(Post Updated 1-23-2013)

After receiving feedback on this post I would like to clarify this article is talking about people who eat gluten free because it’s a trendy diet, not because they have a gluten sensitivity or undiagnosed celiac. I tried to use the word “trend” and “fad diet” often to convey that. I have made a few updates in the post for clarification.

We  have spent time looking at the benefits of the gluten free food trend– and there are many benefits, including greater awareness and more food products available to us.  But there are some downsides….most importantly in my mind– that people may not or forgo getting tested for celiac disease before going on the diet.

With the trend  of the gluten-free lifestyle becoming a 6 billion dollar industry, naturally many people in the general public might want to know what all the talk is about.  Well, they certainly are not alone.

A study conducted by the Mayo Clinic and  published in the American Journal of Gastroenterology in summer of 2012 reports roughly 1.8 million people have celiac disease (and 1.4 million don’t know it).  But the research added this additional fact — 1.6 million Americans are eating gluten free without ever getting a celiac diagnosis.

What does this mean?

I think it is saying the gluten-free fad diet is fueling much of that 1.6 million number.  I think those folks may not be thinking about celiac disease when they go gluten free but rather, they are thinking about making  a healthy lifestyle change or losing weight (fyi, gluten free diet is not the most reliable weight loss tool).  I caution folks that discounting celiac disease before going on the diet because it is trendy could lead to bigger problems.

If you are eating gluten-free as a trendy/fad diet and unknowingly HAVE celiac disease (remember 1.4 million Americans don’t know they have it), but you forego being tested for celiac disease, there could definitely be some complications:

  • Celiac is an autoimmune disorder.  If gluten-free fad dieters don’t realize they have celiac and then subsequently not follow the diet to a “T” (no cross contamination) they could be putting themselves at risk for future health problems– other autoimmune disorders like rheumatoid arthritis,  or ailments like stomach cancer, osteoporosis, depression, infertility and more!  You don’t want to mess with this.
  • Gluten-free fad dieters could unknowingly spread misinformation about gluten-free diets.  Restaurant employees, co-workers, friends and family watch people on special diets.  They may think you are knowledgeable about gluten free, but your actions may be showing otherwise.  Example:  ordering a gluten free meal at a restaurant and then nibbling from the gluteny bread basket– people who follow strict gluten-free diets can’t do that.
  • Finally, for folks well on their way with a gluten free diet who may want to get tested for celiac disease later, listen to the wise words of Brianne Roycraft who has celiac disease, is a dietitian and runs her business, Personalized Nutrition, LLC,   “If anyone suspects they genuinely have a reaction to gluten they need to be tested for celiac disease prior to going gluten-free.  Otherwise the results will be skewed.”  In other words, patients need to be eating gluten in order to get an accurate blood screening for celiac disease.

There are many reasons why people go gluten free:  celiac disease, gluten sensitivity, gluten intolerance, and for some it may help with symptoms of other health problems.  Readers have shared with me that sometimes people can’t afford to get tested for celiac because of insurance or other reasons– and they still go strictly gluten free and become healthy again.  All of these reasons are valid and important to note.

I am not saying people shouldn’t go gluten free if they want to.   That is a personal decision.  If you are going on the diet because it is one of the biggest trend diets out there, please get educated about the lifestyle and what it entails.  But, if possible, I do believe people should get tested before going gluten free, whether you think you have symptoms or not because celiac disease really isn’t anything to play around with as it can lead to so many other health problems.

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4 Responses to “Downsides of the Gluten Free Trend: Not Tested for Celiac”

  1. I’ve been gluten free for 2 years now without a “proper” Celiac Disease diagnosis, and I really find it unfair to be lumped in with people who go GF as a fad diet! My doctor agreed at the time that considering which symptoms disappeared once I went GF, I probably do have CD, and I know I am so sensitive to cross-contamination alone that I couldn’t possibly cheat and eat something gluten-y. If I do accidentally get glutenized, it’s weeks of non-stop pain, nausea and intestinal issues before I’m over it.

  2. I agree. Since it is such an ordeal to get tested, and we find that so many chronic illnesses go away, one would think that the disappearance of these maladies would be enough proof. Going gluten free is definitely not a good choice for weight loss. It has taken me 2 years on strict GF and dairy free and egg free (diagnosed allergies) to finally heal and begin automatically losing weight. Interestingly enough, as my diagnostician (registered dietitian) promised, I am beginning to be able to begin adding bits of cheese back into my diet. Milk? No. Eggs? Not yet.

  3. I was diagnosed with Celiac disease a year ago this month. I was on a regular non-gluten free diet and my blood tests for Celiac disease came back negative. Luckily I had a very determined doctor on my side that was willing to do whatever it takes to find out why I was in such bad shape. She performed an endoscopy and bingo. I’ve had my children tested and all of their blood tests negative too but I’m a little reluctant to have an endoscopy on them yet. My middle child did have one though, as he has a few symptoms but so far he does not have it, thank goodness.
    I cannot imagine doing this diet just for kicks or whatnot. It’s not easy to be completely gluten free. Sitting there watching everyone else chow down on whatever they want, and I have to eat a burger with a bun that sucks up every tiny bit of liquid or condiment that went on it, even sloppy joes juices get sucked right in, like a sponge. I can get pretty darn vicious sometimes when insensitive people around me offer me a cookie or doughnut or some such gluten laden product. Anyway, I agree, you should not just decide you should go gluten free all willy nilly. Talk to a doctor. Ask to get tested. Trust me, if you do go gluten free just because you think you may have it, and let’s say you do, getting glutenized after an established diet hurts!!! I know every single time it happens. I accidentally licked the kids beaters while making Christmas cookies (I wasn’t even thinking about it) last month and suffered for about two weeks afterwards.
    Well, good luck to you all. I hope my sharing this will help someone out there.

  4. I agree that many people go gluten free just because “everyone else is doing it.” That makes it difficult for those of us who may actually have celiac to get tested. I asked my doctor to be tested and she brushed me off with, “oh yeah, everyone thinks they have celiac now.” I have yet to get her to order a Celiac test for me and yet she has ordered a number of other tests for my symptoms—such as a colonoscopy, an x-ray of my ribs and a brain MRI because I have pain in my abdomen and dizziness. All the tests she ordered came back negative, but she still won’t get me tested for Celiac even though I have all the symptoms, such as bloating,loose stools, skin rash, tremors, etc.

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