Reintroduced gluten for Celiac test...

[Savoir Faire]

I have been gluten/wheat free for several months now. I found out a bit ago that I needed to be eating gluten in order to take the celiac test.

So, happily, I started eating gluten. Bread, stuffing, cake...ahh, Thanksgiving! Now, about 1/2 week in, the symptoms finally started.

The first day, I came down with mouth sores (hadn't had them since giving up gluten). Today, I had the recurrence of morning nausea (am not pregnant-- have had this issue since first giving birth in 04). This afternoon? A horrible headache that will NOT go away and vomiting.

I'd love a little bit of misery loves company today. Did anyone else have to go through this for their Celiac testing? I'm doing this for my children and mom (I think she might be celiac) and to know For Sure.

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[Ruthla]

Well, whatever the test results, you know that you personally need to avoid gluten!

When do you have the testing done? When can you go back to a GF diet and start to heal?

[Savoir Faire]

I'm hopefully going to have it done at the end of this week. The first few days, when the headaches didn't come, I hoped it was all a fluke and that I could get back to "normal"...especially once I tasted what "real" cake was like again!

[Panserbjorne]

blood tests for IgA, IgG, and TTG generally require a minimum of 7 weeks of gluten exposure for a proper evaluation.

I did not do it. We ran different tests. I refused to intentionally do damage for almost two months when it isn't a terribly accurate test to begin with.

[thepeach80]

Yes, you have to be eating gluten for quite a while, especially if you've been gf for a while, for it to even think about registering on any test, especially a scope. You know you need to avoid gluten, this has proved. What are you hoping to gain w/ the test?

[Savoir Faire]

Honestly, I know it sounds silly, but this whole gluten/wheat "adventure" has been so troublesome so far, that I want an answer for my family.

My mom most definitely has issues that I think are celiac and I'm worried that my kids will, at one point, develop it as well. Getting this far has been a struggle--even my allergist who originally diagnosed the wheat issues has not been helpful.

So many times, I feel as if I'm traveling down this road by myself-- with doctors who don't seem to understand what is going on or what needs to be done. My doctor didn't even tell me I had to be eating gluten!!! I found that out online!

When I did call to ask, they said 'yeah, for a week." I heard it was much longer than a week.

I guess, for both myself and my family is why I'm doing this. Celiac is very different from the wheat allergy, though they are treated the same way. If there are risks that come from a possible diagnosis I just feel better knowing it straight out.

(Now that my headache is better, I'm all I CAN DO THIS! Today, earlier? Didn't feel that way.)

[Panserbjorne]

Are your kids off gluten? IF not-just have THEM tested. OR you could all test for the gene if you're worried. You know that even if hte blood test is positive you still aren't diagnosed until you have 3 biopsies? One on gluten, one off and one back on again? That's the gold standard. IT's not an easy road. IF you have the gene you know there could be major problems so you'd just avoid it.

You can do other test to determine allergies to gluten containing grains that don't require gluten consumption. If you have a great doc they will look at your symptoms along with the allergy results and just diagnose you. I can't emphasize enough how rare that would be. You can also look at enterolabs stool test...don't need to be eating it for that either.

I would have to really be clear that once you've been off gluten reintroducing it if you truly have celiac is actually more damaging than if you'd never taken it out. If your body has experienced the ability to start healing and you throw gluten at it (or any other allergen really) your body will revolt. This is why elimination diets can be effective. Once you are off an allergen the reintroduction *can* be almost violent. It's an absolute assault on the system.

IF you think there's a chance that you have it (based on your mom's experience too) I would just eliminate it from your house and your children's diets. It's not hard to live GF, and many doc's truly believe that everyone should be GF.

[isabellegf]

Just wanted to give a shout out of encouragement. I think you are doing the right thing. This is important information for your family both now and in the future. Especially since the consequences of untreated celiac are so dire (cancer, etc). You can have celiac with out classic GI symptoms and do enormous damage. You've probably read all this on the net.

The University of Chicago pediatric celiac disease program has a nonprofit hotline for ALL people with medical questions about celiac disease. You can call for free and they'll help you. There is a lot of misinformation on the net and it can be hard to sort out.

http://www.celiacdisease.net/programs-&-events

Obviously, you know you have some issues, but I do think this it is important in the long run for your family to try for a diagnosis. Good Luck. Hope that helps.

Just my opinion.

[thepeach80]

Why not test through someplace like Enterolab where you don't have to be eating gluten and they do a gene test to see if you have the celiac and/or gluten intolerance gene.

[Village Mama]

I am in full agreeance with firefaery... we reintroduced gluten for our celiac blood panel as well... we were told a few full days of gluten exposure would be adequate. We ordered pizza the night before thinking that the antibodies would be in our system for detection. We were all very very sick ( and I know that for me it takes weeks to recover from a small exposure) and really suffered and our panels came back negative. I will not put myself and my family through the damage long term. It would have been nice to " know" , but I have seen the consequences. I don't need a doctor to tell me at this point fif it is true or not.

[jayell79]

My Immunologist and I talked in great length about CD. He said the blood tests are not very accurate, and the only real 100% sure diagnosis is through a small bowel biopsy. He said that if his patients failed the blood test, but still had symptoms of CD, he would order the biopsy. Some doctors would not biopsy if the blood test was failed, but this is a mistake he said about 1/2 of the people he's diagnosed failed the blood test but proved positive with the biopsy. Another important test is a simple nutritional density test I think he called it. To see if you are deficient in any vitamins or minerals. He said a lot of Celiacs are also anemic.

I failed my CD blood test and was not anemic. All of my symptoms vanished after eliminating everything I tested positive too on my skin prick & Intradermal tests. Therefore I do not have CD, and we verified this later by eating one of the only 2 grains I'm not allergic to.

I think that just like Village Mama, you could be going thru all of this now for no reason, and your test could come back negative. If an actual diagnosis is that important to you, I would skip waiting for the blood panel results and go for a biopsy. With the biopsy, you don't have to be eating gluten at the time because the damage takes some time to heal, and they can see previous damage from what I've been told.

[Panserbjorne]

This is *partly* true. Many things can damage the villi and microvilli, celiac is not hte only culprit. It's great if your doc is willing to diagnose that way, but most aren't. All that test tells you is that you have intestinal damage from an unspecified source.

Same is true for the nutritional deificiencies....they can be caused by any intestinal issue which includes but is definitely not limited to celiac disease.

Really, a stool test is the only non invasive relatively definitive test that I know of. Even the genetic test has undergone some scrutiny. There are several markers that are analyzed and *I* feel you can diagnose from the genetic test alone. I would like to reiterate it is absolutely true that the blood test for the antibodies is not terribly accurate. There are follow up tests that are "necessary" and you should question your doc as to how far he needs to go for a diagnosis. If he's a guy who needs a positive blood test and 3 biopsies I would personally (and I did) find someone else.