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I Want My Mother To Get Tested


SweetAmber32

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SweetAmber32 Apprentice

Since learning that I am GI, I have been trying to learn as much as I can on on this illness, reading about others symptoms and symptoms listed in books, and throughout the internet. I now feel that my Mother needs to be tested. She is a Diabetic type 2 (found out a few months ago), has Diverticulosis, osteoporosis, arthritis, she just had eye surgery to remove cataracts from both eyes and the eye Doc informed her that she has the beginnings of Glycoma, Macular Degeneration. But this issues are not all of what makes me believe she needs to be tested. My family moved to Oregon two years ago this month. Within of 3-5 weeks of being here, she was rushed to the hospital. She nearly died. Apparantly before we left Virginia, my mother had started a MAJOR infection. She develped thrush, had TIA's (mini-strokes), balance problems, memory problems, and excessive weight loss. This was all thought to be from her mini-strokes and just her not eating (with the weight loss). And to be blunt she was, on the trip to Oregon, quite "Evil" in additude and behavior. Since my dad drove the moving truck I drove Mother. What a nightmare. In Idaho, I had wanted to throw her out of the car, over a bridge into a huge gorge. :P When she entered the hospital, we learned why she had changed so much. Her right lung collasped, her kidney and liver on the right shut down and her whole chest cavity including abdomen was filled with puss. She had numerous speicalists. No one could discover the problem. They thought it all may have been contributed to her diverticulosis. But tests showed nothing. And only one petri dish only grew an anerobe. Luckily she survived and her two organs started working again. She took a long time to heal, seemingly, physically. But now with the recent diagnosis of Diabetes, Doctors think may have come from her illness. But through this all, now, she can stuff her face, and no weight is put on. She's actually lost weight. She looks like someone, and I'm not making light, from a concentration camp. She is emaciated. She does not feel good ( she does do blood sugar checks, 2x a day), she hurts all over. Her balance is bad. She is exausted. Plus she suffers from depression (this runs in the family). She suffers from contipation. She has a lot of other problems, the list could go on. And she is seeing her kidney Doc and her GP this month and she wants me to go in with her to discuss Celiac Disease. She believes there should be no problems with their agreeing with testing. Especially with me as GI and I believe even two of my other sisters are either Celiac or GI. Has anyone ever heard of infections like my mothers, that nearly killed her, in those with Celiac? Thanks for listening to me. :)


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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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