• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
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.

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
      106,422
    • Total Posts
      930,478
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Love reading this story as it is rare (I think) to find someone else with the swallowing issues!  Hate that this is your experience however!   My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again.  It got better but never resolved.  Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again.  Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free?  Does it ever actually go away and stay away or will it always pop up from time to time?
    • I will say what everyone else says and get tested again with the endoscope and biopsy to confirm, you will need to be on gluten for 12 weeks for blood test 2 weeks for endoscope at least a slice of bead a day.  The thing about celiac is many symptoms can be quite minor, hell even before I had my MAJOR symptoms show I had some of the other issues show up in my every day life and I just thought it was normal.  Regardless if you keep eating gluten with celiac disease it will slowly eat away at your body internally til it does become a problem. Celiac is a autoimmune disease that reacts to the gluten proteins, and has misdirected attacks on your own body internally by mistake trying to kill the gluten. Now the damage can lead to all kinds of other auto immune diseases, random allergies, food intolerance, and even cancer.   I suggest if you do have it, stay on the gluten-free diet, your just basically changing brands there are many gluten-free food versions of everything now days. Be thankful you got this early, I developed issues with dairy, corn, peanuts, and a whole list of others along with another autoimmune disease Ulcerative Colitis that makes it so I can not eat sugars or carbs or my intestines swell.  Getting on a gluten-free diet before your damage progresses will not only keep you healthier for longer, and let you live a pretty normal life but also save you from this pain and very limited diet if the damage progresses too much. As to your fatigue, you changed over to gluten-free diet, you stopped eating a bunch of the Fortified foods, and depending on the route you took of either whole foods ore more processed foods. You could be eating to many empty carbs, starches, and not enough nutrients. OR if you took the whole foods approach you be lacking in your daily calorie intake or not the right ratio of nutrients. You might have to supplement a few of them.
    • REALLY odd call out here, I am attending a anime convention called A-Fest in Dallas come August, I need someone to split the room with it who is gluten-free. I take extra precautions, I COOK all the food, bring only CERTIFIED foods into the room, The room will be Gluten Free, Corn Free, Dairy Free, Peanut Free. I am trying to find someone to split the room cost with, that would be safe to be around I CAN NOT AFFORD to get sick at one of these things, it is one of my few joys left in life and get very paranoid around them. So I need someone who is also gluten-free to make sure the room stays safe (YES I have done with with a non celiac with the rules down and well stuff happens so not chancing it). Room split is food coverage comes to $400 if it is just two people.  4 day convention, I will arrange a meal plan around your diet as long as it is free of my allergens. I will also provide various snacks, baked goods, and even stuff to take home with you.   https://animefest.org/ ^Convention info.
    • Hi Jennifer, This thread might have some information that would help you.   Your doctors are pretty lame IMHO.  Perhaps you can find a celiac group in your area that has local meetings for support.  They might also suggest a different doctor who knows how to treat celiac patients.  
    • All the above posts are full of good advice. What I'd like to add is, if you have coeliac disease and continue to eat gluten, you run the risk of other autoimmune diseases in the future as well as osteoporosis, malnutrition and even cancer, so even if you had no symptoms at the beginning, and may also not have any symptoms if you eat gluten (not all coeliacs do), the damage is still being done to your gut and the rest of your body, so please be aware of this.
  • Upcoming Events