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Deej

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About Deej

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  1. I missed it but I have to say, hurray for CNN and Heidi! It's so refreshing to have Celiac Disease in the mainstream media. I remember when I was diagnosed and how little information there was - it was a very frightening and alienating time for me. And now they're chatting about how to cook for us on CNN. The times they are a changin'.

    Anyone who hasn't already written to thank Heidi and cheer her on, please consider doing so.


  2. This was a very refreshing experience. It seemed to me that Heide and her physician are determined to bring this to the public's attention (and keep it there!). I was so gratified that he had the statistics about how many of us are misdiagnosed (and for so many years!). It was also important that they focussed on the damage that can be done by not being compliant. Bravo to CNN!


  3. Me too. Misdiagnosed with MS. Arrrrrgh.

    Eventually, when I felt I was having a stroke/heart attack I was rushed to emergency where they discovered my B12 level was unbelievably low. Massive B12 therapy. First daily, then every second day, then weekly, now (and for many years) monthly. Diagnosed with pernicious anemia.


  4. The last time I flew Air Canada (which IS the last time I'll fly Air Canada), I ordered the gluten-free meal. When dinner time came, they brought me a regular meal. I told them I'd ordered gluten-free. They told me, um, there wasn't one on board but I could have the extra vegetarian meal if I wanted - it was veggie lasagna. :blink:

    I love to be other places. I hate the travelling. Airlines and airports are the bane of my existence. There is NOTHING to eat. I learned, later than I should have, to bring my own food.


  5. I'm visiting Chicago from Canada - we planned ahead thanks to those of you on this thread and ate at the Adobo Grill last night. It was fabulous. I didn't mind the plantain chips at all - the guac was so wonderful it really didn't matter. I had the Filete al Pasilla and a couple of GREAT margaritas. I was really thrilled because my husband and I were hosting a group of people and they all thoroughly enjoyed themselves and their food and I not only didn't feel left out, but I felt like I got the best meal! Thanks to all of you. This is a great board!


  6. Patti, my experience was similar. I still take monthly B12 shots, daily oral B6 and folic acid. I very occassionally get neuropathy symptoms now (once or twice a year) but there was a lot of damage to my intestine from 35 years of being undiagnosed and misdiagnosed so I guess it's not too surprising that I'm not always absorbing nutrients properly.


  7. Add me to the list. :angry:

    I'm really radical about this. I have come to believe that it is IBS that does not exist, that it is a catch-all excuse and that there is always (always!) a diagnosis that the physician is either too lazy or too uninformed to be bothered to make. Anytime anyone tells me they have IBS I suggest they find another doctor who will order the full range of tests and find the cause so it can be treated.


  8. I've been told (and I think it's right) that I have looked ill my entire life. Gaunt, pale, bags under the eyes (gosh what a picture that paints! :lol: ) and was suspected of having anorexia nervosa on more than one occasion. My experience has been that I have been dismissed, despite the fact that I look ill, as a hypochondriac. Thus all the misdiagnoses.

    As for you being treated less carefully than your wife, my lexperience has been the opposite . My late husband, bless his heart, once shouted at a doctor that if HE had turned up in the doctor's office week after week after week in so much pain and so obviously ill someone would have diagnosed and treated him years ago.

    It's sad whenever any of us is dismissed and I'm sorry to read about your experience.

    I try to be hopeful that the next generation of Celiac's, both genders, will be diagnosed in a timely and humane fashion. I guess that's what we probably all hope for.


  9. I am crying my eyes out reading this thread.

    I have been sick my entire life. As a baby, I projectile vomitted breast milk and formula. As a toddler and child I was in and out of doctor's offices with "tummy pain." My parents were told I was a "sensitive" child and there was nothing wrong. I learned to hide my pain but when I passed out as a teen and young adult I'd be rushed to emergency. I heard every diagnosis and opinion under the sun from MS to "have a baby and you'll settle down" to "you're highly stressed" to Crohn's Disease.

    I had no "young married life" - I spent most of my first marriage with my late husband nursing me, caring for me, as it was all I could do to work (and sometimes not even that) never mind go out, have friends, a life. When he died three and a half years ago, I was overwhelmed with how unfair it is that he cared for me all those years and when I finally get diagnosed and (sort of) well, he died.

    I have never had anything remotely resembling a normal life. Before diagnosis I was labelled (and sometimes believed in the absence of any reasonable answer) that I was a hypochondriac or, worse, that I was making myself sick on purpose. I missed out on dances, parties, vacations - you name it - so severly limited by pain and illness. Post-diagnosis, I have a life but, of course, it comes with restrictions and complications. I can handle those, as much as I rail against them some days, because at least I know it wasn't all in my head, I wasn't a high maintenance princess, stressed type A personality (well, maybe I was, but that didn't make me sick!).

    I hate this disease with every fibre of my being. But I am more grateful than I can say for been diagnosed.