Thursday, May 7, 2020

Jack's Celiac Test Results Explained

Jack is doing great! He just wrapped up his 1st year of
middle school (6th grade). Jack is a straight A student,
who loves hanging with friends, playing basketball,
baseball and of course, Xbox.
It’s our 10th year of being a part of Celiac Disease Awareness Month.  

Jack, is now 2 months away from turning 13!!! Not another teenager in the house?! NOOOOOOO. 😭😉

For Celiac Disease Awareness Month, I want to share with you, Jack's official celiac test results.

Here's just a little back story, before we get to his test results.

When Jack was diagnosed at 2 years old, in August 2009, he was one of the “lucky” ones. Meaning, he was diagnosed after just ONE doctor's appointment. This RARELY happens. BUT, hopefully, it's happening more today.

I remember getting the call from the pediatrician, "“Jack has celiac disease. It’s where he has to avoid gluten. We will put you in touch with a Pediatric Gastroenterologist.”

Jack at 4 years old, embracing his gluten-free lifestyle.
Of course, he really didn't understand what it all
meant, except that "gluten" hurt his tummy.

I WAS NOT told at that time to have Jack CONTINUE EATING GLUTEN. So, I just did what any parent would do. It was about lunch time, and I thought to myself, "Okay, no gluten, what has no gluten?"

Long story short, I stopped feeding him gluten right away. And, POSITIVE changes began almost immediately. It was AMAZING to at the least. TRULY ASTOUNDING. 

Two weeks after his Pediatrician diagnosed him, I took him to see Pediatric GI Doctor, Dr. Steven Steiner, at Riley Children's Hospital in Indianapolis.

Dr. Steiner said, “You and I both know from his bloodwork and his diet change that he has celiac disease. I do not feel at this time, he should eat gluten, in order to do a biopsy." 

NOTE: Each diagnosis is different. Please don't disregard a biopsy if one is suggested.

I agreed as well. I knew Jack had celiac disease, but, I wanted to know more. What did his actual celiac test show? What did it mean? What are all these < and > ranges? And so on.

I'll show you exactly what I mean. NOTE: Don't be SURPRISED if you or your child's results look quite different. Different labs, share results differently.

So, let's take a look at Jack's celiac test results below. I went ahead and typed in RED to clarify any blurriness from this being a faxed copy.

A year ago, I reached out to Dr. Maureen Leonard via email. Dr. Leonard is the Clinical Director of Mass General's Celiac Center for Research and Treatment. I asked if she could help explain Jack's numbers compared to the the "reference range" and here is what she had to say:

"The reference range just means- what is the actual normal value- so for AGA IgG the value is normal if less than 10 and abnormal if greater than 10. If the value in the value column has a > than it is off the charts.

We really focus on just two of these laboratory findings. The TTG IGA and the EMA IgA so we can forget about the others for clinical purposes.

Here for TTG the reference range of <4 is considered normal (ie any value from 0 -4 is normal). The value for Jack which is 100 is as high as the scale goes so Jack’s TTG is >100 or off the charts so quite high. We usually consider something more than 10 times the upper limit of normal (in this case the maximal normal is 4 so 10* 4=40) so anything above 40 is high. Since his number is >100 it is more than 10 times the upper limit of normal and thus quite high.

The EMA IgA is just a qualitative measure here (sometimes they give a number but here the reference range or normal range is negative) but when TTG is high and EMA is positive it is >95% likely that this is celiac disease and a biopsy makes it 100%."

I definitely understood it much better, after Dr. Leonard explained it. To be honest, when I saw, 
"+ + + +" - there wasn't much more I needed. But, over the years, I have found the tests associated with celiac disease, hard to explain. What are these particular tests? And, what is happening in the body to cause these antibodies to react? To help better understand celiac disease, it makes sense to understand the two tests that are most prevalent when diagnosing celiac disease and that is TTG and EMA - so what are they?

TTG (provided by Jane Anderson over on

"The tTG test, also known as the anti-tissue transglutaminase test or anti-tTG, is the first-line option for antibody testing. tTG is an enzyme that plays a role in wound healing, cell-to-cell adhesion, the regulation of cell survival and death, and other biological processes. It also is involved in the breakdown of gliadin—a water-soluble protein in gluten that's essential for bread to rise during baking and that is easily absorbed by the intestines.

The interaction between tTG and gliadins is complex. After tTG breaks down gluten, the subsequent breakdown of gliadins in the bloodstream will activate tTG in the small intestine, causing enzyme levels to increase. In response, the immune system produces defensive tTG antibodies that can be detected by the tTG test."

EMA (provided by Jane Anderson over on

"Endomysial antibodies are produced in a layer of tissue surrounding muscles called the endomysium which contains a form of tTG that, when exposed to gluten, will activate and churn out antibodies in an autoimmune response.

The endomysial antibody (EMA) test is considerably more accurate than either the tTG or DGP test. It's also more complicated and expensive: Because the antibodies bind with smooth muscles, frozen esophageal or umbilical cord tissue is needed to draw the antibodies from the blood sample in high enough concentrations to elicit an accurate result."

So, we have come a LONG WAY since 11 years ago. We have. I am thankful for the awareness that has been raise, the many loyal brands who have committed to manufacturing certified gluten-free products, and not to forget, THANK YOU TO THE MANY doctors, nurses and researchers who have invested countless hours into understanding this autoimmune disease.

As Jack turns 13 in August, I want him to have a thorough physical examanation. He is doing great overall, I have no immediate concerns. This is more for "maintenance" than anything. To keep Jack on the right path, and make sure all the proper vitamins are being absorbed. From testing vitamin levels, bone density and possibly a biopsy to see how his intestines are doing after 11 years. I PERSONALLY think a biopsy is good for anyone after so many years of having celiac disease. So, that will be my priority in the coming year, as well as 
teaching Jack more about this autoimmune disease. From understanding "villi" to his small intestines, from genetics, to absorbing nutrients, bone health and so on. 

I hope you found this post informative/helpful. For more information on Jack, his Dad having celiac disease as well, and genetic testing, check out the following links below:

Jack's Story

Genetic Testing

Jack's Dad - Celiac Story