Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Is An Endoscopy Really Necessary?
0

12 posts in this topic

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

0

Share this post


Link to post
Share on other sites


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

0

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.

0

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.

0

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

0

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.

0

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. 
 

0

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 

0

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.

0

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.  

0

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

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.

0

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!

0

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
      104,344
    • Total Posts
      920,486
  • Topics

  • Posts

    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats in the past few months (thanks kids) which I took a lot longer than normal to recover from then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,414
    • Most Online
      1,763

    Newest Member
    Vic40
    Joined