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Is It Worth Testing?


padronalisa

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padronalisa Newbie

i have been on a gluten free diet for almost 7 months now, and have seen a major change in symptoms

a brief history:

-mild to severe D almost everyday for the past 13 years (since age 11)

-diagnosed with IBS at age 16, treated with medication with little to no success, pepto bismol and immodium worked better but not completely

-severe joint cracking and mild shoulder and back pain

-weak tooth enamel and prone to cavities (esp compared to my sister who has always eaten the same things as me, but has stellar teeth)

-slow hair growth, weak brittle nails, moderate acne

-general fatigue

all of these symptoms have vanished or lessened with the removal of gluten from my diet. especially the D. i noticed a little bit of irritation recently, and removed dairy and things have improved a lot.

i have relapsed a few times, and each time i eat large amounts of gluten i will get fatigue and stomachaches for the first 48 hours and then D 4-7 days later for 48-72 hours. during that week after i have ingested gluten, anything really acidic or spicy or processed will also trigger D, so tomato sauce or peppers, things like that. however, if i have not had gluten recently, those things do not bother me at all.

with such a significant change, is it worth reintroducing gluten just so i can get tested? i'm pretty posivite i have either celiac or gluten intolerance, but im not sure what to tell people mostly because i havent been *officially diagnosed*

any thoughts? thanks!


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lesliev523 Rookie

I went off of gluten for a few months, as well, and noticed vast improvement. But then I would have a gluten binge fest, and tell myself that it is ok because I don't have Celiac.

Then I would feel like crap again....

I decided to go back on gluten to get tested because if I do have Celiac Disease, I will take my diet much more seriously. I had my blood test last week, and waiting on the results. The last few months on gluten has been icky... and if anything it has made me more resolved to stay away from it even if my blood test is negative.

So for me, I wanted the test. But if you can go gluten free and know that it makes you better, I don't know if the test is really necessary.

danielleb Newbie

I began a gluten-free diet last Fall after I started seeing a 'non-traditional' medicine doctor. I've had digestive problems my entire life, and now that I know more about gluten sensitivity, I realize that some other symptoms may be caused by GS. I was diagnosed with IBS by means of colonoscopy a few years ago, and my traditional doctor is attributing all my digestive problems to it. When I told her that I suspected a gluten intolerance based on my symptoms, and that I was considering a gluten-free diet, she sent me for a blood test and told me that I didn't have Celiac disease. My n-t doctor told me that a blood test is not conclusive unless it is positive. There is another test I could get done, but it's expensive. He told me that based on my family history (my dad has colitis and his sister has Celiac), plus my own symptoms and the results of my body chemistry tests (ex., vitamins D is low, I suffer from gout...) that he was 99% sure that I was gluten sensitive, and that even if I weren't, that it's a good diet to follow.

I am following it, though not as seriously as I probably should. I always assumed that an intolerance was less serious than Celiac, so I haven't been overly concerned about cross-contamination and occasionally have restaurant gravies, which are likely thickened with flour, and the occasional beer. My bowel problems haven't gone away, and they have even changed in a way that worries me, so I'm tempted to ask my doctor to put me through another colonoscopy or get the $250 test done or both.

I have so many questions and there seems to be so many unknowns. I'm also lactose intolerant, at least I think I am, but I can sometimes have a little bit of milk and cheese without problem, but I can't have a glass of milk and cream makes me very ill. (Does that make sense?) I've always attributed my severe hair loss to family genes (my grandmother was almost bald) but now I wonder if this gluten intolerance may be responsible. Perhaps she was gluten sensitive but we didn't know anything about it then. I've also been diagnosed through biopsy with Sarcoidosis, which is thought to be an autoimmune disease, although that hasn't been determined. I'm 53 years' old, and suffer from arthritis, and my gout attacks were caused by aspirin and pasta, of all things. I just wondered if others have all or some of these symptoms and whether a strict gluten-free diet has actually helped these other conditions and symptoms.

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    • 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.
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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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      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.
    • catnapt
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    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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