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sbj

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Everything posted by sbj

  1. sbj
    I don't mean to discount the importance of patient knowledge - especially about their own condition. I have some experience of my own with medical misdiagnoses and doctors not listening. My aim is to urge testing if appropriate for the situation. Use your doctor wisely - in addition to listening to your own counsel. I haven't been here for too long but...
  2. sbj
    Jason - bear with me - some sincere advice. I notice that you write about an interesting family history: "My great grandmother had colon cancer, my grandmother died from an undiagnosed stomach problem and my mother has diverticulosis and IBS, so whatever I have is definitely in the family ... My mother is stubborn and wont get tested ... My cousin has...
  3. sbj
    Fiddle: Yes, we are definitely on different highways here. I appreciate the opportunity to have this discussion and exchange opinions. I don't expect you to change yours regarding celiac disease and gluten intolerance being the same thing at different points. I'm saying that you only have celiac when there is an auto-immune response (as Tim explains...
  4. sbj
    Gosh veggie - I think you are in violation of one of the board rules (but I don't mind). I believe one of the purposes of a forum such as this is education, no? That's why I found this forum when I was first diagnosed - I had never heard of celiac disease before two months ago. I am trying now to learn how to live my life so as not to put myself in danger...
  5. sbj
    Fiddle: Also, "Does that mean that first they didn't have celiac and then they did 6 months later?" Yes, it is quite possible that they didn't have it 6 months earlier. There's another poster here who is quite adamant about reminding people that celiac disease can occur at any moment and be triggered by a variety of things. I certainly agree that we...
  6. sbj
    Hi Fiddle ... Just an FYI - my above response ws not directed at you. The thing is, the celiac blood panel correlates to villi damage even in the absence of a positive biopsy. Right? That's why I think celiac is diagnosed based on either a positive bood test or positive biopsy and resolution of symptoms with gluten-free diet. Isn't the hallmark of...
  7. sbj
    Hi Guys! Do either of you think that there is any difference between celiac disease, gluten intolerance, and wheat allergies? "If any of these diagnostic tests is positive, then the patient has wheat disease .....of course." That's simply not true. Celiac disease requires either a positive blood test or biopsy in addition to resolution of symptoms...
  8. sbj
    At the risk of starting some kind of flame war - which I sincerely hope does not ensue - an honest question for fiddle-faddle: Since celiac disease - by definition - requires an abnormal blood test, or an abnormal appearing intestine on biopsy, and symptoms that resolve with a gluten free diet, how is it possible to know that one has celiac disease while...
  9. sbj
    Don't forget that the some of the symptoms you describe are also commonly associated with plain old food poisoning. Diarrhea, abdominal cramps, and chills are all good indicators of food poisoning (as well as gluten intolerance). This could have been a viral food poisoning from seafood, bacterial food poisoning from meat or poultry that wasn't held at...
  10. sbj
    Since you're not going to challenge you will never know for sure whether you have celiac disease, so you should also check for the following: Blood tests for nutritional deficiencies due to malabsorption. Watch for iron deficiency anemia and osteoporosis. Check your bone density. If you have symptoms look for thyroid disease, type I diabetes, joint diseases...
  11. sbj
    Wow! What a lively discussion - and so many who seem so offended. Not sure why simple words seem to make some so defensive. Anywho ... "I don't know why people here have to argue about it and try to convince others that Celiac is a serious problem and gluten sensitivity is not." I would like one person - say the sainted one, shay - to quote any...
  12. sbj
    Fiddle-faddle: "I know you mean well, but you are grossly oversimplifying something." What am I oversimplifying? The symptoms of gluten intolerance? I'm not even addressing gluten intolerance - I'm addressing celiac disease diagnosis. What are you talking about? "In a way that would mean that many, many gluten-intolerant/celiac people would fail to...
  13. sbj
    Fedora: I'm sorry you feel that I am being mean or judgmental. Not my intention. I encourage everyone who feels better on a gluten-free diet to do what they feel is best. I also encourage people to try for a celiac diagnosis if at all possible. You can't get such a diagnosis from Enterolab. You say, "I had a choice, continue gluten free or go back...
  14. sbj
    Thanks, Patti. There seems to be diminishing returns here. I was merely trying to let people know that they should get tested for celiac disease and that it is different than gluten intolerance. I was trying to politely say that the Enterolab tests were no substitute for a diagnosis. I understand that some people disagree - obviously! What I did not expect...
  15. sbj
    Hi Patti: I appreciate the warning. I did not feel as if I was getting abusive - although I strongly disagree with that poster. "I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has." I thought that comment was out of line and disrespectful. It made me angry and I'll bet others who suffer with...
  16. sbj
    Hey GFpaper doll: I am not trying to piss anyone off. I am urging people to get tested for celiac if they have issues. It's that simple. Yesterday you wrote: "I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has." That's just not very empathetic - and you're wrong - we have to be on the watch...
  17. sbj
    Do you see the serious problem we have here with some posters?
  18. sbj
    I can totally see where both Patti and Rachel are coming from. Thanks for the feedback. Rachel, I found your post to be very powerful. I think it provides much food for thought for those still looking for a diagnosis. Patti: it's a terrible thing if one can't get their doctor to believe them. I would advise people to simply directly ask their doctor...
  19. sbj
    Hi Shay - thanks for response. ***This thread was asking whether or not those of us who used Enterolab felt it was valid. We are responding to this.*** The poster also asked, "Does anyone know if there has been any recent literature supporting Dr. Fine? Has anyone's doctor been supportive of his methods?" Well? Who's denying that going gluten...
  20. sbj
    Thanks, Lisa. My concern here is for newbies who don't quite know what is going on. I was recently diagnosed - purely by chance when my gastro was looking for something else. It wasn't immediately clear to me what I had and how I was to proceed. I wondered how I could have celiac disease when I don't have any symptoms whatsoever. I thought for sure my...
  21. sbj
    That Enterolabs website is pretty interesting. I found it to be somewhat misleading and not very clear. They seem to conflate gluten intolerance, wheat allergies, and celiac disease. These are three different conditions, they're not all the same thing. Celliac disease is an auto-immune disorder that can lead to intestinal lymphoma which is a particularly...
  22. sbj
    Hi Lynn: Generally, being gluten-free for only one week shouldn't throw the celiac panel off. So your daughter probably does not have celiac disease. That doesn't mean that she might not be gluten intolerant or have a wheat allergy, though. Did the celiac panel show elevated IgG level? That would be an indicator that her body is reacting to gluten...
  23. sbj
    By the way: "he told me that a biopsy was unneccessary and that a simple colonoscopy would do." A biopsy via endoscopy is the the procedure that is relatively simple and mostly painless - at least it was for me. A colonoscopy, on the other hand, is a very difficult thing to go through. It is by no means 'simple.' It takes all day to prepare, can...
  24. sbj
    Best of luck getting a proper and accurate diagnosis. Sounds to me as if your intern is not well informed. My opinion only and no substitute for a real doctor, you don't have celiac but might have a food allergy, Crohn's, or some other auto-immune disease. It therefore makes sense to have a colonososcopy (depends on your symptoms). Since you almost for...
  25. sbj
    Many thanks, Richard! I will be on the lookout for this book at the library next time I visit. Since I am one of those 'silent' celiacs I never even have a clue whether or not I am ingesting gluten - this is a blessing in most ways, and a bit of a curse, too. Even when I ate gluten foods all the time I never had outward physical symptoms, but inside I guess...
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