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Biopsies, Inflammation In The Stomach Antrum & Celiac?


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#1 shawna67

 
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Posted 21 August 2008 - 10:35 AM

Hi,

I had a colonoscopy, endoscopy, and series of small intestine biopsies yesterday at Beth Israel Deaconness Medical Center in Boston; besides the fact that the doctor doing the procedure was a total jerk with a rotten bedside manner and a very abrasive personality, the procedure went well; I did feel it though; I thought I'd be more knocked out than I was but I was awake through most of it; anyhow, I've been having symptoms of celiac disease for many years - very low iron stores (like 3.4), anemia, GERD, abdominal pain and bloating, weakness, fatigue, hair loss, etc... I went on a gluten-free diet for almost a year recently and noticed a remarkable improvement; I was instructed to go back on a regular wheat diet for about 6 weeks and then have these tests done including a biopsy; well, I went back on the wheat for about 4 weeks & had these tests done yesterday; i don't think 4 weeks is long enough to show any damage to my small intestine but the doctor insisted that it would show damage; anyhow, after the procedures yesterday he said he saw no evidence of celiac and doubts I have it; this is despite the fact that the biopsies take 2 weeks to process; he did find some polyps and an inflammation of the lining of the stomach antrum, which is the part of the stomach where food collects prior to passage into the small intestine; does anyone know whether celiac disease can cause inflammation of the antrum? it just seems coincidental to me that that area is inflamed & its right next to the small intestine. Also, what is it with these a**hole GI doctors who think they can treat patients like such crap? I've absolutely had it with such unsympathetic, arrogant, emotionally cold doctors. Any one else have terrible experiences with so-called specialists who are supposed to help you but instead treat you like its all in your head? Sorry for the rant but I'm just pissed off.

Shawn
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#2 ravenwoodglass

 
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Posted 21 August 2008 - 01:42 PM

Oh boy could I rant along with you about doctors, as can most of us here. :(

Inflammation is common with celiac and can really appear just about anywhere in the body. Your doctor really can't tell you with any certainty until he gets the pathologists report back. Do make sure you get an actual copy of the report, some doctors just don't recognize celiac changes that are not total villi destruction but scalloping, an increase in Tcells and other findings can indicate that it is a likely diagnosis if the symptoms fit. Often the path will state that at the end of the report.
How did you do on the diet? Did it help the issues you were having? That is really the most important test when the diet is done strictly.
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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)

#3 shawna67

 
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Posted 31 August 2008 - 08:28 PM

Hi,

Thanks for your reply. I agree that inflammation from celiac can appear anywhere in the body; in fact, I read in a scientific journal recently that many celiac patients experience inflammation of the antrum, which is the same part of the stomach that is inflammed on me. I really think my doctor did the biopsy too prematurely. I was on a gluten-free diet for nearly a year and then only went back on the gluten for about 3 1/2 weeks before getting the biopsy done; frankly, I don't think he was interested in helping me & seemed biased against me; I'm afraid his bias might lead him to subjectively interpret the biopsy results as no celiac when it may be present; all I know is that I have all the symptoms of celiac disease; I've even had brain lesions, hair loss, and excessively low iron stores (currently they're 3.4). I was doing a lot better on the gluten-free diet; my stomach & sleep have been terrible since going back on the gluten.

Shawna




Oh boy could I rant along with you about doctors, as can most of us here. :(

Inflammation is common with celiac and can really appear just about anywhere in the body. Your doctor really can't tell you with any certainty until he gets the pathologists report back. Do make sure you get an actual copy of the report, some doctors just don't recognize celiac changes that are not total villi destruction but scalloping, an increase in Tcells and other findings can indicate that it is a likely diagnosis if the symptoms fit. Often the path will state that at the end of the report.
How did you do on the diet? Did it help the issues you were having? That is really the most important test when the diet is done strictly.


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#4 shawna67

 
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Posted 31 August 2008 - 08:31 PM

I'm sorry to hear that your mother died at a young age of celiac related cancer & that you lost a brother; and that you went undiagnosed with celiac for so many years; I really wish doctors were better educated on celiac disease; it seems that most doctors know very little about the disease. They're so ignorant; its unbelievable.



Oh boy could I rant along with you about doctors, as can most of us here. :(

Inflammation is common with celiac and can really appear just about anywhere in the body. Your doctor really can't tell you with any certainty until he gets the pathologists report back. Do make sure you get an actual copy of the report, some doctors just don't recognize celiac changes that are not total villi destruction but scalloping, an increase in Tcells and other findings can indicate that it is a likely diagnosis if the symptoms fit. Often the path will state that at the end of the report.
How did you do on the diet? Did it help the issues you were having? That is really the most important test when the diet is done strictly.


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#5 ravenwoodglass

 
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Posted 01 September 2008 - 02:42 AM

No matter what the doctor says you seem to know the answer. Hopefully you are now back on the diet and back on the path to healing. I know this sounds jaded but sometimes I think doctors will do anything to try and 'prove' that we don't need the diet but do need lots of pills. My 'favorite' doctor response after biopsy is 'well there are some changes that could be celiac but your villi are still intact so I don't think that is it. Why don't you continue to eat gluten and come back in a year. We will rebiopsy then and see. Oh and here is a script for your 'ulcer' pain and inflammation and just take immodium when ever you need to. Multiple daily doses won't hurt.' How much you want to bet you hear something similar when you go back to get the results.
  • 0
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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