Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Well --Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 Hi Trudy, A couple of thoughts occur to me. In reference to your previously e-mail. I have never heard of being a "carrier" for celiac disease. Did the doctor explain what this meant? I have also never heard of a "low-penetration celiac." There has been a lot of chatter recently about "gluten intolerance" or "gluten-sensitive enteropathy" verses actual CD, but they all mean the same thing to me: some form of CD that is not easily or typically diagnosed. The blood tests are a screening device only. If there is any question about or strong indications of celiac disease, a biopsy is the proper medical protocol for diagnosis. The blood tests just aren't that reliable in actual practice yet. Perhaps you are on a GF diet already? If so, the test and biopsy would not be accurate (however, I do not recommend a gluten challenge). Even so, this doctor is doing you a disservice by not recommending a biopsy no matter what kind of celiac you are. Many people consider themselves celiac who have never had a biopsy and I consider this completely valid; however, if you are now eating gluten and having symptoms, I don't see any reason not to have a biopsy. Now is the time, before you are gluten-free. Besides confirming the blood test, biopsy is important because it give the doctors a baseline to know what your intestines are doing now, so that progress in healing can be determined at a later date if necessary. If there is any later question about the diagnosis, it is very helpful to know where you started from. Healing from CD can take two or even three years, during that time, for some people, symptoms can even get worse; this can be a confusing time for celiacs, and having a biopsy can be useful. This is not just my opinion, I have heard this from many celiac doctors at various conferences and in articles about CD. Ultimately, you have to make your own decision about this, but I think you should at least know that a biopsy is important and discuss this with your doctor. Let me know if you have any questions about this. Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@... -----Original Message-----From: [mailto: ]On Behalf Of tverzosa@...Sent: Thursday, December 22, 2005 3:22 PM ; sillyyaks ; usasillyyaks Cc: foodallergykitchen ; ; wheatfree Subject: [ ] Finally diagnosed! Oops - hit send by mistake. Anyway, after several weeks of phone tag and some missing blood tests, I finally got to talk to my doctor! Crohn's - negative IBD - negative Candidiasis - negative per scope Celiac - he called me a "low-penetration celiac." Has anyone ever heard this term? When pressed to explain what the penetration refers to, he simply said that it is a form of gluten intolerance that could become full-blown celiac if I continued to eat gluten. So - gluten-free for me! He actually has some firsthand experience with the cross-contamination issue. When he was a resident, he had a fellow resident with severe celiac. She kept getting sick and nobody could figure out why. They finally called the potato chip manufacturer to discover they used wheat starch to adhere the flavorings! I am glad that he knows this and also that he felt it was important to share it with me. He also told me that, although this is a restrictive diet, there are many yummy recipes out there and it need not be a bad experience. --Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 Thanks Pam. I actually did have a biopsy and everything came back negative. I only had one slightly elevated blood level and that was it. I had been GF for a few months and then went back on gluten for two months before being tested. I agree that I have celiac and that's why I pressed my doctor about it. I told him my theory was that if I have the gene and have gluten intolerance that it is actually celiac in a milder form which could cause serious damage and/or complications if I continued to eat gluten. He agreed with me that I do indeed have celiac. In fact, he acknowledged that research is discovering new things about celiac all the time. He explained the oat conundrum to me - which I already knew, but it impressed me. I think he actually is quite a good and informative doctor compared to most I've heard people talk about on my various groups. I think what he meant by carrier was that in current terminology I would not be diagnosed with celiac because of my tests, but if my daughter were to get it they would call me a carrier. Thanks for the concern though. I haven't been so active about my process on this board and you didn't have all the info. I completely agree with what you said on all counts. Trudy ----- Original Message ----- From: Newbury Sent: Friday, December 23, 2005 7:34 PM Subject: RE: [ ] Finally diagnosed! Hi Trudy, A couple of thoughts occur to me. In reference to your previously e-mail. I have never heard of being a "carrier" for celiac disease. Did the doctor explain what this meant? I have also never heard of a "low-penetration celiac." There has been a lot of chatter recently about "gluten intolerance" or "gluten-sensitive enteropathy" verses actual CD, but they all mean the same thing to me: some form of CD that is not easily or typically diagnosed. The blood tests are a screening device only. If there is any question about or strong indications of celiac disease, a biopsy is the proper medical protocol for diagnosis. The blood tests just aren't that reliable in actual practice yet. Perhaps you are on a GF diet already? If so, the test and biopsy would not be accurate (however, I do not recommend a gluten challenge). Even so, this doctor is doing you a disservice by not recommending a biopsy no matter what kind of celiac you are. Many people consider themselves celiac who have never had a biopsy and I consider this completely valid; however, if you are now eating gluten and having symptoms, I don't see any reason not to have a biopsy. Now is the time, before you are gluten-free. Besides confirming the blood test, biopsy is important because it give the doctors a baseline to know what your intestines are doing now, so that progress in healing can be determined at a later date if necessary. If there is any later question about the diagnosis, it is very helpful to know where you started from. Healing from CD can take two or even three years, during that time, for some people, symptoms can even get worse; this can be a confusing time for celiacs, and having a biopsy can be useful. This is not just my opinion, I have heard this from many celiac doctors at various conferences and in articles about CD. Ultimately, you have to make your own decision about this, but I think you should at least know that a biopsy is important and discuss this with your doctor. Let me know if you have any questions about this. Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@... -----Original Message-----From: [mailto: ]On Behalf Of tverzosa@...Sent: Thursday, December 22, 2005 3:22 PM ; sillyyaks ; usasillyyaks Cc: foodallergykitchen ; ; wheatfree Subject: [ ] Finally diagnosed! Oops - hit send by mistake. Anyway, after several weeks of phone tag and some missing blood tests, I finally got to talk to my doctor! Crohn's - negative IBD - negative Candidiasis - negative per scope Celiac - he called me a "low-penetration celiac." Has anyone ever heard this term? When pressed to explain what the penetration refers to, he simply said that it is a form of gluten intolerance that could become full-blown celiac if I continued to eat gluten. So - gluten-free for me! He actually has some firsthand experience with the cross-contamination issue. When he was a resident, he had a fellow resident with severe celiac. She kept getting sick and nobody could figure out why. They finally called the potato chip manufacturer to discover they used wheat starch to adhere the flavorings! I am glad that he knows this and also that he felt it was important to share it with me. He also told me that, although this is a restrictive diet, there are many yummy recipes out there and it need not be a bad experience. --Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 The confusion lie in definition of "carrier." One might "carry" the gene; one wouldn't "carry" the disease, as Typhoid did. H. In a message dated 12/23/05 9:33:04 PM, tverzosa@... writes: I think what he meant by carrier was that in current terminology I would not be diagnosed with celiac because of my tests, but if my daughter were to get it they would call me a carrier. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2005 Report Share Posted December 26, 2005 After ruminating a bit, I think I may understand the term "low penetration celiac." I've been reading that the antibodies don't always get into the blood stream, but remain in the gut. I imagine "low penetration" means that, as in my case, only a low amount of antibodies "penetrated" the intestines and got into the blood stream. Trudy ----- Original Message ----- From: flatcat9@... Sent: Saturday, December 24, 2005 10:21 AM Subject: Re: [ ] Finally diagnosed! The confusion lie in definition of "carrier." One might "carry" the gene; one wouldn't "carry" the disease, as Typhoid did.H.In a message dated 12/23/05 9:33:04 PM, tverzosa@... writes: I think what he meant by carrier was that in current terminology I would not be diagnosed with celiac because of my tests, but if my daughter were to get it they would call me a carrier. Quote Link to comment Share on other sites More sharing options...
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