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Newly Diagnosed Daughter


LeeV

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LeeV Apprentice

Hi, my daughter who is a type 1 diabetic w/hypothyroidism for 18 years was just diagnosed w/celiac disease last week. She is disabled w/mild cerebral palsy. I'm just learning about this disease and find it even more difficult than dealing w/diabetes. I bought a few products that are gluten-free and I'm trying to cook meals that are gluten-free too. She still has diarrhea, is that normal? Thanks for your help.

Lee


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gf4life Enthusiast

Hi Lee,

Welcome to the board! First I want to reassure you that yes, it is normal for her to still have diarrhea. It can take a while to heal and for the intestines to start absorbing properly again, and also she is probably not 100% gluten free yet. There is so much to learn in dealing with this disease and learning all the places where gluten can be lurking.

Don't beat yourself up for any mistakes that happen over the first few months. It can be a difficult life altering experience learning the ins and outs of a gluten free lifestyle and you will have to learn by mistakes. We have all been there and it can take a while to get used to it. Be thankful that your daughter has been diagnosed at a relatively young age and that although she has other health problems that cannot be "cured", at least this one can be fixed by a dietary change.

Feel free to ask any question you need answers to. There are many knowledgable and caring people here on this board and we all need to stick together for support. It might also help to find a local Celiac support group in your area (if there is any) and get hooked up with that. There is nothing quite like having other people you can get together with and share information face to face! :)

God bless,

Mariann

LeeV Apprentice

Dear Marianne,

Thank you so much for your words of encouragement and support. I'm going through a really tough time right now, I feel instead of getting better she's getting worse, is that possible? Yesterday was especially bad and I feel for her. I'm trying to eliminate milk, cheese, sour cream, etc. to see if that could be causing her to be worse. Trying to make simple meals w/o spices, using olive oil, fresh veggies, fruit and meat. Hoping today will be better. Thanks again.

God bless!

Lee :)

Kim Explorer

Hi Lee. I think it is wise for you to try to eliminate the dairy (for now) for 2 reasons: 1. in general, it's good to avoid dairy when someone has diarhea. (2) More importantly, the enzymes that we use to digest dairy are at the tips of the villi -- if your daughter's villi are damaged (which they likely are right now), it will be hard to digest dairy until they're healed. Healing times vary for everyone, but can be anywhere from 6 months to 2 years...

Having said that, I would agree with your instinct to make more "simple" meals that she may have an easier time with right now. Also, until you get the hang of the diet (label reading, etc.), it will help you avoid unintentional gluten ingestion.

Let us know if we can help. Also, the cooking part of this forum can have some good recipes/cooking ideas if you are interested.

Good luck. Kim.

celiacfreeman Contributor

there is a gluten free list on this board somewhere that make shopping a breeze.

LeeV Apprentice

Thanks everyone, it's been so helpful being on this board. She has gotten a bit better, one day good, another bad but definitely better. I took advice on buying a toaster just for her to eliminate cross-contamination, I bought some pots and pans too. I'm determined to get her on the road to recovery as fast as I can. Getting advice from all of you is better than a doctor since you all know first-hand about celiac disease. Bless you all and I'll be checking in daily for new advice and help.

Lee :)

lisa922 Apprentice

Lee -

I hope that your daughter starts improving very soon. This board has been great for me, too, and I wanted to let you know about another site as well. I hope I am writing the link correctly...let me know if you cannot get to it...it should be Open Original Shared Link

You have to sign up for it, but it is free. There is great support there also, as well as a lot of recipes and lists of gluten-free products. I just found out how to get to the product list today and it was wonderful to figure out what things I can use. Let me know if you try it and have trouble getting to the list and I will help you.

LISA in Wilkesboro


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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
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