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MitziG

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Everything posted by MitziG

  1. MitziG
    Well, her fears aren't irrational you see. She gets very very sick from "mystery" exposure. Try as we might, we never know the source of her exposure. Our whole house is gluten free as 3 of us are celiacs. She eats nothing anywhere else. Period. So...it is usually chalked up to doorknobs or surfaces that are contaminated. Can't disinfect the world. So she...
  2. MitziG
    Yep. Fire the lot. Your daughter was dx via endoscopy- that supercedes any blood tests. Celiac is permanent. While it frequently does go into a "silent" stage, your daughter still needs to be on a gluten free diet for life. Hopefully the errors in her doctors' judgement have not caused permanent harm and once she is gluten free again, she will start to heal...
  3. MitziG
    Correct.
  4. MitziG
    Awww...now I'm blushing.
  5. MitziG
    Rosetapper- we have had every level of everything checked on her- hormones, micronutrients, fat absorption- perfect. Even though she had marked villous atrophy, she was still absorbing perfectly. Always 95% growth. But she has had OCD since early toddler years and I do feel strongly it is linked to being celiac...but have yet to find a doctor that agrees...
  6. MitziG
    Takala, too funny...and true. But still...did I mention it had Oreos??? Bartful...unfortunately my hobbies are sort of the "un-portable" variety. I really like to rearrange my furniture in the middle of the night for instance....and I rescue a lot of stray animals. I love to read...but reading a book at a party isn't going to help with interaction....
  7. MitziG
    Ravenwood, my DD is 13. She is in counseling for OCD already, and the food issue is part of it. She is homeschooled now (she was just too sick all the time.) We dual enrolled this year so she goes only in the morning and leaves before lunch. The first day of school this year already she left early throwing up. Stuck it out the next two days but felt really...
  8. MitziG
    Went to a picnic yesterday- you know the kind. Everyone brings tons of yummy covered dishes and you eat 5 times as many desserts as you should... I always loved those. Well this was a groupd of people from my church that I am only acquainted with, not exactly close to. We moved here several years ago but it has never really become "home." So, the kids...
  9. MitziG
    Yes. You are IGA deficient, therefore only any iga tests are invalid. Igg testing and EMA should be done. IGA deficiency is a red flag for possible celiac disease as well.
  10. MitziG
    It is impossible to say, because you didn't have thorough testing done. My gut would tell me you have Celiac Disease, for what that is worth.
  11. MitziG
    Thanks guys! Why on earth must they put wheat in Twizzlers anyway? I really miss those!
  12. MitziG
    A store in town was clearancing out all of their candy, something I rarely buy. But you know, a bargain is a bargain.... Initially I WAS checking the back of each package to see if they were ok...but then I got a bit lazy, saw the GLUTEN FREE on the bag and just tossed them in the cart. I really wish companies would not label things gluten free when...
  13. MitziG
    Mine was ttg IGA. But my doctor totally dismissed it, even tho my son was just dx with celiacs. Because I had atypical symptoms, mostly fatigue, he didn't think I could have it. But I insisted on the endoscopy, and the GI dx me on the spot, before biopsies came back, due to years worth of visible damage. So blood tests only tell part of the tale. The...
  14. MitziG
    Ttg isn't 100%...but it isn't unreliable either. The positive indicated an immune response. If you don't have other autoimmune disease, celiac IS the likely culprit. I had only a weak positive ttg. Nothing else. But a wildly positive biopsy with total villous atrophy. It took many months on the diet before I noticed improvement- a year and a half later...
  15. MitziG
    I agree. It is no ones business but yours what you eat. Why should you make yourself sick for MONTHS so that you can get a test that may or MAY NOT say you have celiac? You may be gluten intolerant, and there are no reliable tests for that. Your friends and family have no say. I understand wanting validation, but sometimes you need to simply say "I am...
  16. MitziG
    Your daughter sounds very much like a celiac. Both my kids and I have it and have very different symptoms. My son was like your daughter- constant bone and joint pain and stomach pain, not intestinal. Ravenously hungry. Celiac can cause other food sensitivties to develop, but since it is not an actualy allergy, it would not show up in a wheat allergy test...
  17. MitziG
    Reread your post....since your daughter has such an obvious reaction to milk, she would likely respond to a gluten and casein free diet. Try removing ALL casein from her food as well as gluten- I bet the brain fog will clear!
  18. MitziG
    Do not discount gluten as the problem. Celiac is difficult to detect in young children. It sounds like your doctors only tested ttg- a complete celiac panel may reveal more. Ttg is only one (and not the most specific) of the celiac tests. EMA and DGP should definitely be done. That said, if your kids are gluten intolerant, not celiac, they will never test...
  19. MitziG
    The tests you were positive on are very specific to celiac disease. No doubt that you have it. Your biopsy may or may not agree as celiac is not always easy to spot. Even if your GI disagrees, you definitely have it. Please spend time on this forum and learn all you can. Ignorance about celiac, even amongst GI's, is rampant. As for eczema, yes, celiac...
  20. MitziG
    Don't discount the possibility just because you don't react severely to gluten. As a 30+ year un diagnosed Celiac, I had what would be considered mild reactions. I ate gluten regularly, and had some digestive issues, but nothing that could be directly attributed to what I ate. My biggest complaint was chronic fatigue. After being gluten free for several monnths...
  21. MitziG
    Your tests are negative for celiac disease, however they did not do a full panel. That said, celiac is often missed with blood tests anyway- false negatives are very common. Gluten sensitivity is very common, but can NOT be tested for. The symptoms are the same as Celiac. If you do not wish to pursue further testing, try the diet, with 100% compliance for...
  22. MitziG
    Sure is! I have IC and Celiac too, the IC is largely controlled by a gluten free/ casein free diet. I have occasional flares still, but they are much milder than before and I do not need meds anymore.
  23. MitziG
    After numerous rounds of antifungals for chronic yeast infections, I finally started the candida diet. TORTURE. I am fantasizing about bananas with Nutella...anyway, have seen a lot of mention of a product called Threelac that is supposed to kill Candida. But...two of the ingredients are YEAST and Casein. I am casein intolerant (don't get sick but get tired...
  24. MitziG
    Yes, you definitely sound like a celiac. Get tested, pronto. It is common for people to try the diet, feel some better, but not perfect, and then question if gluten is really the problem. If you get a positive test, there is no doubt. If your tests are negative, give the diet 100% compliance for a good 6 months. Chances are you will see real improvement...
  25. MitziG
    Your doctor is VERY wrong. It is imperative that you begin eating gluten again and continue doing so until all testing is done!
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