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

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

    Has the Gluten-Free Food Craze Made Things Worse for 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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    Guest Aceliac

    Posted

    I was diagnosed celiac 30 years ago. Been gluten free 30 years. Last 7 to 10 years very risky, bouts of being glutened as more production of gluten free food. I do try them. I pray someday that products with gluten free labels Will truly be gluten free with no traces of gluten!! 

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    I was diagnosed in 2007 and had food fear and fear of starving right away. I found because I am Silent I could not rely on having symptoms to tell me that something labeled gluten free was not. At that time legislation for testing had not been ratified. So I still contacted farms and manufactuers to double and triple check there was no cross contamination. I have my favorites I stick to because I negative test results for auotimune response for 11 years. I still check every labels though because ingredients change without notice.

    As far as this article goes I am thankfull for the movement because it has put the disease and problems with gluten more into conversation even if some of those are to make jokes against gluten free in movie and tv shows. I see that as truth of what uneducated people are thinking about gluten free. I tell everyone I meet I have Celiac and explain it to them whether they want to know or not. Someday maybe thier friend or family member may be diagnosed and it wil help them.

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    Guest Roger Slemmer

    Posted

    Restaurants: Randy's in Red Wing, MN. I have been driving past it for years on my way to the Twin Cities and always on their billboard they advertise the availability of gluten-free bread. Last weekend Red Wing was my destination so I decided to try them out. I ordered a Grill Cheese and salad bar. It's sort if an independent fast food place with really no accommodation for Celiacs. No separate grill for avoiding cross-contamination. The manager came out and said she could warm a cheese sandwich in the microwave. I should have just walked back out the door, but I didn't have time before my event. Even the things that are normally okay on the salad bar were not. The real bacon bits were crispier than I expected and they had been fried in butter on the same contaminated grill. The reality is the only ones they were catering to were the crazers. Always ask questions.

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    I agree completely that the “fad” hasn’t helped awareness and actually harmed the way many perceive me now. 

    I spent 14 years misdiagnosed and lost my designing career through it and nearly died before my endoscopy. My life was miserable but I continued to work commercials instead of movies and just put up with being very sick in between jobs. 

    A big problem is that products label the ingredients as “Gluten Free” but they are made in a contaminated environment and we still have to call to confirm. A few delis here in Houston, Texas add a disclaimer to their gluten-free sandwiches actually saying “not suitable for celiacs” and I applaud them. 

    I find a lot of co-workers have no idea that it’s anything other than a fad and some restaurants just suggest removing croutons from a salad etc and don’t pay as close attention in their kitchens to cross-contamination. So, I rarely eat out. It’s also true that I’m considered “high maintenance” by some ignorant people and I resent that gluten-free is joked about in movies and TV without ever making it clear that some of us will be very sick if we eat gluten or something contaminated. I work in film & TV so it’s even more annoying!! 

    I just watched a Hallmark movie yesterday where the lead was asked if her LA parties were different to the Oregon ones and all she replied was that “these were less Gluten Free!” And they laughed. I don’t think this is  a step in the right direction re “awareness”.  I can only think that the uneducated writer must have had a thing about trendy “fads” and thought it a cool line to add.   

    I have experienced wonderful caterers on set who take great pains to make my food “safe” and I’m truly grateful but I usually still have to explain everything to them initially. Some are very familiar with it and I am so thankful. 

    I always tell people who ask about the proliferation of gluten-free products now compared to 16 years ago (when I was correctly diagnosed) that it’s a double-edged sword. AND it hasn’t brought any prices down either!

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    Guest Agreew17

    Posted

    I agree with the 17.

    20 ppm x 2 times a day x several days per week = too much gluten

    dining out and not bringing my own food because the restaurant has gluten-free options = many more opportunities for being glutened = too much stress

    Yes...there are more choices than there were 10 years ago, and yes, the prices are lower, and yes, textures and flavors have improved. Still, it was less socially stressful when there were fewer choices because there was less temptation to eat something - or to be invited to eat something -  that might not be gluten free enough.

    It is my opinion that the more no-gluten-added-on-purpose-offerings there are the less understanding people are about the seriousness of Celiacs maintaining a strict diet and the more likely gluten-free restaurant food is to be contaminated. 

    While it is nice to have choices, and manufactured gluten-free foods do taste better than ever, accidental exposure and social stress are worse than ever. At least this is true for me.

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    Guest Elaine

    Posted

    As a Registered Dietitian I am always concerned about the cross contamination issue at Restaurants. 

    I find that some restaurants offer gluten free items, disregarding cross contamination. 

    Recently at a very nice restaurant, the manager said the gluten free pasta is boiled in the same water as the wheat pasta.  I was told if I was ‘highly celiac’ ????  I could request fresh water and separate pans instead of the grill.  If I had not voiced my concerns and asked questions, my meal would have had a high chance of containing gluten. 

    Here is a perfect example of catering to the gluten free craze, with no regards to those that truly require a gluten free diet!

     

     

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    Going to a restaurant in Reno, Nv has few options.  I believe that only a restaurant owner who personally knows a genuine and knowledgeable Celiac would create the cooking practices that would protect a Celiac.  The only way to find out whose restaurants these are is indeed by asking all the right questions.  Either the personnel trained by (ultimately) the owner or the owner manager himself will be able to answer quickly and sufficiently without hesitation all the specific questions a Celiac would ask.  If, instead, you get general answers or hesitations then that restaurant is not for you. Either one telephones ahead in order to ask and gain knowledge of their answers or if you are present and they can't answer all without hesitation please do yourself a great favor and get up and leave.  Don't fall to the social pressure of being kind in return because the employee tried hard to be helpful in answering your questions.  Especially if you are older like I am.  We may not recover fully in a diet violation like we might have been able to when we were younger!

    PS  the safe restaurants in Reno are PF Changs, In and Out Burger, and Chipotly Grill.  Though there could be more I haven't yet found them.

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    I've eaten gluten-free for five years since a biopsy-confirmed diagnosis, and I guess I'm a bit more mellow about the "craze/fad".  It's gotten more products on the market, and some of the manufacturers have got the extra mile and gotten certification.  So there are a few more things available that one can realistically expect to be safe.  I'm ambivalent about the claims that modern wheat has been bred into being a dangerous food.  But I'm sympathetic to the folks who either believe those claims or want to be on the safe side.  So I have no problem with restaurants that serve "gluten free" food that they admit is not celiac-safe, as long as they make the distinction.

    Five years ago I had to read labels carefully.  I still have to read labels carefully.  That's life.  But my life is so much better after cutting out gluten that I'm willing to do read them.

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    I think the article incorrectly states "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."   I think the problems is that people know nothing about Celiac disease and assume everyone who is Gluten-free is on a fad diet.    They can't be confusing fad dieters with Celiacs when they have not idea the Celiacs exist.   I would love to see "Celiac Awareness Month" a big thing rather than another Breast Cancer awareness event.  I think unless you have been living under a rock, we are all aware of Breast Cancer.  Time to bring awareness to Celiac Disease.   My own mother seems to think it isn't real.

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    It is for sure a double edged sword... in supermarket it’s great to have more  choices, but in restaurants... some of the people just think it’s another gluten-free maniac and they don’t take it as serious as it should be.

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  • About Me

    Jefferson Adams 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, and science. He previously served as Health News Examiner for Examiner.com, and provided 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 Dangerous Grains by James Braly, MD and Ron Hoggan, MA.

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