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Ige The Next Step?


kayo

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kayo Explorer

Hi all,

Still awaiting info on my thyroid and lupus test results but I'm betting I'm having some additional food intolerances and/or allergies. I suspect cocoa butter, coffee and tapioca.

Bone density results came back and it shows early signs of osteopenia :(

I want to get the most nutrients and vitamins out of my foods as possible and eliminate any culprits that may be hindering this absorption.

Is the next step IgE testing, and if so who does this testing? which doctor? It'd be great if I could get insurance to cover it. I paid for my own enterolab testing because I was fed up but now that I have a celiac diagnosis and reason to believe more foods are bothering me I would rather not pay out of pocket going forward.

Any other ideas besides IgE? I'm open.

Cheers! :)


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WheatChef Apprentice

IgE is the realm of Allergists. Try to find one that goes with the serological tests instead of the skin prick test as the skin prick test is somewhat soft science.

kayo Explorer

Thank you. I've had those skin prick tests so many times in my life (well before making sense of any of this) and they never showed any food allergies or intolerances except for slight allergy to carrots that the doc was unsure of, could have been the prick next to carrots that was swelling into the carrot area. ;)

Things like pollen, cats, dogs, ragweed, etc. always came up. I have seasonal allergies. I do think they once took blood work for milk allergy and it came up negative (well duh, I'm lactose intolerant not allergic to the protein).

I never felt like that doc knew anything pertinent to this century! Also, I hated that the test was done on my back and I couldn't see the results myself.

I explained my concerns but they never recommended IgE or any other type of testing. This was a good 4-5 years ago when I was trying to make sense out of all this. I didn't know anything about celiac at the time.

GFinDC Veteran

Have you tried an elimination diet Kayo? That is as good a way to go as any IMHO.

kayo Explorer

I've done specific food elimination diets on foods I suspected, ie, dairy, gluten, tapioca, chocolate, etc but not a full blown elimination diet. Right now I'm doing coffee. The IgE tests against numerous foods at once which would be a huge time saver.

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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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