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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Most celiacs do not have visual damage during the biopsy. That's pretty normal so far. If the biopsy does come back negative, keep in mind that the biopsy has a sensitivity as low as 80%, meaning up to 1 in every celiacs will have a negative biopsy. A negative biopsy does NOT disregard positive blood tests, it just doesn't support it. If you have...
  2. nvsmom
    I would get those other tests run if possible. The tTG IgA can miss up to 25% of all celiacs even if they are not IgA deficient (like Cyclinglady). Getting more tests done is important unless they are going gluten-free anyways. Page 12 of this report shows the sensitivity of the various tests.Open Original Shared Link Eating gluten-free or taking...
  3. nvsmom
    About 10 days ago, or so, I developed a rash patch on my ribs, about 1-2" high and 2-3" long on my ribs below the bra line, and another smaller patch, about half the size, about 6" further towards my back. They look like a bunch of mosquito bites surrounded in a red patch. At first I thought was a weird reaction to a spider bite or something. It was itchy...
  4. nvsmom
    I had pretty bad inflammatory arthritis symptoms in my hands which continued well into my first year of eating gluten-free and still pops up now and again. It was painful to the point where my hands did start to look funny but there was no actual deformity in the joint - I just couldn't move it well so it tightened up and atrophied some. My hands were Xrayed...
  5. nvsmom
    LOL I'm late to this Barty, but I was wondering what your test results actually were? I had my subclinically hypothyroid tests brushed off with a "normal" for a few decades. Once my tests were finally abnormal enough for the doctors to admit something was wrong, my thyroid was barely functioning - my tests did not reflect that fact though. Your...
  6. nvsmom
    Looks positive to me. The DGP IgG is something like 98-100% specific to celiac disease, which means if you have a positive you have celiac disease. You have a positive and your other tests are really close to being abnormal. The EMA IgA is rarely dodn if the tTG IgA was negative. The two tests are very similar but the EMA detects more advanced damage...
  7. nvsmom
    You never know. The only thing waiting would do is make her sicker so doctors could agree she was sick.
  8. nvsmom
    A positive EMA IgA? That's a sure thing. I'm glad you know for sure. Don't go gluten-free until after the endoscopy. You'll need 2-4 weeks of gluten for that. And make sure they take at least 6 samples so yout risk of a (confusing) false negative biopsy is reduced. It is a journey but you'll do okay once you settle in. I promise.
  9. nvsmom
    My oldest son was just like that. When he went gluten-free about 2.5 years ago his intense focus became a bit less... intense. It became easier for him to turn away from his passions when need be. He also found it simpler to be with others in busy environments, although sometimes it still becomes too much for him and he needs to step away for a while...
  10. nvsmom
    I thought I responded but my answer was lost. Oops. 1. After going gluten-free, your tTG is not going to respond quickly to minute exposures to gluten. I doubt 1 crumb of a crumb would kick the tTG out of normal. I saw one study that showed it took most people two weeks on a gluten challenge (~2slices of bread per day) before their tTG levels rose...
  11. nvsmom
    Your bones are still in "growing mode" compared to an adult. Because your system is set to grow bone mass right now, you'll probably strengthen bones faster than an adult who is just maintaining their bone mass at the same size. Best wishes.
  12. nvsmom
    I'm guessing that your healing is done and you are dealing with other issues or possibly some permanent symptoms. Are you hypothyroid now? That can wear one down.
  13. nvsmom
    Did you have any other positive tests? The EMA IgA is not positive for all celiacs. It tends to show more advanced cases of the disease. Those with early celiac may have a positive tTG IgA or DGP test, but the EMA could be negative. This theory would also support the fact that you have Marsh 1 damage which is often considered early damage. Marsh 0 is...
  14. nvsmom
    Very sweet of you. I think Patches instantly sensed your big heart...
  15. nvsmom
    The wieght and high insulin levels could cause some of that. Try googling it and see if it rings a bell for you.
  16. nvsmom
    Agreed. Good luck!!
  17. nvsmom
    Food reactions usually start within minutes up to 72 hours later. Symptoms may last hours to weeks depending on what they are. I'm sure others who know more will chime in. Good luck.
  18. nvsmom
    If she had a positive blood test, then even if she has a negative biopsy she still most likely has celiac disease. The biopsy can miss up to 20% of all celiacs. That's 1 in every 5. Considering the intestines have the surface area of a tennis court, and that damage is often patchy, it's almost surprising that it doesn't miss more celiacs. A negative...
  19. nvsmom
    So fasting blood glucose and insulin was fine? No prediabetes or anything? That's good. If there are no other issues that could cause the fatty liver, it could be celiac disease. Are you going to do those celiac tests that were not done? If so, do them soon. The doctor being "convinced that the fatty liver is causing all this" is fine, but what...
  20. nvsmom
    Test immediately if you are not doing a gluten challenge. The tTG IgG test can remain elevated for weeks, and even months, so you could get an accurate result, but the tTG IgG misses about half of all celiacs anyways. The DGP IgG and EMA IGG will go down to normal faster so test them immediately. How are your blood glucose and insulin levels? A high...
  21. nvsmom
    Oh dear, you've been through a lot. Let's get this sorted... I am guessing that your doctor actually said that you are IgA (Immunoglobulin A) deficient, which happens in about 1 in 20 celiacs. I consider to almost be a sign of celiac disease because it is so much more common in celiacs than in the rest of the population. Anyways, if you do not...
  22. nvsmom
    Very unlikely. The DGP IgG is 99-100% specific to celiac disease. It is the MOST specific of all the tests. Look at Table 3 on page 12 of the Open Original Shared Link. A positive DGP IgG is as close to a sure thing as you can get. I'm glad that she isn't doing too badly. Good luck with it.
  23. nvsmom
    I would talk to you doctor about testing for celiac disease ASAP. You need to be eating gluten (ideally in the 2-3 months) prior to testing for the most accurate results. If they want to test you in the future you would have to resume eating gluten for about 12 weeks - not good for your health. Resuming gluten for a short time and testing SOON. may be...
  24. nvsmom
    You had it right. The tTG is tissue transglutaminase, and I'm guessing the one she had done on her was the tTG IgA because it said they ruled out IgA deficiency for this test. The normal range was 0.0 - 6.9, and her result was only a 0.60 - pretty low result. Negative for sure. The EMA IgA (or endomysium antibodies) was alos negative. That one is not...
  25. nvsmom
    I hope you start feeling well soon.
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