Do Doctors Diagnose without an Endoscopy?

[Madeline A]

Hello,

I recently went to go see my doctor because I've been waking up a lot in the middle of the night with mild, nonspecific stomach pain over the last eight months or so. Normally I take a tums and can fall back to sleep but he wanted to run some labs on me and they came back as follows:

DGP Ab IgA: 192
tTg Ab IgA: >100
Celiac Disease Dual antigen screen: 199

Based on my research these tests seem to be pretty accurate. He referred me to a GI doc who I'm going to see in a week and a half but my question was if I was going to have to have the endoscopy. One dietitian who I work with told me that in kids if your tTg is over 100 they don't even need to do the biopsy and will diagnose off the blood test alone. Does anyone know if that practice also carries over to adults? Do some docs require endoscopies and others don't? I'm just trying to figure out what to expect.

[cyclinglady]

The gold standard is still an endoscopy.  In Europe, they are diagnosing children without an endoscopy.  In adults, the majority of GI doctors still choose to do an endoscopy.  Why?  Celiac disease in adults has so many symptoms.  The blood tests are good, but not perfect.  You can also have concurrent  issues like Crohn's, cancer (very, very, rare), an ulcer, etc.  The biopsy can reveal the amount of damage.  Not everyone can do the endoscopy due to long wait times, being very ill or financial issues.  

Open Original Shared Link

Lab ranges can vary, so without those I can only assume you are positive,  

Personally, I needed it.  I wanted definitive proof.  What?  My hubby had been gluten free for 12 years.  It was hard on him.  I also only had anemia as my symptom.  I needed to know for sure!  But that is just me.  You need to decide, but make sure you get an official diagnosis.  Makes it easier to screen family members and you tend to get more support from medical and family, in my opinion.  My endoscopy was easy peasy!  

[GF-Cheetah Cub]

My daughter's TTG was through the roof high at age 10.   Her doctor offered to formally diagnose her with celiac without the endoscopy.   We decided to go with the endoscopy anyway to confirm the diagnosis.   We heard that blood tests can be wrong, and we did not want to accept that she has celiac.  

The endoscopy was a simply procedure, she has celiac disease.

The gluten free lifestyle for celiacs is not easy, I would want to be certain before taking it on.  

[StephanieL]

Dr. Fasano suggest the "4 of 5" rule.  Open Original Shared Link

[Posterboy]

On 6/1/2017 at 5:33 PM, Madeline A said:

Hello,

I recently went to go see my doctor because I've been waking up a lot in the middle of the night with mild, nonspecific stomach pain over the last eight months or so. Normally I take a tums and can fall back to sleep but he wanted to run some labs on me and they came back as follows:

DGP Ab IgA: 192
tTg Ab IgA: >100
Celiac Disease Dual antigen screen: 199

Based on my research these tests seem to be pretty accurate. He referred me to a GI doc who I'm going to see in a week and a half but my question was if I was going to have to have the endoscopy. One dietitian who I work with told me that in kids if your tTg is over 100 they don't even need to do the biopsy and will diagnose off the blood test alone. Does anyone know if that practice also carries over to adults? Do some docs require endoscopies and others don't? I'm just trying to figure out what to expect.

 

On 6/1/2017 at 7:41 PM, cyclinglady said:

The gold standard is still an endoscopy.  In Europe, they are diagnosing children without an endoscopy.  In adults, the majority of GI doctors still choose to do an endoscopy.  Why?  Celiac disease in adults has so many symptoms.  The blood tests are good, but not perfect.  You can also have concurrent  issues like Crohn's, cancer (very, very, rare), an ulcer, etc.  The biopsy can reveal the amount of damage.  Not everyone can do the endoscopy due to long wait times, being very ill or financial issues.  

Open Original Shared Link

Lab ranges can vary, so without those I can only assume you are positive,  

Personally, I needed it.  I wanted definitive proof.  What?  My hubby had been gluten free for 12 years.  It was hard on him.  I also only had anemia as my symptom.  I needed to know for sure!  But that is just me.  You need to decide, but make sure you get an official diagnosis.  Makes it easier to screen family members and you tend to get more support from medical and family, in my opinion.  My endoscopy was easy peasy!  

Madeline A,

I think cyclinglady has it right.

It is a matter on individual perspective or confidence needed to adhere to a strict gluten free diet.

some doctor's will use serology alone to diagnosis but traditionally a "biopsy" proven confirmation is used to confirm the blood tests.

here is  a thread that talks about some of the issues celiac candidates must ponder and consider when seeking a celiac diagnosis.

cycylinglady is right it might be other GI related conditions that must be ruled out for a definitive diagnosis.

the above thread talks about SIBO, NCGS and Pellagra as alternative differential diagnosis just like cyclinglady mentioned chron's etc.

IF you need the biopsy for your own "peace of mind" then by all means pursue it but many people on this board stop: ) short of this "biopsy proven" diagnosis stage so technically they might be a NCGS instead unless you believe like some doctor's do today that in many patients positive blood serology is a positive diagnosis.

dr. mark hyman made this conclusion for his own patients 5+ years ago and still the medical (and Celiac) community is slow to adopt this new testing technique.

Open Original Shared Link

where dr. hyman says quoting

"When you get these tests, there are a few things to keep in mind.

In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

But as cycylinglady says she needed it for her own peace of mind.

jmg (see thread) and myself (and others on this board) had only positive blood work and that is enough for us to eat gluten free.  But there are still others' who struggle with this question for themselves.

For me "Positive is Positive"

And I am thankful for that .  . . . because that is all I needed to confirm many of the ill effects in my mind I was having that had no good answer otherwise.

I hope this is helpful.

posterboy by the grace of God,

 

[Posterboy]

Madeline A,

There was new research posted on the celiac.com site today about Celiac disease in kids that backs up what your doctor's office was claiming.

mainly serology alone can spot celiac disease in pediatric patients (children) https://www.celiac.com/articles/24797/1/Can-Antibodies-Spot-Celiac-Disease-in-Kids-Without-a-Biopsy/Page1.html

how widespread it is in adults is harder to gauge.  I think cycylinglady (from the research I've done is right)  it is more common in Europe.

but this research (linked at the bottom of the pediatric article) says it should also be applicable in adult patients as well.

https://www.celiac.com/articles/23204/1/Intestinal-Biopsy-is-Not-Necessarily-Required-to-Diagnose-Celiac-Disease/Page1.html

as to whether your doctor prefers the "biopsy" proven method probably is a matter of individual practitioner's tastes/preferences.

But research is trending away from the biopsy proven method in lieu of at least as sensitive and less invasive serology methods.

the researchers noted  quoting

"It was found that when two antibody tests are used, the reliability of the tests increased substantially, weeding out a great many false positives, as well as picking up some false negatives. When three tests were used, the numbers became even more accurate – when used concurrently and all three show a positive result, the IgA anti-dpgli, igG anti-dpgli and IgA anti-tTG achieved an 87% positive likelihood and .01% negative likelihood (compared to a positive likelihood of only 7% and negative likelihood of 0.04% with just the IgA anti-tTG)."

they conclude their finding by saying quoting

"When considering that biopsy really only has a real-world diagnostic accuracy rate of about 90%, the three test combination utilized in this study achieves strong enough numbers that biopsies are starting to look unnecessary. Biopsy still might be the surest way of detecting celiac disease, but this study shows that it is not necessary in all cases, and patients seeking celiac diagnosis have a few more tests they can ask their doctors for."

Is a 3 percent increase in confidence worth an invasive procedure is the question you have to answer for yourself.

I am glad my doctor was forward thinking enough to diagnose me with serology alone (traditionally/historically considered a NCGS diagnosis) instead.

But newer research says' blood test might be just as accurate and predictive in the absence of a "biopsy" proven celiac diagnosis.

I would say this is an exciting time to be diagnosed with/as a celiac if only the community at large can accept these findings then it could avoid a lot of extended gluten challenges followed by failing health in the meantime all the while waiting on a "biopsy" proven diagnosis when today the blood serology is now being proved as accurate for diagnostic purposes.

but I certainly understand you wanting to be informed.

I do worry that we have put such a burden on the "biopsy" proven portion of a diagnosis that wanting to skip it could cause many of your friends to question the validity of your diagnosis.

but I think we could be on the cusp of eliminating the biopsy as a necessary requirement like it once was required twenty or thirty years ago.

if you do still decide on biopsy please read this online article by dr. rodney ford

Open Original Shared Link

It can be described in short have them take multiple (4 or 6) biopsies samples for most accurate biopsy results.

***this is not medical advice but I hope it informs you as to what is the best decision for you.

I hope this is helpful.

posterboy,

[Fbmb]

I had an endoscopy. I just had the TTG antibody screening and my result was also >100. I have a family history of Celiac. My gastrointerologist did tell me that regardless of what the biopsy told us, treatment would be the same - a gluten-free diet. Period. I kinda thought it was pointless to do that, but looking back I'm glad that I did because it's important for them to have something to compare too. It's my baseline. If in the future I have to have another endo. they'll have my original to see how things compare. 

My son had his done and I was really resistant to that because his blood work showed he had it as well. His GI told me that they like to do them because they can see how extensive the damage is and they can decide if the child needs extra supplements for a while. His pediatrician thought that was a bunch of bunk and said we could test his blood to know that. Regardless, they did it and it gave us an official diagnosis. 

[Gemini]

With the numbers that you got back from your blood work, it is highly probable that you have Celiac Disease. I an not sure what this test means as I have never seen this before: Celiac Disease Dual antigen screen: 199 but having a tTg of over 100 points heavily to Celiac and your DGP shows that you are reacting to gluten in your diet.......significantly.

I had extremely high numbers on my blood work and declined the endoscopy. I was too sick to have it done. I have never doubted my diagnosis, ever.  No doctor has ever doubted my diagnosis, either, once they see my diagnosis blood work.  I think doing the endoscopy is good if your blood work is inconclusive or barely positive but with really high numbers like you have, it probably is not necessary unless you will need that proof to stay on the diet.  I have never found the gluten-free diet to be hard or difficult but it is inconvenient, at times. You have to do a lot more work when you travel but Celiac has not kept me from traveling out of country.  As an adult, the decision is really up to you and what you are comfortable with.  I wish you all the best!

[Madeline A]

Thank you all for the input!

After seeing the GI doc, he wanted to do an endoscopy not because he didn't think he would find damage but mostly because I have very mild to no outward symptoms so he would have a reference point for what kind of damage no symptoms looked like on me in case the symptoms were to ever get worse. Luckily he had a cancelation so I was able to get in just two days later for biopsy. As expected, he found significant damage. So last night I had pastries from my favorite bakery and cleaned out my kitchen and today I start gluten free for real!

[Jmg]

I know it's a sad time saying goodbye to pastries and more but at least you have an answer and can now start to heal

There's lots of good advice for you here: