Grieving the loss of Gluten

Grief was the topic for our January meeting. I usually reserve these articles solely for our newsletters to be distributed to group members; however, I felt this was important 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.

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. 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 surprisingly, that euphoria quickly dissipates. The reality of the situation rears its ugly head - "What am I going eat, and how will I 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 essential 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 various 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.

Processing those thoughts, feelings, and emotions is intense work, but it helps us 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
Denial – Anger – Bargaining - Depression – Acceptance (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 losing 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 – 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. 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 various 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. I didn't know why this was happening to me, but throughout the entire process, 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 dissipated, I felt 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 and 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 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 gained 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—helping others just starting out – just as lost 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 experiences. 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

Therapists Spill: 14 Ways to Get Through Tough Times

“Clinical psychologist Christina G. Hibbert, Psy.D, knows a lot about tough times. Her youngest sister died from cancer at 8 years old. In 2007, another sister and her sister’s husband died within two months of each other. At the time, Hibbert was just several weeks away from giving birth to her fourth child. Almost overnight, she inherited her nephews and became a mom of six.

“I have been a daughter in grief, a sister in grief, and a mother raising kids in grief. I know it is not easy.”

But when you do the work to overcome your difficult experiences, you can heal. “And, when we choose to do it together, our families really can become even better in the end,” said Hibbert, also author of the forthcoming memoir This Is How We Grow.

Maybe you’re going through a similar experience or are grieving another kind of loss: a romantic relationship, a friendship, a job, a house. Or maybe there’s a completely different kind of stressor in your life. Whatever you’re struggling with, here are 14 expert tips to help.”

Read the entire article:

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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02/21/21 - Added PsychCentral article
01/21/21 - Fix broken links