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How Common is Non-celiac Gluten-sensitivity?

Celiac.com 11/14/2013 - Until now, rates of non-celiac gluten sensitivity were largely a matter of clinical speculation, basically, educated guesswork among doctors.

Photo: CC--hill_joshSome thought that rates of non-celiac gluten-sensitivity might by much higher than rates of celiac disease in the USA. But there was just no actual clinical data supporting these claims.

A team of researchers recently set out to get some good clinical data that would tell them how common non-celiac gluten sensitivity actually is.

The research team included Daniel V. DiGiacomo, Christina A. Tennyson, Peter H. Green, and Ryan T. Demmer. They are variously affiliated with the Department of Medicine, Celiac Disease Center at Columbia University, and the Department of Epidemiology at the Mailman School of Public Health at Columbia University in New York.

The authors used the Continuous National Health and Nutrition Examination Survey (NHANES) 2009–2010 to enroll 7762 people from the civilian, non-institutionalized, US population free of celiac disease.

They then analyzed the data to estimate rates of adherence to a gluten-free diet among participants without celiac disease as a surrogate marker for non-celiac gluten sensitivity in the US.

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They also used the data to characterize the demographics and general health status of the study participants.

Overall, forty-nine participants reported adherence to a gluten-free diet. With a weighted national prevalence of 0.548%, this represents 1.3 million individuals between 6 and 80 years old in the US.

The prevalence of a gluten-free diet was higher in females (0.58%) than males (0.37%), although this was not statistically significant (p = 0.34).

Participants reporting a gluten-free diet were older (46.6 vs. 40.5 years, p = 0.005), had higher high-density lipoprotein, lower iron and lower body mass index.

These numbers put the estimated national prevalence of non-celiac gluten sensitivity at 0.548%, about half the rate of celiac disease.

However, the team calls for further studies in order to better understand the population burden of non-celiac gluten sensitivity.

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2 Responses:

 
celiacMom
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said this on
19 Nov 2013 5:30:39 AM PDT
This article is very good, but the original research is mediocre. How can they call avoidance of gluten the same as gluten sensitivity? Gluten-containing grains have all sorts of other things, for example FODMAP carbs that in some people seem to cause irritable bowel syndrome (IBS); in fact doctors are telling IBS patients to prefer gluten-free foods but probably not because the gluten but because they wont have the FODMAPs either. Not very scientific research.

 
TheXenocide
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said this on
25 Nov 2013 2:23:43 PM PDT
I concur. This is either poor science or poor representation of science. Adherence to a gluten-free diet is not a valid marker. This study simply indicates, relatively accurately, that a portion of the non-celiac community is adhering to gluten-free diets (by their own report). This is a survey without many signs of noteworthy biological discussion.

I am currently looking for valid science that actually indicates Non-celiac Gluten Sensitivity is a real thing (beyond people saying "I feel better" which means very little in the larger scheme of science). Until that can be demonstrated all I see are people raising the demand (and, therefore, typically the cost) of (already more expensive) gluten-free foods.

That isn't to say that I don't believe it exists, but I'm trying to find good research instead of anecdotal reports. Perhaps there is more detail in the research? I'm not for signing up for websites or paying for science journals without being able to read the abstract first.




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Similarly, I've been vegetarian for 25+ years. A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did. I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.

LOL, that might put it into perspective if I explain it that way.

I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?