Questions About Tests For Celiac

[terrymarie]

Hi,

I've suspected I have celiac or gluten intolerance for a while due to the symptoms I've had. Additionally, I have Hashimoto's hypothyroid. Lately, I have become intolerant of dairy, as well. I went to a gastric doc on Monday. He's going to do the gold standard test on me and bloodwork to see if I carry the gene. My question centers around eating gluten before my April 30 test. I've been mostly gluten free for a while, but unintentionally I wasn't all that good about hidden gluten. I went back to consuming gluten in meals this week because I've read it impacts the test results if you go gluten free before you actually get diagnosed formily. I don't want to hinder my results. If even having a trace would be disasterous for someone with celiac, would it be enough to impact the results of the test?

[CMCM]

I am starting to think you can have gluten intolerance for quite a long time (decades perhaps) before actual celiac disease gets triggered (assuming you have the celiac gene, of course). You can probably have some degree of celiac disease for a long time before the damage gets bad enough to allow the antibodies to leak thru your gut and get into the blood, where it could finally be detected in the blood test.

If you have been mostly gluten free for some time, it's entirely possible your blood test would be negative because healing could have occurred, and re-introducing gluten for a test can be problematic....no one seems to be able to say definitely how long it would take to re-damage your intestines for purposes of a blood test. Some things I've read indicate rather a lot of gluten daily for 3 or 4 weeks, other things indicate longer than that, perhaps several months. Who knows? It's all very tricky.

I just read that damage to the intestines actually has to be quite severe to allow proteins to show up in the blood tests. For those with active celiac disease of a less severe nature, only about 30% of those will be positive in a blood test. SO......to me, depending on the blood test means you have to allow or create severe damage for the diagnosis. That seems kind of idiotic, but that's the general state of things.

What this means for MOST of us is that if we are reacting to gluten, and even if some degree of damage is occurring internally, we won't get a positive diagnosis very easily.

Testing for the gene is a great starting place....if you have the celiac gene you have a strong basis for more suspicion about celiac disease. If you don't have the gene, it could still be gluten sensitivity, which can make you very sick as well and which can also do internal damage to tissues and organs. So don't dismiss "mere" gluten sensitivity. Some researchers are starting to think that most, of not all people are gluten sensitive. Some just develop a better tolerance for it than others, but down the road it may well be discovered with certainty that eating gluten has led to a lot of our modern illnesses, such as obesity, heart disease, all the digestive problems such as heartburn and reflux etc., various autoimmune diseases, and so on. Over 200 syndromes have a strong link to celiac disease. Basically, gluten is a poison to everyone. I am really starting to believe that.

[terrymarie]

I think you are right. I don't want to dismiss an intolerance. I am not feeling very well since I started eating gluten for the tests, but I am going to try to hang in there. It does seem counterproductive to eat it in order to verify what you already know. I'd just go gluten free if not for the pain and the thought that my kids may need testing. The doc really believes celiac is the answer.

[mommida]

You must consume enough gluten to cause enough damage for the blood tests to show a positive result in the varying RANGE.

The genetic test is not very accurate (my personal experience).

The gluten free diet and your body's reaction is a test that you personally will have to interpret the results. It sounds like you have all ready determined your health is better on a gluten free diet.

Experimenting with the gluten free diet will throw off the results of the blood tests and endoscopy with biopsy.

L.