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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I'm sorry you are still feeling so poorly. My recovery pattern was similar to yours: I started feeling better after a few weeks gluten-free, felt quite well at 2 months gluten-free, and then went downhill from months 3-6 in my fatigue, hair loss, and arthritis (GI wasn't worse by much). After the 6th month I started to improve, and then once I finally...
  2. nvsmom

    ARCHIVED Dry Scalp

    nvsmom replied to shendler's topic in Related Issues & Disorders

    You could try using no shampoo (or no "poo"). There's a discussion on it in another topic: https://www.celiac.com/forums/topic/104310-no-shampoo/ It could be dh bothering you. Do you have a rash with the itch? I know dh is crazy itchy - could be it if it pops up while eating gluten. Best wishes.
  3. nvsmom
    I was going to chime in on withdrawal too. I remember being so tired, cranky, and having a major headache for almost a couple of weeks. Withdrawal usually only lasts a couple of weeks at most, so hang in there.
  4. nvsmom
    Withdrawal is not fun. I found a post from 2012 when I first went gluten-free - I had a migraine that lasted almost 2 weeks. It was nasty. Extreme fatigue and moodiness was also part of my deal. Others will experience GI symptoms. It can really vary. On the bright side, withdrawal usually last a few days to three weeks - hopefully it won't last long...
  5. nvsmom
    That is a great improvement.
  6. nvsmom
    I'm not sure if gluten ataxia occurs with NCGI (non-celiac gluten Intolerance) the same way it does with celiac disease, and according to those tests you probably don't have celiac disease. I think it can occur but I don't know a lot. Below are a few things I found: Open Original Shared Link We know that peripheral neuropathy can be associated with...
  7. nvsmom
    There are members around here who have had brain lesions (I believe) that showed up as spots on an MRI which was caused by celiac disease. This is a discussion I found: https://www.celiac.com/forums/topic/100098-suspected-ms-can-it-just-be-celiac-please-help/?hl=%2Bbrain+%2Blesions They discuss gluten ataxia... I might be something to look into - I could...
  8. nvsmom
    The full celiac panel is: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA Total serum IgA AGA IgA and AGA IgG (older and less reliable tests) Make sure you are eating gluten until testing is done, Many celiacs are low in some nutrients such as calcium, iron, ferritin, potassium, zinc, A, D, B12, and copper. Bone density can be an issue and should...
  9. nvsmom
    Agreed. There are a few other people around here with positive blood work but negative biopsies. It's not as uncommon as you would think. As for going gluten-free, anyone can do it. There is nothing nutritionally needed in gluten. Nothing. Everyone in the world could stop eating wheat, barley and rye and not a single one would be ill because of it......
  10. nvsmom
    Yeah, those DGP tests are better - not perfect but better that tTG and EMA tests for kids. Your DS's tTG IgG was soooo close to being a positive... something is up there I think. The DGP might tell you more. If you can't get more testing, you might want to make all the kids gluten-free just to be safe and to simplify things in the home. I did that with...
  11. nvsmom
    Welcome to the board. The DGP IgA is a really good test for detecting celiac disease. If you had a positive test, and feel better on the gluten-free diet, then I would say it is pretty much a sure thing that you have celiac disease. You don't need a positive tTG IgA to have celiac disease, nor do all celiacs have positive biopsies. That new doctor sounds...
  12. nvsmom
    BioSil is a good one too.
  13. nvsmom
    PoPT is a good name. I think your drive to understand "why" will help you get better faster than most others. Actively researching and not just trusting in others can only help.... Okay, it can frustrate the researcher, but overall it's a good thing. LOL
  14. nvsmom
    I too thought I had Lupus, but it was lingering celiac disease symptoms and thyroiditis... at least that's what the rheumy says, and I have been better while gluten-free - mostly. Symptoms like joint pain, nerve problems and cognitive issues tend to be some of the slower symptoms to improve, so if you go gluten-free again, don't be surprised if symptoms linger...
  15. nvsmom
    (hugs) It's hard when your babies aren't well. You daughter did not have the proper celiac tests done.The serum (blood) IgA and IgG tests are like control tests for different parents of the immune system in the body. The total serum IgA is often run for celiac testing because a high proportion (1/20) of celiacs are deficient in IgA, compared to the...
  16. nvsmom
    Understandable. I have three boys who are gluten-free but don't have a diagnosis. It's tricky to keep them healthy when around others who don't understand the disease... Actually it's tricky to keep them gluten-free whether other people know about celiac disease or not. It is all on us, but it will get smoother and easier. Hang in there. Someone else...
  17. nvsmom
    Oh gee, I know you were hoping for a more definite result. I've never heard anything about gluten sensitivity genes either. You could be in that minority of celiacs who do not have the DQ2 or DQ8 genes. I read (in Dangerous Grains I believe) that 90 and 94% of celiacs have the DQ2 and DQ8 genes respectively. There are a couple of people around here...
  18. nvsmom
    Your symptoms do fit with celiac disease, and possibly with hypothyroidism too (cold, tingling and rashes). While gluten-free, you feel better, are healthy enough to conceive, but when you eat gluten you become unwell, lose weight and have lactose intolerance... With a family history of celiac disease, I would guess celiac disease. And low B12 is not...
  19. nvsmom
    With positive tTG tests and a positive EMA titre, it is basically a sure thing that he has celiac disease. Even if the doctors find no damage at all (which can happen), I think your son should be on the gluten-free diet for life. I also had the same positive tests but my titre was not as high, his is really very high for a child, and my doctor and I were...
  20. nvsmom
    I thought fibromyalgia was linked to celiac disease... I know it's linked to thyroiditis which can cause brain fog and a lower body temperature. That might be something to check for yourself too.
  21. nvsmom
    I'm another whose TPO Ab levels don't seem to have a strong correlation to being gluten-free. Before going gluten-free my TPO Ab was 33 something with a range that goes from 0-34; my TSH was in the teens and my free T3 was in the bottom of the normal range. After being gluten-free for a year, my TPO Ab was somewhere around a 24 I think. Because my TPO Ab...
  22. nvsmom
    Ditto everything Bartfull said. I just want to add a couple of things: Keep a symptom/food journal and keep track of how you feel compared to now. Going gluten-free will help if you have celiac disease or non-celiac gluten sensitivity (NCGS) but improvements take time and its not uncommon to backslide sometime in the first few months even if your diet...
  23. nvsmom
    If you were eating gluten from October to Jan 1st, stopped for a week, and have now resumed, I would guess that you have enough gluten exposure if your test is in another week. It's just a guess though. If you want to be more sure of the test validity, you should probably put off your blood test until the 22nd or later. Some people's antibody levels...
  24. nvsmom
    The first time I experienced a joint pain flare-up I had swelling, heat and redness. It scared me to death. i went from normal to not being able to use scissors within a week. I remember the relief when it finally passed a month later... Ever since then, I do not get swelling or redness, and if I do it's very very minor. The pain is often the same and...
  25. nvsmom
    LOL It does sound quite dramatic! What is it with this polar vortex term? Isn't it just a cold front? Arctic air coming down from the north... Anyway, it works for me - the cold air spun to the east so we are unseasonably warm right now; I think its 5C outside. It's a slushy mess. January is usually our coldest month but so far it's been much nicer...
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