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Still Sick After Not Eating Gluten


MamaO

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MamaO Newbie

Can anyone give me suggestions. My daughter is still getting sick and we are trying our very hardest to be gluten free, and as far as I know we are.

Any suggestions would be greatly appreciated. I'm desperate to get her feeling better!


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Aleshia Contributor

Can anyone give me suggestions. My daughter is still getting sick and we are trying our very hardest to be gluten free, and as far as I know we are.

Any suggestions would be greatly appreciated. I'm desperate to get her feeling better!

how long have you been gluten-free? did you replace your toaster and any nonstick cookware, wooden spoons, pasta strainers etc.? have you checked labels for hidden gluten such as malt flavoring, caramel coloring etc?

some others on here will have some good advice I'm sure :)

dilettantesteph Collaborator

You might want to eliminate gluten free foods that are processed in a facility that also processes wheat. Those are usually contaminated with small amounts of gluten.

rinne Apprentice

I'm sorry to hear that your daughter isn't seeing any improvement. :(

If you could provide more information it would be helpful in making suggestions. :)

How long has she been sick?

How old is she?

Is she on any medications?

How was she diagnosed?

What is her diet?

Does anyone else in your family have digestion issues or fibro, diabetes, arthritis? Basically any other auto-immune disorder.

And welcome. :)

Can anyone give me suggestions. My daughter is still getting sick and we are trying our very hardest to be gluten free, and as far as I know we are.

Any suggestions would be greatly appreciated. I'm desperate to get her feeling better!

MamaO Newbie
I'm sorry to hear that your daughter isn't seeing any improvement. :(

If you could provide more information it would be helpful in making suggestions. :)

How long has she been sick?

How old is she?

Is she on any medications?

How was she diagnosed?

What is her diet?

Does anyone else in your family have digestion issues or fibro, diabetes, arthritis? Basically any other auto-immune disorder.

And welcome. :)

rinne Apprentice

Hi, I'm not sure if that means you don't want to answer or if the post just messed up, it's fine if you don't, maybe I am just too nosy. :)

ang1e0251 Contributor

A little more info could help us to give you any guidence we might have. What is her diet like, med's she takes, is she in a school or play group? Sometimes it's tough to pinpoint hidden gluten but talking it over sometimes brings to light the culprit. Is she dairy free too?


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    • captaincrab55
      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
      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
      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
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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