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nvsmom

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Everything posted by nvsmom

  1. nvsmom
  2. nvsmom
    I would just say you have celiac disease, but it was caught in the early stages. A gluten sensitivity NEVER causes damage unless it is celiac disease.
  3. nvsmom
    I doubt it too. 95% of the time a positive ttG IgA is caused by celiac disease. The other 5% of the time, a weak positive is caused by hashimoto's, liver disease, diabetes, crohn's, colitis, or a serious infection. I would say you probably have celiac disease.
  4. nvsmom
    You are positive in every celiac test given. (The immunoglobulin A was just a control test.) It doesn't get more positive than that. The EMA IgA is 98% specific to celiac disease alone. With two other positives, it is a sure thing that you have celiac disease. There's a good chance the doctor will still want to biopsy you. You can do it or not. Three...
  5. nvsmom
    No tests ordered? My reactive hypoglycemia symptoms were mostly eliminated after I started a low carb diet to address prediabetes and inflammation. I no longer get large blood glucose swings. Adding proteins to your carbs will help stop the swings somewhat too.
  6. nvsmom
    Yes. Recovery is often an up and down process in the first year especially. Hang in there. You'll slowly get more good than day days.
  7. nvsmom
    Let us know how the celiac panel goes, and what tests they do. Many panels only do one or two tests so make sure you get a look at what was done. Good luck!!
  8. nvsmom
    I do that to a lesser degree too. My kids eat waffles most days, but I only make them once or twice per week. Mine are coconut flour and flax meal based. They got the kids' satmp of approval though.
  9. nvsmom

    ARCHIVED Why Oh Why?

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

    Oh geez. I hope some of the other suggestions work for you. I'd hate for you to have to abandon something that was working.. (hugs)
  10. nvsmom
    I have a cousin with MS who is gluten-free because he finds it helps, although he does not test positive for celiac disease. Gluten ataxia can be misdiagnosed as MS. Beyond that, I'm afraid that I don't know much.
  11. nvsmom
    This does happen in a minority of cases. Up to 1 in 5 celiacs gets a negative biopsy. You had a positive test, some symptoms, and an autoimmune disease that is strongly linked with celiac disease, so it is most likely celiac disease. A positive test would just confirm, and a negative test would not disprove it, but only not support the celiac diagnosis...
  12. nvsmom
    I agree. It can take months to get better. My blood tests were still abnormal (slightly) at a year gluten-free, and I didn't feel better until 2 years gluten-free, although there were large improvements during that time. Plus, many people experience a withdrawal when they go gluten-free. Headaches, fatigue, stomach issues can all get worse before they...
  13. nvsmom
    Good catch! So true...
  14. nvsmom
    Let us know how it goes.
  15. nvsmom
    ((hugs)) Most of us went through the same frustration and grieving period. You're not alone. I promise that if you hang in there, it will get easier within a few months; by Christmas I bet you'll be in your groove. Like the others said, the healthiest and simplest way to eat gluten-free is to NOT use gluten-free replacement foods like breads, muffins...
  16. nvsmom
    Sorry about your dad. Your doctor is taking the approach of "lets see if we can make you sick enough to diagnose." Sadly, this disease requires getting sicker for a firm diagnosis. Hopefully that will change one day. After your doctor sees you again in a few weeks, consider going gluten-free for 6 months and then seeing if you can retest everything...
  17. nvsmom
    I really like Dr Bernstein's Diabetes Solution book. He advocates a LCHF ketogenic diet. Atkins is also similar. Lots of food ideas from both. They are at the extreme end though, so you may be more moderate. Good luck! I hope you have success with the dietary changes too.
  18. nvsmom
    I copied the following from the World Gastroenterology Celiac Guidelines: Open Original Shared Link The lesion in the duodenum/upper jejunum may be patchy, as a result of which it may be missed if there is insufficient mucosal sampling [25]. At least four biopsy samples must be taken—three from the second part of the duodenum distal to the papilla, a...
  19. nvsmom
    True. I found nothing. This was related to steroid use so I thought I'd post it with the hope it could be somewhat helpful. Please disregard it if it is not relevant. I am far from an expert in the area of inhaled steroids.
  20. nvsmom
    If I find more I'll post it. To be honest, I haven't looked for articles on amounts and duration of steroids before. This article discusses treating refractory celiac disease with steroids. It makes sense that damage is lessened if steroid are used as a treatment for some, but it doesn't get into any time frames. Open Original Shared Link
  21. nvsmom
    It sounds like you have what may be early celiac disease. You have increased lymphocytes but the villi of the intestine have not been destroyed yet. That would be Marsh stage 1. Celiac is usually diagnosed at stage 2 or 3. Open Original Shared Link My guess is she checked ANA because celiac disease is an autoimmune disease and can raise ANA, and there...
  22. nvsmom
    Good luck with the tests and the gluten challenge. Don't overdo the gluten, you only need the equivalent of 1-2 slices of bread per day. Some people find it helpful to leave the gluten until later in the day so their day is not as disrupted,
  23. nvsmom
    If you can stomach it, it will help make the tests more reliable. Those blood tests can miss up to a quarter of all celiacs (the old AGA tests miss even more) so it is wise to make sure you are not gluten light before the test. Good luck.
  24. nvsmom
    Your post resonated a bit with me. A few of your issues, and your family's issues have come up in my life too. I had the fatigue, mouth sores, butterfly-like rash joint pain, stomach pain, migraines, dizziness (postural hypotension upon standing), and I even had a bit too much breast milk (I had to hold towels to the other breast when feeding or it shot...
  25. nvsmom
    I'm afraid I have no idea what testing costs, but I can tell you which tests to look into, which I really think you should - your symptoms are the same as mine were. Make sure you are eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, and 4-8 weeks prior to the biopsy. The tests: tTG IgA and tTG IgG (tissue transglutaminase...
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