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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    That's why it is always a good idea to bring a bit of food with you or eat before you go. It is also a good idea to ask what is being served when you get the invite so you can be best prepared. That must have been quite disappointing for you but hopefully you were able to enjoy the company and conversation.
  2. ravenwoodglass
    Perhaps because your doctor like many doctors consider a low positive a negative. When you see the GI you should ask him to run a full panel including the DGP and total IGA. Yes celiac can cause cramping within a short time of eating it. That was the case for myself when I was eating it daily. I had many interupted meals and wouldn't eat unless very close...
  3. ravenwoodglass
    I wonder if the negative is a typo? Did your doctor do a total IGA? If your total IGA tests are low then that would give a false negative for the IGA related results on a bloodtest. It looks to me like the IGG is above 100 which would mean that the abnormal result was a positive test? Since you are having the endo make sure you don't go gluten free yet....
  4. ravenwoodglass
    If there were a lot of gluteny snacks like crackers, cookies or such they may have been CC'd also. As was mentioned some of us do have delayed reactions so it may have been something that got you from the day before or the day before that.
  5. ravenwoodglass
    Your IgA was positive. What you do now is the diet. Since you have positive blood work after you have been gluten free for 6 months or so have the blood test redone. Chances are that your antibodies will have gone down and that combined with your relief of symptoms the doctor may give you the 'official' diagnosis.
  6. ravenwoodglass
    You have been through a lot. You should ask your doctor for a full celiac panel while you are still eating gluten. That is a good place to start. They may also want to do an endo on you. I don't know why doctors don't just routinely do one when they do the lower scope when folks have had stomach problems for years. Yes it is possible to be celiac from infancy...
  7. ravenwoodglass
    If she is already gluten free and feeling better, combined with those test results, a new GI isn't really going to be of much help unless you put her on gluten again for a couple months so they can biopsy. Even back on gluten and feeling ill she may still have a false negative with the biopsy. You don't need a GI to test the other family members your regular...
  8. ravenwoodglass
    Thought this was an important recall to post, Pfizer unit recalls two possibly mislabeled drugs "CHICAGO (Reuters)
  9. ravenwoodglass
    I think you have a good plan there. Young children do have an even higher rate of false negatives than adults do. It isn't going to hurt to try the diet strictly for at least a couple of months. Since celiac can also effect the brain and ability to learn and mood you may also find less temper tantrums and fussiness after she has been on the diet for a bit...
  10. ravenwoodglass
    If you react strongly to adding gluten back in let your doctor know right away. When I was diagnosed I was under treatment by my allergist, I show false negatives in blood work, anyway the allergist had me on a very strict elimination diet and I added gluten back in as the second item. I had been gluten free for about 3 weeks at that point. I became very...
  11. ravenwoodglass
    I would have to say I am at 98% after being strictly gluten free since 2002. My horrible digestive issues went away fairly quickly but other stuff like my arthritis, nerve and brain issues took a little bit longer to resolve.
  12. ravenwoodglass
    It looks like these results- DGP IgG=4 + (range <1.3) DGP IgA=6 + (range <2.9) are positive and since these are the newest and best blood tests for celiac IMHO you are doing the right thing by having her go gluten free. It would be a good idea to test everyone in the family now.
  13. ravenwoodglass
    You could just get a bottle of potato vodka, put some in a jar with some fresh mint leaves. Just don't get pulled over for a breathalizer soon after the spitting.
  14. ravenwoodglass
    My dentist who is very gluten savvy recommended Act Alcohol free. I haven't checked it recently though as I rarely use mouthwash.
  15. ravenwoodglass
    Glad to hear it went well. Hope the wedding is a wonderful experience for all as well.
  16. ravenwoodglass
    Yep, NY. A pack of our brand is almost 10 bucks but the pouch is only $13. Perhaps once you get the health issues under control you will be able to quit for good. Oddly enough there was a study done that showed that smokers tended to have the IBS type issues of celiac hit later than non-smokers for some reason. Some of us have even had celiac triggered by...
  17. ravenwoodglass
    The name of the company that makes it should be on your bottle. Most likely in really, really tiny letters. If it is not there call the pharmacy and ask for the name of the company. Then do a search using the company name and the word contact and you should get a phone number for them. Since wheat starch is considered gluten free I don't ask if meds have...
  18. ravenwoodglass
    Neuropathy is not uncommon with celiac. I had it beginning in both hands and feet and it moved up the legs and arms by the time I was diagnosed. They did surgery on one hand because they thought it was carpal tunnel. The idiot doctor even chopped off a muscle he thought was overdeveloped. It was overdeloped because I was an artist and worked with woodcarving...
  19. ravenwoodglass
    It can take a couple of weeks to get over a glutening. I do seem to get 'stuffy' ears when glutened along with a bit of the ringing, I think it is a result of the inflammation. Doctors can usually tell when you have an ear infection. In which case they would prescribe antibiotics. Do make sure the ones you got were gluten free. If you took 'left over' antibiotics...
  20. ravenwoodglass
    Yes you can have celiac and still test negative. If you are doing well on the diet you may want to just stay on it. If you feel strongly that you cannot stay gluten free without a diagnosis then you can do a 3 month gluten challenge and load up on gluten and get retested. If you have been gluten free for any length of time and you need to be gluten free then...
  21. ravenwoodglass
    Stomach troubles, rash, joint pain, trouble concentrating are hardly asymptomatic. And the trouble concentrating is a sign of brain impact. Actually neuro issues can reverse, at least to some extent. It does take a very long time though. I went from not even being able to read or walk without falling, and having extreme memory issues and issues with mood...
  22. ravenwoodglass
    I agree, no reason to blame yourself as you have no control over your genes. I have to wonder if in some cases of autism, the ones that respond to the diet, if the autism is a result of the antibodies action in the brain. Not all cases of course but I have noticed that some of the autistic type of behavior in the folks affected with Aspergers in my own family...
  23. ravenwoodglass
    Hopefully the doctor took more than one biopsy for celiac. He should have taken six from different areas and even then you can have a false negative. Have they done a celiac panel blood test on you? If they have then you can go ahead and do a trial of the diet as that is needed no matter what the test results say as false negatives are common.
  24. ravenwoodglass
    I too am very anxious to get out in the garden again this year. We had two whole days where it was wonderfully warm, well it was in the 50's anyway I have a raised strawberry bed that was woefully neglected last summer and fall cause I was too busy studying. Last fall I figured I would have to take it out and restart but on one of those days I went out...
  25. ravenwoodglass
    I am so sorry you are going through so much. If you are consuming soy have you tried eliminating it? Are you being really careful about cross contamination? What is your diet like? Are you going with mostly unprocessed foods? If there is no reason not to take it you could try some name brand Pepto Bismal liquid for the stomach pain. I think it may be helpful...
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