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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Thanks for the positive thoughts. I actually did have all of my symptoms with dates, labs and treatments typed up on a two page time line, along with photocopied pages of old labs (ANA's, coombs test, blood counts, celiac and thyroid) for her. Unfortunately, she refused take or look at my time line, although she did look at the old labs... I think she...
  2. nvsmom
    Maybe they went to school together... I am discovering new sensitivities to foods, I'm trying to pinpoint what it is in my protein powder, which I add to all of my boys' baking that causes me issues now... A year ago, I really thought this celiac thing was going to be simpler. Thanks for the good wishes.
  3. nvsmom
    LOL You made me laugh, I DO need a cupcake. I am pretty fed up with the system. The only time a doctor has done anything for me in the past 20 years is when I have diagnosed myself, I tell the doctor what is wrong, the labs get run or the prescription is written and that's that. This time, the doctor doesn't think it matches up, and unfortunately with...
  4. nvsmom
    Thanks a bunch, Lisa. I have been keeping your story in my mind knowing that there was a good chance my rheumy visit would lead no where. I will keep plugging along and hopefully I will get to "healthy" sooner rather than later. It's that whole "patience" concept that I was hoping not to bother with. LOL
  5. nvsmom
    I was too nervous again. I swear I turn back into a little kid when I go to the doctor. I feel like I am being talked at, like I have no clue about my health issues, and not trusted. Sigh. It was a 15 minute appointment of "Your labs are fine. Your Xray is fine. You don't have RA." Yah, I knew all of that. She said it probably is some genetic ...
  6. nvsmom
    Someone else posted this link in another thread. It is an excellent read and has a lot of current info on celiac disease. On page 12 is a chart that shows how specific to celiac the EMA and tTG tests are. Specificity refers to the chance that a positive test result was caused by celiac. Sensitivity refers to the percentage of celiacs who would have a...
  7. nvsmom
    My kids also tested negative on the tTG IgA. Two out of three of them had some mild symptoms though (frequent BMs, some stomach aches, headaches, some behavioral issues, short stature in one son) and going gluten-free has helped. It wan't a dramatic improvement because they did not have dramatic symptoms. One son appears to have no gluten issues but he still...
  8. nvsmom
    I had no idea that gluten intolerances cause migraines until I went gluten-free. I used to have migraine 5-15 days a month. The type where moving your eyes or changing directions hurt your brain. I now only get a migraine a day or two a month. Celiac disease is in about 1% of the population. It is an autoimmune disorder that is exacerbated by gluten;...
  9. nvsmom
    I'm so sorry to hear that your son is feeling so poorly. It sounds like he has something autoimmune going on, and celiac would be a good fit with his growth, anemia, wbc count, loose BM's and enamel defects. I haven't heard much about the low fever in celiacs, but it is certainly common amoung other autoimmune disorders like the rheumatic diseasese or sometimes...
  10. nvsmom
    I think the EMAis over 95% specific to celiac disease. The tTG IgA is about the same (over 95%). The DGP is also really good. Here's a few sites discussing it (to show your doctor). Open Original Shared Link Open Original Shared Link Open Original Shared Link Good luck!
  11. nvsmom
    There is still the tTG IgA (doctors' most used test) and tTG IgG, the EMA IgA (very specific but not positive until there is extensive damage), and there are the old AGA IgA and AGA IgG tests. As far as I know, the DGP tests are one of the best ones for picking up early intestinal damage. You might be non-celiac gluten intolerant (NCGI) in which case...
  12. nvsmom
    Thanks ladies. I think I am ready, I have old labs copied and a timeline prepared... I shouldn't forget too much. LOL I agree that the celiac (and possibly hashi's) is a factor and probably bothered my body more. Sometimes I wish I could jump ahead 5 years and see how I'm doing so I know what paths to pursue now. My bp jumps a bunch too! When...
  13. nvsmom
    Well, I get my actual rheumy appointment tomorrow... I feel like I'm working through a job application process. After 20 years of symptoms and doctors not figuring it out, I finally compiled my old labs and symptoms, connected the dots and 8 months ago Iasked my doctor for a rheumy referral. He agreed and referred me to the rheumatology triage which I...
  14. nvsmom
    It's hard to wait for the results, isn't it? I remember having a hard time not thinking about it. Best wishes with the gluten-free diet. I hope you feel better quickly.
  15. nvsmom
    I've heard of a connection with thrush and leaky gut, which is sometimes a result of celiac disease. I have had repeated issues with yeast in the past (a few times a year). It is getting less frequent now. Antifungals and a diet very low in starches and sugars is definitely helpful.
  16. nvsmom
    Congratulations on beating the pancreatic cancer! Unfortunately, that is one of the cancers that tends to show up more often in celiacs than in the regular population. I'm glad you got a diagnosis and are eating gluten-free now. Celiac disease has a lot of symptoms and it varies from person to person: some people get neurological presentaions, it affects...
  17. nvsmom
    A negative biopsy in spite of positive blood work (and 2 out of 3 tests is quite positive) has happened to a few people around here. It's not common but it is far from rare. The surface area of your small intetine is roughly that of a tennis court so if the damage was patchy, or you are fairly new to the disease, the damage could have been missed. If...
  18. nvsmom
    As Karen said, keep eating gluten. celiacs will test negative in all blood tests after being gluten-free for enough time. Eat 1-4 servings of wheat, barley or rye a day. The most common tests are: (tissue transglutiminase) tTG IgA and tTG IgG (antiendomysial antibodies) EMA IgA (deaminated gliadin peptides) DGP IgA and DGP IgG total serum IgA (control...
  19. nvsmom
    I had a positive ttg IgA and a positive EMA too, and I chose not to bother with the endoscopic biopsy at that point. My tTG was rather high, and the questionable results (that could be caused by something else like an infection or Hashi's) are generally lower and closer to the normal range. The EMA test is highly specific to celiac (meaning very very few...
  20. nvsmom
    Your doctor hasn't heard of withdrawal. Often people feel worse for the first few weeks, not always but enough for it to be common. And not all symptoms resolve in the first few weeks. GI issues often heal first.Eventually that is often followed by migraines will improve and hair loss will slow. Neurological problems and pain are some of the last to go...
  21. nvsmom
    It doesn't get much more positive than three different positive tests along with evidence in a biopsy.... So he won't diagnose you with positive tests... how bizarre. Unless you need the diagnostic scrap of paper stating you are a celiac, I would just run with those positive test results and start gluten-free right away. For follow-up care, about the...
  22. nvsmom
    (((HUGS))) No, it made no sense. What a dolt. Good luck with the testing.
  23. nvsmom
    Scoliosis... Ouch. I hope someone else can give you good advice. Best wishes.
  24. nvsmom
    I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who...
  25. nvsmom
    I would just assume you have celiac, and when dealing with medical professionals with future health concerns, just tell them you have it and they will consider other avenues (autoimmune diseases) that they wouldn't otherwise. I say, continue doing so well on the gluten-free diet and don't make yourself sick in order to determine if you are a celiac or...
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