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Waiting For Results


boho*mama

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boho*mama Apprentice

Hi, I'm new. I'm scared. I'm overwhelmed.

My son was just tested for Celiac yesterday, we'll get the results next week. He's got a lot of symptoms, he's 21 months and as developed (physically, emotionally and developmentally) as a 14 month old. His failure to thrive got me investigating and I wanted to talk to the dr about gluten intolerance but when the Dr saw the dry rash on his cheaks he suggested it first. If it comes back positive will we all need to be tested? My other son has eczema but no other symptoms....sorry train thought...

We are planning to go gluten free but that task seems impossible. I know it's not, I just have to learn a whole new way to cook, shop and order food at restaurants. We feel it will be best if our house is gluten-free even if the baby is the only one who needs it that way he has one place in the world that's safe and comfortable. Is tath okay? Will my other kids feel put upon by thier brother's new diet? Is gluten nutritionally important to non-celiacs?

I'm having a hard time taking it one step at a time. Every question leeds to more. Every fear opens the door to another.


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laurelfla Enthusiast

first of all, you have come to the right place! and props to you for getting to the bottom of what is going on with your son. i'd suggest reading all you can here and on other celiac websites to gather all the info you can while you wait for the results to come back.

no, gluten is not necessary for non-Celiacs, and Dr. Peter Green (Celiac expert) says that no one actually digests wheat that well, that humans were never meant to eat such large quantities of grains as we do. so they won't miss out on anything healthwise. if they complain or seem to not be happy with what you decide, you can always remind them they can have gluten outside the house. (i'd kill for that option!) ;)

it is completely normal to be totally overwhelmed by the lifestyle change that you might be about to take on. there are so many questions and so many things to remember. i'll be thinking about you all and praying for speedy results!

Disney323 Apprentice

Hi Bohomama,

I'm in a similar situation. My son is 17 months and was diagnosed via bloodtest that he could possibly have Celiac Disease. My husband and I were both quite upset and didn't feel it could be as he's shown no symptoms that I thought would relate to Celiac. He is Failure to Thrive (19 lbs. at 17 months) and doesn't eat much at all. He had a biopsy (which will be the next step for you if the test comes back positive). We are awaiting results but the Dr. feels it's Celiac because he has bumps in his intestine. Meanwhile, I've startd him on Gluten Free (he couldn't be Gluten Free until the biopsy was performed) and he hasnt' shown any changes yet. It's only been a week though. I wish you the best of luck. This is a great website to come to. I am still learning and am very overwhelmed too. Take Care.

~Andrea

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      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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