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beth01

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

Everything posted by beth01

  1. beth01
    I had lip swelling like that, but it was years ( probably 15+) before my diagnosis. Bothered me for about half a year where my lip would swell for no reason and then back to normal again. Hasn't happened since. Never did figure out what was causing it.
  2. beth01
    I feel better than I did pre-diagnosis. I used to get migraines really bad and have only had one in a year since going gluten free. I also had a lot of joint, muscle, and nerve pain that has improved greatly in the last year. I was frustrated at around the same time you are, you think you should be feeling better, but it takes time. Most people go through...
  3. beth01
    I am also the first in my family with a celiac diagnosis, but there have been two others diagnosed since, my daughter being one of them.
  4. beth01
    I wouldn't worry if you have only been gluten free for three months. Like Bart said, it can take a long time to heal. I am a year past my diagnosis and am still not feeling well, but I was really ill before diagnosis and have been undiagnosed for most of my life. I have multiple food intolerances, soy, dairy and eggs ( I can have small amounts of egg if...
  5. beth01
    Are you gluten free now? Have you done an elimination diet to see if you have other food intolerances? Many celiacs have multiple food intolerances and a food and system diary is the only way to figure them out. If Paleo made you feel great, I would go back to paleo
  6. beth01
    I'm with StephanieL, how can a doctor un-diagnose someone after two years? Get a new doctor. Why subject your daughter to all the misery when you already have a diagnosis? I wouldn't do it to my kid and she hasn't had a biopsy and is seen by a Pediatric Celiac Specialist at Mayo clinic. Just my input
  7. beth01
    I'm not a doctor, just a Celiac. I wonder why your doctor doesn't have you getting a biopsy right away? After three months of gluten free, to do a gluten challenge after that.... you will feel like absolute SH*T. I would start eating gluten again and ask for a biopsy sooner, but see what others say.
  8. beth01
    I know gluten can be scary, and it's a scary thing when our children get sick, one thing you can't do though is live your life in a bubble. Celiac is a one day at a time sort of disease. Most children do wonderfully once on a gluten free diet. Most haven't had the chance to acquire all the other crap that goes along with being undiagnosed for years and...
  9. beth01
    My daughter was diagnosed 10 months ago ( I, a year ago tomorrow). Her main symptom was passing out cold for no reason. She also had lots of bouts of "stomach bugs" when her brother didn't. Most times she would tell us she puked in the middle of the nights. She also complained about tummy aches. They were never all very frequent, until the passing out...
  10. beth01
    I have to agree with Gemini, get a different doctor. Ask for a referral to a pediatric gastro specialist that deals with Celiac. If your doctor won't do that, find a ped who will diagnose with the blood tests results alone. Any information you look up online about the EMA tests, it tells the specificity of the tests. Print off information to take in and...
  11. beth01
    I haven't been able to find any either Ruth. I did look up a few recipes a month or so ago, but haven't gotten around to making any of them. I have 5 fish tanks in my house though, with a lot of various fish and crabs, that's a lot of fish food to make lol. I think I'm going to have to though, I'm still having issues and that's the only gluten in the house...
  12. beth01
    Good about the mistype on the platelet count, I was worried. If on his repeat UA there wasn't any mucous, I wouldn't worry about it. If he didn't properly wipe, if it wasn't a "clean" catch, it can be present and is actually present in a lot of urine samples. We listed mucous as small/medium/large amounts present. The calcium oxalate crystals are the most...
  13. beth01
    My cats eat gluten free, the fish don't. My boyfriend feeds them, thankfully. I have looked into making fish food, not quite sure if I want to go that route or not.
  14. beth01
    Has his platelet count been addressed? With a platelet count over a million, he should probably be seen by a hematologist. His MCV and MCHC are low based on the fact that his hemoglobin is low, they're calculations. His MCV is the size of the cells, slightly microcytic ( small), and based on the MCH, have more central pallor ( there is usually a faint indentation...
  15. beth01
    Can't dispute that. I think there is a lot that will be discovered about celiac now that it's the forefront of every discussion out there known to man due to the "fad" of gluten free. Just look how many AI diseases there are that they can't isolate a linked gene from.
  16. beth01
    I call the manufacturer on my medications. Those lists aren't updated everyday, and ingredients can change from lot to lot. One of the lists posted hasn't been updated since 9/13. That's over a year old, would you want to trust the info from a year ago?
  17. beth01
    We were going to go last time I was up to Mayo, but we had problems with our GPS taking us all over town before we even got to the clinic ( was my boyfriends first time in the area) and we were both very frustrated, decided to just come home. I told Jeremy we should go some day when it isn't the middle of the day since it is so close to the hub-bub that is...
  18. beth01
    Are you talking Twigs? We are going to make a trip there some day soon.
  19. beth01
    If you don't need a diagnosis, you could always go gluten free and see if it helps.
  20. beth01
    Sorry I can't be of more help. It all depends on the instrumentation and methodology they are using for testing. Even here in the states, it differs from Lab to Lab.
  21. beth01
    No help from me then. I would ask for verification from a doctor as to what those results mean. If you are deficient in IgA and IgG, those tests are invalid
  22. beth01
    It should look something like Tissue Transglutaminase IgA 37.4* < 4 Negative *Positive value indicative of Celiac Sprue Total IgA 143 80-450
  23. beth01
    I would ask for a official copy of your lab results. Those results make no sense to me and I was a lab tech for 16 years.
  24. beth01
    From the results posted, it looks to me like you are negative for celiac but also deficient in IgA and IgG. I can't tell for sure though until you can post the actual whole lab results with reference ranges. < is less than > is greater than
  25. beth01
    I think you are searching for something that right now just does not exist. Time is the only thing. You can keep well hydrated, some use things like Dicyclomine ( helps with cramping), anti-nausea meds, pepto, immodium. There is no magical pill. Sorry.
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