Confusion

[judy04]

Hi again,

After reading these posts about this condition {celiac disease}, I thought

I was clear about the difference between wheat allergy, which I have,

gluten intolerance, and gluten insensitivity. however, some people seem

to interchange them.If you have intolerance and /or sensitivity do you actually have celiac disease? Or if not ,is intolerance and/ or sensitivity more like wheat allergy which

will probably never develop into celiac disease?

Also can the difference be determined by a blood test? If so, which one determines

which condition?

Also I read somewhere, wish I could remember, that if you have a wheat allergy

the damage done to the sm intestine can only be down 3 levels whereas,

a person with celiac disease can have damage to level 5. Can anyone comment on that

and where I could find more information on these facts. I was so sick when I

last saw the GI doc that I didn't feel much like asking questions.Although he

didn't explain much, he has done a lot in diagnosing celiac disease. He found a 100

new cases in the past year in the small Pennsylvania town where he practices...

[gf4life]

Hi Judy,

If you have a wheat allergy, then you shouldn't have any intestinal damage. Only gluten intolerance causes damage. The difference between gluten intolerance/sensitivity and celiac disease is the stage of the damage. Some people never progress to the degree of damage doctors want to see in order to diagnose celiac disease, but it doesn't really matter since the treament is the same. Lifelong adherance to the gluten free diet. The problem arises when the doctor says,"You don't have celiac disease. Gluten is not your problem." This leaves a lot of gluten intolerant people in the dark. They trust the doctor and stay on gluten. IBS is the most common diagnosis for undiagnosed gluten intolerant people. Blood tests can detect the level of antibodies in your blood, assuming you are in an advanced enough stage to develop enough antibodies to gluten that cross over from your intesting to your blood. If you are not producing very many antibodies you will test negative on the blood test and be told you don't have it. Most will never get to a biopsy if they test negative on the blood test. And if they do they will often test negative on the biopsy as well.

One of the best new tests out there (but not yet accepted by the mainstream medical field) is the stool tests for Gluten Sensitivity offered by Dr. Kenneth Fine at Open Original Shared Link . They are the most sensitive and are able to find gluten intolerance/sensitivity at an early stage, well before most conventional medical doctors would give you a diagnosis. Many people who test negative on the conventional blood tests/biopsy will test positive on these stool tests.

It is possible to have both gluten intolerance and a wheat allergy. The difference is that a wheat allergy will cause symptoms such as rash, itching, sometimes breathing problems, etc. and is mediated by IgE (immunoglobulin E), and an intolerance is a reaction against the offending food that happend in the intestines and is mediated by IgA (immunoglobulin A).

I hope I helped to answer your questions.

God bless,

Mariann

[dsmolik]

Hi,

I just wanted to thank Marian for the useful information. I was told after undergoing a biopsy that I definately did not have celiac disease. All my blood work was also inconclusive. I decided to follow a gluten-free diet 7 months ago and I am finally feeling well (except for the unintentional ingestion of gluten.) I am so frusterated with the inability to diagnose this disease. Do you know if the stool test works for someone on a gluten-free diet?

thanks Donna

[gf4life]

Hi Donna,

The stool test can be used while gluten-free, but it really is just to check to see if you are getting any accidental gluten. The antibodies will continue to be present for a while in your intestine while gluten free. The length of time varies for each person, but for a few months at least. Dr. Fine does not recommend going off gluten for testing. He recommends having the gene test done if you have been gluten-free for a while. This will not tell you if you have Celiac Disease, but it will tell you if you carry the gene(s) to support the diagnosis. This way you could safely rule out Celiac Disease if you did not have the gene(s). Check out their website. I ended up using their tests after the conventional medical testing failed me. I was negative on the blood tests and the biopsy, but positive on the stool test, and gene test. I'm one of those people who have "slipped through the cracks" and that is the people Dr. Fine hopes to help the most. He has Celiac Disease himself and knows how hard it is to get a diagnosis before the onset of severe illness. You have to be half dead before most doctors will even consider celiac disease!

God bless,

Mariann

[judy04]

Mariann,

I found the article about levels of damage on this web site under Site

Index, Allergy vs Intolerance, by Kemp Randolph, Will ther foods

affect the Villi. Question and answer on milk and eggs. I wish I knew

about doing the "Quote" so that I could post it here..

[judy04]

Mariann,

This is the quote I wanted to run by you.

Do you think all of these food allergies can cause damage

but no wheat? Scroll down, I hope I did this right, thanks Mariann!

Copyright

[mannabbe]

It has never seemed quite right to me that celiac isn't considered an allergy just because it doesn't trigger an IgE response (but instead triggers an IgG and IgA response). There's a wonderful book by Jonathan Brostoff (Food Allergies and Food Intolerances) that talks about the differences between allergies & intolerances and the history of western medicine's focus on IgE responses.

My recollection is that western medicine focused on IgE responses, partly due to the fact that some IgE responses can cause anaphylaxis, and ignored IgG, IgA and other immunological respoonses for a very long time. Everything not IgE was relegated to the category of "intolerance" even though IgG and IgA symptoms can be as severe (or more severe) that IgE responses.

Personally, my IgG casein response is more painful and long-lasting than my IgE almond allergy. And most of us would agree, I think, that our IgG and IgA responses to gluten are nothing to trifle with.

After reading this book and getting a better understanding of the rather arbitrary distinction (medically speaking) between allergy and intolerance (e.g. why is IgE so different that IgG and IgA?), I have no trouble thinking of celiac as an allergy. If there are any immunologists out there reading this, I'm interested in your opinions on this topic. I have noticed that many labs / phyicians are now choosing to refer to IgG and IgA responses as "allergies" - do a google on "food allergy IgG" and you'll see what I mean.

Okay, that's enough on this topic. Can you tell this is a button for me? THere's nothing like arbitrary western medicine to get me going.

cheers, Laurie

[gf4life]

You know, I've just recently started telling people about the fact that I have celiac disease. They don't understand Celiac Disease, or gluten intolerance, but they do understand allergy. I just say that I am allergic to gluten, which is part of wheat and also casein which is part of milk, and they seem to understand. And I know it bugs some celiacs since it is technically not an allergy, but it is so much easier to get through to people that way. But people don't always get it. I had a lady tonight tell me that I should be able to eat the cake she made, since it contained only "white flour", not wheat. Well I explained to her gently that white flour is made from wheat, and then she seemed to think about it and she looked at the table full of desserts and said astonished, "Well what can you eat?" I could eat the cookies I brought! And everyone loved them. So it made me feel good.

I agree that they should just call it a food allergy. My soy allergy is nothing compared to my reactions from gluten and casein!

God bless,

Mariann