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My Diagnosis


Mateto

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Mateto Enthusiast

So today I went to the doctor to get the results to my bloodwork.

She had the results, only she never had the results to the coeliac test -- which is the main reason I was tested of course.

Then she told me I was bulimic or anorexic, I had to be, because I look like it. It was no use trying to defend myself because she kept saying "umhumm", you know, that sceptical "yeah, whatever" kind. Now I have to get more bloodwork, and spend more time being SICK.

Also, my iron levels are HIGH! Too high infact. Is this common?


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mushroom Proficient

How frustrating! Oh no, I didn't test you for celiac because I don't think you have celiac, I think you are just bulimic or anorexic. Now really, wouldn't you know if you were bulimic? She must obviously just think you are looking for attention. Well, you are, but of the informed kind!!

mamajchis Newbie

My primary care doc thinks I am a lazyhypochondraic just because he is inept at finding the cause for my very long list of syptoms which are sypmtoms of celiac. I finally did have the bloodwrok done but understand it can give a false reading. Mine came back negative. I went gluten free mon March 19 2012 and have noticed great improvemt in my body na dmostly my mind. The brain fog was so bad I couldn't think straight, couldn't carry on a conversation, loss of memory. Glute free and proud of it.

mamajchis Newbie

My iron levels, potassium levels, magnesium levels and B12 levels test consistently low. Potassium has been so low at times that it was close to a medical emergency which I could have died from. I take iron, potassium, magnesium and monthly B12 sgots along with a multivitamin and still blood work comes back with deficiencies. Hope my next bloodwork will be much improved.

  • 2 weeks later...
ncallier Newbie

My iron levels, potassium levels, magnesium levels and B12 levels test consistently low. Potassium has been so low at times that it was close to a medical emergency which I could have died from. I take iron, potassium, magnesium and monthly B12 sgots along with a multivitamin and still blood work comes back with deficiencies. Hope my next bloodwork will be much improved.

I hope your blood work is much improved on your next appointment! What just kills me is that even with a definitive celiac diagnosis by both blood work and endoscopy that my dr. didn't suggest any other tests or anything. He even diagnosed dermatitis herpetiformis but refused to prescribe Dapsone or give any other advice. He told me I could see a dermatologist or a dietician if I felt that I needed to??? I now plan to get an appt. with an internist (maybe??) for the vitamin / mineral tests.

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    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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