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Misdiagnosis Of Celiac Disease

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Posted 19 July 2011 - 06:23 PM

I wanted to share my story, and see if anyone have ever heard of anything like our experience...In June of 2010 my boyfriend was diagnosed with celiac disease...we went to the doctor because he had constant stomach pains, couldn't keep weight on, and had dropped about 50 lbs in a matter of 4 months. We informed the dr that celiac disease ran in his family, so they tested for it. His blood work came back and said he was MAYBE border line celiac...they told us to start a gluten free diet and see if he feels better.... he did start to feel better, but never felt 100%. He had the procedure done with the scope down his throat and everything came back normal, but we continued the gluten free diet. We have been going gluten free since then, but for about the past 5 months he has had many bathroom issues, extreme stomach pains that wake him from a deep sleep every morning... he was eating 100% gluten free, and we even cut off the dairy from the diet to see if this helped...nothing seemed to help. We went back to the dr and they decided to take further steps... he had a colonoscopy done at the end of june...everything came back normal... another round of blood work done...everything came back normal. Last Wednesday they had him come in and did a CT Scan on his lower intestines.... results of the CT scan finally gave us some answers...his appendix was inflamed. We went to the dr this following day and they said he had acute appendicitis... they wanted to wait until the next day to take it out be taken out because they couldnt fit him into their schedule. We took further action and contacted a dr, so we could get it out last Thursday.... We went for a consultation with this dr. he said it wasnt acute, but because it was bothering him he would take it out and hes not sure if this would even be the source of all of his problems. Thursday afternoon they took his appendix out... after the procedure the dr came out and told us his appendix was inflamed and it definitely needed to come out... He had whats called chronic appendicitis and has had it for over the year. The Dr. told us we can pretty much forget about Celiacs because that has never been the problems...he has had acute appendicitis for that long and has been misdiagnosed. Since then he has felt 100% better....he feels like a new person....nothing makes him sick, he has no stomach pains, and no bathroom issues. We have just been amazed that this has been the misdiagnosis, and he has never actually had celiac disease.
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Posted 19 July 2011 - 07:41 PM

What can I say? Doctors are sometimes a piece of work...

I wanted to mention, though, that my mother had appendicitis....and we later found out that the surgery was the triggering event for her celiac. You see, with celiac you have to have both the genes and a triggering event. Hopefully, the surgery didn't trigger celiac in your boyfriend....but he should still be tested every few years, just in case, since celiac runs in his family. As long as he carries the genes, celiac can be triggered any time during his lifetime.
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Posted 19 July 2011 - 07:58 PM

yep, that can do that (my mother had it). However, because he has celiac in his family history, it wouldn't hurt to be checked every few years "just in case".
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Posted 20 July 2011 - 03:51 AM

Please be on the look out for an increase in his symptoms if he is going back on gluten. It is quite possible, since he did get some relief from symptoms, that he had both celiac and an inflamed appendix. Having an inflamed appendix wouldn't cause him to be 'borderline' positive on celiac testing.
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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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Posted 22 July 2011 - 12:40 PM

Please be on the look out for an increase in his symptoms if he is going back on gluten. It is quite possible, since he did get some relief from symptoms, that he had both celiac and an inflamed appendix. Having an inflamed appendix wouldn't cause him to be 'borderline' positive on celiac testing.

I agree with ravenwoodglass. With both a family history of celiac and borderline blood tests, it's entirely possible that he had both acute appendicitis and he is somewhere on the celiac spectrum. I had never heard of "chronic appendicitis" so I looked in some medical textbooks and could not find it described. Is it some sort of "new" diagnosis which has not made it's way into the medical textbooks yet?
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