24429 Collagenous Sprue Successfully Treated with Tioguinine - Celiac.com
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Collagenous Sprue Successfully Treated with Tioguinine


celiac sprue successfully treated with thioguanine. Photo: CC--Rob Ellis

Celiac.com 07/11/2016 - Collagenous sprue is a rare form of small bowel enteropathy characterized by a thickened basement membrane and is considered to be directly related to celiac disease.

Doctors have numerous treatment strategies for celiac sprue, but there is currently no effective standardized therapy. One medical team recently described four cases of celiac sprue and proposes thioguanine (6-TG) treatment, based on their results.

The research team included Tom van Gils, Tine van de Donk, Gerd Bouma, Foke van Delft, E Andra Neefjes-Borst, and Chris JJ Mulder. They are variously affiliated with the Department of Gastroenterology and Hepatology, VU University Medical Center, Amsterdam, The Netherlands, Department of Pathology, VU University Medical Center, Amsterdam, The Netherlands.

The team reviewed 4 cases of celiac sprue. They got their data from the prospective database of patients referred to their celiac centre. The team had an expert pathologist evaluate the small bowel biopsies.

None of the patients had ever shown celiac-specific antibodies, and all were negative for HLA-DQ2 and HLA-DQ8 phenotype. Three patients were treated with a combination of 6-TG and budesonide, and 1 patient received 6-TG only. All patients improved remarkably.

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They found normalized thickening of the basement membrane in 2 patients, and complete histological improvement, including full recovery of villi, in 1 patient. In the third patient, the thickened basement membrane was only very focally recognized. The thickened membrane remained in the last patient, likely due to the short follow-up time.

Celiac sprue should be separated from celiac disease. Based on the lack of typical HLA phenotyping and the absence of celiac-specific antibodies, there seems to be no relation with celiac disease in these four patients.

A promising treatment option might be 6-TG with or without budesonide. Larger study groups are needed to develop an effective standardized treatment for celiac sprue.

This is exciting for folks with celiac sprue, as they previously had no good treatment options at all.

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Yes but...

I didn't read that far. Yikes... A hefty dose of perspective in that one. For anyone reading this is the post:

Hi! I'm new to the Celiac world. I have been gluten free for around seven months, but still seem to get glutened on a regular basis. I have been sick since January '16 and think that is when it triggered, but I didn't realize until October what it was. By that time I was pregnant with my little boy who is due in June. I also have an almost 4 year old daughter. I am really torn and wondering if I need to really be tested? I have very strong suspicions that I am a true celiac because my aunt has been diagnosed. Part of me says it doesn't matter, just live gluten free and assume you are, but the other part says I need to get tested so I know if my kids are at risk. So far my daughter is fine. She was grain free until after her first birthday, I plan on doing the same with my son. But I also don't want them to suffer the way I have. What would you do? The reason I don't want to get tested is I don't want to start eating it again and feel terrible while I have little kids, last year was so hard and I just want to get strong again. I also plan to bf for a few years and don't necessarily think it's a good idea to eat gluten while bf right? Thank you!

Welcome too! Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!