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sb2178

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Latest Celiac Disease News & Research:

Everything posted by sb2178

  1. sb2178
    antibody tests: IgA and IgG AGA IgA TTG (IgG TTG if available) IgA EMA total IgA there are also DGP (deaminated gluten peptide, maybe?) antibody tests, which may or may not be available. She absolutely must be eating significant amounts of gluten for the tests to even have a chance of being valid.
  2. sb2178
    Oh, yeah, don't know where you are, but I get Schar products in Boston and they are excellent if pricey. Not the criossants, though, must investigate. Mmmm...
  3. sb2178
    Yeah, I had negative first round test results so did an elimination diet with a very short challenge while waiting for a second round of blood work to come back. It was miserable. I ate a bowl of plain pasta on a Monday night, a bowl of cereal on Tuesday morning, started to get tummy issues, and by Wednesday I was one sick puppy. Didn't even leave my apartment...
  4. sb2178
    And there is refractory celiac disease-- very rare-- but it means that your immune system keeps attacking your intestines even after gluten is removed from the diet. Have they done follow up bloodwork to check on antibody levels? If they haven't gone down, that's a problem. It should be a bare minimum of what a basic PCP can do.
  5. sb2178
    isn't rice dream processed with barley in some hidden way?
  6. sb2178
    Look for a frittata recipe. You'll want something with about a dozen eggs, some cooked vegetables, a big of cheese, and maybe a muffin liner of thinly sliced ham or turkey to substitute for the crust if you dislike browned eggs. You don't need a binder if the recipe doesn't use much milk/cream. I enjoy them a lot and they freeze well.
  7. sb2178
    chocolate. candied ginger. herbal tea. grapes. grapes. cherries. canned pineapple. larabars. and... at one point... straight honey. you can also order some stuff on amaazon in bulk quantities which makes it cheaper (i.e. 10 lbs corn-quinoa pasta in bulk for 3.20/lb instead of 4.29 for one 8 oz box), but again you have to be old enough to have a...
  8. sb2178
    At one point this summer, I think there was a celiac association that needed an assistant of some sort. that was on idealist, probably.
  9. sb2178
    No, EMA is also IgA based. They can do a TTG based on IgG though. And there is antigliadin IgG. I'm pretty sure nobody tested me for IgA deficiency, and need to get that done (the IgG tests WERE elevated, the IgA tests were borderline). Symptoms resolved gluten-free. I have a couple of cookbooks, but none I would recommend as great. You Won't...
  10. sb2178
    FYI, vitamin K: daily 0-6 mo 2.0 mcg 6-12 mo 2.5 mcg 1-3 yrs 30 mcg (adults: 90-120 mcg) Bleeding gums is a major sign (do you brush teeth?) too. Toxicity can occur with synthetic doses and leads to liver failure. It is a fat-soluble vitamin, so toxicity is potentially possible at much lower doses than with water soluble vitamins...
  11. sb2178
    Since you don't have insurance (unless you have good savings), look for a free screening day. They are posted here and there. If you can't find one, investigate clinics with sliding scales, public hospital clinics, or work on getting on some insurance (you're young enough to join a parental plan, if they have it). Most states have some department that...
  12. sb2178
    I have a gluten free-friendly food blog. Everything posted is gluten-free, but many recipes are flexible to using non-gluten-free pasta for example, or possibly just white flour instead of rice flour. My blog also has other random nutrition/food/gardening/fiber arts stuff on it. And I would like to see other people's posts here, as I am lazy about...
  13. sb2178
    For flying, I always carry 6-8 larabars, a bag of trail mix, and a couple of apples. Sometimes carrots. But I'm one of those people who gets stuck in airports and on runways about half the time. I've had nutella taken away, so no hummus or PB anymore :-( Rice and beans made it through (without salsa). For visiting people, I generally take pancake mix...
  14. sb2178
    The first couple of weeks are really rough, and it sounds like you have lots else going on. I was a mess for the first two weeks and then a bit more... uh... irritable/*itchy... for a couple of weeks after that. Adjusting is hard. You'll make it, especially if you reach out to everyone who could possibly help you. Have you been to a support group? ...
  15. sb2178
    I'd be sure to do some interval training (alternating medium brisk and quite fast walking to jogging). If it's a hilly course, make sure you're marching up hills regularly. [And that nursrey rhyme about the Duke of York just popped into my head.] General old standby race advice: -practice with your food (less important with a half, but a snack/drinks...
  16. sb2178
    TTGs can also be high in Crohn's disease, rarely, but unless you have joint pain, Crohn's is probably more likely than RA. Maybe also in colitis, but I don't remember reading anything about it. Leg pain could definitely be from vitamin D deficiency-- hope you are taking high dose rx D. If not, get it.
  17. sb2178
    Look into it. You may be surprised. Start with the school nurse, or call the district nutritionist. Get her contact info and send her the safe/not safe lists from this site. They are *required* to meet your needs. Variety is part of the recommendations, so things you can suggest other than hot dogs: -hamburger patties -soy sauce free chicken stir fry...
  18. sb2178
    You could ask for another round of tests, especially if you weren't eating much gluten (3-4 slices bread/day), after eating more gluten, or a biopsy. If you don't need the paper saying you have it, try the diet. Have your nutrient status assessed too. That may help.
  19. sb2178
    Nutrient deficiencies can also lead to gastritis... hmmm.... don't remember which nutrient.
  20. sb2178
    I very carefully ate a lot of croissants during my diagnosis odessy (sp??). Chocolate. Almond. Plain. Gruyere. last meal was a challenge of plain pasta. And, ouch, I'm never doing that again.
  21. sb2178
    Digest Gold is pretty good-- I took it for a couple of weeks and it helped more than anything else other than eliminating gluten. The PPIs (Nexium) can actually sort of turn off your digestive system. If you've been on it for a while, ask your doc about stopping it for a few weeks. If it's new, then it's probably not the culprit. I would ask for an...
  22. sb2178
    Cast iron. Re-season or replace. Pet food/litter. Play-Doh.
  23. sb2178
    Ditto the no alcohol, but I've had two and been up to activity by late afternoon/evening. The second one they went overly light on the meds, though. I just took an hour long nap and was fine after that except for a sore throat. And the memories of waking up... No one seems to ever believe me that I have VERY good liver function. sigh.
  24. sb2178
    Get your magnesium level checked too. Or just try taking a low dose for a week to see if it makes a difference. It killed my insomnia -- like down from maybe 3-4 times times a week to just when I overdo the caffeine. I wasn't even deficient, just at the very bottom of the normal range. FYI, can cause diarrhea, so start at a low dose!
  25. sb2178
    Carolina, Have you tried doing a low lecithin diet? I know brown rice has a much higher level of lecithins than white rice. Legumes also have them... don't remember what else. Just an idea. I would think that the pain would at least drop within three months some of the time unless there are other things going on.
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