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munkee41182

By munkee41182
in Coping with Celiac Disease

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munkee41182 Explorer
munkee41182
Posted

So since I'm such a frady cat with trying new things, and sometimes I just think the gluten-free stuff is so darned expensive, I usually don't end up buying anything other than what I know I like (usually just bread, pasta, and waffles). So once a quarter, my mother-in-law sends me a "care package." It contains all sorts of flours, baking mixes, pancakes mixes and pastas. My mother for christmas, also had gotten me a bag o goodies from whole foods. I seriously haven't bought any pasta since July! My grocery budget loves them as well!

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dandelionmom Enthusiast
dandelionmom
Posted

What a great gift! I'm going to have to remember that one!

ang1e0251 Contributor
ang1e0251
Posted

Thumbs up for your family! Their great. Isn't receiving a package at your door the best surprise?

*lee-lee* Enthusiast
*lee-lee*
Posted

that's so awesome! how lucky!

my mom called me out of the blue about a week before Christmas and asked what kind of pasta i eat and do i like coconut. turns out she was standing in the gluten free section of the grocery store and didn't know what to buy for me! it was a great surprise when i was opening my gifts.

one of my good friends was just diagnosed so for Christmas i put together a gluten-free gift basket for her: Rice Chex, Tinkyada pasta, Walmart brand spaghetti sauce, Lays Stax, Minute Rice, microwave popcorn and a t-shirt that says Wheat Sucks. she loved it!

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    • 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

      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.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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      High DGP-A with normal IGA

      By rei.b · Posted

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