Eating For The Test Is Making Me Miserable!

[Savoir Faire]

Hello all. I was gluten-free for at least three months when I decided (via a doctor) to go in for the Official Celiac Test. First things first: I like the doc; he seems nice but he didn't seem to really know THAT much about Celiac past the traditional symptom of diarrhea.

I found out online that I needed to be eating gluten to take the test. Some people said three months. I called and they told me "a week."

In the past 1.3 weeks, I have gone from normal to:

Bloated

Constipated

Headaches/migranes

Mouth ulcers

severe stomach pain that almost sent me to the ER

Depressed

Irritable

I woke up this morning and thought "enough is enough." I could deal with a lot of the symptoms but the depressed feelings returning are just too much. My husband is saying "no, keep eating it for the test!"

But I feel as if there's no light at the end of the tunnel. I'm taking the test Monday-- but worry that I'm taking it too soon. I feel damned if I do and same if I don't.

I really want to know FOR SURE if this is the diagnosis, for me, my future health and my family members who could also have it.

Anyone else been there?

[Ursa Major]

I am sorry you are feeling so bad. Unfortunately, your doctor is utterly wrong. One week of eating gluten is almost 100% guaranteed to give you a false negative test result, even if you have celiac disease.

You'd need to eat lots of gluten for at least three to six months to even have a chance at an accurate diagnosis.

At this point your only chance of getting accurate readings without making yourself really sick again would be testing through Open Original Shared Link.

If you know gluten makes you sick, and not eating it makes you feel better, why bother with testing now? The diet itself is a valid test all in itself. If it makes you sick, don't eat it.

Your doctor wouldn't tell somebody with a peanut allergy to eat peanuts either, to prove to him that they really react. So, why do they do it with gluten?

True, you won't immediately die of a gluten intolerance if you ingest gluten. But you eventually will, given enough time.

[Savoir Faire]

Thank you so much for that link! I'm definitely going to consider that-- I can't see being miserable for several more months just for a test.

I guess that a "self-diagnosis" is not in my nature, you know? I'm a reporter by trade, so I'm definitely a "facts" type of girl. So I guess, for me, I feel this need to know if it is celiac or just a wheat allergy-- which I tested positive for by skin but not blood. Why celiac? The mouth ulcers, headaches and depression are what makes me think it is---but its such a major diagnosis that I don't feel right doing it myself.

But again, thank you for the link. I wish more drs knew about this.

[ravenwoodglass]

You have not really diagnosed yourself. Dietary challenge is also a valid form of diagnosis, for some of us it is the only way we can be diagnosed in this country because we don't show up in blood work. You were gluten free, you added gluten back in, you got sick again. That is diagnostic enough for some doctors. My gluten challenge resulted in a severe GI bleed when my symptoms returned. That resulted in the need to cancel the endo but I did get my 'official' diagnosis. It was at a pretty great cost though. Eating gluten for a week may not be enough to get you a firm diagnosis, heck even on a full gluten diet unless your villi are totally destroyed many GI doctors will not diagnose. Celiac is the only disease where doctors want us to make ourselves as sick as possible before they will diagnose. I had to be close to death before even one of them suggested it might be celiac. That was a very elderly allergist who guided me through the elimination diet. He found it and the GI almost killed me to 'prove' his diagnosis was right, even though I had seen many things go into remission on the gluten-free diet.