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Questions About Tests For Celiac

terrymarie

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terrymarie Newbie
terrymarie
Posted

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?

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CMCM Rising Star
CMCM
Posted

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 Newbie
terrymarie
Posted
  • Author

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.

  • 2 weeks later...
mommida Enthusiast
mommida
Posted

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.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
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      By trents · Posted

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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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