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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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