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First Epidemiological Study of Gluten Intolerance in the United States

The abstract below will be published in the April, 1996 issue of Gastroenterology. It was accepted for poster presentation for the Annual meeting of the American Gastroenterological Association. The poster section will be on May 22, 1996 (12-2:30 PM) in Hall D, at the Moscone Center, San Francisco, CA.

ENDOMYSIUM ANTIBODIES IN BLOOD DONORS PREDICTS A HIGH PREVALENCE OF CELIAC DISEASE IN THE USA. T. Not, K. Horvath, *I.D. Hill, A. Fasano, A. Hammed, +G. Magazz=F9. Division of Pediatric Gastroenterology & Nutrition,= University of Maryland School of Medicine, *The Bowman Gray School of Medicine, Winston-Salem, & The University of Messina, Italy.

Several epidemiological studies in Europe using antigliadin (AGA) and endomysium antibodies (EmA) for initial screening report the prevalence of celiac disease (CD) to be about 1 out of 300 in the general population. The EmA is most reliable for screening with greater than 99% positive predictive-value in subsequent biopsy-proven cases. There are no comparable scientific data for the USA yet, and celiac disease is considered rare in this country. Lack of awareness could result in significant under-diagnosis of celiac disease in the USA.

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Aim: To determine the prevalence of positive serological tests for celiac disease in healthy blood donors in USA.

Methods: Sera from 2000 healthy blood donors were screened for IgG and IgA AGA using ELISA test. All those with elevated AGA levels (IgA >18 units or IgG >25 units) and those with high normal levels (IgA 10-18 units or IgG 15-25 units) were tested for EmA by indirect immunofluorescence using both monkey esophagus (ME) and human umbilical cord (HUC).

Results: The mean age of blood donors was 39 years, with 52% being men, 87% being Caucasian, 11.5% African American, and 1.5% Asian. 95 (4.75%) of the subjects had elevated AGA levels (IgG and/or IgA). A total of 44 (2.2%) had an elevated IgA AGA. Of these, 7 were also positive for EmA. No patient with only raised levels of IgG AGA was positive for EmA. Of the subjects with high normal AGA levels, one (IgA 12 units, IgG 1.8 units) was positive for EmA. Among the total of 8 subjects with elevated EmA levels, seven were Caucasian and one was African American. There was a 100% correlation between ME and HUC for positivity (8 samples) and negativity (288 samples).

Conclusions: The prevalence of elevated EmA levels in healthy blood donors in USA is 1:250 (8/2000). This is similar to that reported from countries in Europe where subsequent small intestinal biopsies have confirmed celiac disease in all those with EmA positivity. Based on a positive predictive value of >99% for celiac disease in patients with elevated EmA levels, it is likely that the 8 blood donors identified in this study have CD. These data suggest that celiac disease is not rare in the USA and may be greatly under-diagnosed. There is need for a large scale epidemiological study to determine the precise prevalence of the disease in the USA.

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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?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.