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beachbel

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Everything posted by beachbel

  1. beachbel
    I am wondering how anyone else with really bad reactions is treated in case of gluten exposure. I was on vacation with my family and got a "gluten free" sandwich but the deli meat was not gluten free even though we asked. I was then vomiting for 2 1/2 hours, became delirious, had severe pain, dehydrated, asthma attack (I have asthma) and went into shock...
  2. beachbel
    Hi! I am wondering if anyone else out there is has refractory celiac disease. I have been diagnosed for 3 years with celiac and did not respond to diet (even when my only diet was from tube feeding). I am currently on tube feeding because of a major flare up. I would like to hear from anyone else and what they are being treated with. I am treated with...
  3. beachbel
    I don't know anything about your area but I used to get Domperidone online from a pharmacy in Canada. It was cheaper too. You might want to check into it. The pharmacy just has your dr email a prescription.
  4. beachbel
    It seems the refractory celiac dx is not an easy one to make, and my doc is still getting to the bottom of it. I have had a few endoscopes this year all showing the villous atrophy and inflammation. Along with that I have had worsening symptoms. I get really sick whenever I eat anything and a lot of pain, unrelated to the gastroparesis. I did get better...
  5. beachbel
    Hi! I too have gastroparesis and refractory celiac disease. It is a fun combo. I have been dealing with the gastroparesis for a couple of years now. Right now, I am getting botox injections about every three month to open the pyloric valve which allows the stomach to empty easier. It has really helped! I might consider a pyloriplasty in the future ...
  6. beachbel
    I would suggest a couple of things you might try. First, if it has been awhile you might want to see your GI about a blood test and possibly an endoscope to check up on your celiac disease since you are having so much absorption issues still. Another really common thing in celiac disease is hypothyroidism which makes you feel really tired. It just takes...
  7. beachbel
    I am hoping to hear from anyone else who has clinically diagnosed Refractory Celiac Disease to see what treatment has helped, or not helped you. I have Type I, Refractory celiac disease and I am being treated with steroid therapy. I am also considering an elemental diet, formula diet, since eating anything makes me sick. Anyone else out there with this...
  8. beachbel
    Hi trents, I have refractory sprue. I have had 8 endoscopes in the last two years (about every 3 months) because of the complications and trouble it gives me. I have been hospitalized for it as well. I am treated with Entocort - a steroid - to control my symptoms and calm my immune system down. I am meticulous about avoiding gluten. I never eat out...
  9. beachbel
    Thanks! It's nice to hear that the celiac might be the culprit. He has only been gluten free for a month and his appetite has dramatically improved. It will be interesting to see if his learning does also. Thanks for the replies.
  10. beachbel
    Thanks to all who have responded. I think we will have my son tested to make sure we are not missing something, but it seems this could be celiac related. Again thanks for the info.
  11. beachbel
    Hi! My son was diagnosed with celiac and lactose intolerance a month and a half ago. He is doing well on the diet. I am wondering if there is any connection between kids with celiac and learning disabilities. My son's teacher thinks he should be tested as he has difficulty retaining information. He does not seem to have any attention or behavior problems...
  12. beachbel
    Thanks for the feedback. We are definitely leaning towards putting my son on the gluten free diet. I guess it won't hurt whereas if I leave him on gluten it could cause damage. He prefers gluten free food anyhow.
  13. beachbel
    Hi. I'm looking for suggestions on my son's situation. He is seven years old and had a low positive blood test for celiac disease ( His Ab, IgA was 20 with a range of over 19 positive). I should mention that is IGA was low (50 with reference range of 51-259 normal) which the dr said can cause the Ab, IgA to be a false low too. So we had a endoscope biopsy...
  14. beachbel
    Hi, I know how you feel. I have been gluten free for almost 2 years and still test positive because I react to the tiniest cross contamination. I know other celiacs who don't have to be nearly as careful as I do. If you are getting that sick you might want to talk to your doctor. My GI put me on a mild steroid for a few months to calm my immune system...
  15. beachbel
    Sorry, I didn't mean to lead anyone to believe I am looking for a diagnosis. I am just trying to understand if the proper blood tests have been run as there has been confusion on that even with my doctor. I appreciate all the ideas everyone has given, as my doctor has even been looking for ideas too. I have had two dieticians look through everything I...
  16. beachbel
    Shayfl asked for my labs, here they are: My Tissue Transglutaminase AB, IgA was 22 (reference range above 20 is high), My IGA was 225 (reference range 68 - 378), My IgG was detected, My IgG Titer was<1:40 (reference range greater than 1:160 is significant positive). Yes, I am still having symptoms, mostly pain, but it is now much improved on Entocort...
  17. beachbel
    Oh I should also mention that I do have hypothyroidism and have been on med for it for about a month now. Any help in understanding my blood test results would be very appreciated. Thanks.
  18. beachbel
  19. beachbel
    I keep separate pots, pans, spoons, cutting boards, spreads, peanut butter etc. We do sometimes make cookies, but I am not in the kitchen while they are made or until everything is wiped down and all gluten-free dishes are in a cupboard, but maybe I will rethink using flour. Any other ideas? Thanks!
  20. beachbel
    Thanks very much. I did not realize that refractory sprue should test negative for antibodies, nor does my doctor. I will go through everything again and see if I can find a gluten source. I am wondering if the problem would be that I do share a kitchen with gluten eaters (my family). I keep separate dishes, wash them separately, keep separate appliances...
  21. beachbel
  22. beachbel
    Hi! I am looking for anyone who has refractory celiac disease or knows a doctor who might specialize in refractory disease. I have been gluten free for almost two years and my gluten tests are going up, not down. My biopsies continue to show celiac sprue, though not as bad as in the beginning. The doctor has me on a steroid to suppress my immune system...
  23. beachbel
    Thanks Lisa. I didn't realize the blood test is enough to be a positive diagnosis. I will talk to the dr about it. My son is getting a lot of tummy aches so I hate to have him on gluten longer than neccesary. Beachbel
  24. beachbel
    My thyroid also tested barely low, but luckily for me, my dr wanted me to start thyroid medication. The thyroxin has done wonders for me! I am much less tired. I should mention that there have been times that my thyroid tested normal, but my dr said that especially when hypothyroidism is caused by an autoimmune disease (like celiac) that it will go up...
  25. beachbel
    Hi! My kids were just tested for Celiac disease because I have it too. Two of my children tested positive on the Iga - the range was above 20 is considered high. My son who tested at 24 Iga the children's GI at the hospital wants to do a biopsy on to confirm Celiac. My other son tested at 20 Iga and since they consider that on the border, want him to...
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