Confessions of a Former Celiac Cheater

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If you have Celiac Disease, a gluten free diet is not one you can cheat on. However, I did for the first 2 years of my diagnosis. The key thing I lacked? Support. Compassion. I’m sharing my story to encourage others. 

the loss of bread may tempt one to be a Celiac Cheater

It All Started In a Facebook Group

I found myself commenting in a Facebook group the other day. Someone was newly diagnosed and had questions. I offered answers. Another woman newly diagnosed with  Celiac Disease admitted she still ate gluten every few days. I responded sharply to her. 

But now I’m not sure that I handled it well. Later I was humbled as I remembered I too was once a Celiac cheater. Therefore, I want to share my story, explain why we need to discus this, and offer suggestions if you want to help someone who also wrestles with this.

I Didn’t Always Stick to the Gluten Free Diet

Maybe Celiac cheater isn’t quite the right term. Because “cheat” invokes feelings of shame, which isn’t my attempt. I’m trying to educate. See, like this young woman, I too ate gluten despite my Celiac Disease diagnosis. Those first two years of my diagnosis were rough. (In this other woman’s defense, she received her diagnosis less than a year prior of our Facebook discussion.)

My dad and my grandmother, both diagnosed with Celiac Disease, also fell into the Celiac cheater category. My grandmother never followed the diet in my presence. Neither did my dad. (I share this and more in my Celiac story about my diagnosis.) 

It’s Tough To Eat Gluten Free When You Have Little Support

In addition, my mother was in the medical industry and not the most helpful in making foods I could eat. My significant other at that time was a paramedic and told me that it was all in my head and that I had “more problems than a third world country.”

To say that I did not have positive Celiac role models or health support at the time would be an understatement. At the same time, I started my student teaching. My classroom teacher was far from supportive. I distinctly remember leaving her room and hiding under a table after a stressful day. That time period was, in a word, rough hell.

Feeling unsupported may lead one to become a Celiac cheater

Our Medical Community Fails to Address the Social Side of Celiac Disease

When I was first diagnosed, my gastro passed me off to dietitian. She told me what I couldn’t eat. No discussion of social stigma.  There was never a serious “sit down heart to heart” about the dire seriousness of Celiac Disease. In 2002, I met the man who is now my husband. That’s when things started to change.

Why? For once I had someone in my corner that was concerned about my health and needs. In addition, I finally had time to join a support group that gave me advice and helped me to not feel alone.  (Click this link for a list for Michigan Celiac Disease Support organizations. ) Third, I was finally able to work consistently enough to buy my own Celiac-safe food!

How My Lack of Adherence Impacted My Body

While I did take it more seriously, this gal was far from perfect. I ate regular cake at my wedding in 2003. As most with Celiac Disease do, I didn’t want to make a big deal about it. However not following this medically necessary diet has its consequences. We were never able to conceive. My teeth are discolored from years of calcium malabsorption.

To this day some of my extended family don’t take my needs as seriously now because I didn’t take them seriously then. I don’t know when I became strict with my diet. Maybe by the beginning of 2004. Two years of knowing, but wrestling. Knowing what I know now, I would NEVER CHEAT on this medically necessary diet. My hope is that you will not either. 

I explain why i share my Celiac Cheater story


Why I Feel It’s Important to Tell You This Story

So why am I sharing my Celiac cheater story with you? One, I wanted to be transparent. I want my readers to know that I struggled just like everyone else. We only build community through honesty. That was one thing I lacked in my new diagnosis. Community.

This is not uncommon for those newly diagnosed. Family is unsupportive. Friends are unsupportive. Everything is new and scary and you just want things to go back to the way they were. So if you encounter another “Celiac cheater,” stop to learn their story. You may be the only one who has acted like they care. And you may be the one person to convince them that this is one diet they should never cheat on.

Compassion or Criticism?

I realize that I may be opening myself up to criticism. “How dare a Celiac Disease advocate cheat on her diet?! Let’s grab our pitchforks and get to stompin’!” Which brings me to my second reason for this Celiac cheater post. I want to remind us to all be compassionate to those who are still learning.

Maybe even those who have been diagnosed for a long time. None of us are perfect. In addition, we accomplish more with compassion than with confrontational criticism. Especially in our own community. If we have infighting among us, how will those who are undiagnosed take us seriously?

To convince someone to not be a Celiac cheater and to follow their diet, they need to know you care about them

Expressing Your Concern to a Celiac Cheater

Lastly, I want to discuss some ways we can help move those we care about who have Celiac Disease to stop eating gluten. It took my dad seeing the change in me after my diet compliance to truly change how he ate. Especially in the older population, we know SO MUCH more now than we did even 20 years ago. It may help to use “I” statements to get them to understand your concern.

“I love you and want you around. I care about you and want you to feel good and be happy.” Being diagnosed with Celiac Disease is a lifelong change and commitment. As my husband says “No one has ever been argued into Heaven.” Negativity and anger rarely become motivators in getting people to change.

Maybe Share These Consequences of Not Following The Diet

Dental Defects
Anxiety / Depression
Joint Pain
Mouth Sores
Developing other autoimmune diseases
200+ more associated life-robbing symptoms

My dad, a former Celiac cheater, now suffers from a long list of health issues

Sharing My Father’s Story

Can I share some of my dad’s story? He ate a non gluten-free diet for 10-20 years. For years he struggled with an autoimmune lung disease they couldn’t cure. They put him on autoimmune suppressants. And while his immune system was surpressed, he developed oral cancer. Doctors had to remove half of his tongue to save him. 

For years he was on prednisone to treat his lungs. Which in turn, lead to diabetes and other health issues. He couldn’t get a lung transplant, until he was 5 years cancer free. He died just a few months short of that. Can I say definitively that his Celiac Disease caused all this? No. But it could not have helped, either.

What if A Celiac You Care About Won’t Listen? 

What do you do if a Celiac cheater refuses to listen? What if they refuse to change? In the end, we need to decide which is more important – relationship or “being right.” We need to try to understand their story, as well as ours.

Why does it make us so angry? Do we feel their lack of adherence says that they don’t care about us? Or are we mad that life is harder for us because we take it seriously. Knowing our own motivations for our reaction are half the battle.

**Did it take a while for you to faithfully follow the Celiac Disease diet? Are there still times you struggle with temptation? Are you having difficulty convincing family members to stick to the diet? Please feel free to share your story below so we can support one another!**


  1. I will have to say that when I was first diagnosed, I probably fell into this category as well. It was the little things….like eating just the cheese of the pizza or trying to carefully lick the frosting off a cupcake. I was new, and I just didn’t understand. When I got pregnant with my daughter I was petrified about miscarriage (early term miscarriage can also be a celiac disease symptom) and became anal. That’s also when I started learning more. I think this is definitely a topic that needs more discussion!

    1. Dear Amanda,
      Thank you so much for your honest comment. We all have to start someplace, and we’ll only get better if we support one another. I totally was one who just ate the pumpkin pie filling out of the crust when i was diagnosed, so I 100% understand your cupcake frosting comment!

      1. I was diagnosed with celiac disease in 2009 (age 23) and followed a GF diet for 5 months before getting pregnant and being put on wellbutrin for my depression. During this time the wellbutrin caused severe constipation so I was struggling to use the bathroom properly. One day during my pregnancy I was craving a sandwich and “cheated”, I had zero side effects and just figured being pregnant with my daughter cured my celiac. When I was first diagnosed by a Colonoscopy all I was told was I have celiac and to eat GF, no other education was given, no references or guidance and no warnings or what could happen if not followed. So going back to I now have in my head that I am ” cured” of my celiac because nothing happened when I ate gluten, so I continued to test this theory. I have been eating whatever I want everyday since 2009, fast forward to May 2022 and my doctor decides they have to take me off my wellbutrin ( I have been on since 2009) because my depression is too out of control and I was starting to have self harming thoughts. Let me tell you that when I stopped that wellbutrin my world fell apart. I could not eat anything without passing it whole moments later, I for the life of me could not figure out what was going on. I ended up in the hospital severely dehydrated and they began to run every test on me. DR came back and let me know I have celiac disease, I laughed and told him ” oh, no my daughter cured that years ago 🤦‍♀️”. My wellbutrin had “masked” every symptom and sign I should have had being a celiac. Since May of 2022 I have been completely GF diet, make up, shampoo, etc. I have a great support system at home ( my husband was there the day I was first diagnosed and is happy we have more food options available now ). I am happy to say I have joined some great groups of people and I have wonderful doctors who are helping navigate toward making sure I have not caused serious damage to any part of my body during my “cheat phase”. I am the only person in either sides of my family who has a diagnosis or shows any signs of celiac.

  2. Bravo on your honesty and compassion! I was one of those people who got my diagnosis and never cheated again. Since my symptoms had been so dramatic and I thought I was dying, it wasn’t hard for me to see the direct result of gluten entering my system, even in small doses. However, now that my daughter has been diagnosed with non-celiac gluten sensitivity and her symptoms are sporadic, it’s so hard to keep in the mindset that she has to be consistent and safe. Someone told me once that you’re only as strict as your symptoms severity (or something like that). I think we could also add you’re only as strict as your support system is strong. I’m so sorry for your history without a strong support system, and very proud of you for fighting your way to better health! Love to your dad. That is a high price to pay.

    1. Thank you for your kind words. I still had symptoms, just lacked the ability to care.
      Please keep my dad in your prayers. His health journey is far from over. They knew so little when he was diagnosed, and would have benefited from doctors who knew what they were talking about. Sadly, doctors today seem just as ignorant. 🙁

  3. This is a wonderful post, Maggie. Thank you for sharing your story. I’m sure it will help others, many others.
    Love and huggs,
    Mom # 2

  4. Margaret thank you for such an honest post. I remember early on cheating and someone telling me to go buy these vitamins at GNC that blocked the gluten. As you can imagine, they didn’t work. The very first time I got sick I vowed never again. I have not knowingly or willingly eaten anything with gluten since then and my life has changed for the better. I feel so healthy and after being sick for so many years I would never want to relive those days ever again. So no, I can’t just take one bite of pizza or one sip of beer, it’s not worth it at all.

    1. Dear Karen,
      I so agree. Shortly after our wedding in August of 2003, I say a piece on the Today Show about Celiac Disease and how it leads to infertility. After that, I was never worth cheating again.

  5. Great perspective! I went strict GF after diagnosis in 2010. I was losing my life, so once I knew the foe I was battling, I never changed course. I made up my mind to override gluten cravings so they would not drive me insane with cravings. I studied everything about living GF and started learning how to make/bake whatever I wanted. I was blessed to have family and friends who are curious to learn and help, not ridicule and undermine. I am greatful for your perspective because it will help me become a better mentor to those who have joined my hometown community page. Thank you!

    1. After being diagnosed for a long time, sometimes we forget what those early days are like. After being DX almost 20 years, and feeling so much better, I need to remind myself what it felt like long ago so i can be compassionate. Glad I could help!

  6. I hope you and your dad are ok I Ihad celiac for years. I cheated for a while got a big huge rash on my back and itched all day and night. I had a high fever too. Now I gladly stick to the celiac diet. I never want to feel that reaction again.

  7. Great article! I too “cheated” at first. Well the Dr found it while thinking I had Schotzki ring, took a byopsi and fould celiac damage. I tried the gluten free thing for a couple months. I was getting frustrated while grocery shopping. One day I said, I’m not doing this anymore, I was and still am asymptomatic (no issues). So I enjoyed eating normal food. 😋. It wasn’t until food food got stuck in my throat and my husband took me to the ER did I start the Gluten Free lifestyle. Turned out I have EoE too. One thing that’s helps EoE is eliminating certain foods, gluten is a bug one. So I’m back to living my GF lifestyle and hoping for a magic pill to hopefully eat gluten again one day!

    1. Thank you so much for sharing your story. There are so many people who are aysmptompatic, who don’t understand that damage is stil being done. Hope your health is improving!

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