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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I agree. Let your mom (and siblings) know that they can just have the blood test. An endoscopy is not an absolute need for a diagnosis - I've never had one done either. Good luck.
  2. nvsmom
    Well said.
  3. nvsmom
    I had this. Big headache and big faigue... and big crankiness. LOL It lasted about a week or so. Hang in there. I also experienced increased autoimmune flare-ups for a while. I would feel flui-ish, get achey muscles, increased hair loss, mouth sores, and joint pain. That settled down after about 6 months (for me). I agree with Kareng that you should...
  4. nvsmom
    I've read anemia is the most common symptom of celiac disease now. Good luck with the testing.Enjoy a cinnamon bun for me. Let us know how it goes.
  5. nvsmom
    No, I'm afraid not. Celiacs who are positive in all tests appear to be a (large) minority. It is very common to be positive in one test, negative in a nother test, or even have a negative biopsy with positive tests (or vice versa). That's part of the reason this pre-testing forum is so well used. It is suggested that people get as many tests run as possible...
  6. nvsmom
    There is hope. Up to about 3 or so years, I would definitely say that there is always hope for improvements. After that, chances are that the problem is caused by something else, or if it was celiac caused it has become a permanent issue which may not improve much more. Hang in there.
  7. nvsmom
    Ditto the others. If it is celiac disease, you may need to wait longer. I was convinced I had more wrong because I still had my arthralgia flare-ups after a many months gluten-free. It started to really improve after a year, and was mostly better by 2-2.5 years gluten-free. It can take a maddeningly long time to get well. I agree that you might as well...
  8. nvsmom
    Unfortunately, ataxia, neuropathies, and arthralgias are often some of the slower symptoms to improve. My arthritis actually became worse from 2-6 months gluten-free. I was convinced there was more wrong. After a year I was showing improvements, and by 2-2.5 years I was mostly better. I agree that you should look into it some more, but be prepared to...
  9. nvsmom
    I think symptoms change over time. Before I was diagnosed I had some great years with no big problems. Other years I was having major health issues. I think it varies. My glutening symptoms are not worse than they used to be. They may be a bit more noticeable because I'm no longer so used to being sick, but my symptoms are definitely not worse. It's an...
  10. nvsmom
    I would GUESS a couple of weeks will see you healed up. A gluten challenge for a biopsy is 2-4 weeks, so you should be okay in 6 weeks... I'm guessing though. I hope you don't have to reschedule. Feel better. Oh! L-glutamine is supposed to help with healing of the intestines (and muscle recovery). It might be worth a shot.
  11. nvsmom
    Low carb meals are a great help when dealing with this. Glad you found a solution.
  12. nvsmom
    Strong positive tTG tests are usually caused by celiac disease, 95% of the time. There is a false negative rate of about 5%, but they generally are not strong positives. If the range is 1-4, a weak positive is a 4.5 or 5. KWIM? I agree with Cyclinglady that your doctors seem to have lost their wits. Plus if you retest after going gluten-free, your labs...
  13. nvsmom
    Ditto. Hang in there.
  14. nvsmom
    If he isn't doing well, let the office know because sometimes they'll bump the young kids up in the schedule by a few days or weeks. Good luck. (hug)
  15. nvsmom
    (((HUGS)))
  16. nvsmom
    Within a few days my bloating went down, and stomach aches decreased a bit. Within 3 days I hit a withdrawal, or withdrawal like symptoms, and felt worse for a week or so (headache, fatigue and an impressive level of crankiness). Within a couple of months my migraines were mostly gone and my plantar faciitis disappeared, and my hair loss improved - bunches...
  17. nvsmom
    LOL I'm at a good level of geekiness in those tests because they were relevant to my situation. Self serving interest. There is a chance you'll have a negative biopsy. Damage can be patchy, although a positive EMA IgA is usually a positive biopsy. The false negative rate for biopsies can be as high as 1 in 5, or 20%. That seems to happen most early...
  18. nvsmom
    The tTG IgA typically indicaes and autoimmune attack is happening in the mucosal lining of the intestines. You are over 40X the upper limit. That's about as positive as it gets. The EMA IgA is similar to the ttG IgA but it tends to show more advanced disease. It is not uncommon to have a positive tTG IgA and a negative EMA IgA, but it is very unusual to...
  19. nvsmom
    Not every one can make it through a gluten challenge. Two to three months of sickness is no fun. If you can't get through it all, test immediately after going gluten-free. You might have a detectable antibodies, a positive is a positive. If it is a negative, then it is celiac disease or NCGS most likely. Good luck.
  20. nvsmom
    I have Hashi's too. I started getting slightly high TSH readings in my early 20's but my doctors ignored it and didn't tell me about it. Finally it went above 10 in my late 30's, but my TPO Ab was still (barely) normal. Autantibody levels don't always correlate to symptoms. Now I'm going through the same struggle with my son. He has symptoms and has had...
  21. nvsmom

    ARCHIVED Celiac and Acne

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

    Dairy! Good point. If I add cream to my coffee for a few days in a row, I am sure to get a few zits.
  22. nvsmom
    The endomysial antibodies (EMA IgA) tend to show more advanced damage. It is basically positive in response to the tTG IgA attacking your intestine, so the EMA IgA comes along to wipe out the top layer of the intestines with the misguided hopes of stopping whatever is wrong. A positive EMA usually means the damage would be found during a biopsy. Just make...
  23. nvsmom
    Well, thank YOU.
  24. nvsmom
    It could be celiac, especially if only one test like the tTg IgA was run, or it could be non-celiac gluten sensitivity (NCGS) which has the same symptoms as celiac disease. Before doing more testing you need to be eating the equivalent of 1-2 slices of bread per day in the 2-3 months prior to testing. You're right that if gluten levels are too low, some...
  25. nvsmom
    Yeah! It is so incredibly stressful not to know and have to wait for testing. I'm glad you know for sure!! Some doctors won't push the biopsy if you have a couple of negative tests and symptoms. Dr Fasano says a celiac should meet 4 out of 5 of his criteria to get a diagnosis. That would include genetic tests and a positive response to the gluten-free...
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