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Small Bowel - Gi Says Yes, But Can't Confirm


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#1 Rose519

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Posted 23 September 2005 - 12:43 PM

After going through years of wondering what was wrong with me, and sorting things off of my "to eat" list one by one, this summer I got so sick and started losing so much weight (and hair) that my regular GP couldn't ignore the situation any longer. I was losing 5 lbs. a week.

Prior to having tests, I had started keeping a strict food diary of everything I put in my mouth. It was very easy to pinpoint then what the problem was ..... wheat products. No question. My husband and I then remembered that I have been having problems eating certain meals for quite some time, and we just hadn't been able to figure it out before. I was sent for an endoscopy with biopsies, colonoscopy with biopsies, and then upper GI.

The gastroenterologist said the tests were clear, but because I had such extreme symptoms and because the tests prior indicated blood and there was definitely still a problem, and because of the food diary I had been keeping and I had already started to eliminate wheat products from my diet at the point the tests were run, he said the damage from the Celiac Sprue had to be in my small bowel where he couldn't get to run the biopsies. I had another doctor that I talked with agree with his statement.

I am continuing on with this gluten-free diet, however it is strange to me that it could not be detected. Has anyone else ever had this experience?
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#2 ravenwoodglass

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Posted 26 September 2005 - 04:38 PM

After going through years of wondering what was wrong with me, and sorting things off of my "to eat" list one by one, this summer I got so sick and started losing so much weight (and hair) that my regular GP couldn't ignore the situation any longer.  I was losing 5 lbs. a week.

Prior to having tests, I had started keeping a strict food diary of everything I put in my mouth.  It was very easy to pinpoint then what the problem was ..... wheat products.  No question.  My husband and I then remembered that I have been having problems eating certain meals for quite some time, and we just hadn't been able to figure it out before.  I was sent for an endoscopy with biopsies, colonoscopy with biopsies, and then upper GI. 

The gastroenterologist said the tests were clear, but because I had such extreme symptoms and because the tests prior indicated blood and there was definitely still a problem, and because of the food diary I had been keeping and I had already started to eliminate wheat products from my diet at the point the tests were run, he said the damage from the Celiac Sprue had to be in my small bowel where he couldn't get to run the biopsies.  I had another doctor that I talked with agree with his statement.

I am continuing on with this gluten-free diet, however it is strange to me that it could not be detected.  Has anyone else ever had this experience?

<{POST_SNAPBACK}>


Perhaps what he was trying to say is that if you have been gluten-free for awhile your tests will show up negative. I am glad to hear you are continuing with the diet, it is a life saver in so many ways.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


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