Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 If the blood tests for CD come out negative, remember that false negatives are common. If there is sufficient reason to suspect CD in spite of a negative blood test, a biopsy will follow. The biopsy, in my experience (twice) was painless and required no prep. I had no pain afterwards. In the biopsy, the doctor will look for evidence of CD and also check for stomach cancer. H. In a message dated 9/30/05 1:21:10 PM, tverzosa@... writes: I had second thoughts about all the testing because, of course, it means I will have to go back on gluten for a month. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 Trudy, The study described below was performed by the Celiac Sprue Research Foundation. The conclusion: Short-term gluten challenge (21 days) in asymptomatic adult celiac patients produces carbohydrate and fat malabsorption but does not increase transglutaminase and antigliadin antibody titers. This means some of the blood tests you listed below will still be negative after eating gluten for 30 days. You should do the gene test first before bothering with the gluten challenge. Those are the HLA-DQ8 test and the HLA-DQ2 test. If those are negative, you are not celiac. If those are positive, you have the gene to become a celiac, so further testing is needed. The fecal fat test and xylose test are more accurate during a gluten challenge than the antibody tests. You can make an appointment with the Celiac Sprue Management Clinic at Stanford Hospital - that is where the authors of this paper work. Published in Clinical Gastroenterology and Hepatoloty Low-Dose Gluten Challenge in Celiac Sprue: Malabsorptive and Antibody Responses, 23 June 2005 Pyle GG, Paaso B, BE, D, Marti T, Khosla C, Gray GM pages 679-686 Background & Aims: Undiagnosed patients with symptoms of celiac sprue often present to physicians after establishing dietary gluten exclusion. Although they must resume a gluten-containing diet for evaluation, there are no guidelines regarding duration of the gluten challenge, gluten dose, or monitoring parameters. We investigated the effects of a short-term gluten challenge in asymptomatic treated adult celiac patients on intestinal absorption and celiac antibody tests. Methods: Eight adult asymptomatic celiac patients consumed either 5 or 10 g of partially hydrolyzed gluten per day in an orange juice mixture for 21 days while maintaining their usual gluten-free diet. A symptom questionnaire, serum antibodies (antigliadin immunoglobulin [ig]A and antitransglutaminase IgA and IgG), D-xylose urine excretion test, and 72-hour quantitative fecal fat test were monitored. Results: Two patients (25%) had at least 1 abnormal celiac antibody test at baseline. There was no increase in antibodies during gluten exposure compared with baseline for any of the patients (P > .05). At baseline, 1 patient had abnormal urine xylose excretion, and 3 patients had abnormal fecal fat values. At day 15 of gluten challenge, all patients had reduced xylose absorption compared with baseline (P = .0019), and 5 of 8 participants (63%) reduced their xylose excretion to the abnormal range. Seven of 8 patients (88%) had increased fecal fat excretion at day 15 (P = .026), and 6 of these (75%) had steatorrhea by day 15. Conclusions: Short-term gluten challenge in asymptomatic adult celiac patients produces carbohydrate and fat malabsorption but does not increase transglutaminase and antigliadin antibody titers. At 12:35 PM 9/30/2005, tverzosa@... wrote: I faxed over a three-page memo to my PCP before going to my appointment this morning. In it I: 1. told her all the strange little things that are happening (hair falling out, muscle cramps, etc.) 2. outlined what I learned from the celiac class I went to with Dr. Aron (celiac specialist of 32 years) 3. listed all the " iceberg " conditions that are signs of celiac and whether my family has those conditions 4. asked for more testing and a referral to Dr. Aron I am thrilled to say that she ended up ordering many blood tests and will try to refer me to Dr. Aron. If the insurance won't allow it (he's in another physician's group) we will work from there. As an interesting note - I had low platelets while pregnant, which led to an emergency transfusion after labor because I hemorhaged, and my doctor said this was an auto-immune problem. So she is thinking I'm celiac as well. Glad to have her on board! I had second thoughts about all the testing because, of course, it means I will have to go back on gluten for a month. But I have decided it's worth it to know for sure. But I would love to hear any input you have. Here are the tests she ordered: Comp. Metabolic (anyone know what this is?) B12/Folic Acid Iron/TIBC TSH (M/care req ABN) CBC (w/ auto diff) Serum innune electrophoresis HLA-DQ8 test HLA-DQ2 test IgA antigliadin af (what is " af " ?) TgG antigliadin af IgA - anti-T2 (Transglutanidase) gliadin antibody Anti-endomysial af Serum vitamin A level Serum vitamin B level Take care everyone! Trudy in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 Thanks. I really would like to have a diagnosis if possible. I know I will be GF for life, but I would like to know it it's celiac or not. Trudy ----- Original Message ----- From: flatcat9@... Sent: Friday, September 30, 2005 1:48 PM Subject: Re: [ ] Doctor ordered tests If the blood tests for CD come out negative, remember that false negatives are common. If there is sufficient reason to suspect CD in spite of a negative blood test, a biopsy will follow. The biopsy, in my experience (twice) was painless and required no prep. I had no pain afterwards. In the biopsy, the doctor will look for evidence of CD and also check for stomach cancer.H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 Thanks for this info. I think I will do it anyway, since I've already started. I will be going to a gastroenterologist in a few weeks, so I will be ready for a biopsy if they decide to do it. Trudy ----- Original Message ----- From: Rohlfs ; SillyYaks ; usasillyyaks ; livingwheatandglutenfree Cc: Sent: Friday, September 30, 2005 1:48 PM Subject: Re: [ ] Doctor ordered tests Trudy,The study described below was performed by the Celiac Sprue Research Foundation. The conclusion: Short-term gluten challenge (21 days) in asymptomatic adult celiac patients produces carbohydrate and fat malabsorption but does not increase transglutaminase and antigliadin antibody titers. This means some of the blood tests you listed below will still be negative after eating gluten for 30 days. You should do the gene test first before bothering with the gluten challenge. Those are the HLA-DQ8 test and the HLA-DQ2 test. If those are negative, you are not celiac. If those are positive, you have the gene to become a celiac, so further testing is needed. The fecal fat test and xylose test are more accurate during a gluten challenge than the antibody tests.You can make an appointment with the Celiac Sprue Management Clinic at Stanford Hospital - that is where the authors of this paper work. Published in Clinical Gastroenterology and HepatolotyLow-Dose Gluten Challenge in Celiac Sprue: Malabsorptive and Antibody Responses, 23 June 2005 Pyle GG, Paaso B, BE, D, Marti T, Khosla C, Gray GMpages 679-686Background & Aims: Undiagnosed patients with symptoms of celiac sprue often present to physicians after establishing dietary gluten exclusion. Although they must resume a gluten-containing diet for evaluation, there are no guidelines regarding duration of the gluten challenge, gluten dose, or monitoring parameters. We investigated the effects of a short-term gluten challenge in asymptomatic treated adult celiac patients on intestinal absorption and celiac antibody tests. Methods: Eight adult asymptomatic celiac patients consumed either 5 or 10 g of partially hydrolyzed gluten per day in an orange juice mixture for 21 days while maintaining their usual gluten-free diet. A symptom questionnaire, serum antibodies (antigliadin immunoglobulin [ig]A and antitransglutaminase IgA and IgG), D-xylose urine excretion test, and 72-hour quantitative fecal fat test were monitored. Results: Two patients (25%) had at least 1 abnormal celiac antibody test at baseline. There was no increase in antibodies during gluten exposure compared with baseline for any of the patients (P > .05). At baseline, 1 patient had abnormal urine xylose excretion, and 3 patients had abnormal fecal fat values. At day 15 of gluten challenge, all patients had reduced xylose absorption compared with baseline (P = .0019), and 5 of 8 participants (63%) reduced their xylose excretion to the abnormal range. Seven of 8 patients (88%) had increased fecal fat excretion at day 15 (P = .026), and 6 of these (75%) had steatorrhea by day 15. Conclusions: Short-term gluten challenge in asymptomatic adult celiac patients produces carbohydrate and fat malabsorption but does not increase transglutaminase and antigliadin antibody titers.At 12:35 PM 9/30/2005, tverzosa@... wrote: I faxed over a three-page memo to my PCP before going to my appointment this morning. In it I: 1. told her all the strange little things that are happening (hair falling out, muscle cramps, etc.)2. outlined what I learned from the celiac class I went to with Dr. Aron (celiac specialist of 32 years)3. listed all the "iceberg" conditions that are signs of celiac and whether my family has those conditions4. asked for more testing and a referral to Dr. Aron I am thrilled to say that she ended up ordering many blood tests and will try to refer me to Dr. Aron. If the insurance won't allow it (he's in another physician's group) we will work from there. As an interesting note - I had low platelets while pregnant, which led to an emergency transfusion after labor because I hemorhaged, and my doctor said this was an auto-immune problem. So she is thinking I'm celiac as well. Glad to have her on board! I had second thoughts about all the testing because, of course, it means I will have to go back on gluten for a month. But I have decided it's worth it to know for sure. But I would love to hear any input you have. Here are the tests she ordered: Comp. Metabolic (anyone know what this is?)B12/Folic AcidIron/TIBCTSH (M/care req ABN)CBC (w/ auto diff)Serum innune electrophoresisHLA-DQ8 testHLA-DQ2 testIgA antigliadin af (what is "af"?)TgG antigliadin afIgA - anti-T2 (Transglutanidase) gliadin antibodyAnti-endomysial afSerum vitamin A levelSerum vitamin B level Take care everyone! Trudy in CA Quote Link to comment Share on other sites More sharing options...
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