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Newly Diagnosed Daughter

LeeV

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LeeV Apprentice
LeeV
Posted

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
gf4life
Posted

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
LeeV
Posted
  • Author

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
Kim
Posted

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
celiacfreeman
Posted

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

LeeV Apprentice
LeeV
Posted
  • Author

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
lisa922
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
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      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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