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Ok, Im Confused.


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7 replies to this topic

#1 co09wrx

 
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Posted 01 October 2012 - 01:09 PM

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry
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#2 psawyer

 
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Posted 01 October 2012 - 01:20 PM

I'm not an expert in the blood tests. The ones developed ten to 15 years ago were not as specific as some available today. There is one (somebody will know which it is) which is highly specific for celiac disease. A positive there is 99% accurate.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 Lisa

 
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Posted 01 October 2012 - 01:29 PM

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry


If your anti-endomysial antibodes are positive, you can conclude that your diagnosis is Celiac Disease. No biopsy would be needed.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 ravenwoodglass

 
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Posted 01 October 2012 - 01:42 PM

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry


You have a good GI. Follow their advice. Plus if you are already gluten free the biopsy has a good chance of being a false negative.
I hope you heal quickly but for some of us things can be up and down for a bit. Hang in there and ask any questions needed.
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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)

#5 Roda

 
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Posted 02 October 2012 - 02:58 AM

Go with what you GI is saying if you are comfortable with that. My youngest son is diagnosed without a scope/biopsy.

If you still want to do the scope/biopsy, be aware that you have to be eating gluten to get the most accurate biopsy for celiac. The scope does look at the esophagus and stomach also. Biopsies are taken from both places to rule out other things like barretts esophagus, ulcers, inflammation , cancer, parasites, H pylori, etc. I'm not mentioning this to scare you, its just part of the routine scope process.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#6 lovegrov

 
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Posted 02 October 2012 - 07:01 AM

It's my understanding that a number of doctors now consider symptoms and a positive blood test all you need for a diagnosis. And improvement on the diet would confirm it.

richard
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#7 co09wrx

 
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Posted 04 October 2012 - 11:40 AM

Thanks for all your feedback. I know I will need assistance in the future coping with this. Feeling better, I have less blotting staying away from gluten and dairy. Coming to the realization that it may take a long time for my digestive track to heal.

Terry
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#8 nvsmom

 
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Posted 06 October 2012 - 07:15 AM

Good luck Terry. :) You'll probably notice some improvements within a week or two and then other improvements will slowly show up... It does take a while.

I wanted to add that I was diagnosed based on positive EMA and ttg IgA, and my symptoms. No endoscopy neede, which is great since I like to avoid procedures like that. :)
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Celiac - June, 2012
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