Help...

[cynicaltomorrow]

My GI gave me a blood test for gluten antibodies in early June. I came back "highly positive" in one area.. I believe it was Igg. My biopsy was negative and he diagnosed me with gluten sensitive enteropathy. I went to an allergist a few weeks ago to test for other food allergies, because I'm still getting sick. My blood tests for food allergies all came back negative.. including wheat. The nurse there said that I may have a sensitivity to sulfites. I don't even know what is going on right now. I feel like I'm at the beginning again. How can 2 blood tests say completely different things? I am so frustrated. Any sugggestions... comments.. etc.?

[lovegrov]

Celiac blood tests and wheat allergy tests are completely different things. The vast majority of people with celiac are not allergic to wheat. I'm not but I certainly have celiac.

richard

[byuiemily]

lovegrov, i'm a bit confused. You say that the majority of people with celiac are not allergic to wheat, but wheat (amongst other grains) has gluten in it, which is what makes us "Celiac", therefore, we would not be able to have wheat..or "allergic" to wheat.

[gf4life]

Our immune systems are a bit complicated. We have 5 different kinds of immunoglobulins (abbreviated as Ig). There are IgA, IgD, IgE, IgG and IgM.

The celiac tests are done on IgA (most specific to testing celiac) and IgG.

Allergy tests are done on IgE. So it is not uncommon to be Celiac, but not wheat allergic, or wheat allergic and not Celiac. And some people are both.

Either way it sounds like you should avoid gluten since you came back as gluten sensitive. Have you tried the diet? And if you have, do you feel better off gluten?

God bless,

Mariann

[cynicaltomorrow]

I felt better when I first went off gluten.. but now I feel the same as I did before.

[tarnalberry]

It's true that most people - and probably most celiacs - are not allergic to wheat. That's because an allergy is defined as being an IgE mediated response to a substance (and the subsequent histamine related symptoms). Celiac disease/gluten-intolerance is not IgE mediated, but rather through IgA and IgG. Some people are both, of course, but _technically_ calling celiac an allergy is medically incorrect. That's why you can test positive for an allergy or an intolerance and not the other one. It just matters what method your body is using to react to the protein that determines which label you get. (As an aside, wheat allergies usually mean you don't have to avoid barley or rye, and particularly oats. While _rare_ cases of _very serious_ wheat allergy could lead to anaphylaxis (this isn't common among any allergy, and is even less so among wheat - peanut and shellfish are the bigger worry on this one), in general, a wheat allergy does not cause internal damage to the body, where celiac disease certainly can.

[gf4life]

Part of the testing problem is that even most doctors don't realise that allergies and intolerances are different and they just order the food allergy tests and tell you that you don't have a problem with wheat.

I have a friend who took her daughter in to be tested for gluten intolerance and the doctor not realising the difference ordered food allergy tests instead. It ends up her daughter is highly allergic to milk (not a surprise) and eggs (totally a surprise), and is also allergic to wheat (and possibly gluten intolerant, since her main symptoms are GI related). She still doesn't know for sure if she is gluten intolerant, but is keeping her gluten and dairy free anyhow, since wheat is the primary source of gluten and she has to avoid that anyhow.

I'm just saying that if it seems confusing to you, that's not surprising since it isn't clear to most doctors either. And there doesn't appear to be any mainstream tests that are accurate for testing for food intolerances either. If there are, doctors don't know how to order them!

God bless,

Mariann

[FreyaUSA]

Part of the testing problem is that even most doctors don't realise that allergies and intolerances are different and they just order the food allergy tests and tell you that you don't have a problem with wheat.

This is exactly what happened to me. I was sent to an allergist and I didn't even react to the control! Lol! (Does that mean I have no IgE at all? ) The thing that astounded me was that when I spoke with the allergist about being intolerant (this was all new to me too,) she was clueless (she acted like she'd never even heard the term before.) When I said what my symptoms were, she said she doesn't know anything about that, I would have to see a gastro.

Marian (gf4life), thank you for that explanation about the Ig's! With all the confusing, new things I've been reading trying to understand all this, your explanation made it click.

[lovegrov]

Emily,

What Marianne and Tiffany said about Igg, Iga, and Ige.

There is also a difference in reactions for some people. Also, some people with wheat allergy can have a low-gluten wheat like spelt, and of course they can eat rye and barley.

richard

[cynicaltomorrow]

So, should I go back and get the skin test? Do those detect intolerances?

[tarnalberry]

No, skin tests are for allergies (IgE mediated responses). And even then they aren't that great at picking up food allergies. Blood tests for allergie are better, but even an allergist will do an elimination diet and a food challenge (in office). (Though, in this case, the challenge is looking for immediate symptoms - which is what you get with IgE mediated responses. IgG mediated responses give you longer term responses - they don't start for anywhere from two hours to a day after you ingest the food.) Different blood tests are used to determine intolerances, though for things other than gluten-intolerance, this is still somewhat controversial in the scientific community.

[cynicaltomorrow]

Thanks for all of your help, guys. I just feel so lost. I know gluten makes me sick.. so obviously I stay gluten-free. But, I still get nauseated quite frequently when I eat. Before my doctor diagnosed me as being gluten sensitive.. he told me I had chronic gastritis. But, he never mentioned it again after that one time. He diagnosed me with the gastritis from analyzing a biopsy of my stomach lining. Could that be it? I would think if that was it.. my stomach wouldn't have hurt SO much more whenever I took Nexium. I also guess that I'm lactose intolerant.. even though there was no visible damage to my villi. But, I still get sick even when I eat gluten and lactose-free. I've also considered IBS.. but I'm not sure. That's what I thought I had to begin with.

[tarnalberry]

You may want to look for other food intolerances. There could be other foods causing the nausea. (When you say you eat lactose-free, does that mean you are completely dairy free? Milk has two potentially offending components: lactose and casein. You may have a problem with the casein. (It gives me symptoms similar - but not identical - to getting gluten.) )

[cynicaltomorrow]

How can I tell when I have a food intolerance?

[tarnalberry]

Some people find keeping a food and symptom diary enough. Some people remove the food from their diet for a number of days and then reintroduce it. Some people - like me - do a relatively strict elimination diet, removing all high-potential foods and then challenging their system with a questionable one, one at a time. Some people do a water fast and then challenge with the questionable foods, one at a time. Some people do IgG blood testing (by York, for example), but some doctors may hesitate to accept this as the scientific value of these methods is still under discussion. (I won't quite label it controversial, but there isn't community agreement on it's value.)