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Different Levels Of Celiac?
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9 posts in this topic

Hello all

Just been wondering, it seems (having been on this forum for a bit reading stories) that there are different 'levels' of celiac. But how can this be, surely you are celiac or you are not? Is this just down to sensitivity? (ie like with an allergy response)

I have been worried about handling bread etc whilst making my little boys sandwiches but I haven't reacted at all? There are crumbs all over the place, no matter how hard i try to keep things clean. Some people say they can't touch anything with gluten, I thought it had to be ingested???

Any thoughts welcome

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The way my GI specialist put it, you can't be "a little bit celiac" the same way you can't be "a little bit pregnant."

AFAIK, people can have different degrees of response from one another- and individuals can have different degrees of response over time, as well. She also said obvious symptoms of gluten reaction may appear "for the first time" (or get more aggressive, I'm guessing) despite having had celiac already when your immune system is otherwise compromised. In my case, in retrospect, I had some symptoms even when I was young, but it got a lot worse for me within the last several years.

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I know what you're asking...I always just thought it depended on how far along the disease had progressed. I know some people respond to the diet immediately and some take years. So I assume it's how weak your body has gotten before you were diagnosed. Age might make a difference too. My daughter seemed to get better after only a month. (was age 7)

I believe my reactions are getting worse (and I'm getting more sensitive) the longer I'm gluten free.

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I agree with the others, it's more about how you react to the gluten and what symptoms you show... With your pregnancy analogy, you could compare how some people tend to sail through pregnancy and feel great, others have morning sickness, some have other health complications, and yet others tend towards multiple births... there's a lot of room for variation.

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This paper discusses it. It seems that there are different levels of celiac. http://www.ncbi.nlm....les/PMC2944025/

I'm trying hard not to just read the bad stuff in this paper, but I'm a little alarmed. This paper as a layman is trying to read it says that the different cells involved can mutate to become lymphoma cells? I am someone who is not responding to a gluten free diet. I have only been 1 year into it, but last endoscopy shows a worsening of the villi, and although I have been eating gluten for 57 years I have never shown any gastric distress but have been diagnosed with anemia, migraines and osteoporosis and until an unrelated endoscopy just found out I have celiac disease. So am I in the group where I should be looking out for lymphoma ?
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I know what you're asking...I always just thought it depended on how far along the disease had progressed. I know some people respond to the diet immediately and some take years. So I assume it's how weak your body has gotten before you were diagnosed. Age might make a difference too. My daughter seemed to get better after only a month. (was age 7)

I believe my reactions are getting worse (and I'm getting more sensitive) the longer I'm gluten free.

I am the same way. ALl the years prior to being gluten-free, I always had what I know now were symptoms, but I just lived with them every day without realizing why it was happening. When I was finally diagnosed, my Dr said I had very little damage done but she believed I was in the early stages of noticeable damage and had I waited a few more years, it would be worse. I went gluten-free and within 2 weeks, I felt better and still feel better, aside from a couple of setbacks I had. In the beginning of being gluten-free, I could eat gluten and not get sick right away, but now it has been almost 4 months and I feel reactions almost immediately. My stomach bloats, I get nauseous, and my head starts to throb.

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I'm trying hard not to just read the bad stuff in this paper, but I'm a little alarmed. This paper as a layman is trying to read it says that the different cells involved can mutate to become lymphoma cells? I am someone who is not responding to a gluten free diet. I have only been 1 year into it, but last endoscopy shows a worsening of the villi, and although I have been eating gluten for 57 years I have never shown any gastric distress but have been diagnosed with anemia, migraines and osteoporosis and until an unrelated endoscopy just found out I have celiac disease. So am I in the group where I should be looking out for lymphoma ?

I don't know. I hope not. Have you tried a diet of produce and unprocessed meat? That is helped me a lot.

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So it seems that the longer we are gluten-free the worse a glutening attack could be?? At least so seems the general consensus? I'm now seriously wondering whether there is something that I haven't eliminated in my diet that is causing my ongoing 'loose bowel' problem. It's the only thing still bothering me. (dietician says I'm high on fibre) but maybe I'm still consuming gluten? But where? Ugh, the is so frustrating.

@myquest... What has your doctor advised? Have they actually told you that you are refractory? It's so worrying, I understand your concern. Is there no way you could have been ingesting gluten? All the best

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