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From Perth, Western Australia:

My nine year old daughter has had type 1 diabetes for several years. She started complaining of having diarrhea some two years ago, and we took her to a specialist who performed an endoscopy which showed nothing other than her stomach lining was a little abnormal. Nothing else was said or done, but the diarrhea which is not chronic has never really gone away and sometimes she is constipated too. Then, about five months ago, this year she started to have bouts of vomiting that would last days then go away and come back again. Four months ago and again now, she has had problems with her eyelids swelling (like a sty), but there is no bacterial infection. She has not got a temperature, her blood sugars are all over the place because of mixtures of vomiting, stomach upsets, eye problems, antibiotics etc.

She has been admitted to the hospital six times this year, and everyone is great, but they all seem to only concentrate on their one specialisation, and I am now getting very concerned that none of these problems have gone away. Nothing has been found to be the cause, and nothing is getting any better. I am looking for clues and doing what research I can. I guess I am hoping that maybe someone there has seen all these factors together before and might shed some light on whether this is her immune system or something. I am very concerned about her and the interruptions to her school and social life.


I think that, even with a rather negative stomach endoscopy, a small bowel biopsy might be worth in order to rule out a possible autoimmune enteritis associated with her diabetes. Obviously a serum anti transglutaminase needs to be done in order to rule out celiac syndrome, but I'd further wonder if this isn't something close to something more unusual like IPEX [ED: See Bennett CL, Ochs HD. IPEX Curr Opin Pediatr 2001 Dec;13(6):533-8.]

IPEX is a X-linked syndrome characterized by immune dysfunction, polyendocrinopathy, enteropathy and a variety of autoimmune phenomena, but nowadays there are surely less severe variants. Anti-enterocyte antibodies would be what to look for. There might even an autoimmune gastritis as well (her stomach lining a little abnormal at endoscopy). If this diagnosis could be confirmed it might be worth trying an immune modulation regimen with drugs like mycophenolate mofetil (MMF). Talk of all of this over with your daughter's pediatrician.


Original posting 26 Jun 2002
Posted to Other Illnesses


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Last Updated: Tuesday April 06, 2010 15:09:34
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