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Trickytree

Is Anybody Gluten Intolerant With Celiac Disease?

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I've just taken a York Labs blood test and it came back with a hideous list of intolerances - the worst being gluten (gliadin), wheat, eggs, milk & yeast. I'm waiting for an appointment for a celiac test but wondered if it's possible to be gluten intolerant without having celiac disease?

I've been advised that there is probably an underlying problem which has given rise to all of these positive results, and that it is either likely to be celiac or candida, but I've struggled to find anything on the net where gluten intolerance isn't referred to in the same breath as celiac. My symptoms are not extreme but could be equally attributed to either.

Any thoughts that would help me get my head straight with all this whilst I'm stuck in limbo would be appreciated!

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Yes, one can be gluten intolerant without having Celiac Disease. However, the dietary requirements are exactly the same.... no wheat, no rye, no barley, EVER.

Many believe that gluten intolerance is just a stepping stone to Celiac. I don't know either way. But, I do have a diagnosis of gluten intolerance. I do not have a diagnosis of Celiac Disease. It doesn't matter, as I have to maintain a gluten free diet, otherwise I become violently ill. I recently learned that I carry the Celiac genes as well..... so, I can see how others would consider the intolerance as the first step toward the full blown disease. I'm hoping to AVOID that... by following a gluten-free diet.

I'm sorry, I'm rambling... I'm tired, :huh:


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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You are correct that many places use gluten intolerant interchangeably with celiac including many posts on this site.

The places where I've seen it specifically different make the distinction of an intolerance being a GI system issue (not being able to digest properly) versus an immune system response.

I've only skimmed the Enterolabs site a few times but they seem to use the phrase "gluten sensitivity" but I've seen people post here that Enteroblabs diagnosed them as "gluten intolerant". I don't know if they got that specific wording in a report or if sensitivity = intolerance to them.

It seems to me that there are digestive issues, auto-immune issues and allergy issues with gluten. A person can have combinations of these. From a diet/lifestyle impact perspective they are treated the same. From a perspective of being more likely to have similar conditions, they are very different.

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You are correct that many places use gluten intolerant interchangeably with celiac including many posts on this site.

The places where I've seen it specifically different make the distinction of an intolerance being a GI system issue (not being able to digest properly) versus an immune system response.

I've only skimmed the Enterolabs site a few times but they seem to use the phrase "gluten sensitivity" but I've seen people post here that Enteroblabs diagnosed them as "gluten intolerant". I don't know if they got that specific wording in a report or if sensitivity = intolerance to them.

It seems to me that there are digestive issues, auto-immune issues and allergy issues with gluten. A person can have combinations of these. From a diet/lifestyle impact perspective they are treated the same. From a perspective of being more likely to have similar conditions, they are very different.

There is an aticle on the main Celiac.com site entitled celiac vs. gluten intolerance - What's the difference? which goes into detail. The crux of the matter as you say is that the cure is the same. I think that if you have gluten intolerance you may still have digestive issues but the damage to the intestinal villi is not (yet) so bad to be declared celiac. Some people may never get total villous atrophy but suffer other auto-imune diseases, hyperthyroid, diabetes, arthritis, some may suffer IBS or cancers of the digestive tract but still not have villous atrophy. The point is that avoiding gluten will (hopefully) prevent further seroius illness.

I do not have celiac genes but both 'gluten sensitive' genes and my Enterolab testing also showed that I have anti-gliadin antibodies. I think that this means that there is an auto-immune response. Allergies produce IgE not IgA and are not necessarily permanent. The testing only confirmed that my digestive problems that cleared up since I went gluten-free 4 months ago, were as a result of being gluten intolerant. I prefer to use this phrase because it is more specific and obvoiusly, I can no longer tolerate gluten! I also have fat malabsorption problems and associated difficulty absorbing vitamins indicating that I have some intestinal damage. Whether I call it celiac or not is a moot point. The effects of the inability to digest gluten are damage to the body no matter what you call it and I will need to be gluten free for the rest of my life.


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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I see one "Allergy vs. Intolerance - What is the Difference?" where is the celiac vs intolerance? I'm probably looking right over it...

Sorry Tim, didn't check the titles properly, got glutened a couple of days ago and am not past the headache/brain fog yet! : :huh:

'Celiac Disease-Gluten sensitivity: What's the difference? By Ron Hoggan and and the same subject is discussed in 'Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone' by Kenneth Fine

I mixed up the titles and gist of the articles but the latter is more comprehensive in explanation.


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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I'm gluten-intolerant and also react to both gluten and wheat on allergy testing. I also react to rice, corn, soy, oats, eggs, beef, pork, chicken, dairy, brewer's yeast... and this is only Round 1 of the testing. Basically, if I eat it on a regular basis, I react to it.

I have Leaky Gut Syndrome. I also have candida and Lyme disease. Now, which caused what, I've no clue. I tested positive for candida before starting any antibiotics for the Lyme. All the food intolerances only started showing up about 6 months ago.

Anyway, in response to your question.... Yes!


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Sorry Tim, didn't check the titles properly, got glutened a couple of days ago and am not past the headache/brain fog yet! : :huh:

'Celiac Disease-Gluten sensitivity: What's the difference? By Ron Hoggan and and the same subject is discussed in 'Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone' by Kenneth Fine

I mixed up the titles and gist of the articles but the latter is more comprehensive in explanation.

I just checked to see if the articles are still there. They are under the Celiac Disease-summary/overview.


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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I'm gluten-intolerant and also react to both gluten and wheat on allergy testing. I also react to rice, corn, soy, oats, eggs, beef, pork, chicken, dairy, brewer's yeast... and this is only Round 1 of the testing. Basically, if I eat it on a regular basis, I react to it.

I have Leaky Gut Syndrome. I also have candida and Lyme disease. Now, which caused what, I've no clue. I tested positive for candida before starting any antibiotics for the Lyme. All the food intolerances only started showing up about 6 months ago.

Anyway, in response to your question.... Yes!

Nyxie63, this sounds very similar to where I'm at - if I eat something once a week it's come up as an intolerance. The only things that I've ever had an identifiable reaction to are milk and chilli, but generally I just feel rubbish and pick up whatever bug is going round, (or as the doctors put it, I've had "IBS" and "a virus" for the last few years), hence the intolerance test. I've got a tiny little bit of hope that if I can identify whether it's gluten or yeast that's the root cause I might be able to sort the rest out to some extent...

Not to wish this on anyone, but somehow reassuring to know there are other people out there who understand. Thanks all for the responses; I've been struggling more with the absence of information so far than actually changing my diet (except for the gluten which is in until I get the test!). And also thanks for reading even though I messed the title up to say the exact opposite of what I meant.

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