Really high tissue transglutaminase

[StephD]

Hello, 

2 weeks ago my daughter had bloodwork done.  She is a healthy 9 year old girl but we did bloodwork because she when she had gone to the bathroom she noticed what looked like drops of orange oil floating at the top of the water.  The TTG level came back at greater than 250.  I spoke with the the gastroenterologist office and they said to repeat the bloodwork due to the level being so high.  The repeat bloodwork resulted exactly the same.  I know they are telling me to keep giving her gluten for now but I’m worried that if her level is so high than what is happening to her small intestine.  Has anyone ever heard of a level this high? 

[trents]

StephD, welcome to the forum!

Can you post what the reference ranges are for negative, positive, etc? Different labs use different scales so a number like which you gave needs a context. In the UK if the tTG-IGA is 10x the cutoff for negative, most doctors do not require an further testing, such as a biopsy.

There is not much question that your daughter has celiac disease. The tTG-IGA is considered to afford both good specificity with good sensitivity.

Is the GI doc wanting to do an endoscopy with biopsy? Is that why he told you to keep feeding your daughter gluten? If so, how long before that procedure can happen?

On  the other hand, she has had two very high positive tTG-IGA test values. So the first one was not a fluke. Is there a particular reason you need to have more testing done? No one would disagree with you on this forum if you just concluded she has celiac disease and started her on a gluten-free diet.

[StephD]

Hi Trents, 

the reference range for the tests were 0-15 would be negative and 250 was the highest the test would count, so both tests were too high to count.  I was told that if the second test was positive then she has to have an endoscopy done with biopsy.  I hate knowing that what’s she’s eating is causing some issue but she doesn’t have any complaints.  I want to start changing her diet but have been told not to until the can so the testing and she doesn’t have an appointment until 4/9 and that would be her first visit with the gastroenterologist. 

[trents]

Again let me emphasize that you are not obligated to go forward with the biopsy. There is no doubt in my mind that she has celiac disease. On he other hand, it is only a month away and you say she is in no distress.

Concerning the "orange oil" in her stool, if blood was coming from her duodenum (the part celiac disease affects) then I wonder if it would be a bright color like that. Blood from high up usually turns dark (black or dark green) by the time it gets pooped out. Has this happened more than once? Every once in a great while I have red blood in my stool but I think it's probably just a ruptured small blood vessel along the wall of the lower (large) bowel, similar to an occasional nose bleed.

Is your daughter under-sized for her age?

Edited March 11, 2022 by trents

[StephD]

I am so confused as to why the doctor is telling me that she will need to do a biopsy.  I’m baffled by this because she is such a good eater and she’s never had any symptoms of any gastrointestinal issues.  The orange in her bowel movements was explained to me as fat from foods that her body did not absorb. 
 

I would be comfortable with her being diagnosed based on the bloodwork.  It is upsetting me to be told to keep giving her gluten until they officially diagnos. 
 

She is not undersized for her age.  She considers herself short, but I’m not exactly tall myself.  She has consistently fallen within the expectations for her age, always between the 70% and 90 % for her age group. 
 

[trents]

It is not unusual for GI symptoms to be absent in the celiac population. We call them "silent" celiacs. That can eventually change as more damage is done to the small bowel lining.

What led to her diagnosis if she seems to be asymptomatic? Was it the orange in her BM's? Has she had a CBC and a CMP to check for things like anemia or elevated liver enzymes that might be clues for having celiac disease in addition to the antibody blood work?

[Scott Adams]

Please share this study with your doctor to see if a biopsy is necessary:

 

[Scott Adams]

PS - This study is also important, and we have a summary about it that will be on our site on Monday:

http://dx.doi.org/10.1136/archdischild-2021-322000 

This indicated that CD can be diagnosed in children at 5x levels...

[StephD]

Hi and thank you for the responses.  I’m still waiting to hear back from the gastroenterologist.  I was able to get a sooner appt with a pediatric GI at cohens childrens.  I’m hopeful that they will listen to my concerns and not tell me that she has to do an endoscopy.  
 

trents, her cbc and liver enzymes were completely normal,  the only thing that was off was the tissue transglutamise, that and she had gLA level of 68.  I am a nurse and based on what I see I believe she has celiacs, I am just dumbfounded that I’ve been told to not change her diet since my mind has not stopped and I want to change her diet now.  
I am going to keep pushing to diagnose her based on the study’s done relying on the bloodwork without the need for biopsy. 
 

[Scott Adams]

Please let us know how things turn out, and good luck!

[StephD]

Thank you, I will keep you posted!

[StephD]

On 3/11/2022 at 6:05 PM, Scott Adams said:

Please let us know how things turn out, and good luck!

So I’m still waiting to hear from the doctor regarding her results but got the second set of bloodwork back today and it’s absolutely positive.  I’m so overwhelmed trying to figure out where to start and getting frustrated waiting to speak with the doctor 

[trents]

StephD, why do you feel such a strong need to get an official diagnosis?

[StephD]

Mostly because I’m concerned about the drs instance on a scope for her.  I’m trying to make the change over to gluten free but I guess I got myself a little overwhelmed 

[trents]

14 minutes ago, StephD said:

Mostly because I’m concerned about the drs instance on a scope for her.  I’m trying to make the change over to gluten free but I guess I got myself a little overwhelmed 

Yes, but in the final analysis the doctor can't force you to get your kid scoped. She's your kid and the doctor works for you. Whether or not your daughter has an official dx has no bearing on whether or not she actually has celiac disease. She either has it or she doesn't.

I am a retired hospital chaplain and I know that in the hospital environment (or a clinic environment) doctors were kings. Nurses are obligated to do what doctors told them to do. But that doesn't have to spill over to the outside. Now, I don't know if your nursing is done in a hospital or a clinic environment but it occurred to me there might be an issue with that in your angst.

Are you getting any push back from your daughter on this?

Edited March 15, 2022 by trents

[Scott Adams]

We did publish our summary of the study I mentioned, which indicates that in children with 5x positive antibody levels there is no need for a biopsy:

I realize that doctors may not be up to date on the very latest research, however, there is no reason that you can't be up on it. Of course it is your call whether or not you'd like a confirmation of celiac disease via a biopsy, but the current science indicates that it may not be necessary. 

[Kate333]

Hi Steph.  My first TTG near the time of my original diagnosis was 224.  The good news is that children heal quickly on a STRICT gluten free diet and her future TTG blood tests numbers should rapidly decline as the remaining gluten in her body is "flushed out" and she begins to heal.    I noticed my TTG numbers declining by 50% each time I got a post-diagnosis blood test.

The scope and biopsy seem daunting but are pretty routine and your daughter will be sedated the whole time.  Some people like to skip it, but it also gives your doctor a good baseline look at the gut to assess damage (if any).  But, as I noted, kids rapidly heal on gluten-free diet, so perhaps not necessary. 

The hardest part of this will be adapting a strict gluten-free diet for your daughter.  By strict, I mean no "cheating"--only reducing gluten consumption or eating it "as an occasional treat," and or "risky eating" outside the home, in restaurants for example, where gluten cross-contamination is very common despite "gluten free" menu advertising).  Also, consider having all family members get the same blood test for gluten antibodies--even those with no obvious symptoms--as celiac disease is a condition that runs in families.  If you or others are celiac disease positive, perhaps that will motivate adoption of a gluten-free diet for ALL family members and provide an extra boost of emotional support for your daughter as she heals. 

 

 

[StephD]

Thank you to everyone who gave me some insight.  We were at the gastroenterologist today and he told me that there is no need to do a biopsy, she has celiacs.  Trying to get all the information I can to make sure I make all the right choices to guide her through 

[trents]

4 hours ago, StephD said:

Thank you to everyone who gave me some insight.  We were at the gastroenterologist today and he told me that there is no need to do a biopsy, she has celiacs.  Trying to get all the information I can to make sure I make all the right choices to guide her through 

Thanks for the update, StephD. There is a learning curve involved in eating gluten-free and mistakes will be made occasionally. But when that happens, keep in mind that overall you are still in a healing tragectory with your daughter. Most of the challenges will be in social settings involving food like birthday parties. I know you are relieved that she won't have to endure the endoscopy/biopsy.

[Scott Adams]

20 hours ago, StephD said:

Thank you to everyone who gave me some insight.  We were at the gastroenterologist today and he told me that there is no need to do a biopsy, she has celiacs.  Trying to get all the information I can to make sure I make all the right choices to guide her through 

Just FYI, we just published this article so the trend to use blood tests only to diagnose celiac disease seems to be gaining more traction: