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hafadai43

Refractory Sprue

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I have been gluten free for four and a half years. I have been careful! My symptoms (mostly bloating that NEVER goes away and irregular bm's, almost constant fatigue and feelings of weakness) have not been relieved. Needless to say it's really frustrating me. I have been getting test after test and procedure after procedure done searching for answers. I have been tested for deficiencies and malnutrition and now I'm on TONS of iron each day among all the other vitamins I already took daily without fail. I have had an ultrasound done to look for tumors or cysts--they only found a very small uterine fibroid, nothing to worry about. I've had my bone density checked, I got tested for gluten contamination--negative, I had a colonoscopy (I am only 22) and they found not much of anything, nothing to explain my symptoms. I'm going to suggest to my doctor, for the second time, that I have allergen testing. I tried to do a food diary for over a month and could find no real pattern or specific food that caused my symptoms. I tried cutting out dairy, then soy....not much of a difference. I have had so many blood tests it's ridiculous...no answers!

My real question is....could it possibly be refractory sprue? I know it's rare and I could be way off....but has anyone else been diagnosed with it? If so...how did you feel? What were your symptoms? I am in need of some real direction and I have been doing research like crazy trying to find some answers of my own to bring with me to the Dr. when I go back on the 12th.... Can anyone help me?


Rachel Lyn

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Celiac.com Sponsor (A8):

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The member here known as "Canadian Karen" has been diagnosed with refractory sprue.

Click here to link to her profile.

If you send her a message I am sure she will reply to it


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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See if they will try you on Nystatin for intestinal yeast. It treats the intestines only and doesn't put any strain on the liver. You'll know if you've got intestinal candidiasis because your symptoms will get worse for a few days and then much much better. If the bloating is due to a slow moving gut, you can bet that the yeast (as well as other organisms) will take advantage of that environment. You can also try herbal anti-fungals - there are tons of them out there.

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I'd add probiotics to your diet and do whatever is necessary to get your BMs normal / daily. More than likely more raw fruits and veggies, fiber, coffee, some whole healthy fats (not supplements) like EVOO, grapeseed oil or Fish oil would help.

You may have to use a laxative in the beginning to get things moving, but don't depend on them. Eventually you'll learn what foods help you stay regular.

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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