15 Celiac Disease Truths We Wish You Knew

When it comes to Celiac Disease, misconceptions abound. We live in a time with uninformed doctors and ill-advised celebrities who will tell you anything. Many days it feels like society is clueless. I asked my fellow gluten-free friends what Celiac Disease truths they wish everyone knew. Today, I share their responses, as well as some of my own pet peeves.

1. A little bit of gluten can hurt a lot.

I recently asked my followers on my Facebook page, “what is one thing you wish people knew about Celiac Disease?” Immediately, my friend Tracy replied, “A little bit of gluten isn’t ok.” Did you know it takes as little as 1/64 of a teaspoon of gluten to cause intestinal damage? Some may feel that this should be cause for us to never leave the house. However, precautions to eliminate cross-contact can be taken and we should never allow this disease to rob us of our life!

2. You cannot outgrow Celiac Disease.

I talk to newly diagnosed patients all the time. As the chairperson of our local support group, our local gastroenterologist even directs his patients to call me. Once a patient stated he heard from someone else that after a while he can eat gluten again. ABSOLUTELY NOT. Celiac Disease is a lifelong disease. There is currently no cure, and no FDA approved pill you can take to allow you to eat gluten again. While your villi may return, and your antibody levels may return to normal, the gluten free diet is not a cure. You still have Celiac Disease.

3. A gluten free diet is not a weight loss diet.

I think of all the Celiac Disease truths, this one grinds our gears the most. We do not follow this diet to lose weight. Quite the contrary, people newly diagnosed with Celiac Disease tend to gain weight. Often they find themselves with elevated cholesterol levels as well. Gluten free foods are not fortified with vitamins and often contain more sugar and fat than their counterparts.

4. Pregnancy will not “cure” your Celiac Disease.

You may think of all the Celiac Disease truths, this would be obvious. You may be asking “how is this even a thing?” Truth be told, I had one person tell me her pregnancy cured her Celiac Disease. Simply not true. While evidence DOES exist that pregnancy can ameliorate symptoms in those with autoimmune diseases, it cannot CURE any of them. Click here to read more on this phenomenon.

5. Celiac Disease is not a figment of our imagination.

Of all the Celiac Disease truths, this is one medical personnel to need to learn the most. Many doctors dismiss patients pre-diagnosis as simply having anxiety disorder and a nervous stomach. I have heard too many tales of patients dismissed and given anti-depressants instead of adequate medical care. While it remains true that the malabsorption can lead to anxiety and depression symptoms, the underlying cause is still our autoimmune disease.

6. We hate asking questions about food prep as much as you hate hearing them.

To our dear friends in restaurant industry, we get that we ask a lot of questions. However, we hate having to quiz you about how our food is prepared just as much as you hate hearing it. Please know we did not choose this to be trendy or difficult. Also, please feel free to ask US questions. You can ask me what my symptoms are anytime. I will gladly help educate you on Celiac Disease truths, so that in turn you may train a fellow co-worker or learn the symptoms that may save a friend or family member!

7. Celiac Disease affects our entire bodies, and may take us days to recover.

Did you know that gluten ingestion elicits over 300 different symptoms in those with Celiac Disease? My symptoms may not be your symptoms. For me, accidental ingestion makes me EXHAUSTED. Among the Celiac Disease truths I share today, please know that we all react differently. Some may feel better after a day after accidentally eating gluten. Some may take a week or even two before they feel “back to normal.” Be gracious, and trust us when we ask you to not swap serving spoons at dinner!

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