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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I don't know if that is entirely true. Some celiacs do not become super sick (bad symptoms) from celiac disease, yet some with NCGS may get life altering symptoms (like ataxia, neuropathies, arthritis). As far as I can tell, the main difference between those with NCGS and celiac disease is the intestinal damage. Yes the intestinal damage is not good but...
  2. nvsmom
    I skipped my biopsy for that reason. I had a positive ttG IgA and EMA IgA, many symptoms, and relatives with celiac disease. I felt certain I had celiac disease (and so did my doctor) so I skipped the biopsy. I felt that I could always do it at a later date, while gluten-free, if I continued to have problems and they needed to take a look to see what was...
  3. nvsmom
    Hard cheeses are usually okay for those with lactose intolerance but some find it bets to give it all up for a time. I gave up all dairy for close to a year and now can eat hard cheese. (Yeah!) Yogurt could be hard on you though. Remember, 8 weeks is still really early in your recovery, although it may feel like forever. At 2 months gluten-free...
  4. nvsmom
    Your doctor is wrong. The sensitivity of the biopsy can be as low as 80% which means up to 20% of celiacs will have a false negative result. The risks of getting a false negative are higher (closer to 20%) if the doctors take 4 or fewer samples (6+ is best), only sample from a small location rather than sampling widely and from the most commonly damaged...
  5. nvsmom
    I hardly ever do. Maybe once per year.
  6. nvsmom
    Some people recover to normal within weeks and others take months. I had a lot of constipation and hardness (but on the left where my colon is) that did not improve until I was 9 months gluten-free and my hypothyroidism was being treated better. I'm not sure if it was that I was gluten-free longer enough of not being hypothyroid that helped stop the C....
  7. nvsmom
    Beer used to get me badly too. Barley is evil.....
  8. nvsmom
    I agree. Get the test done some time in the future if you wish but it isn't needed - you already have a diagnosis of NCGS. Don't discount the seriousness of NCGS though. Those with NCGS can have the same symptoms as a celiac, just without the dh skin rash or villious atrophy. They can have ataxia, arthritis, GI problems, neuropathies, migraines, fatigue...
  9. nvsmom
    Do you think duct tape would do the trick? I haven't made an appointment yet. Probably in about a week or so.
  10. nvsmom
    I can't do much dairy either, but I'm sorry you are losing dairy again for a while. Hopefully it will be okay again soon - ice cream season is upon us. Someone I know actually found me a gluten-free ice cream with gluten-free cookies in it. Mmmm. I almost cried. LOL And then I promptly forgot the brand - maybe I will cry now.
  11. nvsmom
    Unfortunately aclcs322 has not posted for over a year and is not active on the board. Perhaps try starting your own topic and you'll find more advice. Generally speaking, it is pretty common for a celiac to be negative in some tests but not others. I don't think your situation is that uncommon.
  12. nvsmom
    I know! We joke about the full body transplant quite frequently. I would love to trade this body in for a younger model... about 30 lbs lighter.
  13. nvsmom
    They checked me pretty thoroughly for RA and lupus about 2 years ago. Everything was nice and negative, even my ANA. I think I'm too young for OA too! LOL I saw a doctor about my hips and it definitely was OA. I saw a doctor about a week ago. I am getting some blood tests done, and had an X-ray for my knees. The doctor already called...
  14. nvsmom
    Thanks. You're a sweetheart. I wish I knew if it was AI linked too. My hip looks like OA but it's odd how it came on so fast, or I'm much wimpier than I thought I was... I don't think so though. It could be Hashi's doing it, but I've never had spikes in my TPO Ab or big flares of thyroid changes. It just seemed to slowly stop working. ...
  15. nvsmom
    I (accidentally) drank a "gluten removed" Daura beer that was gluten-free to 6ppm. After that, I will never try another product started from barley even if it is supposedly safe. I would wait and let others be the guinea pigs for a year or so and then reconsider it based on their experiences.
  16. nvsmom
    Yep. A positive EMA IgA would likely say 1:80 (this is sometimes a negative for some labs), 1:160, or 1:320. Your little one likely has celiac disease. The tTG IgA is about 95% specific to celiac disease. The 5% of false posotives are caused by colitis, crohn's, diabetes, thyroiditis, chronic liver disease, or a very serious infection. If she is having...
  17. nvsmom
    Are you constipated? I feel like that (minus the nausea but I am rarely nauseated) when I have C.
  18. nvsmom
    I had arthralgias for about 15 years when I was an undiagnosed celiac. It was caused by celiac disease. It would begin with fatigue, flu-like symptoms, mouth sores, and then my hands, wrists, shoulders and elbows (all symmetrical) would get very sore to move, and weak. Holding books hurt, brushing teeth was tricky, and getting my arm up to blow dry my hair...
  19. nvsmom
    If I go to an ice cream parlor, I insist on a new tub of ice cream and a new scoop, then I thank them profusely and tip well. We usually just buy a carton of ice cream from the grocer's and bring it home... I cheap out.
  20. nvsmom
    Oh yeah... withdrawal can be horrible. Three years later I can still remember that headache and how tired and miserable I felt. Mine lasted about 10 days. You should be recovering from withdrawal before July hits. Some celiacs find L-glutamine helps with sppeding up intestinal healing, and probiotics work well for others. Most celiacs find that keeping...
  21. nvsmom
    Bring some snacks along too. Lara bars and the like are nice to have in your bag if you are out and about and miss a meal. Everyone reacts differently. Some silent celiacs keep their silent symptoms only, and they need to be EXTRA careful because their bodies won't tell them when they have been exposed. Others find that the symptoms of being glutened...
  22. nvsmom
    I'm okay. Having some issues with arthritis, not my old celiac-caused type of arthritis, which is slowing me down, but overall I'm fine. Dr google is a good friend to people like you who have had doctors fail us so badly. At least you are going into this appointment well prepared and know what to ask about. You're ahead of the game. Hopefully you are...
  23. nvsmom
    ((hugs)) It's true, we often misdiagnose ourselves when we take responsibility for our own health. In the past 3 years, I thought I had lupus and acromegaly with a small brain tumor. Thankfully I was wrong, so I sort of understand your stress, to a lesser degree.... It's hard to wait. Not knowing is a scary thing. If you want to take some benign but...
  24. nvsmom
    I would guess that about half of our members developed celiac disease in their adulthood, and the other half developed it when they were young. It really can hit at any time.
  25. nvsmom
    It looks to me like you are most likely not a celiac, too. If you want to double check it, you could request the remaining celiac disease tests which are DGP IgA and DGP IgG (deaminated gliadin peptides), and tTG IgG (tissue transglutaminase). You already had the anti-gliadin antibodies (AGA IgA and AGA IgG) tests done, but they are not very sensitive and...
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