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Testing Question


mistresninos

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mistresninos Rookie

We are still in our testing phase. The specialist claimed the paed did not order the correct testing for Celiac. <_<

Anyway, we are going back to a different specialist but at the same office on Wednesday so I've been doing some more research because we still have no difinitive answer (the lab has not returned the results of the last tests).

I ran across this article Open Original Shared Link . In it the author says, "There is no test yet which is definitively diagnostic of celiac disease. Relief of symptoms or reversion of an abnormal intestinal biopsy to normal on a gluten-free diet is the most convincing evidence that an individual has celiac disease or gluten sensitivity."

Is this simply old information? I am wondering because we have placed our son on a gluten-free diet and he has improved nearly 100%. Whenever we waver from that diet in any way, even to wheat-free foods, his symptoms return.

Thanks so much for any information on this.

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debbiewil Rookie

None of the current tests are perfect. The blood tests can indicated celiac, and testing positive on more that one is highly significant. If the biopsy shows villi damage, especially with positive blood tests, then celiac will probably be diagnosed. There are one or two other things which can cause villi damage, though, but they are very rare.

Also, if you (or your son) is already on a gluten free diet, then that can mess up the test results. The tests are most likely to be false negative. You usually have to be eating gluten on a regular basis for a long time in order for the tests to be positive.

Debbie

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Rae Apprentice

I lost hope in a lot of doctors. I had positive bloodwork for celiac disease, but my doc said everything looked fine in my endo/colon (which i took today), she just has to test the biopsy. It may just be that your son is gluten sensitive and does not have celiac disease- beware I am not a doc, just giving you my opinion- but that what my doc told me. And sometimes test will turn up negative- especially when your son is on a gluten-free diet. My advice is to do whatever makes him feeling better- if the diet work then continue, regardless if docs say he doesnt have celiac disease. Make sure you check for everything possible, get 2nd opinions. good luck!

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VydorScope Proficient

Okay, heres the simple deal... if your child gets better with gluten-free, and worse when he gets gluten that is diagonostic enough.

A full blood panel and biposy could confirm that, but ONLY IF YOU DO NOT PUT HIM ON THE GLUTEN FREE DIET. You siad he is currenlty on the diet, so his test will not be usefull.

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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
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    • trents
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    • Fluka66
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    • Moodiefoodie
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