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How Often Do You Get Exposed to Gluten?


People with celiac disease might get dosed with gluten more often than they realize. Photo: CC--Allen McGregor

Celiac.com 09/05/2016 - Currently, a gluten-free diet is the only recommended treatment for celiac disease. But, researchers don't know much about how effective the actually diet is, or exactly what constitutes the normal range of responses among persons with celiac disease on a gluten-free diet.

To get a better idea, a team of researchers recently set out to study a group adults with biopsy proven, newly diagnosed celiac disease. The research team included J. A. Silvester, L. A. Graff, L. Rigaux, J. R. Walker & D. R. Duerksen, variously affiliated with the College of Medicine, University of Manitoba, Winnipeg, MB, Canada, the Celiac Research Program at Harvard Medical School in Boston, MA, USA, and the St Boniface Hospital, Winnipeg, MB, Canada.

The team had each patient complete a survey related to diet adherence and reactions to gluten at entry and 6 months. To measure celiac disease symptoms and gluten-free diet adherence, the team used the Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (GF-EAT), and they assessed a total of 105 participants, 91% of whom reported gluten exposure less than once per month, and showed an average CDAT score was 9 (IQR 8–11), consistent with adequate adherence.

Two-thirds of the subjects reported suspected symptomatic reaction to gluten. For 63% of subjects, gluten consumption was only suspected after a reaction occurred. For nearly 30%, gluten consumption was the result of eating in a restaurant. Gluten consumed came from cross-contamination in 30% of cases, and from gluten as a major ingredient in 10% of cases. On average, symptoms began an hour after gluten consumption, running from 10 minutes on the low end to 48 hours on the high end.

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On average, when symptoms did occur, they lasted about 24 hours, on average; though they ranged from 1 hour to 8 days. Common symptoms included abdominal pain in 80%, diarrhea in 52%, fatigue in 33%, headache in 30% and irritability in 29% of patients.

Adverse gluten reactions are common in people with celiac disease on a gluten-free diet. Eating away from home, especially at restaurants and other homes, carries the greatest risk for gluten exposure.

The team encourages doctors who treat people with celiac disease to question their patients about adverse gluten reactions as part of their assessment of gluten-free diet adherence.

How often do you get exposed to gluten? What happens?

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6 Responses:

 
Thomas Hessley
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said this on
12 Sep 2016 10:14:51 AM PDT
This was a very good article, and the results found in the study mirror my experiences over 22 years of being GF.

 
Jennifer
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said this on
12 Sep 2016 1:23:20 PM PDT
I become violently ill after gluten exposure (think worst case of food poisoning you can imagine). I no longer eat out at restaurants at all, it's just too big of a risk. I'm hoping beyond hope that completely gluten free restaurants and cafes will become common. I believe hospitals and nursing homes will need to eventually have dual kitchens and dual staff, with color coded plates/trays so you can trust your food came from the proper kitchen. Gluten free needs are growing by leaps and bounds each day. This illness will not be going away any time soon.

 
linen
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said this on
13 Sep 2016 1:50:07 PM PDT
Funny you should say this illness is not going away anytime soon. Just the other day on the news they said cases of gluten sensitivity are decreasing. I thought...HA! What a crock!

 
Lori
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said this on
12 Sep 2016 8:41:22 PM PDT
My 11 year old son was "glutened" last month for the first time in 2 years. Yes, it was at a restaurant that assured me the grilled chicken, and fries from a dedicated fryer were GF!

 
Carleen Koller
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said this on
25 Apr 2017 8:17:11 AM PDT
You may not know the answer to this. 19 years ago I was told I had a bad case of Celiac Sprue. I have done great on the diet. I had to have the gallbladder out as it stopped working. For a few years now I complained of feeling of stomach up set after eating. The doctor did the stomach emptying test which failed. In 3 hours the food had only gone down 20 percent. So now I have that problem. So can this be related to celiac sprue?

 
admin
( Author)
said this on
25 Apr 2017 11:55:52 AM PDT
This would be a great question to ask your doctor. Also ask him to re-test you for celiac disease, as it does not go away, so you likely still have it. A gluten-free diet is the only treatment.




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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free