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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

If Not Super Sensitive..is Damage Still Being Done?
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18 posts in this topic

Hi...so...my husband hasn't tried to eat gluten or anything but he has yet to have any reaction to anything. I've found myself with at least one reaction even though I was more careful. I don't think I'm super sensitive ..at least not as of a while back because i was able to eat amy's products. But....it got us thinking..and it worries my husband...even if you don't react to gluten will it still be doing the damage? Do you have to get sick to be damaged by it? And if not...shouldn't everyone be living as if they are super sensitive anyhow? Kind of confused on this particular topic.

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Yep, same thing goes for the silent celiacs (aka those who get no symptoms whatsoever).

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So if super sensitives react to even trace amounts of gluten....and there are people who don't have reactions at all....wouldn't that mean that even people who are not super sensitives are damaging their system even eating 10-20 ppm in food? Kinda confused. My husband wanted me to ask this after i read your answers to him.

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I have thought about this too. I am super sensitive, and so if my son. My daughter is less sensitive, and husband hardly shows any symptoms even if he eats gluten by accident. My reading of the literature, especially the review published by the FDA: http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

has lead me to believe that different celiacs have different levels of sensitivity. It is known that there are different genetic make ups which produce celiac disease, and I think that these are likely to be at least part of the cause of the differences. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2944025/

There are also cases of asymptomatic celiac coming down with cancer and stuff like that. Most don't. If concerned, I would do a follow up colonoscopy.

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I'm not sure if you misunderstood what I am saying. I'm simply saying...for all of us...should the less sensitive people be treating themselves as super sensitive even if their not considering the fact that even if you are not sensitive damage is being done to your gut anyhow? How do we know 10 ppm is okay for some if super sensitives react? Because if people who are non sensitive are not reacting but damage is still being done wouldn't that mean we should all eat as super sensitive celiacs? Regardless of if we get a reaction?

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In other words if super sensitives react to something shouldn't we all write it off as that means gluten is present and will damage the less sensitive people even though they don't react?

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I don't think that I misunderstood your question. It seems that I wasn't clear enough in my answer. It would seem that a very low level that causes a reaction to a super sensitive would not cause a reaction or harm to someone who is not super sensitive. There is a Fasano study where people eating 10 mg per day of gluten were given repeat colonoscopies after 90 days and they were negative.

http://americanceliac.org/experts-respond-to-fda/

"This study is very clear in indicating that the daily intake of 10 mg of gluten (i.e. an amount 667 times higher than the estimated TDI of 15 micrograms!) for 3 months (!) in known adult celiac patients did not cause any damage"

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So there have been studies about non reactors too then where they did have damage? So what you're saying is that there are different levels of reactions....but then there is also the chance to be super sensitive and not feel it because you simply don't react? But your gut is?

The issue for my husband is that if he's reacting to something but not feeling it..there's no way to pinpoint what might or might not be doing him damage. He's scared he's still doing damage and just not knowing it. He wants to know if he's simply a non reactor but he's worried he could be doing damage on small amounts without knowing it because he doesn't react. We did the enterolab stool tests because it seems to be about right and all especially for me. The main thing besides elevated immuno reactions in his stool he had TWICE the fat in his stool to mine even though i have worse reactions to things. So i guess he should just re-test after a year and see if he's any better? We don't see the point to colonoscopies unless worried about cancer because much of the time they seem to miss anything and say you are fine.

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These are really difficult issues that haven't yet been resolved. Colonoscopies do seem to miss diagnoses often. There are studies in which negative colonoscopies were followed up a year or so later and became positive. There are doctors who don't take enough biopsies which cause a false negative. What about all the celiacs with DH yet negative colonoscopies? The enterolab results give far too many positives in many peoples opinions and must be false positives. There are supposed to be other non celiac related reasons to have elevated antibodies to gluten, but I haven't seen any that make sense to me. What about if there is damage that even a properly done colonoscopy could miss? Does damage always occur in the upper intestine first? There isn't much done yet about other types of damage such as neurological.

This makes diet choices very difficult. In my case, I am so sensitive that I am happy if I can manage to be symptom free. My son needs the same diet for the same reason. My daughter is less sensitive and off at college so it isn't practical for her to eat as carefully as we do. Still, I am trying to make changes so that I can offer her as much safe food as possible. She gets glutened much more often than she would like. Then there is my typical celiac husband. He eats whatever. He doesn't think that he has symptoms, but I see a big difference in his mood depending on what he has just eaten. I recommend to him that he at least only eat foods certified to be below 5 ppm, but he doesn't. If it says gluten free on the label that is good enough for him. His follow up enterolab test was still pretty high.

Maybe in 20 years the medical understanding of this condition will be great enough to give us better advise. In the meantime we have to live our lives best we can.

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In terms of myself i had a reaction at one point in august a few months in and a ton of mucus came out so i'm pretty sure i'm celiac. I also had elevated fat malabsorption etc. My husband never seemed to react to anything but planned on going gluten free too to make our lives easier anyhow. He has had less constipation and his malabsorption was 700....about twice mine. He's had a lot of random illnesses for quite a few years etc for a while so since he was going to go gluten free anyhow it's really not too bad for him only for the fact that he doesn't know how sensitive he is though he has contemplated eating gluten to see what happens that could end up a disaster. I don't have a drivers license and we'd be stuck at home all the time etc heh

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p.s. I had to go gluten free anyhow because I was diagnosed possibly hypothyroid which might have been caused by gluten.

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Hi Wendy,

You raised a good question about possible undetected damage at lower levels of gluten. I sort of remember one study was done where they tested people for I think it was 20 ppm, but a few people had to drop out due to symptoms at that level. Most were fine though. So there is a difference in what people can tolerate.

A repeat endoscopy might be a good idea to be sure if there is damage. That is one way to check for it besides blood antibodies. But endoscopy is expensive and invasive too so it may not be worth the risk. If antibodies in the blood are staying low and there are no symptoms it seems like that is fairly good sign. Maybe the only signs we have at this point too.

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I'm not sure if you misunderstood what I am saying. I'm simply saying...for all of us...should the less sensitive people be treating themselves as super sensitive even if their not considering the fact that even if you are not sensitive damage is being done to your gut anyhow? How do we know 10 ppm is okay for some if super sensitives react? Because if people who are non sensitive are not reacting but damage is still being done wouldn't that mean we should all eat as super sensitive celiacs? Regardless of if we get a reaction?

Well I am Celiac, I had many classic symptoms since I was 9 years old. I am very careful about what I eat but I don't get paranoid about 10 ppm. My answer to your question is its up to you how careful you want to be. As long as I always cook my own food and when I don't, I know how to identify gluten on labels and eat right in restaurants, I am fine.

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"In other words if super sensitives react to something shouldn't we all write it off as that means gluten is present and will damage the less sensitive people even though they don't react?"

I too worry that I accidentally ingest because I haven't pinned down an obvious gluten reaction. The closest thing I can think of would be kinda feeling like I should have a fever but don't, and being moody...and that's just a maybe because such things are so hard to pinpoint.

From what I've read about this, as steph has already talked about, is that celiac disease, as it stands right now, is only defined by damaged villi. There have been various studies that find the upper limit on how much gluten diagnosed celiacs can have before they will show damaged villi. That's around 20ppm. Whatever a super sensitive's reaction, no matter how severe, I suspect they wouldn't show damaged villi from it.

As to non-villi damage...well, yes, maybe all celiacs should be more careful due to reactions super sensitives have. But without symptoms, known long-term health benefits, or a full understanding of celiac disease and gluten intolerance, that's a pretty hard sell.

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Whatever a super sensitive's reaction, no matter how severe, I suspect they wouldn't show damaged villi from it.

Refractory celiacs definitely show villi damage while on a gluten free diet. Whether or not that is caused by trace gluten is debatable.

My GI doc thinks that refractory celiacs are super sensitive celiacs.

I get "poop in the pants" uncontrollable diarrhea from what I believe is trace gluten. Fasano used that term in the talk I heard him give, and said that it indicates total villi damage.

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Would poop in the pants then not happen all the time, not just in response to gluten? I mean, if absolutely nothing's getting absorbed...

I really don't know, but if I had to guess, it'd be that refractory celiacs are suffering from something besides/as well as celiac disease.

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So if super sensitives react to even trace amounts of gluten....and there are people who don't have reactions at all....wouldn't that mean that even people who are not super sensitives are damaging their system even eating 10-20 ppm in food? Kinda confused. My husband wanted me to ask this after i read your answers to him.

I think I've read that the less sensitive people will have less damage. If the damage were occurring, then your husband would know because he wouldn't be absorbing all of the nutrients, because the villi would be destroyed. For example, my iron levels were very low. Think that's what you mean....?

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