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mygfworld

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by mygfworld

  1. mygfworld
    It's been a long time since I checked in on this site on a regular basis. I remember people here having a huge wealth of knowledge as far as what is celiac disease and what diseases are related to it. I've been doing just fine for probably 5 years on the gluten-free diet. Now I'm having thyroid problems. I've been diagnosed with Hashimotos and they are still...
  2. mygfworld
    Based on the problems that I have had with school systems, I would insist on the formal biopsy diagnosis followed by a challenge. It amazes me the number of people who assume I put my kids on the gluten-free diet because I felt like it. Biopsy is the gold standard. I have biopsy positive. One child was inconclusive biopsy but has clear reactions to gluten...
  3. mygfworld
    I have to have a barium study done. Does anyone if barium is gluten free? Or which brands are gluten free??? I called and asked, but I don't get the impression they understood what I needed very well. The nurse kept telling me what it tastes like. Makes me very nervous. Hoping it goes well. Can't have a reaction now.
  4. mygfworld
    Hope you're feeling better. I take benadryl and Tylenol for reactions. It does NOTHING for the reaction, but it makes me sleep more and feel a little better. Next time take child and the far and go out to do something fun while they insist on having a gluten fest. It's better than hiding and being miserable. As for hubby, have a long honest discussion...
  5. mygfworld
    I have celiac and now hashimotos. The dr is still doing testing to see bow much it is growing and cancer etc. I've been on Synthroid for over a year now. I still have significant pressure and discomfort on my neck. Is this normal? One possibility is to have the thyroid removed or "killedoff". Has anyone had either done? Any long term problems with having...
  6. mygfworld
    First let me say that the diet gets easier for the family and your daughter and grieving is normal. My oldest grieves at the beginning of everyschool year and then we are fine. I think explaining why she is different is the problem. My children were diagnosed much younger. I have a very different perspective since we have anaphylactic food and medicine allergies...
  7. mygfworld
    I've been having thyroid problems for over a year now. It looks like the dr will be removing my throid. Cancer is suspected. I'm waiting for the official test results. I already have Celiac and Hashimotos. It seems other autoimmune diseases have started up too. Feeling like I'm falling apart. So depressing. I'm hoping someone can give me some advice...
  8. mygfworld
    I must be going about this the wrong way or something. The school is great in all other areas. I have been told very clearly that a 504 is not an option - by the school. But the teaching with food is just too much. The kids are rewarded for anything and everything with candy, except my child who gets a sticker and is not happy. She has a safe food box which...
  9. mygfworld
    I don't know your whole story, but I understand the troubles you're having. Celiacs is hard enough without throwing in new diseases and for you parasites. I've had several big health issues happen over the years. I get very depressed and obsess over the latest disease. It takes me a while to come to terms with the new issue too. The very best thing you can...
  10. mygfworld
    glad to hear tge gluten-free diet seems to be helping you. Did you have a biopsy done? I'm a celiac and got pregnant after the fact. The drs watch the babys growth a little more closely, but otherwise it was a normal pregnancy. Turns out that child is aceliac too. The only tips i have for you would be to learn the gluten-free diet well. Be very careful...
  11. mygfworld

    ARCHIVED Taxes

    mygfworld replied to mygfworld's topic in Coping with Celiac Disease

    From all the research I've done, you can't use your HSA credit card to buy your gluten-free foods. So if you could pass along the links that state you can use your HSA account, I'd really appreciate it! Thanks for the info about the tax codes everyone.
  12. mygfworld

    ARCHIVED Taxes

    mygfworld posted a topic in Coping with Celiac Disease

    Does anyone have the link to how i take the cost of the gluten free foods off my taxes. I know it's the difference in the cost of gluten-free food vs the cost of regular food. But I'd like to see the actual info on how to claim it on my taxes. Thanks!
  13. mygfworld

    ARCHIVED What A Let Down

    mygfworld replied to jenngolightly's topic in Doctors

    I've never understood why they do skin tests on some people and RAST tests on others. I've always had the skin tests. Others i know always have RAST from same allergist. Both are accurate. If anything, i think the RAST is more thorough and more sensitive. They should be able to look for more allergens through the blood test. Sorry you didnt get any answers...
  14. mygfworld
    When i was first diagnosed, i bought the food lists from clan thompson. I liked having little booklets that covered groceries, medications, over the counter meds, and restaurants. You and your sister might find buying a food list will help get her started on this diet. Within a month, she will have a much easier time shopping for groceries and coping with...
  15. mygfworld
    i've heard that false negatives are common in young kids. My yougest was tested and biopsied as a 2 year old. The results were "inconclusive"! What in the world does that mean? Dr said shes negative and fine. No more testing to be performed. So i made her gluten-free/cf against drs orders. Within a week she showed signs of improvement. I wish i had a positive...
  16. mygfworld

    ARCHIVED How Do I Prepare?

    mygfworld replied to jenngolightly's topic in Doctors

    Sometimes a food log for 3 days to a week is very helpful for doctors. Just log everything you eat and any reactions you are having. Bring a good book or music. You may want to ask if they will do any allergy testing during that appt. If so, avoid any benadryl for a few days before. BTW I have gone thru various stages of health and new diseases. It's...
  17. mygfworld
    My daughter was also not growing, rashes, massive diahrea, diaper rashes that never heal, huge appitite, always hungry etc. Drs never wanted to test for celiacs,although ih have it. Finally she got a biopsy which came back inconclusive. Against drs wishesi made her gluten-free/cf. She reacted positvily to the gluten-free diet. Dr finally agreed after 6...
  18. mygfworld
    We use the dough from Discount School Supplies. It's a web site just google it. The dough is gluten-free. It's a big tubthat lasts forever and works well in the playdough presses and toys. RE why you can't use real playdough. Lots of celiacs can touch gluten without problems. I'm not one of them. I can't touch the stuff. My daughter got very sick glutening...
  19. mygfworld
    If you are getting sick 4 out ofthe last 7 weeks, another thing to lookinto in additionto the crumbs is a change from a manufacturer. Some of the worst contaminations for me have come from drinks and vitamins. So it might be worth the effort to recheck all the products you use. Check everything and remove the questionable things for a few weeks. My husband...
  20. mygfworld
    I can't tell you to make your baby gluten-free from day 1 or not. I was a diagnosed Celiac when I had my second. At that time we decided to follow the main stream gluten life for her. It didn't work out for her. It was hard to get a dr to diagnos her beside the obvious symptoms. Very common for drs to question why she is gluten-free, does she have a biopsy...
  21. mygfworld
    We also have many happy stories. There will always be frustrating events at school or with family, but overall life is great. I was very sick and it took 3 years to get a diagnosis. When our baby was constantly crying, diaper rash, hungry, not growing, we knew the problem. She is also gluten-free. We also have other food allergies too. It's hard, but we make...
  22. mygfworld
    Maybe some of the old pro's can chime in about the ways they got family and friends to listen to what Celiacs is and why they have to help maintaining a safe household environment. I was very very sick before diagnosis, so it was easy to see a change in health for me and my husband. Still it took us a while to figure out what would work for us. Basically...
  23. mygfworld
    Sorry to hear you are having trouble. I have a mixed house and it works for us. We have multiple food allergies besides the gluten. Try picking up crumbs with paper towels not a sponge or dish cloth. Use a scrub brush to wash dishes. Wipe down the counters before you cook. Have your husband wipe up when his is done too. Be very careful about double dipping...
  24. mygfworld
    I'm wondering if I need to have my 10 yr old tested for celiacs. She has always been the tallest. Now many girls in her class are taller than her. She is super skinny. Always thin. Always had dairy issues and constipation issues. I have celiacs. One sibling has celiacs. The big alarm item for me has been that she is wearing the same size clothes and sneakers...
  25. mygfworld
    Does anyone know if Celiacs can use their Health Savings Account (thru work) to buy gluten-free foods? I would think that we should be able to since the food is medically necessary. Any ideas where to look for the answer?
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