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Lesliean

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

Everything posted by Lesliean

  1. Lesliean
    My dream is that doctors will care and read these symptoms and start looking for them in their patients. Even the 'usual' ones are good to hear about as this board gets questions every day about them being ok to have before and after. Leslie You all are sooo funny
  2. Lesliean
    Yep, I was gluten-free for 2 and 1/2 months and high normal on Enterolab's tests. I e-mailed Dr. Fine the day I received his report (saying that while my report was within normal I could try a gluten-free trial if I was having symptoms) to get his recommendation. He wrote back that day advising me to go gluten-free because I had such a resolution of symptoms...
  3. Lesliean
    I've been amazed at the scope and breath of symptoms that have gone away since going gluten-free and was interested in some of your symptoms that have resolved with the GFD. Some of my more unusual ones are: (complete resolution of)asthma, swollen throat, congestion, loss of voice, dry eyes, yeast infections, hypoglycemia, strange length of periods, neck...
  4. Lesliean
    Kaiti is right, the GFD is the only cure and I didn't mean to imply otherwise. I shouldn't be allowed to use a computere after 10PM! Still can't get the brain.hastypastry.net to open so I'll let you know what this far off dream note says when I get a chance to copy it over for you. I'm just glad there is a cure-the diet- and that I am not taking a medicine...
  5. Lesliean
    Welcome to the board. I find it so comforting to know so many people here who are going through the same thing as I am. I had constipation for years and its my early warning symptom for when I accidentally eat gluten. Yeast infections in females is common in Celiacs who are not gluten-free and other symptoms of Sjogren's syndrome. I was careful to take acidopholus...
  6. Lesliean
    I always wonder when they say some people get Celiac disease who don't have the genes because there are documented cases, around 2%, who have HLA DQ1 or DQ3. While those with DQ1 and DQ3 generally present with neurological symptoms and often gastro symptoms, they often flunk the gold standard biopsy test. (If you look at gluten ataxia which is resolved with...
  7. Lesliean
    My symptoms where gastrointestinal and also further up, including swelling in the throat and mouth, trouble breathing, dry eyes, low blood sugar, back and neck pain, to name a few. My symptoms started going away immediately but I was a amazed when symptoms I did not realize were connected to gluten went away as well, like low blood sugar and neck pain and...
  8. Lesliean
    You sound like you are on the right track to me, for what's that worth! You are going to ask your doctor about pursuing this possiblity as well as ask what else could be causing your symptoms. You also know that once you go off gluten the tests will become negative too. So, good luck to you! Here is a bit of a ramble on the test you had, the need for more...
  9. Lesliean
    I was worried for you, celiac3270, when on a previous post you referred to having surgery(glad you are ok). I really enjoy your educated and mature posts. And to find out you are, ah, of the younger generation, is great. I like to think of people like you being in charge of things when I am old and gray, ah, older and grayer. Leslie
  10. Lesliean
    My heart goes out to you. At that age it must be so hard to check everything they touch and eat. At school I hope the teachers can be vigilant too about the food and reporting to you things they touch at school so you can check. Here is info on playdough: Open Original Shared Link And more on paints and Crayola products: https://www.celiac.com/st_prod...
  11. Lesliean
    Being weakly positive is like being somewhat pregnant. You either are or aren't. And the antibodies start dropping immediately on a GFD. The next step would be the "gold standard" biopsy and I believe it is starting to be questioned as a neccesary test for diagnosis. It is sometimes like looking for a needle in a haystack and those who are positive on...
  12. Lesliean
    I shoulda' known!!! Sick the next day after 2 lemon/lime Alka Seltzers. Called the company and heard the usual, "We don't add gluten but we can not confirm that our raw products manufacturer doesn't add gluten. Would you like a free coupon to buy more?" Yeah, right. Never!
  13. Lesliean
    I hope you are negative for Celiac disease but I was told that and then did additional testing with Enterolab and found to have 2 copies of the DQ1 gene. The other gene that causes Celiac in 2% of the cases. It causes neurological presenting Celiac more often but because it manifests outside the gut it often tests negative on the "Gold Standard" biopsy, not...
  14. Lesliean
    Here is one more: Open Original Shared Link
  15. Lesliean
    You all covered the dizzy end so well I know you are on the right track. But to Niteyx13 's mom about the carbs. There is a world out there of carbohydrates that are not gluten containing including: corn tortillas, polenta, corn pasta, rice, rice cakes, rice pasta, sweet potatoes, potatoes, butternut and acorn squash, gluten free breads, nuts, gorp...
  16. Lesliean
    Buluga- Wanted to respond to your question about back pain and GERD. Both are very common. See Open Original Shared Link for some more of the symptoms. Osteopenia, joint and bone pain, arthritis, esophogeal reflux... Now is a time for healing the body. For the skeleton could you have a bone density x-ray to see if you have osteopenia or osteoperosis which...
  17. Lesliean
    Woops-Open Original Shared Link
  18. Lesliean
    It is my understanding that they are available to test Canadians. Should since I am in Alaska, even further than you . Very user freindly system. You order on the net (or I guess by phone although the number wasn't easy to find-I googled to find it). Give a credit card number, it comes in the mail, give sample, call for pick up, and the hard part is waiting...
  19. Lesliean
    It is my understanding that they are available to test Canadians. Should since I am in Alaska, even further than you . Very user freindly system. You order on the net (or I guess by phone although the number wasn't easy to find-I googled to find it). Give a credit card number, it comes in the mail, give sample, call for pick up, and the hard part is waiting...
  20. Lesliean
    Enterolab took the whole 3 weeks to get back and I actually called at that point and a very nice and personable man said it was ready and sent it to me that afternoon. Hard to wait, but aren't you glad you did it? No where else do they check for DQ1 or DQ3, the neurological symptom genes, and the sensitivity of the blood work is not good enough to trust...
  21. Lesliean
    I'm sorry to be confusing and thank you for your responses. The gene is the non-celiac gluten sensitivity gene DQ1. But what does that mean?? I read it causes neurological problems but often does not qualify as Celiac Disease becuase it does not usually cause flattened villi but I was having a lot of symptoms. Do you know anything about DQ1 and the importance...
  22. Lesliean
    Enterolab came back saying I have 2 copies of the gluten sensitivity genes but I have read enough Hadjivassiliou articles to know we neurological presentors have just as many problems, need a GFD just as much, but often test negative becuase the primary damage is not to the gut (although at day 72 gluten-free all my gut symptoms are gone and they were terrible...
  23. Lesliean
    Results are back: HLA-DQB1*0501, 0604 Serologic equivalent: HLA-DQ 1,1 (Subtype, 5,6) You have two copies of a gene (HLA-DQB1) that predisposes to gluten sensitivity Help? What do you think? Antibodies and absorbtion were right below cutoff but isn't this the neurological presentinig gene that Dr. Hadjivassiliou discovered? Do I need to commit...
  24. Lesliean
    When I was gluten-free for 1 month my eyes became wetter. I didn't know my eyes were so dry till I noticed my contacts weren't sticking to my eyes in the evening. There are so many symptoms that improve. It seems symptoms of Celiac Disease vary tremendously from person to person and don't always fit the typical symptom list when you google it.
  25. Lesliean
    Wow, cdford, you are an inspiration to me!
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