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Do You Have Pos Blood & Neg Biopsy?


GEF

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GEF Explorer

... and I'm assuming they expect you to throw the blood tests in the trash...

Gretchen

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A normal small bowel biopsy rules out celiac sprue, a true malabsorption state in which intestinal cells are visibly damaged, but it does not rule out gluten sensitivity. Although asymptomatic people with gluten sensitivity may have normal or near-normal biopsies, so also may people with symptomatic gluten sensitivity. This has been reported in the medical literature called "Gluten Sensitivity with minimal Enteropathy" or "Gluten-Sensitive Diarrhea without Celiac Disease". Even though such people's intestines appear normal under the microscope, up to one half already have nutrient malabsorption, a major contributor to osteoporosis and malnutrition, leading to the conclusion that microscopic analysis of intestinal biopsies is an insensitive way of assessing immunologic food sensitivity. However, because there is still a virtually universal reliance on small bowel biopsies to diagnose gluten intolerance, most asymptomatic or symptomatic gluten sensitive people are told they do not have a diagnosis of celiac sprue, and are given no recommendations to modify their diets.


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gf4life Enthusiast

Gretchen,

That is a great article, thanks for putting it here. It is exactly this reason why I like Dr. Fine's Enterolab tests. They pick up gluten sensitivity, where it is usually missed in the Celiac bloodtests and biopsy, yet still needs a gluten-free diet for optimum health.

Dwight Senne Rookie

Hmmmmm, that is a very interesting article. Seems to offer an explanation for all these negative biopsy results. He raises a good point in that even after a negative biopsy, it may be worthwhile to go on the diet to see if symptoms improve.

CarolynM Newbie

This is exactly where my daughter is right now! Positive antigliadin, negative biopsy but consistent symptoms that I tracked along with her diet and found the connection to wheat! That is why they did the blood tests; I almost feel like the doctor doesn't acknowledge the possibility that she is still at the least gluten-sensitive because it wasn't his "idea". He never mentioned there could be anything "in-between" - he basically told me either you have celiac disease or wheat is the greatest thing on earth for you. We got results from the biopsy a month ago; I wanted to believe the results but still see the correlation with wheat in her diet. We have just returned from a fun but messy and stinky vacation and are going gluten-free tomorrow - wish us luck! She is nearly 3 and loves wheat products.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      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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