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watata

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Everything posted by watata

  1. watata
    My D and B 12 are ok now. Back in March my D was 13. They started me on 50,000 units weekly. It was still only 28 in July so I am still on 50,000 now every 5 days. Now it is 38. B 12 is good. I am tired, but I don't sleep at all. I can't even sleep with ambient. It's annoying.
  2. watata
    Blood test said weak positive in comments. Test: IgA,Tissue Transglutaminase Ab, S right at 4 (less than 4 normal range per reference on sheet) Now 6 weeks later redone at 1.8 normal range. IgG,Tissue Transglutaminase Ab,S 6.3 (less than 6 normal range) now 3.1 6 weeks gluten free. They just did TPO antibodies and 21 Hydroxylase AB and they are...
  3. watata
    That is exactly what it says. It was does done at the Mayo clinic. Don't know why there is no number after the second 5 . The doc says they can't be 100 % sure I have celiac. they say I can do a gluten challenge in a year and another biopsy. Uh No . I feel so much better gluten free why would I want to torture myself. No test is 100 % . What proof...
  4. watata
    Can Anyone interpret gene pairs? I was told I was positive for celiac gene pairs. Results are as follows. Was curious how to read the results exactly. Celiac gene pairs present? yes DQ alpha 1 : 05:01,05 DQ beta 1 : 02:01,02:01 "Comments: These genes are permissive for Celiac disease. (The absence of HLA Celiac "permissive" genes would...
  5. watata
    I am just as confused. I thought the same thing. Even the pathology report says that the damaged villi is most likely from celiac/sprue. So I really don't know. I'm as confused as all of you. I wish they would have just said you have it or you don't. I asked why they thought I didn't and he dodged the question over and over. Like I said I couldn...
  6. watata
    Yes I have been extremely strict on the diet. And yes think he is a pretty lazy doctor who just wanted to work 8 to 5 and not take call or work weekends. I could be wrong, but I am not impressed by him... not at all... not in the slightest.... but there are good and bad docs wherever you go. Hence why you cannot trust every one you meet no matter how...
  7. watata
    So I had my 6 week follow up appointment. They retested my TTG and my numbers are now within normal range. My GI still says I may not have Celiac. Even though the biopsy was positive and the TTG antibodies positive before going gluten free (now normal) and I do have the celiac gene pairs as well. Copied from result page Not sure how it is interpreted...
  8. watata
    Well I am so glad I listened to all of you and brought my own food. I ended up being in the hospital 9 days for a simple laparascopic ovary removal. I ended up having an adrenal crisis and being placed in the PICU for a while. I was sent home friday with a pulse of 47 BPM and in a steroid induced diabetic state. The insurance company pushed me out. The...
  9. watata
    Unfortunately I am all too familiar with hospitals as this is my 11th surgery. I had a minor procedure in July that was supposed to be an in and out in an hour and I was there for 5 days so my track record is not good for doing things quickly. My body does heal and respond just not quickly. I have a hard time with nausea, pain control and breathing post...
  10. watata
    What iodine thing?
  11. watata
    I'm having surgery tomorrow to remove my ovaries due to large complex cysts and other troubles. They said I could be in the hospital a few days. I have never been hospitalized since being diagnosed. Are hospitals pretty good at following gluten free diets and keeping cross contaminants away. I am horrible with nausea with anesthesia I definitely don't...
  12. watata
    I have been gluten-free now for two weeks. I have not eaten out but maybe twice and very particular with the waiter and off of a gluten free menu. Today my family went out for Labor day and I went to a place I had been before. They weren't busy, I ordered off the gluten free menu, but before I left the restaurant I was in the bathroom twice with D and...
  13. watata
    Thanks for your quick responses and encouragement! I will try going down to the basics and add things back in and see if that helps. Thanks!
  14. watata
    I know a lot of you here have the big D, but I have and have always had quite the opposite. I can go days, even weeks without going. I have had every test known to man and nothing is "physically" wrong. They say it is just the way I am wired and should improve now that I have been diagnosed. That some celiacs are constipated. I have only been gluten...
  15. watata
    I wanted to believe that Mayo would help me. I am hoping that their celiac theory is the answer as I really have no further follow up at the mayo clinic. They kind of said try this and see what happens. Follow up with your doc back home or call us. I felt rushed out the door when they had a possible answer. They were also more than happy to have my local...
  16. watata
    But after years of wrong diagnoses I thought that Mayo would be the place to go. Although I have little faith in any doctor after all I have been put through in my short little life.
  17. watata
    I just spent two weeks at mayo having every test in the book. Symptoms going in were severe nausea, bloating, pelvic pain, migraines, tachycardia, and nerve pain. Was sent by my endocrine for possible autonomic nerve disorder. I also have hypothyroidism, had an episode of secondary adrenal insufficiency, and interstitial cystitis. Well after being put...
  18. watata

    ARCHIVED Nausea!

    watata replied to watata's topic in Coping with Celiac Disease

    Yes I take promethazine 3 x a day and it just barely takes the edge off the nausea. Hoping this passes soon! Thanks for the responses.
  19. watata

    ARCHIVED Nausea!

    watata posted a topic in Coping with Celiac Disease

    I am just diagnosed a week ago. Have been gluten-free since then. I was hoping my nausea would get better. But in the last few days it has gotten worse. Anyone know if this gets better, or if anything else could be a culprit of nausea?
  20. watata
    I have heard that things can get worse before better. Almost like a "withdrawal" I have been gluten-free just about a week. I am having less bloating, but more cramping, and the nausea is just as bad if not worse. Just wondering if anyone else has had this experience. thanks!
  21. watata
    I was diagnosed by my cardiologist in March. My level was 13. Put on 50000 a week , after 4 months went up to 26 , moved up to 50000 every 5 days and now at 48. Diagnosed with Celiac 5 days ago. Vit B12 is low edge of normal, magnesium ok, they didn't test folic acid and iron is right at 12. was 8 last august. Crazy, but will keep an eye on it all.
  22. watata
    Thanks for all the advice! Your input is very appreciated! :)
  23. watata
    Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this? Thanks in advance!
  24. watata
    I spent 2 weeks at the Mayo clinic having every test imaginable. I had a biopsy that was positive and blood work that showed the gene connection and a weak positive on blood work. Have had gastro issues for years and worse the last 4 months. Constant nausea. They didn't really say this is what you have. Just met with the dietician who gave me loads of...
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