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Gluten Intolerant but not Celiac?

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Unread 04-11-2012, 11:51 AM   #1
Idiopathic PN
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Default Gluten Intolerant but not Celiac?

Hi. I am not a regular of Celiac forum but very much a regular of PN forum.

My questions are:
1. Is it possible that one is gluten intolerant but not celiac or vice versa?
2. Could it be possible that celiac/gluten only affects the nerves and nothing else?

I have yet to take the test for Celiac disease. I don't have any of the "typical' symptoms of gluten intolerant like stomach aches, cramps, diarrhea or constipation,etc. (Or, maybe I am not just aware of anything else that is happening to my body.) But I have the typical symptoms of a PN.


Thank you for your help.
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Unread 04-11-2012, 01:45 PM   #2
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Originally Posted by Idiopathic PN View Post
Hi. I am not a regular of Celiac forum but very much a regular of PN forum.

My questions are:
1. Is it possible that one is gluten intolerant but not celiac or vice versa?
2. Could it be possible that celiac/gluten only affects the nerves and nothing else?

I have yet to take the test for Celiac disease. I don't have any of the "typical' symptoms of gluten intolerant like stomach aches, cramps, diarrhea or constipation,etc. (Or, maybe I am not just aware of anything else that is happening to my body.) But I have the typical symptoms of a PN.


Thank you for your help.
Yes, it is possible to have gluten intolerance but not be genetically Celiac. The reverse is less likely and IMO not possible. Gluten intolerance is when the gluten peptide escapes into the blood stream from leaky gut and then causes reactions at various tissue sites and damage. There was a study done in 1999 showing damage from NSAIDs to the GI mucosa in the intestines may allow peptides to cross when they normally would not. Hence gluten intolerance may be ACQUIRED and be from various drug uses.

At the Gluten File site are papers about gluten and PN:
http://sites.google.com/site/jccglut...eralneuropathy
The Gluten file is also at Facebook with discussions.

2) yes possible. But you may not feel some other effects yet, if your case is mild. Some gluten effects are subtle. Brain fog,
fatigue, thyroid disease, etc.

I'd recommend you read The Gluten File. It is a great resource and very complete with explanations.

As I understand it, the "scope" looking for villi damage does not always reveal it, even in Celiacs. Glenntaj here knows all the tests, and will hopefully come on here with details.
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Unread 04-11-2012, 03:50 PM   #3
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Yes, it is possible to have gluten intolerance but not be genetically Celiac. The reverse is less likely and IMO not possible. Gluten intolerance is when the gluten peptide escapes into the blood stream from leaky gut and then causes reactions at various tissue sites and damage. There was a study done in 1999 showing damage from NSAIDs to the GI mucosa in the intestines may allow peptides to cross when they normally would not. Hence gluten intolerance may be ACQUIRED and be from various drug uses.

At the Gluten File site are papers about gluten and PN:
http://sites.google.com/site/jccglut...eralneuropathy
The Gluten file is also at Facebook with discussions.

2) yes possible. But you may not feel some other effects yet, if your case is mild. Some gluten effects are subtle. Brain fog,
fatigue, thyroid disease, etc.

I'd recommend you read The Gluten File. It is a great resource and very complete with explanations.

As I understand it, the "scope" looking for villi damage does not always reveal it, even in Celiacs. Glenntaj here knows all the tests, and will hopefully come on here with details.
MrsD, thank you. Its so nice "seeing" you on Celiac forum.
You know Mrs.D, I blame Gabapentin for always feeling tired, difficulty concentrating and oftentimes anxious. The more I read the Gluten File, the more I wonder if I am gluten intolerant. It is difficult though to put finger to one culprit because I also h ave thyroid problem. I heard abouot gluten intolerant but I have never really given so much attention to it because I never feel the more common abdominal problem.

Can colonoscopy detects the villi damage? The reason I ask is because I had colonoscopy last May 2011 and there was no mention about it.

I will have my test for celiac this week. I will post the result here for comments.

Thank you.

Mary
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Unread 04-11-2012, 04:28 PM   #4
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No, the villi are mostly in the small intestine.

I've read over and over at the Gluten File that a negative scope is not 100% reliable.

But the damage gluten does in the sensitive person can be pretty global. Jcc's daughter had seizures as an example when young and eating gluten. They went away when she went gluten free many years ago.
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Unread 04-11-2012, 08:08 PM   #5
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No, the villi are mostly in the small intestine.

I've read over and over at the Gluten File that a negative scope is not 100% reliable.

But the damage gluten does in the sensitive person can be pretty global. Jcc's daughter had seizures as an example when young and eating gluten. They went away when she went gluten free many years ago.
I read the Gluten File - I never gave too much attention to it until now. I was talking with my friend from Canada today and she mentioned about her nephew that for years he was always feeling sick. In and out of the emergency room without proper diagnosis. After 3 years of recurring medical expenses, the parents experimented on gluten-free diet, for just 2 months the boy improved! Now the boy is 7yrs old, healthy and very active.

I will have tests on IGg/IGa antigliadin antibodies and tissue transglutaminase.

Thank you.
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Unread 04-12-2012, 06:41 AM   #6
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Default It is certainly possible--

--for neurological symptoms to be a presenting symptom of autoimmune reaction to gluten.

Peripheral neuropathy is one of these (gluten ataxia and seizures are others), and it is prevalent enough that the researchers who have done the work in this area (mostly Latov,Chin, Green, Fasano and Alessio in the US, and most importantly, Hadijvassiliou in Finland) recommend a test for the antibodies in anyone with an otherwise unexplained neuropathy. In fact, there is some evidence that people who present first with neurological symptoms may have a different genetic profile than the "typical" celiac who presents with gastrointestinal issues (the Gluten File details Hadijvassiliou's work in this area).

There are no appreciable villi in the large intestine--was the colonoscopy otherwise unremarkable? (I just had a screening one--no polyps or inflammation found, so I'm good for five years.)

The thyroid issues can make you feel tired/lethargic by themselves. There is a tendency for people with one autoimmune issue to have others, though, so if there is evidence of autoimmunity to the thyroid (with the antibody markers) that's another reason to get the gluten/celiac testing (there are numerous people with both).
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Unread 04-12-2012, 08:01 AM   #7
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--for neurological symptoms to be a presenting symptom of autoimmune reaction to gluten.

Peripheral neuropathy is one of these (gluten ataxia and seizures are others), and it is prevalent enough that the researchers who have done the work in this area (mostly Latov,Chin, Green, Fasano and Alessio in the US, and most importantly, Hadijvassiliou in Finland) recommend a test for the antibodies in anyone with an otherwise unexplained neuropathy. In fact, there is some evidence that people who present first with neurological symptoms may have a different genetic profile than the "typical" celiac who presents with gastrointestinal issues (the Gluten File details Hadijvassiliou's work in this area).

There are no appreciable villi in the large intestine--was the colonoscopy otherwise unremarkable? (I just had a screening one--no polyps or inflammation found, so I'm good for five years.)

The thyroid issues can make you feel tired/lethargic by themselves. There is a tendency for people with one autoimmune issue to have others, though, so if there is evidence of autoimmunity to the thyroid (with the antibody markers) that's another reason to get the gluten/celiac testing (there are numerous people with both).
Thanks Glenntaj!

The result of my colonoscopy was unremarkable - no polyps or inflammation. Just a segue, my insurance (or most insurance I know) has this guideline on how often to take colonoscopy - if you are at risk, you will be allowed to have another colonoscopy for 3 years or 5 years, depending on your age and other medical conditions. Otherwise, 10 years is the next follow-up.

The tests I will get for Celiac are : IGg/IGa Gliadin Antibodies and Tissue Transglutaminase Antibodies. Are these the tests that I should get for an accurate diagnosis of Celiac/Gluten Intolerant?

I already had taken the antibodies for my thyroid and it was normal. Thank God.

Mary
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Unread 04-13-2012, 06:23 AM   #8
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Default Those serological tests--

--are the standard celiac/gluten panel--but they should also measure total IgA, as low total IgA--a common finding--can skew the results of the IgA gliadin and IgA tranglutaminase tests.

There are people who have negative serology who do show villious atrophy on biopsy (some correspondents who are represented in the Gluten File say this may happen into up to 20% of biopsy-proven celiacs). Generally, the anit-transglutaminase assay is more closely correlated with extent of intestinal damage, but there are exceptions.

A number of pharmaceutical companies have been working on "next generation" celiac testing that would be more specific, but none have reached the market yet.
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Unread 04-13-2012, 07:05 AM   #9
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--are the standard celiac/gluten panel--but they should also measure total IgA, as low total IgA--a common finding--can skew the results of the IgA gliadin and IgA tranglutaminase tests.

There are people who have negative serology who do show villious atrophy on biopsy (some correspondents who are represented in the Gluten File say this may happen into up to 20% of biopsy-proven celiacs). Generally, the anit-transglutaminase assay is more closely correlated with extent of intestinal damage, but there are exceptions.

A number of pharmaceutical companies have been working on "next generation" celiac testing that would be more specific, but none have reached the market yet.
Thanks Glenntaj.
Do you mean the total IGa should be a test in addition to IGg/IGA Gliadin and transglutaminase? Should the doctor add this on the request or is it something that I could ask from the lab?

I am going to have my test tomorrow morning.

Thanks again.

Mary
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Unread 04-14-2012, 06:39 AM   #10
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Default Yes--

--see if you can get the doctor to add that total IgA test--if it comes out low, results from the other tests may be skewed.
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