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nvsmom

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Everything posted by nvsmom

  1. No celiac disease tests are perfect. The blood tests generally miss up to 25% of celiacs (except the older antigliadin antobodies- AGA) and the biopsy can miss up to 1 in 5 celiacs. As a general rule, a positive in a celiac disease test means you have celiac disease. I like to think of it like the pregnancy tests. You may have a weak positive at 9 days...
  2. I'm sorry to hear that. Best wishes to you and your family.
  3. (((Hugs))) When it rains it pores. :( Hang in there. It sounds like you are working hard to get this all sorted out. I hope you are healthy again soon.
  4. Glucose from wheat is safe, but I usually steer clear anyways. The word DOES freak me out. LOL Besides, I've only every encountered it in candy and I should steer clear of that anyways.
  5. Your doctor sounds very good! Enjoy a Guiness and a stout for me in the next few weeks.
  6. I'm actually afraid to try oats again. I don't always react violently to being glutened, my symptoms tend to grow over repeated exposures beyond the bloat and headache, so I just don't try it. My symptoms sneak up on me so it is hard to figure out why I am slowly feeling worse and worse. Anyway, even eating gluten-free oats is a risk I would rather not...
  7. I've seen a few people who have commented that gluten exacerbated their asthma. Going gluten-free doesn't usually cure it, but it can help. Ah, denial.... It took me a good 6 months to finally see a doctor about celiac disease once I figured out what was wrong with me. LOL Looking back, it seems silly that I waited so long but change is hard...
  8. I actually do have a really strong gluten-free network but we move in... alternative circles. The main thing is that we homeschool, and there are many kids with food issues, allergies and problems like diabetes where it is safer to keep them near you. My friends are very health conscious and a few of them were gluten-free before I had even heard of gluten...
  9. My son's asthma disappeared after he went gluten-free. He had mild asthma to begin with, it only affected him when he was sick, but his coughing is completely under control since going gluten-free.... and he even had a negative celiac test. ( Only one test was done, he has symptoms, and his mom is a celiac so we went gluten-free anyways - glad we did.)...
  10. The celiac disease tests are: tTG IgA and tTG IgG (tissue transglutaminase) - most widely used tests DGP IgA and DGP IgG (deaminated gliadin peptides) - this is probably the best test for young kids EMA IgA (endomysial antibodies) total serum IgA - a control test AGA IgA and AGA IgG - older and less reliable tests (anti-gliadin antibodies) For the...
  11. Air born flour can be a problem if it is getting inside of you; some flour may have settled on the peanut butter, sugar, or butter and then if you eat it, you've been glutened. Or it could just be an issue of accidentally touching some food or your mouth with flour. I think some people could safely bake with flour but the risk and the hassle of clean...
  12. The lower left pain is may be due to the constipation. I used to have pain there frequently when I was blocked up. It took 9 months of being gluten-free before I had any relief of my C, and that coincided with switching to a proper thyroid medication (hypothyroidism causes C too). I would increase her nut intake (they get many people moving), and possibly...
  13. As a former teacher, albeit up in Canada, it should be no big deal for a teacher to cover a classroom for 5 minutes. I did it for colleagues and they did it for me, repeatedly, when I had morning (noon and night) sickness with my first pregnancy. I was still a fine teacher (well, at least average LOL) even though I needed to throw up every couple of hours...
  14. Ah geez. What a shame. I know he's a leading researcher and all but those big egos get annoying.
  15. To me, it seems to be poking fun at the egocentric way of things now a days. It seems that people want it their way, with a sense of entitlement, and feel that they should be accommodated. I'm not saying that it isn't great to try to accommodate people but for those people without a food issue, these food problems won't be on their radar; asking to be accommodated...
  16. I haven't had saurbraten for a decade or two. My grandmother would make it with raisens. I wasn't a huge meat eater as a child but I loved that roast. Mmmmm, saurbraten.... I haven't tried making gluten-free spaztle yet. I should look into that - its been too long.
  17. Oh... I thought he did. He wrote this: An important corollary of this rule is that the small intestinal biopsy may be avoided in selected cases, in which a typical clinical presentation, high titer IgA class anti-TTG and EMA antibodies, and the presence of HLA-DQ2 and/or –DQ8 predisposing genes are present. The diagnosis is confirmed by the resolution o...
  18. Giving up sugar is tough for me. I can give up other stuff but sugar. Ugh. I've cut back on sugar before but as soon as I have one muffin or cookie as a treat, it's all down hill from there. I may be able to say that giving up sugar isn't too bad in a few months after the cravings are gone. LOL And this darn headache! Yep, grumpiness is setting...
  19. I agree with StephanieL. Most docs will probably advise you to keep feeding her gluten for another year and then to come back and retest with the hopes that the damage is bad enough that he feels comfortable giving a firm celiac disease diagnosis. We've seen that many many times. To get a diagnosis of celiac disease, Dr Fasano (leading celiac disease...
  20. I didn't get sick every time I ate gluten before diagnosis, so I doubt I would feel it every time I got glutened (which is rare). The last time I glutened myself it was repeatedly in small amounts (on french fries which label I did not read) over a few weeks. I would eat a fry or two off my kids' plates. I slowly felt ill over time until it became bad...
  21. I luckily have never suffered from dh so I can't comment much on that. I know other types of gluten reactions seem to take 15 minutes to a few days to set in. I imagine dh is similar but I really don't know. Antibodies stay in the system for varying lengths of time. Most celiacs test negative between 6 and 12 months, some are sooner and some are later...
  22. With so many positive tests, I'll go against the grain and say that I think the biopsy is not needed for a diagnosis. The EMA IgA is over 98% specific to celiac disease, and the other positive tests are almost as specific. If she is having some symptoms, even if they are mild, I would say a celiac disease diagnosis is a slam dunk. I was diagnosed...
  23. I just get the high pitched whining or ringing. It is not loud but I hear it every time I'm in a quieter room, and have heard it for years and years.
  24. I've been good today... and I'm starting to get the headache. LOL Well, I wasn't perfect, I had maple syrup on some coconut pancakes this morning, but otherwise this was a good day. Lunch was rushed and could have been better too. I plan on eating 3 meals per day and possibly 2 to 3 snacks. That worked well for me a few years back and I'm curious to...
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