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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Is An Endoscopy Really Necessary?
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Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

 

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

 

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

 

Thanks,

Whitney

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Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

Thanks,

Whitney

I don't understand the parent comment. You are a grown-up with your own insurance, so I think it is really your choice. I wish your parents would have gotten themselves tested before going gluten-free.

Any doctor can do the f/ up blood test - just re- testing to se if the antibodies are coming down. You don't need a GI for that. You might want to read on the univ of Chicago Celiac center for more info about why an endoscopy is necessary. If you decide on the endo, you will want to keep eating gluten.

http://www.cureceliacdisease.org

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Hi NurseSati and Welcome to the forum!

 

Whether or not to get an endoscopy and biopsy is a personal decision and one only you can make for yourself.  However, there is an additional benefit to having the biopsy, as they will test for other possible issues that could be either causing your symptoms or going on in addition to the Celiac.

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Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

 

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

 

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

 

Thanks,

Whitney

Actually ,the biopsy is not definitive.  You could still have a negative biopsy, with positive bloodwork.  It all depends if there is enough damage to your small intestine yet for them to find.  If you have a complete Celiac panel done and the tTg plus the EMA are positive, then you have a diagnosis for Celiac.  tTg can be elevated for other reasons besides Celiac but having the additional positive EMA is a slam dunk for Celiac.  I would suggest having the full panel done before you do anything else.

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Actually ,the biopsy is not definitive.  You could still have a negative biopsy, with positive bloodwork.  It all depends if there is enough damage to your small intestine yet for them to find.  If you have a complete Celiac panel done and the tTg plus the EMA are positive, then you have a diagnosis for Celiac.  tTg can be elevated for other reasons besides Celiac but having the additional positive EMA is a slam dunk for Celiac.  I would suggest having the full panel done before you do anything else.

I agree...the search for answers is complex.... My TTG IGA is over 300..... But a biopsy said negative. Yet the difference gluten-free is startling! I'm not yet back to fully well...but compared to how I've been its unrecognisable.....

Good luck

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Yep, I skipped the biopsy because I had positive tTG IgA and EMA IgA. I looked at the specificity of those tests and decided that was good enough for me. Plus, I knew that the biopsies are not perfect and have heard too many stories about people who doubted their diagnosis just because one out of three tests (the biopsy) was negative.

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I decided to forgo the endo because I react badly to anesthesia and my symptoms and blood work were enough for me.  I was mildly positive for 2 of the tests despite being IgA deficient and only on gluten for 2 weeks as well as having multiple vitamin deficiencies, some severe (my vitamin D levels were almost undetectable) in addition to a family history of various autoimmune conditions including type 1 diabetes, crohns, colitis and alopecia (all within the past 2 generations).  I don't need the endo to confirm that I shouldn't be eating gluten, the symptoms I get when I eat gluten are enough to do that for me.  If your symptoms go away when you take out gluten (and both of your parents feel better without gluten too), then I would say and endo is not a necessity, positive bloodwork is enough.  That being said, if you don't believe your diagnosis without an endoscopy (some people don't) and won't keep yourself off gluten without it, you should get it done so you can remind yourself of how much it is hurting you even if you can't see it all the time. 
 

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Yep, I skipped the biopsy because I had positive tTG IgA and EMA IgA. I looked at the specificity of those tests and decided that was good enough for me. Plus, I knew that the biopsies are not perfect and have heard too many stories about people who doubted their diagnosis just because one out of three tests (the biopsy) was negative.

First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

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First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

one out of the three tests for celiac dx:(1)  tTG IgA, (2)EMA IgA and (3)biopsy.

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First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

 

 

one out of the three tests for celiac dx:(1)  tTG IgA, (2)EMA IgA and (3)biopsy.

 

 

I think that is what she said, too.  

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First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac

Sorry. I did not make that very clear, did I? I did mean that it is not unusual to have negative tests (like a biopsy) with other positive tests (like the tTG IgA and EMA IgA). Sometimes it happens in reverse with a positive biopsy and negative blood tests. I've never read that number anywhere, it's just an observation of many people's experiences that I have witnessed on this board over the last couple of years.

It is not unusual for there to be no visible damage to a celac's intestines. It seems to be the norm that damage is usually only seen on the biopsy. I have never heard a case, that I remember, of only visible damage with a fine biopsy.

As for self diagnosis and people asking it seriously, I think that is a larger factor for people who are dependent on others for their food - like kids. As an adult, I have met many people who did not take my food requirements seriously. It is annoying but not a problem as I bring my own food places. What others think doesn't make much of a difference to how I treat this disease. In the long run, it is all up to us.

Best wishes.

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Thanks everybody for your input it was really helpful. I decided to go through with the endoscopy biopsy. My dad is eating gluten again and going to have the blood test soon. The possibility of him having celiac seemed to make him rethink the biopsy thing. He said if blood work came back positive he would still want the biopsy. So they are on board. I think that it will help me not doubt the diagnosis. Plus I take a lot of nsaids for an injured back, and have wondered if I have an ulcer. maybe that is something they will see as well. Thanks again!

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