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!
8. We don’t want your pity. We want your support.
My friend Sarah D. brilliantly pointed out this truth. Yes, living with Celiac Disease can be hard sometime. But for the most part, life can be pretty fantastic. We can walk and dance and talk and joke. We simply can’t eat gluten. We don’t need your pity or sympathy. We need your encouragement and your support and your understanding. Every once in a while, we need you to be a voice for us, when we can’t speak up or are tired of doing so.
9. Bullying is real, and we’re tired of being a punchline.
I previously wrote about food allergy bullying on my site. When I asked on Facebook what Celiac Disease truths we wished others would know, a man shared my post. He admitted that he used to joke about gluten-free dieters. That is, until his mom was diagnosed with Celiac Disease. Then he saw just how violently sick it made her. Folks, we need to remember to be kind. We often don’t know what another has walked through until we experience ourselves. Please show compassion versus callousness.
10. It really “burns” us when you insist you can “cook” the gluten out of something.
Among all the Celiac Disease truths I’m presenting here, I need everyone to understand this one. The number of times I’ve heard restaurants say “Our pizza oven is hot enough to burn the gluten off” is more than I can remember. Gluten is a protein found in wheat, rye and barley. It is not a bacteria that can be “killed.” So please, make sure there is a barrier between my food, and any surface that previously had wheat or malt on it. Because trust me, my body will know.
11. Gluten free food can taste amazingly delicious.
I usually take jokes about Celiac Disease in stride. I try to let many things roll off my back. However, what unnerves me most are people who automatically think anything gluten free tastes bad. Our community may be partially to blame for this, as we can be vocal about our likes and dislikes. However, I know gluten free cooks and bakers that create AMAZING things. There are so many more things we CAN eat than we can’t eat. For example, this naturally gluten free quiche pictured above.
12. Celiac Disease is not a food allergy.
Again, when I asked my Facebook page community what Celiac Disease truths they wanted others to learn, this was towards the top of the list. While some may use the word “allergy” when dining out, please know Celiac Disease is NOT a food allergy. They trigger different reactions in the body, and diagnosed very differently. (Read my post on how to get tested for Celiac Disease accurately for more info.) Food allergies can be instantaneously life-threatening, and require immediate medical intervention. Therefore, let’s make sure to reserve the seriousness of this word for those who desperately need it.
13. I am not an overprotective parent.
While Celiac Disease may not cause anaphylaxis, it still requires serious attention. So chill when your fellow mom asks a gazillion questions prior to a playdate. We know all the places gluten likes to hide in foods. It’s not that we think you’re incompetent or uncaring. We just know how vigilant we have to be in our own homes. This escalates a hundred-fold when we start talking about making sure our kid is accommodated in school. Really, we’re not trying to be difficult. We simply want to take care of our kid as you would want us to take care of yours.
14. Do not exclude us from social events because of our disease.
Often, when it comes to these Celiac Disease truths, we excel at advocating for others. Especially our kids. But if we’re really honest, being excluded from events and friend gatherings as adults stings just as much. Even if you’re going out to eat someplace, please invite us anyway. We care more about our friendship and community than food. Or at least we’re trying to.
15. Regular sourdough bread is not safe for those with Celiac Disease.
This, of all the Celiac Disease truths, really drives me nuts. Sourdough made with wheat flour is NOT safe for those with Celiac Disease. I fail to know where this idea even started. Maybe people confuse distillation with fermentation? Sourdough, made from regular wheat, still contains all the gluten particles with which it started. So please stop trying to feed it to us. If you have Celiac Disease, please stop passing this falsehood on to others. Our health depends on it!
So a big thank you to my Facebook friends, followers and fans, who shared their hearts on my Facebook page. Without your voice, this list of Celiac Disease truths may never have been heard. A big round of applause for those who advocate for truth about this disease and diet every day. It takes a village, that’s for sure.