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carrotraisincake

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carrotraisincake Newbie

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!


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Wolicki Enthusiast

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!

It certainly sounds like you could have celiac or gluten intolerance. I had the unbearable itching too, which has since gone away! If you are going to be tested, you must stay on gluten for it to be accurate.

One thing to remember is that testing is not foolproof. False negatives are very common. You can have gluten intolerance and never test positive, either by blood or biopsy.

The time it takes to feel better varies by person. I felt immediately better within 3 days, but then developed some secondary food intolerances, which took a while to figure out. Now, 6 months later, I feel like a new person! I've heard that if you've been sick for a long time, it may take longer to heal.

Whatever you decide to do, there is some great collective wisdom on this site to help get you through. good luck!

Kathleen Smith Contributor

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!

My main symptoms were headaches/anxiety/panic/bloating/constipation since I was around 13 years old, now I am 34. I went gluten free in April (with some mistakes) and my headaches are gone. Bloating gone. Constipation I still strugg with. Anxiety is fine, although I am still 10mg of meds for that. I wanted to give myself more time to heal before I tackle going off that.

Wait till you see the doctor and then if you do have Celiac or a gluten sensitivity this site will help. Everyone heals at different times. My headaches were almost immediate.

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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.
    • 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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