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angel42

Had A Celiac Test While Off Wheat, Concerned Results Aren't Valid

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Hi,

I had a celiac test a few months back. I have had a bad stomach for as long as I can remember but it got so bad I went off wheat at the suggestion of a friend and went for a celiac test. I don't have the test results in front of me since the dr didn't give a copy. Only one of the categories came back high but I had been off wheat for over a week. I do feel much better since I have cut gluten out of my diet. I pretty much had a permanent stomach ache before. But I am concerned that my test results are invalid since I was off wheat. I really don't want to get back on wheat and get re-tested since wheat seems to make me so sick. Any advice?

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I would think that being off of wheat for a week wouldn't have had much of an effect on your tests. From what I've read a month can make a definate difference.

If your symptoms have resolved I wouldn't go back either.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Well, you can stay gluten free and if you feel better, consider that you've got your answer. If there is something else going on it would manifest itself whether or not you are gluten free. Realize that gluten free isn't the same as wheat free, gluten is also in barley and rye, and oats through cross contamination. So for example rice cereal with barley malt isn't gluten free, even though it's wheat free.

If you want an "official" diagnosis you should start eating everything again, a good amount of gluten every day for at least three-four months, and then have a blood test and biopsy.

Enterolab is a lab that tests from stool samples and says they can detect gluten sensitivity even after you've been gluten free for a while. Their results aren't acknowledged by a lot of doctors though so that would be more for your own piece of mind and feeling validated, it might not help you get an official diagnosis.

You don't necessarily need a diagnosis since you don't need a prescription to eat gluten free food. :) But some people feel that they can't stick to the diet without a doctors orders. Or they want to convince family members to get tested, too. On the other hand some people have been denied insurance because of a celiac diagnosis, so it can even be an advantage to not have one.

I had the same problem, I went gluten free before testing and my tests came back negative. I feel so much better on the diet though that I wouldn't dream of willingly eating gluten ever again. For me sticking to the diet hasn't been hard, but it's a personal decision.

Pauliina

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Angel,

Welcome.

Being off wheat for a week might have made a difference to the test results, as I know the antibody levels drop over time when you avoid gluten containing food. You might have to ring the doctor back and get a copy of your results to work out which result came back high.

In having said that, for that week did you only avoid wheat, or all products containing gluten, as in rye, barley etc?

At times the results can come back a false negative, but not very often will they be a false positive.

I guess in a case like this, you will have to ask yourself how much you need that diagnosis and whether it is worthwhile eating gluten again.

But if you feel better avoiding wheat as you have been doing, have you considered you might have an allergy to wheat, and not so much the gluten.

Catherine

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I am still trying to figure this all out. I have tried experimenting to see what hurts my stomach and what doesn't. These days it seems like unless i have fish or meat or plain dairy with no bread or condiments I get a bad stomach ache. Generally all I eat now is tuna fish, eggs, yogurt and cheese. Like today I went to Whole foods in Manhattan and got shepard's pie (cuz i was getting so tired of tuna fish) which does not have bread or flour but does have soy sauce and my stomach feels awful to the point where i am debating leaving work. I guess I don't need an actual medical diagnosis but the health risks that come with having Celiac really scare me so I would kind of like to really know but not so badly that I am willing to make myself horribly sick for three months to find out. Does that make sense?

Angel,

Welcome.

Being off wheat for a week might have made a difference to the test results, as I know the antibody levels drop over time when you avoid gluten containing food. You might have to ring the doctor back and get a copy of your results to work out which result came back high.

In having said that, for that week did you only avoid wheat, or all products containing gluten, as in rye, barley etc?

At times the results can come back a false negative, but not very often will they be a false positive.

I guess in a case like this, you will have to ask yourself how much you need that diagnosis and whether it is worthwhile eating gluten again.

But if you feel better avoiding wheat as you have been doing, have you considered you might have an allergy to wheat, and not so much the gluten.

Catherine

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Are you at least convinced that "something" you are eating is causing your problems? If you are then you have a couple of choices concerning your next step. The only way you are going to increase your risk of things associated with Celiac is to continue to eat gluten while trying to determine what is wrong. If excluding gluten (or somethng else) from your diet makes you feel better then why not do it for a while to see what happens. I think the worst thing you or anyone else can do is flip-flop between diet and testing. You could get yourself so out of sorts it will take forever to determine. Stick to one approach for the time being. As far as the test you just took was it a blood test for anti-bodies? If so you can use the results as a reference point for whatever you decide to do next. The first thing you need to do is look at the results of the test just taken. Proceed one step at a time. If you decide to stay off gluten then educate yourself about the hidden sources (like soy sauce) and try to keep it as simple as possible. Good luck.

Tom

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You have gotten good advice.

I think you should ask your doctor for your test results. You can make more informed decisions if you know what they are. You have a right to them. If you don't understand them, post them here.

Some people are non-celiac gluten-intolerant -- like me. I get sick with even small amounts of gluten, but I do not have celiac disease. Even many of the symptoms are the same.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Soy sauce contains gluten. :D You might have sensitivity to more than one food. A lot of people have bad reactions to soy as well.

Give yourself a few truly gluten-free weeks and see how you feel.

Consult this for a list of things to avoid: https://www.celiac.com/st_main.html?p_catid...-12106375047.ea

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