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Checking Levels


barilla

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barilla Explorer

Hi,, I was wondering if anyone else had a primary doctor like mine...

He won't check my Igg and Iga levels agian to see if they went down. I've been gluten-free since May 1st 06 and I am curious to see if the levels went down. He says he doesn't test them again. Then the last two visits I've been to I've asked him to check my vitamin/minerals just in case I have any deficiencies. He will only check my B12 and Folate. He says he won't need to check the others, just to take a multivitamin. He is also very clueless with celiac disease.

why can't I get any answers?? Should I switch doctors? He never seems to listen to me. He talks right over me and pushes me out the door.

Sorry to be negative sounding,, I just need to vent a little.


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Nancym Enthusiast

Yeah, sounds like you need a new doctor. Having one talk over you and not listen is not good. Very not good. Try to get a referral from someone who really likes their doctor.

Guhlia Rising Star

I would probably sit down with your doctor and explain that you don't feel as though you're getting the care that you deserve. Perhaps present him with some papers on Celiac so he can better educate himself. If he's not willing to work with you, then I would start looking for another doctor. Often though, doctors are so rushed that they don't realize that they're not being helpful, especially if you're not good at being pushy. I would give him the chance to make things right, but certainly don't let him refuse you the testing that you feel as though you should have. Your health is far too important to let him brush you off like that.

SillyBoo Newbie

If the previous suggestion doesn't work, I would seriously consider changing doctors. If this doctor isn't listening to you, what else is he missing? Once I finally realized that my symptoms were serious enough to share with my doctor, she investigated all sorts of things. She's the one who suspected Celiac, not me, despite the fact that my primary symptoms were not digestive at all. I was dealing with chronic fatigue and brain fog, and thought I had some sort of recurring viral crud. Had she not really listened, and really trusted what I told her, I probably would have been sent out the door without such a thorough investigation.

I haven't had any follow-up tests yet (only 2 months gluten-free), but I feel certain that getting them won't be an issue. You shouldn't have to fight so hard to get decent care.

Sophiekins Rookie

Conventional standard of care (at least in Canada and the UK) dictates IgA and IgG follow-up testing every 6 months for the first two years to quantify adherence to the gluten-free diet, and further testing after this time in case of unexplained symptoms. At the same time as the celiac panel, standard panels checking blood glucose, iron, thyroid function, and B vitamin absorption should be run to track intestinal healing. After the initial two years, your blood glucose and thyroid function need to be checked at least annually because of increased risk of thyroid disease and diabetes. Point out to your doctor that celiac disease, because of its many symptoms, can be difficult to diagnose and that repeated bloodwork (just like the repeated biopsies that used to be the gold standard) is the best way to ensure that the diagnosis was correct and that the patient is responding to treatment. If he still won't test you, gently point out that if it isn't working and you get sick, you will have an excellent case for malpractice. Then get the tests (and copies of your records!) and take yourself to a new doctor. If you're brave enough, you could also report him to your state or provincial medical board for malpractice investigation. . .

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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. 
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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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