• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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?  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
0
NurseSati

Is An Endoscopy Really Necessary?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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. 
 

Share this post


Link to post
Share on other sites

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 

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.  

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,932
    • Total Posts
      943,581
  • Member Statistics

    • Total Members
      67,246
    • Most Online
      3,093

    Newest Member
    Melissa Keipert
    Joined
  • Popular Now

  • Topics

  • Posts

    • In Austin, Wildwood Bakehouse and Wilder Wood Restaurant are totally gluten free.  I had the chicken fried steak and gravy and onion rings!!!  Awesome!!!  
    • Hi there I have this exact same thing.. however I don’t have celiac that I know of.. I found this when google searching for what the heck is wrong with my face.  I was wondering if you ever found out.. or if it just went away. Thanks
    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • If Small was going to get rid of anything in a takeaway meal, it would be the bread with all its dreaded gluten. However, many scientists and nutritionists argue gluten is not a problem for people who do not have celiac disease or who are not "gluten-sensitive". Massey University senior lecturer in food ... View the full article
  • Upcoming Events