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Everything posted by Jai

  1. My daughter is now 5 1/2 and I have suspicions of celiac disease. My mother has it, and I have "suspected" celiac and have been 100% gluten free for a year and half. My daughter was tested at 2 years old due to family history and her small size, but the bloodwork was negative. She is still extremely small for her age, maybe moreso now than she'd been at 2. She has phases of diahrea, but then it always passes. She complains of tummy pain, but it always passes, lethargy at times.... She's not "sick" like my mom and I were, but I always question it with her... If her bloodtest was negative 3 years ago, is it worth redoing? Can it change? Thanks for you help!
  2. No. I'm the only one in the house. So, the test should be accurate....as accurate as they are, anyways!
  3. Jai

    Otc Sleep Aid

    I'm looking for a gluten-free OTC sleep aid...besides melatonin, since I'm taking 9mg and still lie awake for hours. I used to love Nytol, but they say that although no gluten is added, it's not certified gluten-free. I was actually on oxyzepam to help me sleep, but it no longer works. A bit of history....prediagnosis I slept fine, the first couple of months gluten-free I slept fine, and now suddenly it's an issue. I've had other phases in the past, but I don't believe it's related to gluten....I know it will pass, but meanwhile I need some sleep....well, more than I've been getting!
  4. depends how long you have to wait for the biopsy. However, a false negative biopsy is more common than a false positive blood test. Depends on the severity of villi damage....you can have symptoms even before the villi are severely damaged...
  5. oh well, if you weren't eating gluten, then there you go! You have to be in order for the biopsy to be accurate. And do you feel better when you stop eating gluten? Do you need more of an answer than that? I've had a top GI tell me that clinical results are worth way more! He said negative biopsy and all, he considers me celiac...
  6. Well, I had an "inconclusive" blood test and negative biopsy (of course this was done several months post gluten-free) We had suspicions and there was no way I could continue to eat gluten while waiting for the biospy (gotta love Canada's healthcare system!) My mother has celiac and I had 100% the same symptoms as she had. I eliminated gluten and s...l..o..w..l..y but surely I got better. My gastro felt confident in saying I had celiac based on elimination of other diseases and family history. Tests are not perfect! Despite my results I will NEVER eat gluten!
  7. Hi Sorry about your struggle. I was in a similar situation where we did not have the 100% YES you have celiac diagnosis. Luckily, my husband was supportive none the less and often believes it more than I sometimes do.... I also have to family history, and symptoms, but inconclusive blood tests. Do some research on the internet about false-negatives results, clinical trials (if you stop eating it and get better, there's your answer.) It's too bad that he's not more supportive on his own, but work at it. Prove it to him! And I say don't wait to go gluten-free. Everyday you keep eating you're losing a day towards your full recovery! Good luck!
  8. I'm so tired of being out of breath. I've been gluten-free for 5 months now and it has definitely improved, but still randomly, I get so out of breath from very simple things...sometimes for no reason at all. I used to be an athlete and now 1 flight of stairs and I'm winded. I'm 33 years old, healthy, non-smoker. I'm tired of this. Am I alone?
  9. Jai


    well, it is low, but not enough to treat...and it's always been low. I think that as I continue to recover/heal, it will go away, too....I hope anyways.
  10. I need to have the colonoscopy done anyway, so I called the Dr today, and they said that he would see it, so just wait the week until the colonoscopy and "while he's there" he'll keep an eye out for worms, too. Then we'll proceed from there. I guess if I do have them (please no!), what's another week?! the joys...
  11. Didn't know which category to put this in..sorry. I'm just wondering if a colonoscopy can detect worms/parasites? Or will the cleanse before get rid of them? Or will it cause them not to show in the colonoscopy, but still reproduce after???
  12. I will discuss with my Dr next time I see him for sure. It's just that I'm having a colonoscopy done next Thrusday and that's when I'll see him next...I didn't suspect worms (or at least not as seriously) when the colonoscopy was planned...
  13. Jai

    Sick And Miserable

    it's terrifyting to get get sick after getting better. I had what turned out to be a virus mid-October and I absolutely freaked out...thinking that I was headed back to where I'd been before eliminating gluten. It really messes with the mind. Hopefully rest and time will put you back on track.
  14. Wow. What a story. My understanding is that to do a gluten challenge you must eat gluten for 8 weeks. 8 weeks is long enough to get very sick again. That is why, in my case, my Drs agreed that this was unnecessary. My bloodwork, which was done while technically still on gluten (although, I'd hardly eaten for a week, had diarhea 8x/day and was dehydrated) came back negative. But, since I immediately went gluten-free after the blood test and it took over 3 weeks to get back results, I'd had enough time to see improvement (not one of those miracle stories where I stopped eating gluten and was "all better" within a week) but enough that we all decided heck no to a gluten challenge! My mom was also diagnosed with celiac 4 years ago... Regardless of what you both decide for traditional tests, I would absolutely do your clinical testing on a gluten-free diet. Of course your mom seems like she needs more help than just that at this point. Good luck and stay strong!
  15. SO good to read this! I've become a hypocondriac (no idea how to spell that!). Some things have been real and terrified me thinking that something else was wrong and some things I think I'm bringing on myself with all the anxiety. Right now, when I'm being logical I know that I feel fine, my only symptoms are caused by my own anxiety about not feeling well! I figure that each good day that goes by I get a little more confidence in my body....
  16. Wow. Sorry about your struggles. I have no answers really, just sympathy. I went gluten free in June, and initially improved, but have had abdominal pain resurface and am in the process of trying to figure out what's going on. There doesn't have to be only one thing wrong! What about other food intolerances? Soy? Corn? Eggs? What is she eating, when she eats? I can sympathize with the fear of eating! Been there, actually I'm still there. Let me just say that I love rice! Nothing bad ever happens when I eat rice I wish you and your family strength and luck!
  17. I just realized today how much I miss fajitas! mmmmmmm....fajitas. Anyone know of some good torilla shells? I tried one brand that was basically like eating plastic, then I realized that I was supposed to heat them up. Then it was like eating warm plastic!!! Help! I really want some fajitas
  18. I"m in Canada. Not sure if I can get any of that here! I'll definitely try to make my own. I now have a weekend project! Thanks!
  19. Jai

    Banana Allergy?

    I have many fruits that do that to me...didn't always happen, but started about 5-10 years ago. Green apples, peaches and cherries are the worst. I also can't eat bananas, but that's because they kill my stomach. I don't know if it could develop into more, but I wouldn't test it! I've never been "tested" or seen a Dr about these things, I just know to avoid them...
  20. Jai

    Help - Doctor In Ontario?

    Dr Campbell, Dr Campbell, Dr Campbell! My mom was bedridden for a year and a half before finding him! After many misdiagnosis and nondiagnosis he saved her! I believe he's affiliated with Ajax/Pickering Hospital (part of Rouge Valley Health System). I can get more info if you'd like. Good luck!
  21. Could be anything. I'm driving myself crazy thinking if it's one of the meds I was put on, raw veggies, dairy....or STRESS from trying to understand it!
  22. I'm just wondering what's the time delay in reacting to lactose. Is it amost instant? Or can it be up to 24hrs later? Having major episodes of diarrhea the past 4 days, even though I'd been stable for a while. Trying to figure this out...
  23. Thank you. I really have no idea what it is. I had cut out lactose, then was fine reintroduing, but each time I have a relapse or episode, I cut it out again! I'm even wondering if it's not a virus or something that I may have. I never get fully better for more than a week at a time before something else comes up. It's such a guessing game.
  24. Gluten free diet can't hurt unless you think that you may proceed with the biopsy eventually. If you feel better gluten free, you have your answer. Blood tests are not 100%! Trust me! Clinical studies are worth a LOT! What have you got to lose?
  25. Thanks. I initially eliminated dairy, and successfully reintroduced small amounts, although every time I have a setback I cut it out again. I also eliminated soy as it made my throat itchy when drinking soy milk.... The daycare eats a regular diet, and I believe that I am careful with their food and PlayDoh..... Maybe last night was just a `fluke` who knows... I feel like it`s always a guessing game.