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conniebky

Explain This To Me Like I'm 2 Years Old

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Celiac Disease is when your fili (sp?) flatten out, right?

If you are gluten intolerant or allergic to gluten and don't realize it, and keep eating gluten, you will eventually end up with Celiac.

Is that correct?


Be kind to each person that you meet, for everyone is fighting a great battle

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Celiac Disease is when your fili (sp?) flatten out, right?

If you are gluten intolerant or allergic to gluten and don't realize it, and keep eating gluten, you will eventually end up with Celiac.

Is that correct?

Yes. Celiac disease is where the villi are damaged (generally termed "flatted", but I don't want to use that term because it could imply a level of damage necessary to be Celiac disease). That's simply what villi damage due to an autoimmune response to gluten is called.

As for whether or not gluten intolerance develops into Celiac - we don't know. There is no scientific evidence to support it, but there haven't been studies to find that scientific evidence. It's only been a few years that even celiac specialists have accepted the idea of gluten intolerance separate from Celiac disease. Some people think this will happen in all cases. I don't, as I believe you can have IgG food intolerances without an autoimmune reaction. But, I also believe that it doesn't matter - eating gluten when you "only" have gluten intolerance is a dumb idea.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Like you're two... Can we go for ten?

Celiac disease means your body is trying to damage your own intestine. The result is that your villi take on funny shapes, not flattening out but something that looks more like when you hold all your fingers together rather than spreading them out. If you stop eating gluten your intestine will heal and the fingers will spread out again.

There are other things that can happen from eating gluten. Some people's bodies attack their skin, making a rash called dermatitis herpetiformis (DH). Other people's bodies attack their brain or nervous system, giving them tingles or pain or a walk that's like being drunk (ataxia). People with nervous system problems don't always have any stomach trouble at all, and some doctors don't even know gluten can cause this. These people are usually not called "celiac" though that might change. People also get anxiety and depression from eating gluten, maybe from B12 deficiency, but maybe from a direct effect of gluten on the nervous system. Nobody knows.

It's not clear that someone with brain problems will definitely go on to develop gut problems. People with positive blood tests for gut problems but no damage do generally go on to develop damage. Nobody has done a long-term study on people with gluten ataxia to know. People with the GI damage seem to have a higher chance of nerve damage or DH so they're probably all connected.

There are also people who just can't eat gluten. They get a lot of symptoms of celiac, or nervous system symptoms but no positive test results. Some doctors listen to their tests and not to the patient, so these people are told they're crazy. It's not clear whether the celiac tests are wrong, or whether these people have completely different problems with wheat. Nobody has ever followed these people to know whether they go on to develop celiac disease. An lot do seem to have thyroid problems, vitamin deficiencies, anemia, or other signs of celiac disease, leading some scientists to think it's all the same disease.

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I was tested and it was negative however I do have a severe gluten intolerance. My doctor recently told me that based on the severity of my reactions, he thinks that I am Celiac but told me he didn't want to make me eat gluten to get a good diagnosis. He has labeled me as Celiac. Previously he had told me that it was like a food allergy and I could eat whatever I could tolerate but then at my last checkup he told me about him strongly suspecting Celiac. After cutting out gluten COMPLETELY (or as completely as I can) the remainder of my symptoms essentially disappeared.


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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Wow, Skylark, thanks for gifting us the benefit of your research background. Really great synthesis.

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Do you by any chance know of any good studies on some of the neurological problems that gluten has caused? I have a friend whose husband has quite a few neurological issues, many tests with no solution, and quite a few of them seem suggestive of possible celiac, but their doctors refuse to test. They were trying to find some studies to pass on to their doctors and I was trying to hunt some down! I'd appreciate any help you might be able to give! :)

Like you're two... Can we go for ten?

Celiac disease means your body is trying to damage your own intestine. The result is that your villi take on funny shapes, not flattening out but something that looks more like when you hold all your fingers together rather than spreading them out. If you stop eating gluten your intestine will heal and the fingers will spread out again.

There are other things that can happen from eating gluten. Some people's bodies attack their skin, making a rash called dermatitis herpetiformis (DH). Other people's bodies attack their brain or nervous system, giving them tingles or pain or a walk that's like being drunk (ataxia). People with nervous system problems don't always have any stomach trouble at all, and some doctors don't even know gluten can cause this. These people are usually not called "celiac" though that might change. People also get anxiety and depression from eating gluten, maybe from B12 deficiency, but maybe from a direct effect of gluten on the nervous system. Nobody knows.

It's not clear that someone with brain problems will definitely go on to develop gut problems. People with positive blood tests for gut problems but no damage do generally go on to develop damage. Nobody has done a long-term study on people with gluten ataxia to know. People with the GI damage seem to have a higher chance of nerve damage or DH so they're probably all connected.

There are also people who just can't eat gluten. They get a lot of symptoms of celiac, or nervous system symptoms but no positive test results. Some doctors listen to their tests and not to the patient, so these people are told they're crazy. It's not clear whether the celiac tests are wrong, or whether these people have completely different problems with wheat. Nobody has ever followed these people to know whether they go on to develop celiac disease. An lot do seem to have thyroid problems, vitamin deficiencies, anemia, or other signs of celiac disease, leading some scientists to think it's all the same disease.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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This is the one I like to refer to:

http://www.ncbi.nlm.nih.gov/pubmed/20170845

Although neurological manifestations in patients with established coeliac disease have been reported since 1966, it was not until 30 years later that, in some individuals, gluten sensitivity was shown to manifest solely with neurological dysfunction. Furthermore, the concept of extraintestinal presentations without enteropathy has only recently become accepted.

Tell your friend that I'm sorry s/he has to fight with her/his doctor. :( I saw a GI doctor who is an Associate Professor at one of the med schools here in NY who had no idea that celiac could manifest with neurological symptoms. The ignorance of the medical community is unfortunate.

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I did actually have one doctor get angry with me about my double vision...he got angry because he thought I was being a smart mouth about having all those tests with negative results.

He said (this is when I didn't have insurance and he was a med student at the free place I went to) he said, "only a brain dysfunction can cause this. I am writing in our chart that you are refusing medical treatment."

I was like, "ok, write what you want to."

I wasn't refusing anything, I told him, "I have double vision but it isn't because there's anything wrong with my brain" that just pissed him off beyond belief.

And BTW, my skin isn't dried out and itchy anymore either and I like that cuz I was scratching my face and arms until they bled, I noticed this weekend that that has resolved itself also.

I thought if you had a Celiac panel done and it was negative, you could eat gluten, and that's what tripped me up.

I just thought that


Be kind to each person that you meet, for everyone is fighting a great battle

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Oh man I WISH I could eat gluten. I miss bread lol


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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Oh man I WISH I could eat gluten. I miss bread lol

If you want gluten-free Bread that is totally awesome and tastes just like real bread, Get "Udi". It is so good. It is gluten free, dairy free, and absolutely good to make a sandwich or toasted. YUM YUM... trust me you won't be disappointed and you will never buy any other bread again. If you can't find it in stores, you can order it online. I think the site is http://udisglutenfree.com/.....

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Do you by any chance know of any good studies on some of the neurological problems that gluten has caused? I have a friend whose husband has quite a few neurological issues, many tests with no solution, and quite a few of them seem suggestive of possible celiac, but their doctors refuse to test. They were trying to find some studies to pass on to their doctors and I was trying to hunt some down! I'd appreciate any help you might be able to give! :)

It's late, but I'll track down an email I just sent a friend who was looking for info on gluten and MS tomorrow for you. I found a dozen references for him, and that was just looking quickly.

Do you know about PubMed? http://www.ncbi.nlm.nih.gov/pubmed If you type "gluten ataxia" in the search you'll pull up all sorts of interesting stuff. When you click on a title, you'll see more articles in the "Related Citations" tab on the right-hand side.

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Do you by any chance know of any good studies on some of the neurological problems that gluten has caused? I have a friend whose husband has quite a few neurological issues, many tests with no solution, and quite a few of them seem suggestive of possible celiac, but their doctors refuse to test. They were trying to find some studies to pass on to their doctors and I was trying to hunt some down! I'd appreciate any help you might be able to give! :)

If you do a search using the words neurological and celiac a lot will come up.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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If you want gluten-free Bread that is totally awesome and tastes just like real bread, Get "Udi". It is so good. It is gluten free, dairy free, and absolutely good to make a sandwich or toasted. YUM YUM... trust me you won't be disappointed and you will never buy any other bread again. If you can't find it in stores, you can order it online. I think the site is http://udisglutenfree.com/.....

I DO use Udi's but I miss cuban bread and buns and french rolls. I LOVED trying different types of crusty rolls.


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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