Skeptical Gi; No Dx

[Lamiz]

Hi - I'm new and need help. History: partial colectomy in '96 due to copious bleeding, followed by radical colectomy 6wks later for the same reason. No real DX at the time. Bleeding continued intermittently over the years, resulting in severe, chronic anemia that required numerous blood transfusions and iron infusions. In 2003, I was dx vasculitis, relapsing polychondritis and Sjogren's, which are all autoimmunes. Treated, at various times, with Enbrel, Remicade and methotrexate with prednisone as needed.

2006, dx Crohn's, switched to Imuran. Changed doctors; current GI says I don't have Crohn's; says bleeding is caused by vasculitis, pain by he-doesn't-know-what. Last hospitalized June, 2010; required 4 units of blood. Flex sig and endo negative. Cramping, diarrhea and general malaise continued. Pain was so bad in November I called my GI. His only suggestion was to repeat the scopes, which have never, repeat never, shown anything helpful. I declined and went on the gluten-free diet. Much improvement; bloody diarrhea and cramping stopped, blood counts rose, as did iron levels for the first time in years. In the absence of any other change in medication or lifestyle, my hematologist has no explanation for my improvement other than the diet.

After inadvertently eating an entree made with roux at dinner on Sunday, I had two episodes of GI bleeding. Diarrhea and cramping have continued, but improved. Saw my GI Tuesday and filled him in; he looked through my chart and said I was tested for Celiac 'way back when and didn't have it. He doesn't think gluten is the problem, but he offered no other explanation or theory. I believe he thinks I've jumped on the gluten-free bandwagon due to all the hype it's getting. BTW, I also have a problem with lactose.

Can I be sensitive to gluten or have Celiac even though tests (years ago) were negative? Although the bleeding has stopped, I continue to feel ill and have some discomfort and diarrhea. Could that one slip on Sunday cause this degree of illness? Since my GI is unconcerned, I'm not sure what to do next. I'm back on my diet, but I'm still having trouble. Any information or suggestions will be appreciated.

Thank you.

[NateJ]

Hi - I'm new and need help. History: partial colectomy in '96 due to copious bleeding, followed by radical colectomy 6wks later for the same reason. No real DX at the time. Bleeding continued intermittently over the years, resulting in severe, chronic anemia that required numerous blood transfusions and iron infusions. In 2003, I was dx vasculitis, relapsing polychondritis and Sjogren's, which are all autoimmunes. Treated, at various times, with Enbrel, Remicade and methotrexate with prednisone as needed.

2006, dx Crohn's, switched to Imuran. Changed doctors; current GI says I don't have Crohn's; says bleeding is caused by vasculitis, pain by he-doesn't-know-what. Last hospitalized June, 2010; required 4 units of blood. Flex sig and endo negative. Cramping, diarrhea and general malaise continued. Pain was so bad in November I called my GI. His only suggestion was to repeat the scopes, which have never, repeat never, shown anything helpful. I declined and went on the gluten-free diet. Much improvement; bloody diarrhea and cramping stopped, blood counts rose, as did iron levels for the first time in years. In the absence of any other change in medication or lifestyle, my hematologist has no explanation for my improvement other than the diet.

After inadvertently eating an entree made with roux at dinner on Sunday, I had two episodes of GI bleeding. Diarrhea and cramping have continued, but improved. Saw my GI Tuesday and filled him in; he looked through my chart and said I was tested for Celiac 'way back when and didn't have it. He doesn't think gluten is the problem, but he offered no other explanation or theory. I believe he thinks I've jumped on the gluten-free bandwagon due to all the hype it's getting. BTW, I also have a problem with lactose.

Can I be sensitive to gluten or have Celiac even though tests (years ago) were negative? Although the bleeding has stopped, I continue to feel ill and have some discomfort and diarrhea. Could that one slip on Sunday cause this degree of illness? Since my GI is unconcerned, I'm not sure what to do next. I'm back on my diet, but I'm still having trouble. Any information or suggestions will be appreciated.

Thank you.

If you haven't already, demand to see the detailed pathology reports from your last scopes. My old GI told me nothing abnormal was found, by once I saw the actually printed reports I could see in black and white that something was not right. I took it to another doctor who agreed that it was Celiac along with some other issues.

[mushroom]

Many people whose symptoms improve dramatically with the elimination of gluten have not been able to get a positive diagnosis of celiac. Researchers and doctors are now coming to the conclusion that there is non-celiac gluten intolerance, but nobody has yet been able to establish the significance of this or devise a test for it, except to stop eating it. You might try reading here:

http://www.celiac.co...rent/Page1.html

Open Original Shared Link

http://online.wsj.co...eTabs%3Darticle

[Lamiz]

Thanks, Nate and Mushroom. I appreciate your help.