Refractory Sprue

[willabec]

Hi all- i have not been diagnosed with refractory sprue, but i am just curious who out there has it and who out there still has symptoms despite following a gluten free diet? for the past year or so, my "issue" seems to be the worst after lunch...somtimes going 2-3 times with varying consistencies (sorry). based upon my internet diagnosing, i may have colitis, refractory sprue, ibs-d and who knows what else. my recent blood work (just checked to see what the celiac levels were) came out great! so i am hoping it is not refractory sprue. my weight has stayed the same (well, in 1 yr. i only lost 2-3 pounds which i don't think is a big deal)- it is just the darn bowel issues. one day can be decent, one time can be decent and the next and the next, goes down hill....thanks for any input you may have. called dr. to schedule a colonoscopy and endo....

[burdee]

Hi all- i have not been diagnosed with refractory sprue, but i am just curious who out there has it and who out there still has symptoms despite following a gluten free diet? for the past year or so, my "issue" seems to be the worst after lunch...somtimes going 2-3 times with varying consistencies (sorry). based upon my internet diagnosing, i may have colitis, refractory sprue, ibs-d and who knows what else. my recent blood work (just checked to see what the celiac levels were) came out great! so i am hoping it is not refractory sprue. my weight has stayed the same (well, in 1 yr. i only lost 2-3 pounds which i don't think is a big deal)- it is just the darn bowel issues.....thanks for any input you may have. called dr. to schedule a colonoscopy and endo....

That refractory sprue label is often given to celiacs whose intestinal lesions do not heal in the expected time, despite strict adherence to the gluten-free diet. However, researchers have also discovered the people diagnosed later in life (and perhaps had long undiagnosed celiac disease) do NOT heal within 2 years. They speculate that older patients may continue to have intestinal lesions despite adherence to the gluten-free diet.

I was diagnosed with celiac disease at age 56, although I had misdiagnoses of 'gastritis' and 'IBS' for 20 years. After gluten and casein intolerance dx, I still had gut symptoms. Further (blood) allergy tests revealed soy, egg, cane sugar, vanilla and nutmeg intolerances Despite strict abstinence from those foods, I still had gut symptoms. Stool tests revealed Klebsiella infection. After Klebsiella came Enterobacter Cloacae, then Cryptosporidia and Candida, then C-diff, then achlorobacter, then H. pylori and Dientamoeba Fragilis, all within 4 years.

When I realized my ND didn't care why I got all those infections, I found another ND who wanted to treat the cause of my vulnerability. She ordered blood tests which revealed I have low white blood cells (exhausted by all those infections), anemia and low thyroid (high THS, low T4), which could make me vulnerable to chronic infections as well as cause my symptoms of chronic constipation, low body temp, dry skin, cold extremities and every increasing fatigue. She suspects my long undiagnosed celiac disease made me vulnerable to Hashimoto's thyroiditis (autoimmune correlated with celiac disease). She also believes I have 'refractory sprue'. So she prescribed L-glutamine to heal my intestines (and also my stomach after treating H. Pylori).

[Roda]

I don't know if I am labled refractory or not. I have underwent so many tests since Feb. and the only thing the GI doc can come up with is that my celiac is causing my symptoms. All my symptoms went away and I was good until Jan. of this year. The only blood test that is positive is the IgG gliadin antibody, everything else is normal levels. I had a repeat EGD with biopsy in April that showed some inflamation but the villi were not flattened anymore. I had a 24 hour fecal fat test and it showed significant malabsorption. The doctor wanted to put me on steroids, but I said no now. I am taking creon and it is helping with the bloating and diarrhea, but I know my digestion is still not right. I still think my gallbladder is contributing to things, but my function is not low enough for any surgical intervention. It seems strange to me that my symptoms appear if I consume any fat at all. So who knows.

[trents]

I was dx about seven years ago and have been very careful to eaten gluten free. Despite this, however, a repeat endoscopy and biopsy done a year ago this spring showed ongoing small bowel inflamation and villi blunting. I was very discouraged. GI doc insisted I must be cheating on my gluten but I knew I had not. I asked him to order an antibody test, which he did, and it was negative. I am 59 years old. Now I'm trying to decide where to go with this.

[burdee]

I was dx about seven years ago and have been very careful to eaten gluten free. Despite this, however, a repeat endoscopy and biopsy done a year ago this spring showed ongoing small bowel inflamation and villi blunting. I was very discouraged. GI doc insisted I must be cheating on my gluten but I knew I had not. I asked him to order an antibody test, which he did, and it was negative. I am 59 years old. Now I'm trying to decide where to go with this.

The older you were when you were diagnosed, the greater chance you will have ongoing inflammation and villi blunting, after years of undiagnosed celiac damage. I'm taking L-glutamine to heal my gut inflammation, because I was diagnosed at age 56 and then had 8 gastrointestinal infections in the past 4 years. If you still have symptoms while eating a gluten free diet, consider other food allergens, which an ELISA blood test can diagnose, or intestinal infections from bacteria, parasites or candida, which a microbial stool test can diagnose.

[dilettantesteph]

I was diagnosed at age 48 and still had symptoms after many months. At that point I stopped eating foods processed in a facility that also...and things got better. Still I had some symptoms so I stopped eating processed gluten free foods. Then I started buying my own whole grains, sorting and washing them and found that I could eat them that way. I also wash and peel everything else possible. This way I am finally symptom free and was actually able to participate in a mini triathlon this past summer. My GI suggested this process and told me that he thought that most if not all people diagnosed with refractory sprue were actually those celiacs who react to levels of gluten below the FDA recommendation of 20 ppm.

[trents]

The older you were when you were diagnosed, the greater chance you will have ongoing inflammation and villi blunting, after years of undiagnosed celiac damage. I'm taking L-glutamine to heal my gut inflammation, because I was diagnosed at age 56 and then had 8 gastrointestinal infections in the past 4 years. If you still have symptoms while eating a gluten free diet, consider other food allergens, which an ELISA blood test can diagnose, or intestinal infections from bacteria, parasites or candida, which a microbial stool test can diagnose.

Yeah, I've had the ELISA testing done and it turned up allergies to about 30 different foods and to all the staples. I don't even know where to start. You have to eat something. Besides, I have some serious doubts about ELISA testing in general. It has been demonstrated that you can send the same blood sample to different labs and come up with very different results. And there often is not a good correlation between what gives a reaction in a test tube and what produces symptoms in real life.

From a GI perspective, I am asymptomatic with the possible exception of GERD which is easily controlled by Protonix. No diahrreah, no discomfort, no constipation. Normal amounts of gas. I only had the repeat edoscopy done because I took myself off of the Protonix and developed esophogial pain/erosian. While he was in there the doc did the repeat biopsy and it turned up the ongoing small bowel inflamation/villi blunting. Besides, I wouldn't think non-gluten allergies are the kind of thing that could produce villi blunting. That's pretty unqiue to Celiac disease I think.