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T burd

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by T burd

  1. T burd
    Oh yes. First thing you do on a ship is go ask food staff what you can eat. During your I was stern. ‘You cannot label that as gluten free!’ His response ‘you must ask the kitchen about everything’ I should have gone to customer service. It was the millennium. And a year ago. Maybe they fixed it?
  2. T burd
    I went on a celebrity cruise a bit over a year ago and they had a separate dessert table that always had one gluten-free dessert and then the ice cream and gelato were gluten-free. we always had crème brûlée for dessert option for dinner. and they had two other nights, where there were other options that they put together for us. They had regular udis to...
  3. T burd
    Marie, did they test your ttg iga and ttg igg ever??? Are you eating 100% gluten free with no cross contact?
  4. T burd
    You should look into keto desserts. Find recipes for them or somebody that makes keto treats. They don’t have sugar in them and sometimes they are good.
  5. T burd
    Keto items do not have sugar. Not sure about salt.
  6. T burd
    Lots of good replies. Just adding You may want to get allergy testing as well. It takes time to heal. Take probiotics. Don’t eat gluten free breads for a while, just go to naturally gluten free fresh foods.
  7. T burd
    Guess what? I was 38 before I self diagnosed and then went to the doctor and the doctor said “well the thing about Internet diagnosis is you may have all those symptoms but that doesn’t mean it’s what it is. Do you still want to get tested?” Then my blood test was off the charts. My biopsy in my duodenal bulb was positive, but my duodenum biopsy was neg...
  8. T burd
    Yeast extract may have barley gluten.
  9. T burd
    A reminder we cannot live in a house that uses flour.
  10. T burd
    I get sick if I smell the smell of cigarettes on people. Perfumes in some soaps also. Do you guys take daily probiotics? I was more sensitive before I did that.
  11. T burd
    If I were you I would insist that you be seen sooner by a gastroenterologist. Maybe you can call around and find one that has an opening. you sound like a classic celiac to me. Does take months of being off gluten to feel better, though you likely will notice right away, and a few months of eating it before your biopsy.
  12. T burd
    I don’t think that’s necessarily true… https://clpmag.com/disease-states/allergy-autoimmune/saliva-test-developed-for-diagnosing-celiac-disease/
  13. T burd
    My G.I. mentioned refractory or non responsive celiac to me… I hope that isn’t an issue here. Check lotions and face creams and make up, lip gloss, shampoos, soaps, and the new one I just found would be cleaning soaps that spray… I almost threw up after spraying my shower with scrubbing bubbles total bathroom. https://connect.mayoclinic.org/blog/gastr...
  14. T burd
    have you not had gluten-free cinnamon raisin bread? I know Trader Joe’s used to have it, but hear they don’t now. canyon bake house (I had in UT, but not FL) little northern bake house has it at sprouts. But there is another brand online… are you in Europe?
  15. T burd
    I did go to a rheumatologist that said that no labs were showing enough to have any diagnosis. Then I moved and went to a new rheumatologist and he found the anti-histone antibody, and put me on the HCQ which did more damage than good. My heart was damaged. he had to give me prednisone in order to come off of it. After just 2 methotrexate pills I decided...
  16. T burd
    I am pretty sure it’s too late for them not to be permanently damaged. My shoulders grind and pop so much, just from my normal swing when I walk. And I keep injuring them. No doctor has ever recommended I go to a joint specialist…
  17. T burd
    She did check my thiamine levels this summer and they were in range 97 reference range 66 to 200. all things I have positive: ANA IgG ANA by HEp-2 positive dense fine speckled Abs. CD8-CD57+lymphs was low 54 (ref range 60-360) lyme disease C6 peptide by ELISA was positive 1.24 (with <.9 as neg.) anti-cardiolipin IgG positive...
  18. T burd
    I freak out on flour/ baking aisle sometimes. I wish regular four was bagged in a plastic package. There have been MANY times flour bags have broken and it flies in the air. Particles are fine and land all over the store as dust. And I see it all over the ground. When I was first diagnosed and my husband was cooking Mac n cheese, before my whole house went...
  19. T burd
    Did they do a full celiac panel or just Ttg iga? When I got my ttg iga the reference range was 1-3, and mine was 109… you are within range, so they would not diagnose you with that. After gluten free for 3 months my test showed 5, so slight positive. I had not really eliminated all gluten as I thought I had. having a negative ttg iga doesn’t mea...
  20. T burd
    I was almost feeling all better after celiac diagnosis at 38. Only slight joint pain compared to now. The HCQ helped while on it, but made it worse after. And the heart flutter means I cannot be on That. If it is lyme and confections the anti parasitic properties could have been why it was working. It isn’t typical lupus. I’m just not totally convinced eit...
  21. T burd
    Right now I’m not on anything for the lupus. I had been on HCQ for 10 months. I’m pretty sure it permanently damaged my heart but only very slightly. I started getting weird heart palpitations while I was on it that didn’t go away after stopping. my joints started flaring up and have been bad since I got off of it 1.5 years ago. I have a fun...
  22. T burd
    I was lactose intolerant when I was eating gluten. It damages your system for days or weeks or months so any kind of food can cause those symptoms until you heal if it is celiac. Hope you get all your testing soon so you can figure it out.
  23. T burd
    With you saying you throw up that brings me immediately to think celiac because I don’t think the other conditions cause you to vomit. I don’t know very much about them though. And yes I think Trents has the list of tests you need to tell your doctor to run for you. My sister went to a gastroenterologist last year who is supposed to be an expert at diagnosing cel...
  24. T burd
    It sounds like you have a bad case of celiac. I’m sure somebody else will chime in but I don’t think they gave you all the test if that was your only test. Did they give you any other labs?
  25. T burd
    This is helping me. I have celiac. I likely had it my whole life but didn’t get diagnosed until I was 38 when I started feeling more ill. Two years In A doctor figured I had lupus, with high ANA and anti-histone antibodies. Chronic fatigue. Pins needles sometimes, I have a rash on jaw near thyroid and have frequently had the rash on lower neck in scalp, ...
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