Going Back On Gluten For The Next Six Weeks!

[Imanistj]

I had a perfectly good gastroenterologist who diagnosed and treated my sick gall bladder which eventually had to be removed. I was told by my fibromyalgia doc that I tested positive for autoimmune liver disease. I panicked and asked for a consult with a hepatologist and he is the one who decided I had celiac disease. I certainly never had the classic symptoms and he based his diagnosis on a mildly elevated transglutaminase. He is the doc who put me on a gluten-free diet BEFORE the biopsy, which came back normal. Because this doc said and did some things I found odd, I never truly believed I had celiac disease. I did, however, stick to the gluten-free diet 100% to my knowledge, and I did hours of research daily for about two months before I decided I really understood the disease and the diet. I saw my old gastro today as a 9 month follow up to the gall bladder removal and I poured my heart out to him. He was careful to remain professional and not disagree openly with another doctor, but he did tell me he knew I would never be comfortable with the diagnosis until I did a challenge. He told me to eat gluten for six weeks and then have the blood work repeated. After that, he planned to do the test in which the patient swallows a capsule that can be monitored as it passes through the entire digestive system. He said he wanted to learn as much about my entire GI tract as he could. Earlier this year, prior to my surgery in March, he had done a colonoscopy, and endoscopy and x-ray small bowel evaluation. All came back normal and he even biopsied my pylorus AND THAT CAME BACK COMPLETELY NORMAL. So, I have positive genetic studies (which are useful to rule out celiac disease, not in) and a mildly elevated one time transglutaminase. And---two biopsies by two doctors that show no celiac disease! Unfortunately, Mdicare will not pay for the capsule swallowing test as a diagnostic tool for celiac disease. Bummer, but I am still going to do the challenge and repeat blood work. Maybe the nice gastro will want to do a third biopsy, but I really get the feeling he doesn't believe I have celiac disease. If, after the challenge and the tests, I do have celiac disease I will immediately return to the gluten-free diet. I think it will be easier for me to tolerate if I can believe the diagnosis. In the mean time, I have cupboards and a freezer full of gluten-free flours and mixes. I have five loaves of Udi's bread and two pizza crusts in my freezer, but even if I don't end up being celiac, I will eat them after the challenge. I feel enormously relieved that my original gastro is willing to work with me and my goofy personality. By February I will absolutely know, one way or the other. Maybe, by then, I won't be so angry about all the expensive food I have bought or baked and then threw out because I didn't like the taste or texture! Oh, I even spent almost $300 for a Kitchen Aid so I could make bread. Guess I will also mention the cost of the motel and trip to the Boston area for the New England Celiac Conference. I do have to say that was a fabulous one day program and I would recommend it to anyone if they do it again next year.

Thanks to all who have answered my questions and offered encouragement since I joined this group.

[jerseyangel]

Best of luck with it all Nancy, and please keep us posted

[Mey Marie]

I had a perfectly good gastroenterologist who diagnosed and treated my sick gall bladder which eventually had to be removed. I was told by my fibromyalgia doc that I tested positive for autoimmune liver disease. I panicked and asked for a consult with a hepatologist and he is the one who decided I had celiac disease. I certainly never had the classic symptoms and he based his diagnosis on a mildly elevated transglutaminase. He is the doc who put me on a gluten-free diet BEFORE the biopsy, which came back normal. Because this doc said and did some things I found odd, I never truly believed I had celiac disease. I did, however, stick to the gluten-free diet 100% to my knowledge, and I did hours of research daily for about two months before I decided I really understood the disease and the diet. I saw my old gastro today as a 9 month follow up to the gall bladder removal and I poured my heart out to him. He was careful to remain professional and not disagree openly with another doctor, but he did tell me he knew I would never be comfortable with the diagnosis until I did a challenge. He told me to eat gluten for six weeks and then have the blood work repeated. After that, he planned to do the test in which the patient swallows a capsule that can be monitored as it passes through the entire digestive system. He said he wanted to learn as much about my entire GI tract as he could. Earlier this year, prior to my surgery in March, he had done a colonoscopy, and endoscopy and x-ray small bowel evaluation. All came back normal and he even biopsied my pylorus AND THAT CAME BACK COMPLETELY NORMAL. So, I have positive genetic studies (which are useful to rule out celiac disease, not in) and a mildly elevated one time transglutaminase. And---two biopsies by two doctors that show no celiac disease! Unfortunately, Mdicare will not pay for the capsule swallowing test as a diagnostic tool for celiac disease. Bummer, but I am still going to do the challenge and repeat blood work. Maybe the nice gastro will want to do a third biopsy, but I really get the feeling he doesn't believe I have celiac disease. If, after the challenge and the tests, I do have celiac disease I will immediately return to the gluten-free diet. I think it will be easier for me to tolerate if I can believe the diagnosis. In the mean time, I have cupboards and a freezer full of gluten-free flours and mixes. I have five loaves of Udi's bread and two pizza crusts in my freezer, but even if I don't end up being celiac, I will eat them after the challenge. I feel enormously relieved that my original gastro is willing to work with me and my goofy personality. By February I will absolutely know, one way or the other. Maybe, by then, I won't be so angry about all the expensive food I have bought or baked and then threw out because I didn't like the taste or texture! Oh, I even spent almost $300 for a Kitchen Aid so I could make bread. Guess I will also mention the cost of the motel and trip to the Boston area for the New England Celiac Conference. I do have to say that was a fabulous one day program and I would recommend it to anyone if they do it again next year.

Thanks to all who have answered my questions and offered encouragement since I joined this group.

My Doc had me eat gluten until after my scope and biopsy. He said that he would then be able to get a true reading of the biopsy. He said if I had not been eating gluten, That he might get a wrong negative result.

Sounds like you were gluten free at the time of your tests.

[Imanistj]

I was told to find a dietitian and go on a gluten-free by a staff member in the doctor's office. There was no offer of an explanation of the diet and no recommendation of a celiac smart dietitian. I am a retired RN and I love my computer, so I was able to fend for myself. Still, it rankled me to be told that way. I was on the gluten-free diet for three weeks until my next appointment with the doc. That was when he said it didn't matter that I had been gluten-free prior to the test. He expected me to stay on the diet but agreed I could go off until the biopsy if I chose. Huh? I was back on gluten for 14 days when the biopsy was obtained. I found that on and off diet thing too iffy to make me believe the test was obtained under the best circumstances.

I was definitely on gluten when the original gastro biopsied my duodenum during an exploratory endo sometime prior to the March 31 gall bladder removal. Both tests were reported by the pathologist as normal.

[Mey Marie]

I was told to find a dietitian and go on a gluten-free by a staff member in the doctor's office. There was no offer of an explanation of the diet and no recommendation of a celiac smart dietitian. I am a retired RN and I love my computer, so I was able to fend for myself. Still, it rankled me to be told that way. I was on the gluten-free diet for three weeks until my next appointment with the doc. That was when he said it didn't matter that I had been gluten-free prior to the test. He expected me to stay on the diet but agreed I could go off until the biopsy if I chose. Huh? I was back on gluten for 14 days when the biopsy was obtained. I found that on and off diet thing too iffy to make me believe the test was obtained under the best circumstances.

I was definitely on gluten when the original gastro biopsied my duodenum during an exploratory endo sometime prior to the March 31 gall bladder removal. Both tests were reported by the pathologist as normal.

Sounds like Gluten might just not be the problem. Or at least not Celiac. Some people should just stay away from it anyway. If you don't have a problem with Gluten, Then I hope they find the problem for you. You sure have been compliant with the Dr.s orders. Good luck.