Do You Ever Question - "what If It's Only An Allergy?"

[raisin]

Because I was so sick, the second I found out celiac disease existed, I went gluten-free. I got tested afterward.. By a few months, and it was too late to be positive. Never had an endoscopy. All I cared about was the fact that my symptoms were slowly vanishing and I wasn't a living zombie in constant pain.

Now I find myself questioning my leap of faith. It's true I'm super sensitive.. But what if it's only to wheat, a regular allergy? What if I didn't test positive because I'm not genuinely celiac?

After realizing my Gluten symptoms were almost identical to my Soy and other allergy symptoms, I began questioning the possibility "just wheat." If it's true, I would have recovered just the same, and react to even the tiniest amounts of wheat CC, and maybe CC from oats. All of the other signs, like delayed growth as a child, could potentially be explained by long-term chronic allergen exposure, not just celiac.

Still, I'm too scared of the potential reaction to jump in and try barley or rye. (no oats, they make me sick.) I can't decide if it's worth a potential reaction, as stupid as that sounds. My instinct is not to believe I'm not celiac, because I had so many reasons at the start, but I can't even remember them all anymore so I can't even be sure my objection is valid. I'm confused, now. Any advice? Anyone else go through this?

On one hand, I am perfectly comfortable being a celiac; living and eating this way. On the other, after finding out my stomach remaining pains are caused by a severe allergy (Birch Pollen cross-reactive foods that includes "wheat"), the first thing people ask is "So you don't have celiac?" and say it would be so convenient for me and everyone around me.

[Tim-n-VA]

I don't necessarily recommend this but one test that would be a general indicator of an allergy versus celiac would be to eat some wheat. When the symtoms start, take an antihistimine. If the symptoms improve pretty quickly, you "only" have an allergy. If the symptoms don't improve you probably have celiac.

[Mother of Jibril]

I wonder too... and I have multiple allergies confirmed with skin testing. Corn gives me the same kind of abdominal pain as gluten I get horrible abdominal pain when I have an anaphylactic attack (along with diarrhea, vomiting, dizziness, hives, etc...), but I'm still trying to figure out if allergies can cause chronic abdominal pain. The literature is SO confusing... the word "allergy" is really overused. What I have is a lot worse than a runny nose and itchy eyes.

I guess there are three things that keep me from trying barley and rye...

1) I do have the DQ8 gene (although I could always try a gluten challenge)

2) Right now I'm so desperate to stop the anaphylactic reactions... I'm not in the right frame of mind for an experiment with grains

3) It's easy to avoid barley and rye when 99% of processed foods give me abdominal pain. Last month I tried some chocolate cake from a Namaste mix (gluten, corn, dairy, and nut free)... couldn't handle it.

Unfortunately, I don't think a severe pollen allergy is more "convenient" than celiac disease! Take celery, for example, which can be cross-reactive for people with allergies to birch, mugwort and/or ragweed. Do you have any idea how many products have some form of celery hiding in them? ALL bullion cubes, a lot of "spice blends," canned soups, potato chips, dip mixes... celery is a very tasty vegetable. It makes me want to move to Europe where celery is considered a "major allergen" that has to be listed on packages. Plus, you can never completely get away from pollen (well... maybe if you moved to Antarctica), so you can have problems no matter how diligent you are about your diet.

It's SO frustrating.

[raisin]

I wonder too... and I have multiple allergies confirmed with skin testing. Corn gives me the same kind of abdominal pain as gluten I get horrible abdominal pain when I have an anaphylactic attack (along with diarrhea, vomiting, dizziness, hives, etc...), but I'm still trying to figure out if allergies can cause chronic abdominal pain. The literature is SO confusing... the word "allergy" is really overused. What I have is a lot worse than a runny nose and itchy eyes.

I guess there are three things that keep me from trying barley and rye...

1) I do have the DQ8 gene (although I could always try a gluten challenge)

2) Right now I'm so desperate to stop the anaphylactic reactions... I'm not in the right frame of mind for an experiment with grains

3) It's easy to avoid barley and rye when 99% of processed foods give me abdominal pain. Last month I tried some chocolate cake from a Namaste mix (gluten, corn, dairy, and nut free)... couldn't handle it.

Unfortunately, I don't think a severe pollen allergy is more "convenient" than celiac disease! Take celery, for example, which can be cross-reactive for people with allergies to birch, mugwort and/or ragweed. Do you have any idea how many products have some form of celery hiding in them? ALL bullion cubes, a lot of "spice blends," canned soups, potato chips, dip mixes... celery is a very tasty vegetable. It makes me want to move to Europe where celery is considered a "major allergen" that has to be listed on packages. Plus, you can never completely get away from pollen (well... maybe if you moved to Antarctica), so you can have problems no matter how diligent you are about your diet.

It's SO frustrating.

Aah your like my symptom-twin. I am currently in the middle of an anaphylaxic reaction, and have been having them (without even knowing what they were until recently) for quite some time, semi-regularly. I thought it was, well, I don't even know. I just referred to them as "spells of extreme sickness that usually happen at night for a few hours at a time." And, I also get horrible abdominal pain.

I was trying to figure that out, recently, and it turned out at least when you are constantly being exposed to allergens, and especially in cases of anaphylaxia, yes, it can cause chronic abdominal pain.

I mean, I haven't had my DNA tested but I have other reasons to believe it may be in my genetics, which is one reason I'm not ready to jump into a pile of rye.

The pollen, I can control (at least, avoid recurrent sinus infections) with a high dose of a prescription seasonal antihistamine. However, the food part of that allergy is even harder to navigate around than celiac.. and had I not been on a gluten-free diet for the past year, I wouldn't even see it as a possibility. Now, however, I have some skill in the "avoiding foods" department, and I'm not worried.

I don't necessarily recommend this but one test that would be a general indicator of an allergy versus celiac would be to eat some wheat. When the symtoms start, take an antihistimine. If the symptoms improve pretty quickly, you "only" have an allergy. If the symptoms don't improve you probably have celiac.

I think I have an anaphylaxic allergy to wheat. Too bad, that's a genius idea, and if it was a regular allergy, I'd do it.

[raisin]

Just an update : I am no longer even thinking such a silly thing.

After finding the root of my problems was not just other "food allergies", but caffeine and rice, and that my reaction to coffee and rice was identical to other celiacs, on top of those being significantly more common sensitivities in celiacs than non-celiacs, I will not even risk trying rye. It makes sense that a caffeine would emphasize my rice allergy, so it would behave similar to glutenings. (indigestion, sleep problems, stomach pains, edginess, skin irritation, etc) and because they are commonly connected, having one doesn't mean not having the other!

[JodiC]

Are your anaphylactic reactions treated with Epi????? If you are having a true reaction you may one day be faced with intubation.

[Mother of Jibril]

Are your anaphylactic reactions treated with Epi????? If you are having a true reaction you may one day be faced with intubation.

Mine are... I used an epipen a couple of days ago when I had another attack.

My allergist's opinion is that I probably won't go into anaphylactic shock because (at least so far) I've been able to breathe during these episodes. I'm not so convinced. I carry my epipens EVERYWHERE.

[Generic]

I questioned for years whether or not I had celiac. My endo results were "inconclusive". I got ahold of my then 19 year old medical records. The results were in fact not inconclusive. I had blunted villi and it was completely gone in patches. So I know without a question that I am celiac.

Have you considered having a scratch allergy test for wheat? Just a thought...

[caek-is-a-lie]

It makes sense that a caffeine would emphasize my rice allergy, so it would behave similar to glutenings. (indigestion, sleep problems, stomach pains, edginess, skin irritation, etc) and because they are commonly connected, having one doesn't mean not having the other!

Can you expand on this in more detail? I can't eat rice, either, but can't figure out why, and am currently experimenting with coffee, which gives me minor problems, but I don't know if it's the brand, the coffee in general, or just the caffeine. I do get stomach pain from coffee, as well as some abdominal cramping right afterwards, and it makes my esophagus hurt on occasion as well. But I LOVE coffee so much it's hard to give it up again. More info would be great!

[miles2go]

I don't necessarily recommend this but one test that would be a general indicator of an allergy versus celiac would be to eat some wheat. When the symtoms start, take an antihistimine. If the symptoms improve pretty quickly, you "only" have an allergy. If the symptoms don't improve you probably have celiac.

Conversely, if you are on a medication like Xolair, which is supposed to stop all allergic reactions and you still manage to get glutened occasionally, it's probably a wheat allergy and celiac or a wheat allergy that progressed to celiac.

Margaret

[samcarter]

Once I had a lovely bowl of Corn Pops, without thoroughly reading the label. It didn't say "contains wheat", so I had some, then felt bad, read the label again and saw "barley malt" on the label. The same thing happened with a Clif bar; i didn't see wheat on the label; read it again after feeling gross and it said Barley.

So I'm fairly sure it is a gluten thing, and not just wheat, for me.