress via GOVTrack.us.
The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.
Suzy's DearPharmacist.com website contains a couple of links worth checking out.
Hopefully you and your Pharmacist find this info helpful.
update 10/19/16 - added AllergicLiving.com's link
update 10/31/15 - Updated GIG's Celiac Disease & Medications link
update 09/12/15 - Added Living Without's - Gluten-Free and More article "Gluten in the Pharmacy"
update 05/13/15 - Added Living Without's - Gluten-Free and More article "Allergens in your Medication"
update 02/23/15 - Added Medscape article "Medications and Supplement Use in Celiac Disease"
update 02/13/15 - Added med research sites and Gluten in Medication Webinar/slides
update 07/29/14 - Added CDF link
update 05/25/14 - Added About.com article.
update 05/25/14 - Added PracticalGastro 2008 & 2009 articles.
update 05/25/14 - Added Delight Gluten-Free Magazine article.
update 03/18/14 - remove link to GREAT Pharmacists training - add link to corresponding PDF
update: 12/14/13 - updated link to GIG's Medications & Celiac Disease educational bulletin
update: 11/9/13 - added Gluten In Medicine Disclosure Act info
update: 9/11/13 - added Living Without's Steven Plogsted interview
update: 05/03/13 - added more info on excipients.