Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sky High Tissue Transglutaminaise Igg ?

BeautifulSkunk

Recommended Posts

BeautifulSkunk Newbie
BeautifulSkunk
Posted

My ten year old daughter has been struggling with GI issues since 2011. For the first two years, we were told that she had ulcerative colitis. We had a change of doctors within the same clinic and the new one advised us that she had Crohn's (according to her medical file). Ugh!

We've recently moved to a new clinic, citing incompetence at the old one, and I requested all lab results sent to me.

The lab work seems to be indicative of Celiac but I'm so confused at this point... Take a look.

Tissue Transglutaminaise antibodies

tTG IgA 3 (0-15)

tTG IgG 122 (0-15)

ESR Westegren Sedimentation Rate

ESR 26 (0-16)

IgA (Immunoglobulin A)

IgA 223 (25-200)

Can anyone help me interpret this?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

You are correct that her IgG ttg is hugely high.  I think it is a good idea to push for further investigation of that, definitely an endoscopy if she is currently consuming gluten.

nvsmom Community Regular
nvsmom
Posted

According to the following site, the specificity of the tTG IgG is 95% so a positive that high is most likely due to celiac disease.Open Original Shared Link[tt_news]=172034  I would assume celiac disease at this point.

 

I agree that you might want more blood tests and/or and endoscopic biopsy.  The rest of the celiac tests are

tTG IgA and tTG IgG (repeat testing can be helpful)

DGP IgA and DGP IgG - very good tests for early celiac disease

EMA IgA

AGA IgA and AGA IgG - older and less reliable tests

(total serum IgA - run to make sure there is enough IgA for accurate testing - hers is more than fine)

 

For accurate tests one must be eating 1-2 slices of bread per day (or equivalent) in the 8-12 weeks prior to testing. The biopsy only requires a 2-4 week gluten challenge.

 

A high sed rate can mean inflammation due to autoimmune disease (like celiac disease), infection or a few other things. A high sed rate is not uncommon in untreated celiacs.

 

More information on testing and pediatric celiac disease below:

Open Original Shared Link

Open Original Shared Link
 
Best wishes. I hope you find answers.
BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

She had a biopsy done at this same time and it seemed to contain high markers for celiac as well. For instance, the biopsy of the duodenum was positive for villous atrophy and increased epithelial lymphocytes. 

 

Since requesting copies of this lab work...(Did I mention that this lab and histopathology was from 2011?) I have taken her off of gluten. She was getting really sick (lots of diarrhea and anemia). If gluten was the villain here, I didn't feel like she could wait.

To be honest, I'm probably leaning on the hope that this has been the answer that someone missed along the way. A lifetime of dealing with a gluten intolerance seems a little less scary than the unknowns of Crohn's. 

 

And please, I don't mean to offend or make light of Coeliac. 

kareng Grand Master
kareng
Posted

These tests are from 2011? The doctor never said a thing to you? Wow!

We completely understand that Celiac is better than some other diseases. So don't worry about that.

LauraTX Rising Star
LauraTX
Posted

Wow, looks like they completely missed the diagnosis.  What a shame.

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

Wow, looks like they completely missed the diagnosis.  What a shame.

Yes! I can hardly wait to talk to her present gastroenterologist tomorrow. I've been pretty consumed with these lab papers this weekend. I feel like I've learned a ton. I can only hope that I'm not overlooking something. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

:( Oh geez. Her doctors really blew it, didn't they?

 

Good luck with going gluten-free. I hope she has a speedy recovery.

 

Oh, and you should get the rest of the family checked every 2 years as celiac disease has a genetic component to it.

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

Thank you for the advice/encouragement. I'll update after I've talked with her doctor.

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

Well...the doctor didn't call me today like he said he would but I know that they can get busy.

 

In the mean time, I have another question.

 

One of the appalling things we found out when things first came to a head in 2011 was that my daughter, who was seven at the time, thought that a "normal" stool was diarrhea. I never paid much attention to her stools much past the point that I quit wiping her bottom for her and that was several years before when she was potty trained as a toddler. So...she had been sick for some time before diagnosis. 

Back to my question.

She started having bloody stools and from what I've read, that's not characteristic of celiac. However, do you suppose that the years of irritation/allergy could have taken it's toll on her gut? Has anyone else had blood in the stool as a symptom? 

 

I've already noted what the biopsy said about the duodenal area. The gastric biopsy indicated mild chronic gastritis and the various colon biopsies indicated chronic active colitis with cryptitis, crypt distortion, and focal mucosal erosion. Every part was negative for dysplasia and granuloma. 

 

It's all so curious. I still can't find Crohn's in any of that.

kareng Grand Master
kareng
Posted

Well...the doctor didn't call me today like he said he would but I know that they can get busy.

 

In the mean time, I have another question.

 

One of the appalling things we found out when things first came to a head in 2011 was that my daughter, who was seven at the time, thought that a "normal" stool was diarrhea. I never paid much attention to her stools much past the point that I quit wiping her bottom for her and that was several years before when she was potty trained as a toddler. So...she had been sick for some time before diagnosis. 

Back to my question.

She started having bloody stools and from what I've read, that's not characteristic of celiac. However, do you suppose that the years of irritation/allergy could have taken it's toll on her gut? Has anyone else had blood in the stool as a symptom? 

 

I've already noted what the biopsy said about the duodenal area. The gastric biopsy indicated mild chronic gastritis and the various colon biopsies indicated chronic active colitis with cryptitis, crypt distortion, and focal mucosal erosion. Every part was negative for dysplasia and granuloma. 

 

It's all so curious. I still can't find Crohn's in any of that.

Well...the doctor didn't call me today like he said he would but I know that they can get busy.

 

In the mean time, I have another question.

 

One of the appalling things we found out when things first came to a head in 2011 was that my daughter, who was seven at the time, thought that a "normal" stool was diarrhea. I never paid much attention to her stools much past the point that I quit wiping her bottom for her and that was several years before when she was potty trained as a toddler. So...she had been sick for some time before diagnosis. 

Back to my question.

She started having bloody stools and from what I've read, that's not characteristic of celiac. However, do you suppose that the years of irritation/allergy could have taken it's toll on her gut? Has anyone else had blood in the stool as a symptom? 

 

I've already noted what the biopsy said about the duodenal area. The gastric biopsy indicated mild chronic gastritis and the various colon biopsies indicated chronic active colitis with cryptitis, crypt distortion, and focal mucosal erosion. Every part was negative for dysplasia and granuloma. 

 

It's all so curious. I still can't find Crohn's in any of that.

Were they treating the colitis?

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

At the time of the biopsies they had not been treating the colitis.

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

They've treated her repeatedly with prednisone. Additionally, she has taken, first, Pentasa and, currently, Imuran. Neither the Pentasa nor the Imuran has worked. Only the prednisone. But she can't stay on that continually.

BeautifulSkunk Newbie
BeautifulSkunk
Posted
  • Author

Still no response from the doctor. I'm trying to give the benefit of the doubt here and am believing that he is just taking his time reviewing all of her chart information.  :unsure:

nvsmom Community Regular
nvsmom
Posted

:( I hope you hear soon - waiting is hard!

 

Bloody stools can be caused by irritation and hemorrhoids.  I know she seems young for that but that D irritation could cause it.  I had C problems in my past, but I had visible hemorrhoids by around age 20 and bloody stools are not uncommon.... Something to ask the doctors about - they know more than me.  :)

 

Good luck.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,075
    • Most Online (within 30 mins)
      7,748
    Amy1620
    Newest Member
    Amy1620
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.