Diagnosed Celiac, But Not Allergic To Wheat?

[Greg Rappaport]

OK... Somebody please explain this one:

I have been diagnosed with celiac disease now for 12 years. Gastroengerologist confirmed via bloodwork and biopsy, as well as recovery following gluten-free diet with multiple rechecks (biopsies) over the past 10 years.

So I go to an ENT doctor last year to get tested for seasonal allergies (prompted by nasal congestion, etc.) I did the standard environmental allergy tests as well as food allergy tests. In the food category I came back positive for soybeans (which I eat all of the time!), but I came back negative for wheat. Can anybody explain this?! I guess I'm allergic to it on the inside, but not on the outside?

A last thought... Is it possible that soybeans can be a significant source of problems ranging from inflamation to joint pain to sore, dry eyes?

[Poppi]

Gluten intolerance and Celiac are not allergies. You are not allergic to wheat, your body has an autoimmune reaction to the gluten protein found in wheat, barley, rye etc. Now, obviously this means you can't eat wheat, allergic or not.

Allergy means that your body initiates an anaphylactic or histamine reaction to a substance.

Autoimmune means your immune system attacks your own body in various ways when confronted with a substance. Antihistamines and Epipens will not help you in this instance. On the other hand, your throat isn't likely to close up either.

Clear as mud?

And my mom has a soy allergy and her #1 symptom is joint pain.

[Greg Rappaport]

Gluten intolerance and Celiac are not allergies. You are not allergic to wheat, your body has an autoimmune reaction to the gluten protein found in wheat, barley, rye etc. Now, obviously this means you can't eat wheat, allergic or not.

Allergy means that your body initiates an anaphylactic or histamine reaction to a substance.

Autoimmune means your immune system attacks your own body in various ways when confronted with a substance. Antihistamines and Epipens will not help you in this instance. On the other hand, your throat isn't likely to close up either.

Clear as mud?

And my mom has a soy allergy and her #1 symptom is joint pain.

Very nice explanation. Thanks. Can't say it is as clear as mud, but perhaps I need to start doing more of the "dirty" work in pursuing my symptoms. Thanks for the feedback. I'll also look into the soy thing. I guess I need to determine if I am having an autoimmune response to soy, yes? Do you know if there is a simple bloodtest for this?

Regards.

[tarnalberry]

OK... Somebody please explain this one:

I have been diagnosed with celiac disease now for 12 years. Gastroengerologist confirmed via bloodwork and biopsy, as well as recovery following gluten-free diet with multiple rechecks (biopsies) over the past 10 years.

So I go to an ENT doctor last year to get tested for seasonal allergies (prompted by nasal congestion, etc.) I did the standard environmental allergy tests as well as food allergy tests. In the food category I came back positive for soybeans (which I eat all of the time!), but I came back negative for wheat. Can anybody explain this?! I guess I'm allergic to it on the inside, but not on the outside?

A last thought... Is it possible that soybeans can be a significant source of problems ranging from inflamation to joint pain to sore, dry eyes?

Allergy tests look for IgE-mediated responses. Celiac is mediated by different immune molecules - IgG and IgA in particular. They are two totally different things.

[shadowicewolf]

my mother and grandmother still have a hard time understanding this

[Bubba's Mom]

I was recently diagnosed with celiac disease. I immediately stopped eating gluten, but had a sensation of my throat closing when walking through the bakery department in the grocery store. It was scary, so I asked my allergist for food allergy testing.

I didn't react to anything! Not even wheat, which really surprised me.

I seem to get a dizzy feeling when I consume soy. I'm trying to avoid it to see if I can truly put the blame on it for my symptoms. I've read that a lot of celiacs have problems with it.

Good luck to you in sleuthing out the cause of your problems.

[Greg Rappaport]

I was recently diagnosed with celiac disease. I immediately stopped eating gluten, but had a sensation of my throat closing when walking through the bakery department in the grocery store. It was scary, so I asked my allergist for food allergy testing.

I didn't react to anything! Not even wheat, which really surprised me.

I seem to get a dizzy feeling when I consume soy. I'm trying to avoid it to see if I can truly put the blame on it for my symptoms. I've read that a lot of celiacs have problems with it.

Good luck to you in sleuthing out the cause of your problems.

Thanks. I have never had any of this, but I imagine you will stil need some time (1-2 years) to see the results of your gluten-free diet and any net positive results. Good luck to you as well.

[GFinDC]

Enterolab has a test for soy intolerance I think. along with egg and casein and something else I don't remember. I've never used their tests myself. I did elimination diets to find my intolerances.

There are 5 different kinds of immune cells I think. IgE is the allergy ones, and the others are good for self destructing your body, and killing off germs once they invade. Very important by the way. Germs are everywhere it seems.

You can have both IgE (allergy) and and other immune cell responses, there are no rules saying you can't have both.

And yes, soy is bad stuff, there's loads of info about it being bad available on the web. Most people don't bother to look for it though.

[Greg Rappaport]

Enterolab has a test for soy intolerance I think. along with egg and casein and something else I don't remember. I've never used their tests myself. I did elimination diets to find my intolerances.

There are 5 different kinds of immune cells I think. IgE is the allergy ones, and the others are good for self destructing your body, and killing off germs once they invade. Very important by the way. Germs are everywhere it seems.

You can have both IgE (allergy) and and other immune cell responses, there are no rules saying you can't have both.

And yes, soy is bad stuff, there's loads of info about it being bad available on the web. Most people don't bother to look for it though.

I did allergy testing for the first time last year, and of all the foods tested, the only one I came back positive for was soy. Indeed, as I stated in another post, I eat soy (like edamame) frequently, but have never had any form of rash, breathing issue or other problem. I guess I'll have to ask my GI doc. about being tested for soy intolerance. Intersting point. Thanks for sharing.

[StephanieL]

Allergy testing is only 50% accurate for a positive result (92% for a negative). So even if your test is +, you may not be allergic. I would start keeping a detailed food log as well as symptom log and see what happens. If you don't see something clear, maybe go off ALL soy for a few weeks and see what happens.

[T.H.]

I did allergy testing for the first time last year, and of all the foods tested, the only one I came back positive for was soy. Indeed, as I stated in another post, I eat soy (like edamame) frequently, but have never had any form of rash, breathing issue or other problem.

The lack of hives, breathing issues, and such is one of the reasons a lot of milder allergies don't get diagnosed, from what I can tell. You said it kind of joking before, about being allergic to something on the inside and not the outside?

That actually happens, according to my allergist. Or rather, our reacting to a substance only once it comes into contact with our mucus membranes or digestive tracts is not unheard of. And often, this type of reaction doesn't involve hives or breathing issues. Instead, it tends to involve inflammation, especially anywhere in the digestive tract, and some of the milder problems associated with any kind of allergic reaction, just like hay fever.

One would be more tired, possibly, feel a little sick like a cold or flu, feel achy and 'blech,' possibly have digestive trouble or congestion, and if it gets really bad, you can have the tongue or throat swell up, as well. Not that there aren't a lot of false positives on allergy tests, too. Those happen frequently, I understand. But the reactions can be...different than expected.

I was diagnosed with multiple food allergies after I went gluten-free, but I never got hives or anything. After avoiding them for a year now, I still don't get hives if I ingest any of them, but I notice now that within minutes, my throat is a sore, I'll get a little bloated, and often over the next 24 hours, I feel achy and crummy, just like I do with hay fever allergies. The more I get, the worse I feel. It has tracked very consistently now (sadly. I kept hoping that I wasn't allergic to these foods!).

For a few of these, there is also an emotional component, where I will just be irritable as all get out for the day or two afterward. Don't know if it's related to the symptoms, or if there's something else, but...guess what I'm saying is that you might be surprised what form an allergic reaction can take.

[StephanieL]

For a few of these, there is also an emotional component, where I will just be irritable as all get out for the day or two afterward. Don't know if it's related to the symptoms, or if there's something else, but...guess what I'm saying is that you might be surprised what form an allergic reaction can take.

Were these IgE allergies? Or intolerances? There is a difference in how they are mediated. IgE are the breathing, hive, shock causing ones. The ones *most* allergist consider "true" allergies.