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T.H.

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Everything posted by T.H.

  1. T.H.
    I'm sitting here wondering if it's just me or if anyone else is questioning the way doctors are dealing with refractory celiac disease. For example, take a look at this article, on a 'study suggest[ing] that more patients with celiac disease may stop responding to their gluten-free diets' Open Original Shared Link The doctor quoted in the article...
  2. T.H.
    A very sensitive celiac I know buys her nuts on-line from either anuts.com or nutsonline.com I have yet to try these, and I believe they are unshelled (?), but she seems to have success with these ones.
  3. T.H.
    Oh yeah - my whole family is the same way. There are four confirmed celiacs in my family, and we've all had reactions grow worse after going gluten free, sometimes significantly so. My daughter didn't even HAVE noticeable symptoms - just chronic fatigue type of things. Now, 1 year gluten-free, if she gets gluten, she has extremely painful stomach aches, her...
  4. T.H.
    count me in as another constipation sufferer from gluten. I had no idea they were related until I went off gluten and the constipation went away. Honestly, if the tests come back negative? I'd give a gluten free diet a try for a few weeks, just to see, because some can have an intolerance without it being celiac disease, from what I hear.
  5. T.H.
    Well, there's I think a 20% false negative for the celiac disease tests? If she improved going gluten free, then I'm with you - stay on this until the baby is born. Because tests don't tell us everything, sadly. And if she's wrong, the baby AND her can suffer for it. Many people do not have any symptoms that hit directly after eating gluten. Some get...
  6. T.H.
    I think I would decide the exact same thing. Frankly, doctors asking us to do something to our kids that we can tell is making them sick, just so they can test for the damage, feels like them wanting to cut the skin to make sure our kids our bleeding right. The whole 'do no harm' theory seems to have been chucked out the window, these days. One...
  7. T.H.

    ARCHIVED Sick Of Being Ignored

    T.H. replied to SGWhiskers's topic in Doctors

    So sorry the doc isn't listening to you. I feel like we ran into this so often before being diagnosed with celiac disease it was frustrating as heck, and when you run into it afterward - even more so! I'd say the thyroid and hashimoto's that were mentioned previously are good possibilities, especially with the malaise and fatigue. And one other...
  8. T.H.
    big virtual hug - been there, done that, and cried about it. I think you're absolutely right: getting hungry when we're out, and don't have safe snacks on hand, so often leads to disaster. And then when you're still hungry and can't eat, or you eat and get sick, it's just that much worse. We all need a good cry sometimes, anyway, huh?
  9. T.H.
    So sorry it's been difficult lately! I'm a mother of 2, husband is gone frequently (now gone for much longer periods),and things kind of went crazy, down the toilet yuck when I was diagnosed, too. Very hard at first. So...what helped me? I'm sure this wouldn't help everyone, but if anything resonates, hopefully it might provide some relief? Oh,...
  10. T.H.

    ARCHIVED Glue

    T.H. replied to polarbearscooby's topic in Coping with Celiac Disease

    I don't believe it's a celiac thing - wouldn't swear to that, though - but I do know many people who have this issue of reacting to the adhesive. The suggestions I've heard are 1: there is some type of adhesive remover that was good for getting the stuff off if you got a bandaid on, that helped prevent a worse reaction. Can't recall what it is, but...
  11. T.H.
    For myself, I bring my food with me, or scope out places I can get gluten-free food at stores near where I will be travelling. At hotels, you can often get a fridge and/or microwave for free in the room if you note that it is for a medically restricted diet. Or they will often let you store your food in a fridge of theirs. For cooking, if you stay in places...
  12. T.H.
    My entire family (4 celiacs altogether) had our reactions and sensitivity increase, but not all to the same extent. Some increase significantly, some just a little bit, but we all have more reactions now than we used to. :-(
  13. T.H.
    Huh - I honestly don't know if the reaction of D is too immediate. I know that I will get reactions that quickly, or more so, but not the D. Any D, on the rare occasion I get it, is always a bit later. Everyone's different, of course, that's just my own experience. But with no joint pain or rash - and that's normally what you get, yes? - I'd wonder...
  14. T.H.
    We coslept, too, so the midget just slept in our room. HOWEVER...my daughter is 12 now. She has always been very, well, nervy about sleeping, I guess I'd call it. Both when she was small and with us, and when she was older and slept on her own, she woke frequently, wanting to be reassured that everything was all right, mama was still around, things...
  15. T.H.
    My daughter and son both seem to have memory issues and learning difficulty when they get gluten. From our recent experience, I would say that gluten could very easily still be getting your daughter, sadly. My daughter didn't have symptoms that were recognizable at first (she was tested because I came back positive). When she started to develop symptoms to...
  16. T.H.
    I was diagnosed last year, and last Thanksgiving was my first major holiday (I didn't count Halloween, LOL) after going gluten-free. It was hard, I'll admit. I felt left out at times, both because I couldn't eat the same foods, and also because I missed out on some of the little things, like the 'post-thanksgiving leftovers' meals where everyone got...
  17. T.H.
    Me too. The shaving cream he used, the lotions he used, the shampoo he used, the lubrication we might have used that got on our hands and...uh...such ...well, the list went on and on about what he used on his skin or hair - or what he ate or put in his mouth - that got me but good. It's pretty sad, but we have to plan it out now, with him cleaning...
  18. T.H.

    ARCHIVED Bowel Issues

    T.H. replied to willabec's topic in Related Issues & Disorders

    I think that many of us have other issues on top of the celiac disease, but I also think it's not always safe to assume it's not CC unless one has completely eliminated gluten from the diet. For myself, I was the other way around. I kept blaming other foods for my problems and it was actually CC. My diet dropped to nearly nothing - and I didn't react with...
  19. T.H.
    OH heck yeah - that does it for me. If I've been glutened a few days in a row, I start to get HUGE angry bursts where I'm just angry all the time. My son does the same thing. My daughter does nearly the same thing, but with anxiety and crying. We are not a fun bunch of people to be around when all three of us get glutened at the same time, LOL.
  20. T.H.
    Yeah, since the company was bought by Clorox, they aren't so great on the gluten free status. They don't have any information available unless you contact them, anymore. Now they say this on their site: >>I am gluten-restricted and am interested in gluten free products. What products are appropriate for my use? Please contact us directly...
  21. T.H.
    Okay, hope this will help! 1. Vastly different reactions for everyone, sadly. Or at least it CAN be. The reactions can be all over the place, sigh. The problems myself or my daughter have had would be the following (and I know others who have had different ones, too): Headaches, tummy pain, constipation, brain fuzziness, low frustration tolerance, insomnia...
  22. T.H.
    re: GH and celiac disease, celiac.com had some research they'd mentioned on this topic a while back - there's a link to it here: GH deficiency I can't recall all the details, but I thought that they HAD found a link. I could be wrong - but it's all there. So sorry it's so hard! We're in a similar spot. We had 4 family members diagnosed positive...
  23. T.H.
    Well, tips, based on either what I did for mine and my kids, and what I had to go back and do differently the second time. 1. Jot down brand names/farms, even for produce. When you are re-introducing, I would try the process twice, with more than one brand, in case there is a soap or other contamination that one company has that the other lacks. 2...
  24. T.H.
    Far as I can tell from what I've read, the problem is that individuals don't all produce the same amount of antibodies, or always react the same way. Because while it may take a while for antibodies to clear from the system, that applies only for some people, who have lots of antibodies (if I'm remembering right). For some, especially if you don't produce...
  25. T.H.
    No problem. :-) It is really a minefield sometimes, isn't it? I remember the first time someone mentioned chapstick to me as an issue and I was like The craziness just never ends, sometimes.
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