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Testing Questions


Supermom

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Supermom Newbie

I am a newcomer to this site, and I am very grateful for all the information I've come across. I have not been diagnosed with celiac, but I'm being tested at my next appt. I know that there is bloodwork first and then perhaps a biopsy.

How long does it take to get the blood tests back? I'm leaving soon for a month's vacation with my family and I really want to have some idea before we go.

Thank you all so much,

Rachael


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Kayaking Mom Newbie

My daughter's were done at the lab at our local hospital. It took 3 or 4 days for the results to be called into our doctor. If they are not back before you leave, maybe give them a cell number, or try to call your doctor after the amount of time he tells you it should take to receive the lab work. If you are concerned about taking gluten-free food with you, it might be best to wait until after the endoscopy, if you are planning on having one done before going gluten-free. Otherwise, healing would start and then it would not show damaged villi if you are celiac. For the best test results, you need to be consuming gluten. Best of luck and have a fun vacation.

Supermom Newbie
My daughter's were done at the lab at our local hospital. It took 3 or 4 days for the results to be called into our doctor. If they are not back before you leave, maybe give them a cell number, or try to call your doctor after the amount of time he tells you it should take to receive the lab work. If you are concerned about taking gluten-free food with you, it might be best to wait until after the endoscopy, if you are planning on having one done before going gluten-free. Otherwise, healing would start and then it would not show damaged villi if you are celiac. For the best test results, you need to be consuming gluten. Best of luck and have a fun vacation.

Thank you, I'm not as concerned about going gluten-free on vacation, as I know that would be impossible. We're going to the upper peninsula of Michigan, and while it's very peaceful, it's not exactly a center of alternative foods! I also know, as you said, I want an accurate test, so even if I had an endoscopy afterward, I'd want it to the right results.

I will have to give them my cell just in case. I want to know for peace of mind, since I've had all these health problems for quite some time now and I'm impatient for an answer.

Thanks again for your help, and I hope your daughter is well!

Rachael

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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.
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      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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