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Ok, Im Confused.
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8 posts in this topic

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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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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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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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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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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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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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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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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    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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