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MitziG

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Everything posted by MitziG

  1. MitziG
    I am interested in a meal replacement powder by Garden of Life called Raw Meal. It is labeled gluten free, but the ingredients say it has wheat grass, oat grass and barley grass in it. Can someone explain? Are these safe in certain forms perhaps?
  2. MitziG
    Agree with Bea- I make a big pot of rice at the beginning of the week, along with a couple cans of organic black beans. I throw some Weber's Kicken Chicken Seasoning in there and munch on it all week. Also do the shrimp thing- you dont even have to heat it up. Thaw it under cold water and munch away! I know what it is like to be so sick and tired all the...
  3. MitziG

    ARCHIVED Halp!

    MitziG replied to Shelly U's topic in Coping with Celiac Disease

    We have had some success with Gluten Relief capsules. Just tried them once this week and my son said it really helped ease the pain. There is another one called Gluten Ease that I think is basically the same thing. Digestive enzymes to help break down the gluten faster. Not a cure all, but perhaps it will help him out a bit pain wise. Drinking lots of water...
  4. MitziG
    Someone had given me a sample of these, so I saved them for the next accidental glutening to see if they would help. My son got glutened earlier in the week and was doubled over in pain, crying. I gave him one dissolved in Pepto Bismol and about 20 minutes later he said the pain was completely gone. Pepto alone doesn't usually give him much relief, so I am...
  5. MitziG
    Bumping this topic again- does anyone have some answers for this gentleman? Please let us know what your biopsy results are when you get them back!
  6. MitziG
    I would definitely consider parasites, particularly Giardia as it is common in water. I believe there is an accurate blood test for this. I would also insist on a stool screening for common parasites. Giardia can have waxing/waning symptoms, so that is what seems likely to me, but of course it could be many things. If you dont get answers from your medical...
  7. MitziG
    You mentioned in your first posts that you didn't know what tests your Dr did. Request a copy of them. Many on this board can provide you more info than your Dr did. Regardless, it seems pretty clear that gluten is not your friend, whether you choose to pursue an " official" dx or not!
  8. MitziG
    Birth defects? Not likely. Screamy, colicky baby with ear infections, reflux and funky rashes? Quite likely. Don't worry that you have done permanent damage, the majority of us were un dx celiacs eating gluten thru pregnancy. But do yourself and your little one a big favor and go gluten free from here on out. You will both feel better!
  9. MitziG
    I can totally relate to bingeing on junk food. Been an issue my whole life and got worse after going gluten free. Chocolate and cheetos became my go to food! I have finally kicked the cravings and bingeing by addressing nutrition. Amino acids create the neurotransmitters that control hunger, satiety and cravings, among other things. B vitamins are essential...
  10. MitziG
    I am so sorry. I too do not have much to offer besides sympathy I am afraid. My husband suffers from psoriasis on his palms and I well know the agony of the disease. He finally got relief after going to Mayo Clinic for their coal tar treatment, though they ended up doing a different treatment on him. It is relatively silent now anyway. Obviously food is a...
  11. MitziG
    I am not familiar enough with the tests to say for sure, but I think your positive one was indicative of autoimmune disease, not necessarily Celiac. There are autoimmune liver processes that may be your issue. But again, my knowledge in this area is fuzzy. Perhaps a bump up will get you answers from others however.
  12. MitziG
    "Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.
  13. MitziG
    The website says they dont use any gluten ingredients, but they also don't test for their presence. We seem to be getting a bellyache from it though. Carageenan hasn't been an issue for us. Anyone know if these have CC issues or something?
  14. MitziG
    Your post made me laugh too! I keep joking that I am going to start grabbing random strangers and forcibly drawing blood to run Celiac tests on. At least I am MOSTLY joking. It's not a TERRIBLE idea....
  15. MitziG
    My 8 yr olds thyroid tests came back today. TPO, Free T3 and Free T4 and Thyroglobulin antibody were all within normal range. The Free T4 was 1.22 (range .89-1.76) which was towards the low end, but still ok. His TSh was 4.69 however. This lab uses the old standard of .35-5.5 as normal, so they did not flag it. However, I am aware that that standard was...
  16. MitziG
    Me, both kids, and my mom are all biopsy confirmed celiac. My dad has never been tested but is at the very least gluten intolerant. Aunt (mom's sister) has extreme reaction to gluten, first cousin (aunts daughter) has DH. Her two siblings refuse to be tested for celiac or try being gluten free, but both have terrible stomach troubles and one was dx with dysautonomia...
  17. MitziG
    Well, I didn't have them all- but between my two kids and I, we covered all of the above! I had the first 3, 8 year old son had the next 3, plus anemia, 13 year old daughter had the last two. Its been 10 months, and the worst have resolved.
  18. MitziG
    I just posted a response to the same question, and I will tell you the same. False negative biopsies are very common. False positive blood tests are not. You have Celiac Disease. Be willing to accept that, regardless of what the biopsy says.
  19. MitziG
    This is a very valid point. I am not against biopsy, by any means. I just worry that people feel they aren't a "real celiac" without that dang biopsy report!
  20. MitziG
    Healing is a process, sort of like putting a puzzle together. it is important to focus on how much of the puzzle you have solved! The rest of the pieces may take awhile. You may have to try them in alot of different spots before you find the one that fits. And then there will still be more pieces to fit in. Just keep trying, and keep coming here for the support...
  21. MitziG
    No. Do not ask. Demand to be tested for Celiac. I guarantee you that if you "ask" your doctor will pooh-pooh your concerns, blow off anything you have read as "internet hoakum" and make you feel stupid for asking. But YOU are paying HIM. You are the customer- you know what you want- place your order. Celiac is ridiculously under-diagnosed in this country...
  22. MitziG
    Dr Alex Fasano is considered THE leading expert on Celiac Disease. He recently stated this in Gluten Free Living Magazine: "I was the one who said the gold standard was the biopsy. Now I am saying I was wrong. The blood tests are extremely accurate at showing a positive Celiac. False negatives- very common. False-positive? nope. You have Celiac...
  23. MitziG
    With minute amounts of gluten, like from CC, I generally get nausea and the big D within minutes and then for the next week or so I have a flare of my interstitial cystitis and I just feel tired and crummy altogether. On the one occasion I actually cheated and ingested REAL gluten(crab rangoons)- I started throwing up about an hour later. (That was around...
  24. MitziG
    What I initially thought was a glutening incident last night, got much, much worse over a few hours. Horrible knife like pains between my shoulder blades and under my rib cage, right side. Quite certain it was a gallbladder attack as I had a few several years ago- and then the drs decided my gallbladder was just fine and sent me home...but I digress. Anyway...
  25. MitziG
    I suggest you ask Martha and Paula to come over to your house for a cooking day. Make it a family project. Explain how difficult learnign to cook this way is, and you could really use their expertise. Flattery will get you everywhere!
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