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k2626

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k2626 Explorer

How were you diagnosed (blood test, biop), how long did it take to get a dx and what symptoms led you to seek help? Thanks so much


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masterjen Explorer

I ended up in emergency twice with severe stomach pains (actually, lower abdominal, which probably caused confusion among the medical profession) in mid Jan. 2010. Prior to that I had had intermittent pressure in my stomach (not bloating) for almost 3 months, which became severe and more constant in mid-Dec. 2009. I was just getting my act together to see my doctor when I landed in emergency. No answers came from those two visits (they did CT, blood-work and ultrasound), and in between the last ER visit and when I followed up with my family doctor a week later, I did some research on my own, and several signs pointed to possible celiac. Talked to my doctor, who then sent me for the antibody blood test, which came back "high probable for celiac". I was then sent to a GI specialist for confirmatory biopsy, which came back "highly positive". I was diagnosed via the biopsy in the 2nd week of Feb..

mushroom Proficient

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

Jestgar Rising Star

My boss, who's an MD, suggested 'wheat' to me. I researched gluten and wheat, stopped eating it, and never looked back.

jerseyangel Proficient

"Nervous stomach", occasional fainting as a child. Teen years symptom free, in my late 20's after my second child was born, began having panic attacks, anemia, and nausea. Late 2003, had the flu and was never the same--developed chronic diarrhea, persistent anemia despite treatment, tingling/numbness/"burning", depression, anxiety, headaches, severe fatigue, and weight loss.

Family doctor was clueless--did blood and stool testing and said "possibly Chron's Disease". I read an article about Celiac Disease by chance and immediately asked for a referral to a gastroenterologist. He scheduled a biopsy (did not do the Celiac bloodwork). He could see damage with his eye, and sent me home that day with instructions to begin the gluten-free (and lactose free) diet. That was June 2005--I was 49.

masterjen Explorer

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

I've read posts and have seen the bios of several of those on this board, and have noted how many have gone years before being diagnosed, and consequently have suffered from associated conditions. I feel very thankful I was diagnosed quickly. Doesn't matter much now, but I do wonder how long I, too, would have been undiagnosed if I hadn't done my research and hadn't specifically said to my doctor: 'My symptoms might be suggesting celiac. Can we check this out?'

k2626 Explorer

I sure hope these stories help otheres in search of answers too


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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.
    • Matthias
      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.
    • trents
      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.
    • Scott Adams
      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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      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
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