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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    LOL
  2. nvsmom
    LOL I went to s support group meeting once, and I think I was the average age - most were between 25 and 55. I think there was only one senior.... Of course then again, I said, "sorry to burst your bubble" to one of my boys the other day. About the only one there I haven't said is "peed in your Wheaties"... What does that mean anyways?! LOL I'm only 40...
  3. nvsmom
    (Hugs) It's tough when you are doing everything right but the world seems to be conspiring against you helping your daughter. These are things I looked into for my son, who fell down his growth curve: Did they check her growth hormone? The best lab for that is the IGF-1 as it shows an average (in a way) of the amount of growth hormone released...
  4. nvsmom
    Make sure they take 6-8 samples from various intestinal locations. I've heard many stories about doc who only take 2 or 3 samples, or even worse, doctors who skip the biopsies because they can't "see" any damage. Best wishes to her!
  5. nvsmom
    Your topic title made me think of the Pink song "learn to Love Again".... That's just screaming for a celiac parody of "Learn to Eat Again". LOL The best thing is to avoid prepackaged foods, like the others said. Make trail mix (nuts, dried fruit, seeds, chocolate), meat and potatoes or rice, eggs and bacon, any fruits and vegetables. If you can get...
  6. nvsmom
    Mmmmm, Arby's. I could go for a beef & cheese sandwich with those little seeds on the bun... Mmmmm. I have celiac disease, but bread, especially on an empty stomach, caused me a lot of pain and bloating. Beer was the bloat king for me. We have quite a few members around here with non-celiac gluten sensitity (NCGS). To be honest, I'm surprised...
  7. nvsmom
    Good luck. I hope you don't have to wait too long.
  8. nvsmom
    I'm very glad that it worked out for you!
  9. nvsmom
    Waiting for results and appointments is such a frustrating thing! Hurry up and wait - it drove me batty. The false positive causes of a (slightly)elevated tTG IgA is crohn's & colitis (both could have shown up on a scope), diabetes, chronic liver disease, thyroiditis, and a serious infection (stomach viruses and possibly Lyme - from what I have observed...
  10. nvsmom
    Oh sorry! I missed that. Oops. That does seem a bit weird that the tTG IgA suddenly drops to normal at a new lab. My guess is his body finally calmed down, or the autoimmune attack on his thyroid (I'm guessing he has Hashi's?) decreased. I know thyroid stuff can vary wildly for no real reason. I've seen my TSH vary by over 50% in just 2 weeks time....
  11. nvsmom
    Yuck. Well, the endoscopic biopsy misses up to 1 in 5 celiacs. You have a positive tTG IgA which has a false positive rate (weak positives) of only 5%, so I would be inclined to go with your tTG IgA test and assume that you are a celiac. The biopsy either missed the damage or you are a latent celiac, meaning that you have the positive auto-antibodies...
  12. nvsmom
    LOL it's a surprise when "normal" creeps up on us. Awesome.
  13. nvsmom
    I never had diarrhea either, only C. And as an adult, I am usually normal weight to overweight. I was tall for a child, and I have no real nutritional deficiencies... I did not really fit the mold either. Stomach aches at odd times came for me too. Sometimes there would be nothing, and at other times I cold barely stand up straight.. I used to carry a...
  14. nvsmom
    Going gluten-free helped my plantar fasciitis a great deal, and I have to admit that that one improvement really surprised me! LOL Glad you feel better.
  15. nvsmom
    If it is hives, it could be an allergy (IgE mediated) rather than a food sensitivity (IgA or IgG). Wheat allergies are a possibility although it is more rare than celiac disease. Perhaps try seeing an allergist to determine if it is actually an allergy (to milkd or wheat) that is causing the problem rather than a gluten or milk (lactose or casein) intolerance...
  16. nvsmom
    I would advise seeing your doctor about it and getting tested for celiac disease too. The doctor may have other ideas as to the cause - we're biased around here. LOL I have had extreme stomach aches that made me feel almost like I was going into shock: dizzy, faint, cold, clammy, etc. I never did see the doctor about it... it hasn't happened for a...
  17. nvsmom
    It happens. Some have a positive biopsy and negative blood tests, others have positive blood tests and a negative biopsy, others only have one positive blood test and the rest are negative. It's even possible to have celiac disease without the genes for celiac disease, although that scenario is rare unlike having conflicting blood tests. Most celiac...
  18. nvsmom
    The tests are fairly accurate with a sensitivity of 70-100% (the amount of celiacs each test catches), and the specificty is about the same. It is important to have a few tests run (or all) to give the disease a better chance of being caught. The tests to get are: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA total serum IgA AGA IgA and AGA IgG (older...
  19. nvsmom
    Welcome to the board. With three positive celiac disease tests, you really do not need a biopsy. Some doctors get stuck on that because they think you might be the 5% of people with a weakly positive tTG IgA (tissue transglutaminase) whose test result is caused by something else. Your result is... about 65 times above the normal range - it doesn't...
  20. nvsmom
    Beth was correct, they only ran about half of the tests... it's the norm for them to skip some. My doctor would only run one, and then the EMA IgA (anti-endomysial immunoglobulin A) if the first was positive. These tests are the most specific to celiac disease (meaning if you get a positive it is probably caused by celiac disease and not something...
  21. nvsmom
    With negative genes, it is very unlikely that you have celiac disease. I think 97% of celiacs have the DQ2 and/or DQ8 genes. It is possible to get celiac disease without those genes, but it doesn't happen much. The stool test is not a celiac test. Most mainstream doctors will question the validity of those stool tests. I have the opinion that it seems...
  22. nvsmom
    I agree that if her IgA and IgG are deficient, then the normal celiac tests won't work. Her only celiac testing option is the endoscopy biopsy, and that isn't perfect either - it can miss up to 1 in 5 celiacs. The breath test (SIBO) is often run for celiacs as it can produce the same symptoms. Good luck to her.
  23. nvsmom
    Thanks for the support. I'm not ready to throw in the towel, just a bit frustrated. It's like doing work at a job and only getting 3/4 of the pay you were expecting. LOL I've heard of that but I'm guessing it would be more effective to try food eliminations as needed; I don't know if I believe that everyone can be classified into 4 types of...
  24. nvsmom
    If you can, go gluten-free now. Eating gluten-free while travelling for 6 days will be a hassle but it is probably preferable to feeling sick in the car for 6 days. Plus you will probably travel in the future so setting the precedent now that eating gluten while on vacation/travelling is fine is probably not a good idea. She needs to be gluten-free, all...
  25. nvsmom
    If an immediate family member has celiac disease (you) then his chances of getting/having celiac disease are about 1 in 10 (the last stat I saw) and his chances decrease with it being a second degree relative (his Grandma) to around 1 in 30). I'm not positive of those numbers but I think that is what I have read. Celiac does run in families. If he has...
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