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Unexpected Results


Poppi

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Poppi Enthusiast

I have 3 bio children and 2 Vietnamese girls who live with us 10 months a year and go home to their Vietnamese family in July and August.

I wanted to have my 3 kids tested for celiac before the whole house went gluten free but my doctor didn't want to do it, she refuses to acknowledge my celiac despite the strong family history (my Father, my maternal grandfather and my mom are all celiac or at least gluten intolerant, my mom never had a biopsy). I tried to do a gluten challenge to get tested but was so violently ill half way through the first day that I couldn't continue so I have no "official" illness.

So we went ahead and made the house gluten free without testing the kids, it would have taken months to get a referral to a pediatrician and I was constantly getting glutened so I couldn't wait that long.

I was sure that my oldest and youngest were gluten intolerant but also sure that my middle son was fine. Boy was I wrong!

The oldest and youngest have had no change on the gluten free diet. My oldest is still an insomniac and my youngest still eats dirt. Her pica is getting better but I've also been cooking on cast iron for her every day.

My middle son who I thought was fine is a totally different kid. He is 6 now and has always been difficult to handle. Near the end of the year he was referred for evaluation by his school to see if he was autistic or if anyone could figure out why he was so unable to control his emotions.

2 weeks into being gluten-free he is calm for the first time in his life. He doesn't lose his temper, he is able to deal with disappointments and unexpected schedule changes, he's quieter and nicer to be around. It's amazing. He's sitting on the couch watching TV with his little sister right now (she's 2) and nobody is crying. They always fight but they've just been getting along so well lately. I love it.

Yesterday we had to leave a moms' group outing at a local cheese farm because all the other kids were getting ice cream cones and my 2 year old was getting really upset that we couldn't have ice cream too. Surprisingly my 6 year old was the one who gave her a hug, calmed her down and convinced her that it was okay to go home because mommy would give us ice cream there. Normally I would have been literally carrying them both kicking and screaming to the car.

Yay! :D


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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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