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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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    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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