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Blood Test


JackieC

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JackieC Newbie

My daughter tested negative for celiac disease after her first blood test. Her symptoms all point to celiacs. I do not want to put her through a biopsy at this point (she is 4). She seems to be reacting favorably to her new diet. I guess I am in denial. It is so difficult to feed a picky 4 yr old who can eat anything. Now throw this into the equation and I just don't know what to feed her. I went to the grocery store and was so discouraged reading the labels. Everything contains wheat. There is a gluten free section, but I am finding that a lot of the items are snacks and not "real food".

How many blood tests have you had before you tested positive? Also, if you are eliminating gluten from your diet, how could the test ever be positive?


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StephanieL Enthusiast

You have to be ON gluten to test the blood for Celiac (except the genetic test but that isn't diagnostic). We did three blood tests because we went to several Dr's but they were all +. Maybe check out Dr. Fasanos five diagnostic points to get an idea of what they look for. A + biopsy OR = blood work is needed for a Celiac dx but there are gluten sensitivities which don't hit all of the marks. If there is an improvement on the diet, stay on it!

nvsmom Community Regular

My kids all tested negative but my oldest son has some sort of food sensitivity so he is now gluten-free and almost milk free. He has less stomach aches and has gained about 2lbs in these couple of weeks that he has been gluten-free. I'm not sure if it coincidence, but he's staying gluten-free so won't be tested again any time soon.

His brothers are also gluten-free and one is very very picky. I let him snack on chex, and he has a slice of gluten-free bread a day, but that is the only processed foods he eats. I have to spend a lot more time cooking (gluten-free pancakes each morning with bee pollen, flax, whey protein added for health, and home made chicken nuggets a fe wtimes a week) but it's worth it.

Best wishes.

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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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