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BeautifulSkunk

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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?

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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. 

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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.

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