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My Update

whattodo

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whattodo Enthusiast
whattodo
Posted

Just an update,

I have just come back from the doctor and was very annoyed that the hospital are not doing as requested. I have been in for blood test for celiac disease and a biopsy in my stomach for helicobacter pylori. Everytime i go in the just run tests on other stuff even though i make sure before hand what they are testing for. Anyway, they now know that my duodenum has no folds. The doctor today says that it might still be celiac disease or even yet helicobacter pylori. He has now also thrown another thing into the pot, he says it could be gallstones that are making my gallbadder excreting too much bile. This could also result in the duodenum folds reducing. I am having a screen done for this.

Has anyone else heard of this before. I am really hoping that it is not celiac disease, but not sure i want to have my gallbladder removed. Even better id prefer helicobacter pylori.

Anyway, my doctor is personally pushing the hospital and hopefully i will be fixed soon.

Not being to premature but would like to thank everyone for their past help.

Thanks

Jay

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Guest Chrisbee
Guest Chrisbee
Posted
Just an update,

I have just come back from the doctor and was very annoyed that the hospital are not doing as requested. I have been in for blood test for celiac disease and a biopsy in my stomach for helicobacter pylori. Everytime i go in the just run tests on other stuff even though i make sure before hand what they are testing for. Anyway, they now know that my duodenum has no folds. The doctor today says that it might still be celiac disease or even yet helicobacter pylori. He has now also thrown another thing into the pot, he says it could be gallstones that are making my gallbadder excreting too much bile. This could also result in the duodenum folds reducing. I am having a screen done for this.

Has anyone else heard of this before. I am really hoping that it is not celiac disease, but not sure i want to have my gallbladder removed. Even better id prefer helicobacter pylori.

Anyway, my doctor is personally pushing the hospital and hopefully i will be fixed soon.

Not being to premature but would like to thank everyone for their past help.

Thanks

Jay

Hi Jay,

I don't know about the other two issues, but celiac can definitely cause the lack of folds. Here is a link to Columbia University's Celiac program for more information.

Open Original Shared Link

I hope they figure out which problem it actually is so you can feel better soon.

Christi

debmidge Rising Star
debmidge
Posted

You don't want the pylori bacteria either, the antibiotics for that are strong. I don't know what would be the best choice however...it just stinks when you don't feel well.

angel-jd1 Community Regular
angel-jd1
Posted

Jay-

So the doctor was mad at the hospital? That is good....right?

Have you been doing the gluten-free thing? How are you feeling with that?

-jessica :rolleyes:

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    • captaincrab55
      Finding gluten free ingredients

      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.
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      High DGP-A with normal IGA

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      By knitty kitty · Posted

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