Is Endoscopy Necessary?

[CarynL]

Hi everyone!! This thread has been a great resource to me. I recently got bloodwork back that suggests Celiac but my GI doctor wants to do an endoscopy & biopsy to confirm. Would be so grateful if any of you could let me know how likely I am to have Celiac based on my numbers below). I would like to have an idea how necessary the endoscopy is. (It’s going to cost a fortune!?) Thanks so much!!!

Diamidated Gliadin Abs, IgA 18 (normal)

Diamidated Gliadin  Abs, IgG 81 (high)

tTG IgA 4 (high)

tTG IgG 4 (normal)

Endomysial Antibody IgA: Positive

Immunoglobulin A, Qn, Serum: 129 (normal) 

 

 

[squirmingitch]

Hi Caryn! 

I'm sorry but it's not as simple as how severe the #'s are. BTW, the ranges would be important b/c every lab has different ranges so we have no idea HOW high your #'s are in comparison to the normal range that lab is using. One positive is all it takes to trigger an endoscopic biopsy. However, it looks like you have 3 positives.

Here's the thing, it's almost unheard of for a doctor to dx you on blood panel & symptoms alone. Endoscopic biopsy is the gold standard for diagnosis. BE SURE TO CONTINUE EATING A FULL GLUTEN DIET UP UNTIL THE ENDOSCOPY IS COMPLETED.

Why is it important to get a hard dx? B/C your next doctor may not believe you. B/C celiac is genetic & if you have an actual dx, then it's MUCH easier to get your 1st degree relatives tested b/c your dx will be taken seriously & your 1st degree relatives need to be tested every few years b/c celiac can present at any time in life, old, young, middle age.

[Gemini]

Hi Caryn,

I just wanted to give you another opinion on diagnosis without biopsy.  It can be possible but a few things to point out.....

I failed all the tests in the panel by very high numbers and presented with classic Celiac.  I was also very sick at the time and just could not go through with the biopsy.  According to most medical information out there, if you have a positive EMA and positive tTg, that is a slam dunk for Celiac.  The odds are something in the range of 98% positive for Celiac with those two tests being positive.  Your tTg was not that high but it is positive and so is the EMA.  Celiac Disease is the only disease that will give you a positive on the EMA.  

I personally have never had a doctor doubt my diagnosis once they look at my original testing.  It helps I am a thin Celiac, which is stupid, but that’s how doctors think.  My response to the gluten-free diet was nothing short of profound so with the testing results and the response to the diet, there is absolutely no doubt for me.  I also get extremely sick when glutened but that is so rare for me.  I just never cheat and am very careful with my diet.  This is how you have to be if you do not have the biopsy.  You cannot doubt yourself and you should not cheat.  Some people find that difficult without the pretty picture of your flattened villi.

As far as family members go, having a positive biopsy does not matter to most people because many family members do not want to be tested.  My family resisted my attempts to educate them and were not very sympathetic to my diagnosis. Most have never been tested, even the ones that have symptoms.  A few have been diagnosed when they could no longer live with the symptoms but they still do not talk to me about it......and that’s because they cheat.  I see them being careless all the time but I say nothing.  They will pay the price down the road.

If you do not have the biopsy, then you could repeat your blood work in 6 months to see if the numbers have gone negative or have come down.  It may take a bit longer so testing needs to be repeated at 1 year.  Mine were in the normal range at the 1 year mark after following a strict gluten-free diet.....with zero cheating which I never found difficult to do.  I never in my life want to be that sick again!  I understand the cost of testing as I have a high deductible plan also.  It’s great insurance once you get past the deductible but you still have to shell out a lot of money.  This is a decision you will have to think about and make on your own.  Your blood work is not borderline, really, as you tripped the EMA and that is the one test that gets a doctor’s attention for it really being Celiac.  But because of liability and the need to pay for the endoscopy clinics that are so popular, doctors can be stubborn about obtaining a diagnosis in other ways.  If you just jump into the diet and your symptoms vastly improve over time, then that is another clue because if you don’t have Celiac, it won’t make you feel any better.  Are you very symptomatic?  Do you suffer from anemia?  You don’t have to have either to be a Celiac but many are symptomatic and suffer from anemia that doesn’t resolve with iron supplements.

You could also do gene testing to see if you carry any of the Celiac related genes that give you the pre-disposition to develop the disease.

Good luck to you on whatever you decide.  The diet isn’t horrible, no matter what some say.  I’ve been doing this for almost 15 years and my stomach has never been better.  I feel  better than I did at 30 and I am 60 now!  

 

[CarynL]

Thank you both very much. So appreciate your time and input!! I am going to go ahead with endoscopy - I feel that I need it mentally and also to facilitate testing for my children. Again am very grateful! Thank you!!!

[Karaokequeen]

On 12/24/2019 at 4:25 AM, Gemini said:

Hi Caryn,

I just wanted to give you another opinion on diagnosis without biopsy.  It can be possible but a few things to point out.....

I failed all the tests in the panel by very high numbers and presented with classic Celiac.  I was also very sick at the time and just could not go through with the biopsy.  According to most medical information out there, if you have a positive EMA and positive tTg, that is a slam dunk for Celiac.  The odds are something in the range of 98% positive for Celiac with those two tests being positive.  Your tTg was not that high but it is positive and so is the EMA.  Celiac Disease is the only disease that will give you a positive on the EMA.  

I personally have never had a doctor doubt my diagnosis once they look at my original testing.  It helps I am a thin Celiac, which is stupid, but that’s how doctors think.  My response to the gluten-free diet was nothing short of profound so with the testing results and the response to the diet, there is absolutely no doubt for me.  I also get extremely sick when glutened but that is so rare for me.  I just never cheat and am very careful with my diet.  This is how you have to be if you do not have the biopsy.  You cannot doubt yourself and you should not cheat.  Some people find that difficult without the pretty picture of your flattened villi.

As far as family members go, having a positive biopsy does not matter to most people because many family members do not want to be tested.  My family resisted my attempts to educate them and were not very sympathetic to my diagnosis. Most have never been tested, even the ones that have symptoms.  A few have been diagnosed when they could no longer live with the symptoms but they still do not talk to me about it......and that’s because they cheat.  I see them being careless all the time but I say nothing.  They will pay the price down the road.

If you do not have the biopsy, then you could repeat your blood work in 6 months to see if the numbers have gone negative or have come down.  It may take a bit longer so testing needs to be repeated at 1 year.  Mine were in the normal range at the 1 year mark after following a strict gluten-free diet.....with zero cheating which I never found difficult to do.  I never in my life want to be that sick again!  I understand the cost of testing as I have a high deductible plan also.  It’s great insurance once you get past the deductible but you still have to shell out a lot of money.  This is a decision you will have to think about and make on your own.  Your blood work is not borderline, really, as you tripped the EMA and that is the one test that gets a doctor’s attention for it really being Celiac.  But because of liability and the need to pay for the endoscopy clinics that are so popular, doctors can be stubborn about obtaining a diagnosis in other ways.  If you just jump into the diet and your symptoms vastly improve over time, then that is another clue because if you don’t have Celiac, it won’t make you feel any better.  Are you very symptomatic?  Do you suffer from anemia?  You don’t have to have either to be a Celiac but many are symptomatic and suffer from anemia that doesn’t resolve with iron supplements.

You could also do gene testing to see if you carry any of the Celiac related genes that give you the pre-disposition to develop the disease.

Good luck to you on whatever you decide.  The diet isn’t horrible, no matter what some say.  I’ve been doing this for almost 15 years and my stomach has never been better.  I feel  better than I did at 30 and I am 60 now!  

 

Sorry to interupt but what is EMA?

 

Thanks 

[squirmingitch]

3 hours ago, Karaokequeen said:

Sorry to interupt but what is EMA?

 

Thanks 

If you have celiac disease, your immune system responds abnormally to a protein called gluten. ... Your body makes antibodies to the gluten called endomysial antibodies (EMA). These autoantibodies cause intestinal swelling and, if undetected, can damage the lining of your small intestine.

https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=endomysial_antibody

[BuddhaBar]

On 5/2/2019 at 2:23 PM, Olivia28 said:

I have had Type 1 Diabetes for 3 years and just got a call from my Dr. that I tested positive for Celiac Antibodies. I don't believe I've ever been tested for them before. I have no symptoms. This is what my lab work says:

Endomysial Antibody (IgA) Screen: POSITIVE
Transglutaminase IgA Antibodies 12 U/ml IgA 182 (81-463 standard range)
Endomysial Antibody Titer 1:20 (standard range <1:5)

I'm terrified of having an endoscopy. What is the advantage to having one? Either way I will likely be put on a gluten-free diet, right? Even if an endoscopy shows no damage, I likely still have Celiac (or will develop it), right? 

Thanks so much! I've been blindsided by this diagnosis and any help would be appreciated.

 

I had an endoscopy years ago due to reflux issues and it was the most terrible thing I've ever experienced. So you can imagine how I felt when I found out I had to do one more! But I asked the doctor if I could get a double dose of sedatives and also double dose of throat anesthetic spray. I don't remember anything of the endoscopy until they were almost done and pulled the camera up again. I was completely GONE. I just had a weird "dream" about having a stick in my throat and that's all. Ask for a double!

Edited December 27, 2019 by BuddhaBar

[Gemini]

With a positive EMA and Type 1 diabetes, I would say you are a strong candidate for Celiac Disease.  The normal range for the tTg IgA test was not listed so I don’t know if 12 is positive or not.  I think the latest numbers show that 10-15% of Type 1’s are Celiac and they tend to be silent, meaning no noticeable symptoms.  Type 1 and Celiac have a genetic link, unfortunately.

If the endoscopy is negative, then it could just mean that they missed the damage on biopsy, as it can be very spotty.  It’s like looking for a needle in a haystack, unless you have total or almost total atrophy.  The surface area of your small intestine is HUGE!

You might have to consider the endoscopy as you have no symptoms........or no symptoms that you recognize as being associated with Celiac.  Some people say that and after they follow the gluten-free diet for a bit, realize they did have some symptoms that went away.  Good luck with testing!