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When Celiac Disease Leads to Fear of Food

When Celiac Disease Leads to Fear of Food

About 20 years ago, when I was living in New York City as a struggling (doesn’t even begin to describe it) artist, I ate a chicken salad sandwich at a nearby diner. Tasted…ok. About 5 hours later, it hit me. Boy…did it hit me. Food poisoning like I’ve never experienced before or since. The best part? I had to bartend an 8 hour shift that night. Let’s just say I took a lot of potty breaks.

I have not touched chicken salad since that day. Is that rational? I don’t care. I’ve been scarred for life by one sandwich.

I got an email from a mom who is dealing with similar issues with her 13-year-old son. After dealing with undiagnosed celiac disease for so long…well, I’ll let the mom explain.

Hi Gluten Dude. I’ve been an avid follower of you for the last year or so since my 13 year old was diagnosed with Celiac. It has been a long haul for him so far. He was sick for many years, nauseated ALL the time. Constipated and huge white mouth sores. Since his symptoms were not “classic” it took a while for diagnosis and took a lot of pushing from mom (me) to get him tested.

One thing I haven’t seen too many people write about that has been a big challenge for him. After so many years of feeling sick, he has developed SO many food aversions. This is from years of eating something and feeling sick afterwards. Years ago, I ate a bunch of dried cranberries and got the stomach flu that night and have never been able to touch them since. My son sadly has this aversion with probably 70% of foods.

I talked to a man who I met in the GF section at my grocery store who said that his wife has celiac, is 70 years old now and can’t gain weight; not because she can’t find enough GF foods, but because her food aversions are so strong.

I can find millions of GF recipes on the internet that look great, but my son would honestly rather chop off his own arm than eat something with a tomato…or an olive.

So what’s the answer? Has anyone gotten help? Do I send him to a therapist who works with eating disorders? With anorexics? Because this food aversion thing is truly an eating disorder. And as his mom, I just am unsure how to help. He is too thin. He is not growing well. We are deeply concerned as we see his teenage friends shoot up in height. So do we just focus on getting him calories and plying him with the things he likes? Or do we work on reintroducing foods he is disgusted by (most foods). And how would we even DO that?

Anyway, I’m just wondering if you’ve ever written or thought about the associated food aversion/eating disorder that comes with Celiac. Let me know if you have any advice. And thank you again for all you do and for being a lifeline for celiac families.

So sorry to hear about your son’s struggles. Celiac disease affects us in so many ways. Here I am 8 years later after diagnosis and running this blog for 5 years, and I’m still learning new things that my fellow celiacs deal with.

While I am certainly not qualified to give advice on this kind of topic, my gut is saying you answered the question yourself.

Do you send him to a therapist? Yes, I would.
Do we focus on getting him calories? It would seem to make sense.
Do we reintroduce foods he is disgusted by? If you can.

Has anybody in the celiac community dealt with a food aversion before and if so, can you offer up some guidance?

#NoCureNoChoice

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