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About mygfworld

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  1. 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 adjusting my thyroid Meds after a year of this. I need some help and advice. I have constant pressure on my throat in the thyroid area. It seems like it's harder to breathe now. I've had several biopsies of my thyroid - no cancer. I just had a barium swallow study. No blockage - dr says all is normal. I don't feel good the pressure is exhausting and very worrisome. The Endocrin dr says my thyroid is fine nothings wrong and go see an ENT. I'm on 75 mcg of levathyroxin. I'm still gaining weight, cold, and miserable. Tylenol and ibprofin Meds make no difference. Allergy Meds make no difference. If it's not my thyroid, what is this problem?? Where should I go next for some help? Any thoughts or suggestions would really help.
  2. mygfworld

    Constant Peeing Symptom Or No?

    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. One symptom is the constant frequent urgent pee.
  3. 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

    Need To Vent

    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 when you feel better and probably at Your home. As for family, some people get itand some people take a long time to realize you are not just being silly. It's not worth your time trying to change their minds. Hope you feel better!
  5. 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 the thyroid removed? Voice problems? Any advice would be appreciated.
  6. mygfworld

    When Teachers Don't Understand Celiac Kids

    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, celiac, severe dairy intolerances/allergies, and a new one we are trying to sort out now. I've found even my very young kids can understand their own diseases pretty well. they have a lot of control in their allergy/ celiac. If they want something that is not safe we find a way to make it. We discuss the "allergies" on a regular basis. I agree with them that it does suck to not be normal like everyone else. But this is how we were made. I can't change it and neither can they. In the event a medication or cure is found, we will try everything we can per dr approval. Until then we stick to our diets. Figure out what your daughter misses the most right now. Then look to this site for good recipes and ideas for substitutes. I'll gladly help. My kids love making candy. We find any excuse to melt chocolate. We love EnjoyLife brand ( gluten-free/cf and nut free) Ifshe is in Brownies, she can earn an allergy patch. Look for it on FAAN. (food allergy and anaphylaxis network) they have good ideas for schools and camps but it's geared toward allergy rather than celiac. It still helps. Regarding school. I have spent years working with teachers, talking, teaching them about the diets, being present for parties, etc. It hasn't worked well. I wouldn't recommend that approach to you. This past year I finally started documenting the problems and scheduling meetings with the principals. I am pursuing 504s for the kids. What I have found is that the schools have a very general concept of the day to day details of living with celiac. So buy books and slowly educate the principals about your daughters new condition and how it will impact her life at school. Areas of concern. Art supplies? Food based learning drives me crazy! Lunch room. Treats and food rewards handed out by all of the specials teachers. Then come the reward parties for good citizen, reading enough, etc. I am optimistic that next year will be better. For your daughters classroom next year, bring in a safe snack box. Explain to the teacher that your daughter needs access to these snacks anytime food is being used or eaten in the classroom. Explain to your daughter that her job is to tell you everytime she uses something from the box and everytime she is not allowed to get to herbox. If necessary, leave a stash of candy in her lunch box and in her book bag. She'll love it. For next year find out which teacher at the school handles the food allergies for your daughters grade. Look to local support groups for help. We found having a kid with any allergies will help your daughter adjust.
  7. 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. How bad is the surgery? What is the most helpful thing for recovery? How do you cope? Thanks!
  8. mygfworld

    Pros And Cons Of 504 For Elementary School Needed

    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 contains candies and treats for her, but they don't always use it. They learn math with food. WHY!!! Count and measure with candy, cereal, etc. Read a book with food mentioned? Then the next activity involves eating that food from the book! WHY!!! Classroom projects like the arts and crafts type of stuff involve food. The one hundredth day of school events are all about food for over a week. Yes she got sick from that great event! Does no one else have these issues at school? The subs terrify me for the exact reasons Mom2Katry stated above. I can deal with the two holiday parties per year. I can deal with the kids birthday cupcakes in class. Really I just wanted the 504 so learning with foods would be eliminated from the classroom, lunchroom would be controlled better, rewards would be gluten-free/CF for class or not at all, and nurse, teachers and subs would be well informed of what issues are in the classroom. Didn't seem like that much to ask for to me. Am I asking for too much? thanks!
  9. 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 do is focus on getting healthy right now. Get medicated for the reflux. Get rid of the parasites and whatever else is going on. Then once you're healthy, start going back to the things you love to do. Get involved and start focusing on other things. For my kids and myself (all celiacs) i try very hard to never say we can't go somewhere or do something because of food. Sometimes it's awkward but most people understand or ask questions. Those who say something rude are clearly not going to be friends anyway. Hope you start feeling better soon!
  10. mygfworld

    Any Mums To Be With Celiac?

    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 on the gluten-free diet while pregnant. It's horrible to be pregnant and then miserably sick from being glutened and it's really not good for the baby.
  11. mygfworld


    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


    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

    What A Let Down

    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 today. Good luck on the results.
  14. mygfworld

    Feeling A Bit Frustrated

    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 the diet. BTW, it's nice to hear that you are trying so hard to help her get started. Many of us celiacs have the hardest time with our family adjusting to the new lifestyle.
  15. mygfworld

    False Negative Tests In Children Under 5

    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 biopsy for her. It would eliminate the drs questioning why i made her gluten-free/cf. She reacts to gluten and has improved greatly on the gluten-free/cf diet. For your child, if the blood test results are negative, you can have gene testing done. if the biopsy was negative, you can also just make the child gluten-free for a few months and look for improvements or reactions. Good luck