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MitziG

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Everything posted by MitziG

  1. MitziG
    Well, my two kids have been fending for/ feeding themselves for 48 hours, the laundry is piled up, the dishes piled up and the place looks disgusting- all because I was starving and took a chance on a protein bar that was gluten free- but processed on equipment with wheat....ok...confession: I ate TWO of them. Getting out of bed and being mom isn't an...
  2. MitziG
    Yes, my dd is much better now- but last year was rough! You may be interested in knowing that in most other countries, a B12 level below 500 is considered deficient and is treated. Countries that do so have a significantly lower rate of dementia and alzheimers than the US. It has been hypothesized that many alzheimers patients here are simply B12 deficient...
  3. MitziG
    It seems to me that recovery is often 2 steps forward, one step back. There isn't anyway of knowing if it is a cc issue...and you have done all you can to prevent it. Or could be withdrawal. Or a virus. Or another food issue. Frustrating, I know! Just keep at it, and you will start to havee fewer and fewer bad days, and eventually be able to see more...
  4. MitziG
    My 8 yo just had follow up blood work done 15 mos post dx. TTG was finally negative at 3 (last check was still elevated) EMA was still positive. They never did EMA on myself or dd, so I guess I am unsure if this is a test I can expect to stay positive, or will it eventually drop to 0? Everything else looked pretty good- his elevated TSH dropped considerably...
  5. MitziG
    Hi Tom, sorry no one responded earlier. Like me, they probably read it, but didn't feel certain how to answer your questions. Honestly, the whole dairy issue is a controversial one. I think it is safe to say that most celiacs have an issue with either lactose, casein or both. The WHY is the controversial part. I think the theory of a leaky gut allowing...
  6. MitziG
    2-3 days should not affect anything, but definitely start eating it now until after all tests are done!
  7. MitziG
    Well, with two very positive blood tests (and EMA is specific to celiac) you definitely have it. Your dr may be old school and insist on a biopsy before he gives you an official dx however, which is unfortunate. Biopsies used to be considered "the gold standard" for dx celiac, but now that there are such specific blood tests, they aren't really necessary...
  8. MitziG
    Yes, after being gluten-free for 2 mos, you may have needed to eat gluten for 3-4 mos to show villi damage again- if you had it before. Non-celiac gluten intolerance may also be your issue however, and there is no way to test for it. If you feel better off gluten, that is your answer.
  9. MitziG
    For me, iron, vit E and Vit D- most of the population is D deficient due to the time we spend indoors. Celiac just makes it worse though.
  10. MitziG
    Food coloring makes my boy CRAZY hyper and gives him panic attacks. Red is the worst.
  11. MitziG
    I would explain it to her now. She isn't going to be able to be vigilant however, so you do need to speak firmly to her teachers. They need to treat it like they would a kid with a deadly peanut allergy, and they need to be reminding her when they put out a snack that she can't eat that snack, but here is the snack Mommy sent for her. But, definitely start...
  12. MitziG
    10 mos after dx my sons levels were still slightly elevated. Just had a 15 mo re-check and hoping they are at 0 now. Mine and my dd were at zero within a few mos. None of us are cheating. Everybody is different, and as long as the numbers steadily go down, I wouldn't worry too much yet.
  13. MitziG
    Personally, I think you should immediately start eating gluten again and get complete testing done. If you do have celiac disease, it is important for other family members to be tested. Also, if it is celiac, cheating is not an option, ever. It is easy to justify cheating "a little bit" if you aren't even sure you have it. Also, if it is celiac, you...
  14. MitziG
    Oh for petes sake! They didn't even call to tell you that you had celiac?! I would suggest new docs immediately. Also...B12 deficiency can cause a LOT of serious problems- not sure if seizures are one of them, but definitely neurological issues. You need to have them check: B12, B6, Vit A,E,D &K, iron and ferritin. To start with. Don't take no...
  15. MitziG
    If you have the gene for celiacs, you can go years without issue until something "triggers" the disease to become active. Could be stress, surgery, illness...hard to say. As for gluten intolerance....theories abound, the most logical of which seems to me to be leaky gut syndrome. Too involved to explain in a thread but if you google it you will learn all...
  16. MitziG
    Your doctor is a dope. She has celiac, it just hasn't done severe damage to the villi yet, or the doctor didn't take enough biopsy samples. With positive EMA alone she should be diagnosed, and the biopsy is really more of a formality. It clearly shows celiac activity in the early stages. I would NOT do omeprazole- it caused a lot of problems for my little...
  17. MitziG
    When they test you for celiac, they are looking for antibodies in your blood that your body makes against gluten. If you aren't eating gluten, the body stops making the antibodies, therefore, tests will show a false negative. Also, if you get positive bloodwork, they will want to do a biopsy to confirm that it is celiac. The biopsy looks for flattened...
  18. MitziG
    Your numbers were pretty high to begin with, I don't think it is realistic to expect them to be at zero in 3 months. Of course, cross contamination may be an issue, as she suggested. And honestly, I am all for making the house gluten free. The 4 year old is likely to develop celiac at some point, and being gluten "lite" now may forestall it. Both kids...
  19. MitziG
    At this point, you would have to go back to eating gluten, a lot of it, for 3-4 months to have a prayer of showing a positive test. Your endo is ill-informed in that she is unaware of the co-morbity of Hashimotos and celiac. My advice...dx yourself and give the endo the royal kiss off. You will never convince her and sacrificing your health in an effort...
  20. MitziG
    EGD is a piece of cake. (Gluten free cake cuz if it was real cake it would be enjoyable!) But it is no big deal- be over before you know it. I didn't even have a sore throat after. I did have a lot of belly pain for a few days though (irritated duodenum I was told when I went to the ER) Make sure to confirm the number of biopsy samples the GI will take...
  21. MitziG
    Also- even if you are only off gluten for a few weeks, in order to get the best chance of a positive biopsy, you will need to go back to eating a LOT of gluten for another 3-4 months before you can have the endoscopy. And if your GI doesn't know this (which it appears he does not) RUN the other way. He is probably going to screw up the endoscopy/biopsy anyway...
  22. MitziG
    Do NOT go off gluten until the endoscopy! Your doctor is not well informed. INSIST on the endoscopy first. The colonoscopy is likely not even necessary and can NOT reveal celaic. The last thing you want to do is to go off gluten for awhile, and then have to go back on for an endoscopy. if it is your problem you will get very, very sick from trying to reintroduce...
  23. MitziG
    Well, I wasn't dx yet when I nursed my two kids, so I gorged away on gluten- but still had trouble making enough milk and had to supplement with formula. I was also very sick and nauseous (probably due to un-dx celiac). And I think that had the most affect on my milk supply. Definitely stay gluten free. Find a food that sits easy with you (preferably...
  24. MitziG
    Most doctors are pretty ignorant about celiac. Unless you are an emaciated 6 yr old boy, they pretty much insist you can't have it. But...you are the boss. Go back and INSIST on a full celiac panel (print the full list from this website- few drs will do the correct tests if you don't) Do NOT stop eating gluten until all tests are done. Once the tests...
  25. MitziG
    No, Adderall won't affect the test results. They are looking for antibodies to gluten in your blood- if your body is making them, then you have a problem with gluten. Do take some time to look around this board- I am concerned for both you and your son. Poor dx of celiac disease is a common problem. Your son most likely had an incomplete panel done....
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