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  • Jefferson Adams
    Jefferson Adams

    Has the Gluten-Free Food Craze Made Things Worse for People with Celiac Disease?

    Reviewed and edited by a celiac disease expert.

      How has the influx of new gluten-free products in the last few years changed the experience of people with celiac disease?

    Caption: Image: CC--Douglas Taylor

    Celiac.com 10/30/2018 - Products with “gluten-free” were unknown just 20 years ago. Now, driven by new labeling standards and demand that far exceeds those on medical diets, the market for gluten-free foods is expected to hit $2.34 billion in sales by 2019. That’s more than double the 2014 level. How has the influx of new gluten-free products in the last few years changed the experience of people with celiac disease?

    A team of researchers recently set out to investigate how the recent proliferation of the gluten‐free industry has affected individuals living with celiac disease, with a primary focus on their social lives and relationships. The research team included J. A. King, G. G. Kaplan, and J. Godley. They are variously affiliated with the Department of Sociology, Faculty of Arts, University of Calgary, Calgary, Alberta, Canada, and the O’Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.

    The team employed interpretive phenomenology for study design and analysis. Team members held semi‐structured interviews with 17 adults with clinically diagnosed celiac disease in Calgary, Alberta. They recorded the interviews and transcribed them for analysis.

    These 17 Canadians living with celiac disease reported that they perceive the growth of the gluten‐free industry as a "double‐edged sword." Although they are grateful for more readily available, more palatable gluten‐free options, they are increasingly faced with misunderstandings about the severity of celiac disease as a perceived result of many non-celiac disease individuals subscribing to the gluten‐free diet. 

    Participants also felt they may be perceived or even perceived themselves differently, such as "high maintenance," etc. To help mitigate these social ramifications of following the gluten‐free diet, participants utilized various strategies. According to the study’s authors, simply telling celiac patients to adopt a gluten‐free diet ignores the regular challenges faced by those patients. 

    The authors of the report are calling for doctors to consider the indirect burdens for celiac patients who must adopt a gluten-free diet when making their recommendations. But how? The report says nothing about what exactly doctors are supposed consider, or what they should tell patients about the challenges of a gluten-free diet. People with celiac disease probably do need more information up front as they begin to follow a gluten-free diet, but clearly far more input and study are needed. 

    This study tells us that seventeen people in Alberta, Canada say that being gluten-free by medical necessity is both easier and more challenging than it was in the past. That it was both more manageable, but also more stressful, because gluten-free fad dieters are confusing everything. What are we to make of this?

    Talking informally with 17 celiac patients and writing up the results may not rise to the level of a solid study, and their input doesn’t really tell us much about how to improve their situation. Also, blaming the popularity of the gluten-free diet as a cause of confusion or stress in people with celiac disease could be an overreaction. 

    Remember, ten or twenty years ago when most people had nearly zero awareness of celiac disease or the gluten-free diet? That included doctors who were trying to diagnose it. To have these inconvenient misunderstandings, people must first have some idea that celiac disease exists, and that a gluten-free diet is part of it. Is it possible that, as annoying as such misunderstandings may be, they represent progress, however incremental? 

    Perhaps the annoyances are real, perhaps they are perceived. Perhaps they are a reflection of slowly rising awareness levels. But the study doesn’t tell us any of these important details.

    Again, there’s little question that people with celiac disease need more information up front as they begin to follow a gluten-free diet, but clearly more input and study is needed so that we can come up with an accurate picture of the challenges and provide the best ways to meet them.

    What’s your experience of the rapidly changing gluten-free landscape?

    Read more at: JOURNAL OF HUMAN NUTRITION & DIETETICS. First published: 02 October 2018 https://doi.org/10.1111/jhn.12597

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     I see this directly with my Doctors, in Restaurants and with friends.  I have not be diagnosed with Celiac, the two tests done came up negative.  My family doctor thinks I am crazy and need to resume eating gluten because of the negative result and she is not sold on Celiac or Gluten Intolerance as real. My GI Doc. said they came up negative because I had not consumed Gluten for 6 - 8 months prior to taking the test. He has given me two choices, start eating gluten again and in a month or so retake the test or just go without because it makes me feel better.  My reactions are pretty sever with I eat Gluten accidently - I get stabbing pains in my stomach, very nauseous and really cold (like when you have the flu and you have a fever) which lasts for 1 to 2 hours. 

    I have friends who have told me just to eat around the gluten (we were served stuffed pork loin) and at times told a little wont hurt you. The pastor of my church told me its too much trouble to provide the gluten free host because if he accommodated me he would have to accommodate everyone and there are too many people he know would need the accommodation.  He then said to Suck it up and be a man (very pastoral). 

    I had a pizza restaurant clean up the area, change gloves, use clean ingredients. Then place my pizza in the wood fire oven, on the stone which all the pies go and next to and touching at time a regular pizza.  When I said something they said it will be ok and not worry about how they do things.   On another occasion I called a local restaurant if they had any Gluten Free options, the girl who answered the phone asked the owner who yelled "tell him we have nothing for him!  We will not feed him we have nothing!"  One Chef asked me what had Gluten in it. Another restaurant manager said we deal with this all the time, if you want something Gluten Free call us 24 hrs. in advance and we will make sure you are accommodated.  I thought great and called back 24 hrs. (actually 36 hrs.) before.  I asked him what they can do gluten-free, and one thing was Chicken or Eggplant Parm.  They would get gluten-free bread crumbs and make it.  So I ordered the chicken and my daughter the eggplant, both came without breading. When I asked the waiter he said the Chef told him he forgot to go out to buy it and so this is what we can do and you should be pleased we do that.  I have ordered that in other restaurants and been happy but this one is much pricier and only went there because of their promise.

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    I only trust grocery products labeled; "certified gluten-free".

    I no longer eat out since the restaurant staff attitude "disgusts" me & cross-contamination prevails.

    Eating out brings with it "high anxiety" issues & that's just not worth the price of a meal, besides I've become a "fabulous" cook.  Cost wise & taste wise there is no comparison.

    Want some fun recipes? Go to the thrift shop & get any magazine that appeals to you & switch the items to gluten-free.  I keep adding better & better recipes to my monthly meals calendar.  Thank goodness wine & brandy are naturally gluten-free & there are two potato vodkas on the market that can be used for meat marinades & sorghum beer for fish frying.  

    Hubby states that he's is sad that I have celiacs, but adds he's never eaten such good food in all his life.  

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    42 minutes ago, FitnessPro said:

      He then said to Suck it up and be a man (very pastoral). 


     When I said something they said it will be ok and not worry about how they do things.   

    When I asked the waiter he said the Chef told him he forgot to go out to buy it and so this is what we can do and you should be pleased we do that.  

    Wow.  Unbelievable behavior and I am so sorry you had to deal with that.  If you kept your composure, kudos to you.

    Those are some great examples of things I think I, and maybe others, need to stand firm against.  Politely, of course.  Doctors, Religious leaders, and 'experts' like chefs are not infallible and we need to stand firm when we are told these absurdities.  I've reached a point where I will courteously tell someone they are misinformed or ignorant of the facts/definition when it comes to me and my health and wellbeing.  No one should be told to 'suck it up' in reference to a medical condition and I would make that clear to my pastor or anyone else that callous.  And restaurants?  We're paying.  PAYING for them to do these jobs.  If they don't want the job they should refuse it.  Otherwise, we are like any other paying customer and shouldn't be 'grateful' for the poor or nonexistent efforts.  I would imagine the pizza place would change their tune if they looked at the gluten free parameters the way we look at peanut allergies today.  

    Courtesy is important to me, but I've learned there's courtesy and there's behaving like a doormat.  I can be courteous and still protect myself and stand up for myself the same as if I had an outwardly obvious medical issue.  Just because I can't point to it and say 'see?' doesn't mean I can't act with the same confidence in the face of other's dismissal.

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    14 hours ago, Ging said:

    My eyes have been opened to one big drawback from the 'fad' gluten-free dieters through reading these comments - the difference between products flooding the market that are marked 'gluten free' and those that are CERTIFIED gluten free.  I'm still fairly new to this.  If I see 'gluten free' I may believe it and end up getting glutened without realizing that it's actually not certified. 

    If it says Gluten-free or Certified Gluten Free, it means the same thing.  They cannot put either on the label without it meeting the federal standards...20 ppm or less.  There are also 3 different organizations that  can label as "Certified" and they have different standards from each other.   I am also a Silent Celiac and have been following a strict gluten-free diet using the "Gluten Free" labels as a guideline and the Gluten Free Scanner for things not labeled gluten-free but showing no gluten ingredients.  My labwork has always come back clear for gluten response.  If you linit yourself to "Certified Gluten Free" foods only, you will be dramatically eliminating perfectly safe choices.

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    I lived in agony for years, too embarrassed to discuss my symptoms with a doctor. Always carrying Pepto Bismol or Kaopectate in my purse and office drawer. I, for one, am glad about this gluten free thing. I finally live in peace! Now, I have many choices regarding the food I eat. 

    I really don't care what ignorant people think about me and if they make jokes, I'll tell them my symptoms....

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    New gluten-free products are fine.  But most are non-nutritious, high-calorie, high-fat snack foods rather than meal options.  And they almost never replicate the texture and taste and satisfaction of the real thing.  It must feel something like being a diabetic and opting for low-carb sugar-free "replacements" for what they really crave.

    And yes, others are skeptical that celiac disease is anything to worry about.  "Wheat? Barley? Rye? People have eaten those since the dawn of agriculture.  How could it be a problem?"  I used to try to explain.  Now, I just shrug and say, "For me, it's a problem."   I feel socially isolated sometimes when the gang gets together for pizza (gluten-free pizza is horrible), fried chicken,  or trying a new restaurant.  Food is a great social draw.  We all have to eat, right?  My sister goes into anaphylactic shock if she eats shellfish.  Of course, that is highly dramatic and potentially deadly.  Diarrhea, stomach pain, headaches, rash and brain fog that I get from gluten is rarely witnessed by anyone but me.  It is the Silent Killer of Socializing.

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    The one thing I am not is a doormat, but I have friends who are and I will often stand up for them when in public.  You are so right when saying you must be polite but firm.  One of the associate pastors at the church told me had keeps gluten-free hosts on hand and will make sure I get it when he is there and the Pastor is not. 

    A few weeks ago we had a breakfast at work and everyone brought something in, I always bring something substantial (like a hash brown casserole)  I know I can eat and only eat that.  This time I felt bad because one of the girls brought in eggs with bacon and no one ate it.  SO I asked her what was in it and she said eggs, milk and bacon. I tried some and got sick as a dog, she then said well not bacon but bacon bits!!!

    I had a male friend who mocked me the other day and said how bad can it be.  So I told him I would replicate the feeling for him so he could feel it.  He agreed so I told him to drink this bottle of vinegar all at once, then I would punch him in the stomach about 4 or 5 times and throw him into the pond (it was a rather chilly day).  He asked, how would that prove anything.  I said that's how I feel when I eat Gluten, so lets go out side and I will demonstrate.  He declined and no longer harasses me (I'm glad because I typically only resort to violence as a means of self-defense, and I'm quite adapt at it!).

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    I don't become offensive in order to attend to my own health concerns.  Going on the defense rarely helps either, unfortunately!  I don't go out of my way to let others know I have Celiac Disease and what kind of diet that requires.  But if they ask why I'm not joining in pizza or fried chicken or cookies, I just say wheat, barley and rye as well as oats make me so sick I don't dare eat it.  If I say I can't eat gluten, they assume it is a fad diet or confuse it with vegan or low carb or some such.  But if I emphasize I get really sick, they usually show sympathy and drop the subject.  Like you, Mr. F-Pro, I try to carry something I can eat to parties.  That way, I'm participating and not making a fuss.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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