Grieving loss of Gluten

Gluten-Free Gratitude

A version of this article was originally published in our November 2016 Newsletter.

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.

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Stay strong. Keep moving forward.

Peace and blessings,

Alan Klapperch
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.

The Guest House

"This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably,
He may be clearing you out
for some new delight.

The dark thought, the shame,
the malice, meet them at the door laughing, and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond."

Jalal Al-Din Rumi
Translation by Coleman Barks

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.

Everything we have come to know and love - changes - in the blink of an eye. What has taken us a lifetime to create must be re-engineered and rebuilt; not an easy task by any measure. This process comes with a high cost; not only financially but also emotionally and physically. Stress, frustration, fear, and anger make large withdrawals from our emotional bank account - withdrawals we may not be able to cover.

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!


Pasted Graphic
Robert Emmons, PhD, is the one of the world’s leading scientific experts on gratitude.

A Professor of psychology at University of California, Davis and director of Emmons Lab, where they focus on the science of gratitude and its effects on health and wellbeing.

“Gratitude heals, energizes, and transforms lives. We are engaged in a long-term research project designed to create and disseminate a large body of novel scientific data on the nature of gratitude, its causes, and its potential consequences for human health and well-being. Scientists are latecomers to the concept of gratitude. Religions and philosophies have long embraced gratitude as an indispensable manifestation of virtue, and an integral component of health, wholeness, and well-being.”

Author of several books including: Thanks!: How Practicing Gratitude Can Make you Happier and Gratitude Works!: A 21-Day Program for Creating Emotional Prosperity

What is gratitude?

Dr. Emmons defines gratitude as:

A felt sense of wonder, thankfulness, and appreciation for life.”

He maintains that gratitude consists of two key components: affirmation of goodness, and knowing where it comes from. He writes:

“First, it’s an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.”

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.

How Gratitude Can Help You Through Hard Times
By Robert Emmons, PH.D.

“It's easy to feel grateful when life is good, says Robert Emmons. But when disaster strikes, gratitude is worth the effort.

A decade’s worth of research on gratitude has shown me that when life is going well, gratitude allows us to celebrate and magnify the goodness. But what about when life goes badly? In the midst of the economic maelstrom that has gripped our country, I have often been asked if people can—or even should—feel grateful under such dire circumstances.”

Read More:

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.

TIP: View what we are receiving as gifts. This helps protect us from taking them for granted.

Let’s explore 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.

Robert Emmons, PhD Video Series

The Power of Gratitude:

What Good is Gratitude?

The Benefits of Gratitude:

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.

Why is Gratitude Good?
By Robert Emmons, PH.D.

We’ve studied more than one thousand people, from ages eight to 80, and found that people who practice gratitude consistently report a host of benefits: stronger immune systems, less bothered by aches & pains, lower blood pressure, higher level of positive emotions, more optimism & happiness, more compassionate, more forgiving, less lonely & isolated.”

Read More:

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
If you are on Facebook and interested in participating in such a group, I invite you to check out 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…

Just keep swimming

“When life gets you down, you know what you gotta do?

Just keep swimming,
Just keep swimming,
Just keep swimming swimming swimming,

What do we do we swim swim swim”

Finding Nemo


Alan Klapperich
GIG of ECW Branch Manager

Grieving the loss of Gluten

Grief was the topic for our January meeting. I usually reserve these articles solely for our newsletters that are distributed to group members, however I felt this was important enough to share with everyone.

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

“Grief is a state of being that results from the recognition that the world that “should be” is different from the world “that is,” a world that is forever changed by a loss.”

~ Dr. Kenneth W. Matheson.

Dr. Kenneth Matheson's definition paints a very realistic picture for those who are gluten-free. Our entire world is changed forever once we take that first step in our gluten-free journey.

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!”

Not surprising, that euphoria quickly dissipates. The reality of the situation rears its 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 could be a bumpy ride.

Going gluten-free creates a massive jumble of emotions. The biggest and probably most complicated 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].

While terminally ill patients are using these concepts to deal with their diagnoses, it can be useful in any grief or loss situation - loss of a loved one, a divorce, a job, a pet, a food, an old lifestyle – any life-changing event.

“Suppressed grief suffocates, it rages within the breast, and is forced to multiply its strength.”

~ Ovid

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, dealing with it is a must. Repressing or suppressing grief is detrimental to our well-being resulting in a variety of emotional and physical symptoms (headaches, gastrointestinal problems, heart palpitations, etc.). 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 possess the power to create whatever we wish! Create wisely.

The grief cycle of
DenialAngerBargaining - DepressionAcceptance (DABDA) is unique as your fingerprint. Everyone deals with trauma differently. These stages are not rigid or sequential in their order of experience. We don't always move through the cycle in the described order, nor do we experience every stage. Transitioning can be fluid; subject to the ebb and flow of emotions. Do not be surprised if you find yourself visiting steps multiple times.

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.

“Celiac Disease? Bahhh, that doctor is wrong, just like all the others! His fancy book learnin' and medical tests – it's all bogus.”

“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 come flooding in resulting in anger. We can be angry at something, someone, or even ourselves. Due to the years of misdiagnosis, the medical profession often takes the brunt of the aggression.

“Why wasn't this caught earlier? Damn doctors!”

“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.

“What if I only have gluten on my birthday? One piece of cake won't hurt me.”

“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 to 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.

“My friends won't want to hang out with any more. I'm a social outcast.”

“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.

“Well, I'm not happy about this, but I'll do it if I have to.”

“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 many in the gluten-free community have attained this level of "enlightenment." With embracement, we focus on the positives and benefits that the gluten-free lifestyle offers. We dive into our new lifestyle head first. We have found a purpose; educate, motivate, and advocate for others.

“Going gluten-free is making me eat healthier than I ever have. I am trying and loving all sorts of new foods. So many naturally GF foods.”

“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.”

Additional Information

"Practical Ways to Cope in the Grieving Process"
Dr. Kenneth W. Matheson

Sadly, the link to Dr. Matheson's paper is no longer available.

  • Understand and accept the dynamics and process of grieving by reading/self education or by seeking professional counsel.

  • Be honest with yourself about your situation and your emotions.

  • Be courageous enough to share your feelings.

  • Find a sympathetic, understanding supporter or counselor who can provide feedback and input sorting out hurt, confusion, and feelings and move toward a resolution.

  • Reduce responsibilities and restricting commitments in order to minimize the stress load.

  • Don’t feel guilty about your grieving.

  • Attempt to engage in productive, contributory activities.

  • Endeavor to help to others who are grieving.

Local support groups have so much to offer when it comes to helping people deal with their new gluten-free life.

“We must embrace pain and burn it as fuel for our journey"

~ Kenji Miyazawa

My Personal Path

Just as we all react differently to gluten, we all uniquely handle the grieving process. I've been asked how I dealt with the emotions of abandoning gluten. Looking back, I don't feel I went through all of the stages.

Denial – I was sick and afraid, seeking answers. No denying something had to change.

Anger – Like so many, I was upset with the medical profession for a variety of reasons but realized I had to let that go.

Bargaining – Perhaps oddly, I didn't bargain. 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! I went all in by starting GIG of East Central Wisconsin.

Here are a few things the helped me attain gluten-freedom. Maybe they'll help you too?

Faith – While it may not be popular to talk about a higher spiritual power, it was an essential factor in my journey. Throughout the entire process, I didn't know why I was going through it, but I felt there was a reason for it. Later I would discover a passion and a purpose that didn't exist before; what a fantastic gift!

Knowledge - 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. As the fear dissipates, I am better equipped to handle the situation.

Creativity – Even before I had to give up gluten I liked to cook. For me, cooking is a creative process. I enjoy the process of creating, whether it's a stained glass piece, a song on the guitar, or something new for dinner. Cooking offers me unique challenges of using unfamiliar ingredients to create innovative 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 stumbled upon a discussion board inhabited by a few people who helped me figure it all out. I had an online support system.

Not only did I have an online support system, but I was also fortunate enough to have a very supportive spouse, friends, and family. I don't think too many people outside of my wife thoroughly knew what I was going through, how scared I was or how sick I felt.

Having a support system to help you through those dark times is a tremendous advantage. They watch out for you and guide you. 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 - As I was figuring out my issues, I realized that I was gaining knowledge that could be useful to others. This epiphany allowed me to step outside of myself and my problems. I would bristle with energy when helping others.

I started by contributing to the very same online discussion boards that helped me. There were others just starting out – just as lost, just as dazed and confused as I was. Starting a local support group took the process to another level.

While it may appear that I was ignoring my emotional needs, I feel “doing for others” helped me to understand & process the feelings I was having. I consider this aspect most vital to 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.

“Grief is the process that allows us to let go of that which was and be ready for that which is to come” ~ Therese A Rando

Final Thoughts

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 in the wings.

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, 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!

Alan 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

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