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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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    • Scott Adams
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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