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par18

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Everything posted by par18

  1. par18
    When your doctor dropped you ( mine actually didn't drop me but never saw fit to schedule a follow-up to check the progress) what he/she is really telling you is I have done all I can the rest is up to you. I thought in the beginning the GI doctor could provide "moral support" as far as coping with this lifestyle change. I really don't think the average GI...
  2. par18
    I have to agree. You have already done testing with conflicting results. You still have Celiac related symptoms and have a family history of the condition. I think it is time to see what happens with a diet trial. Tom
  3. par18
    I think even more amazing is that little has happened (in the US) in the way of early dectection and treatment since 1952 when Dr. Dicke made the connection between the grain shortages of WWII and improved health of persons suffering Celiac symptoms. One would think in the 50+ years since we could have improved on the average diagnosing rate of 11 years...
  4. par18
    In terms of treatment there is no difference. The gluten-free diet applies to both. A positive test result should influence you to stay with the diet. I guess the main question is if you can't get a positive test result but definitely feel better gluten-free then what will you do? False negatives are possible but false positives are rare. At some point this...
  5. par18
    Met a young woman in my support group last year. Said that she had been diagnosed as anemic. Doctors gave her massive doses of iron. No help. (In her words she said it almost killed her) Had to go to Duke University to get diagnosed with Celiac. After going on the gluten free diet she was fine. (Must have been the malabsorption=deficient part of the equation...
  6. par18
    I agree. I was fortunate enough to get a good RD my first week on the diet. The thing she did that was so important in my case was to spend the hour drafting up a sample diet on a piece of paper. The reason this helped me so much was I was still in "shock" from the diagnosis and really wasn't thinking that clearly. I followed it in the beginning and it included...
  7. par18
    Actually the disease is pretty smart. It responds to the diet . It is the uneducated masses (including doctors, co-workers, family members and friends) who are STUPID! After all "stupid is as stupid does". Tom
  8. par18
    Was the weak positive the result of a Celiac/Coeliac specific test? If so there is at least the possibility of a sensitivity to gluten. I would wait until after the scope procedure to try anything else at this time. Based on the results of your scoping you can decide on further testing or maybe try the gluten-free diet to see if it helps. Make sure you understand...
  9. par18
    Same here. I always liked naturally gluten-free food anyway. I just eat it a lot more now. I have had very few instances where people I come in contact with make a big deal about what I can or cannot eat. I just try to act as normal as possible and most people don't know the difference unless I am offered something I can't have. I know one thing it's a heck...
  10. par18
    Watching the British Open golf championship this morning. Mention was made of the "undiagnosed" mystery illness of the now famous Frenchman Jean van de Velde. Among the symptoms were anemia and joint and muscle pain. Could it be the elusive Celiac or maybe Lyme? Comment was made that originally the problem was thought to be food posioning (trigger?). Will...
  11. par18
    Hi, The very first paragraph of your post summed up my observation of my symptoms. I really thought everyone got D every now and then. Well I found out on the second day of the diet that the D I had for the previous 8-10 years is not normal. From that point over 2 years ago I have not had a single epispde of the dreaded D. The ability of the body in some...
  12. par18

    ARCHIVED Doctor Northern Va Or Dc

    par18 replied to arlingtonmom's topic in Doctors

    Let me state up front it is not my intention to offend you. If this post does then I want to apologize now. Help me understand something. If you tested positive for gluten sensitivity with Entrolab then why would you not want to see if the gluten-free diet helps your symptoms whatever they are? If you don't want to start the diet because you don't want...
  13. par18

    ARCHIVED Follow-up Blood Work

    par18 replied to Moondanse's topic in Doctors

    When you say diagnosed I assume like me you had a biopsy? I had no blood tests done for Celiac prior to my diagnosis because I was so malnourished that the GI went straight for the scope. Anyway back to your question. I responded so well to the diet I did not get any testing done for the first year except for a bone scan. I attended a talk given by Dr. Fasano...
  14. par18

    ARCHIVED Dr. Appt. Tomorrow, Help!

    par18 replied to melmak5's topic in Doctors

    First off take a deep breath and just try to relax. This is all new for you and there are more questions than answers. Have you noticed any difference since starting the diet? The fact that a couple of products you used had gluten need to be eliminated before suspecting anything beyond Celiac. The most effective thing you can do at this point to make "every...
  15. par18
  16. par18
    I tend to agree with this line of thinking. There seems to be an endless supply of medical terms (along with a corresponding prescription drug) to treat almost any symptom we can come up with. There also seem to be "specialists" in this area. I don't mean specialists in the sense of knowledge but rather those who put patients they cannot cure in one of three...
  17. par18
    Glutino or Orgran. Tom
  18. par18
    To say doctors and labs are not 100% is an understatment. The numbers I have read indicate they are operating at about a "5%" rate! The bulk of the remaining 95% of the undiagnosed Celiacs in this country are probably going to have to figure it out for themselves. The most cost effective way to do this is going to be a positve diet response and then the acceptance...
  19. par18
    In the past 48 hours I have met two total strangers both of whom have gone gluten free without any diagnosis from the medical profession. It was my understanding both did so after doing research on the internet concerning their gastro issues. To me this is very encouraging as more and more people are finding their way to this possible solution on their own...
  20. par18
    [ However, the most cost effective and probably the most accurate way to test for an IgG is doing an elimination diet. It doesn't cost any money or require a visit to the dr.
  21. par18
    Are you sure they stopped carrying them or maybe just sold out. I have had experiences with the Redbridge beer at Walmart. I did not see it in the cooler and asked an employee to check in the back. The person checked and said they did not have any. I did not believe him. I got the manager and he returned with the case I wanted. Most of the average employees...
  22. par18
    The positive diagnosis might help but ultimately it boils down to a clash of wills. I agree that further testing is probably a waste of time and money. If you react to the diet in a positve way then that should be proof enough for "you". I have the same problems as you with a positive diagnosis. If people understand Celiac and it's health risks then they...
  23. par18
    Walter, From the best of your knowledge are you getting "any" gluten in your diet if even by accident. If that is not the case then you need to keep a food journal to see what other items might be causing your diarrhea. I have had no instances of the big "D" since starting on this diet over two years ago. I feel the biggest reason is I am super careful...
  24. par18
    Interesting. Not that you had no reaction but that you say Bud has no wheat. I see you refer to your condition as coeliac so are you from outside the US? If not wheat then what other grain is used with the barley malt to make Bud beer? I once heard that "some" rice was used (because it was cheaper) but could never confirm. I just think if drinking something...
  25. par18

    ARCHIVED University Celiac Clinics

    par18 replied to JamiD's topic in Doctors

    Hi Sue, I just read your post this morning. I met Dr. Alessio Fasano last summer during a talk he gave at the University of Virginia. His talk and his personality were very impressive. What I think a lot of people don't realize is how busy a person he is. The fact that you got to see him at all is impressive. The thing that I have found since my diagnosis...
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