Question about Lab Results

[Aehrhart]

We are in the midst of working with a pediatric GI to figure out what's wrong with our 3 (almost 4 year old). She was diagnosed with type 1 diabetes nearly 1 year ago. At the time of her diagnosis and hospitalization for DKA, they ran tests to check her thyroid and antibodies for t1d and celiac since they often go hand in hand. I should note that at the time her blood was drawn, she was only getting gluten through contamination. We had gone gluten free as a family at least a year before these tests were taken, but I still bought items (ex: pumpkin seeds) which clearly state on the label "manufactured in a facility that also processes wheat". With that being said, she had trace amounts of gluten in her diet. 

Her tissue transgl ab IgA was 3. 

Then, the next line of the lab reads "IGA 46". 

I know with the "3" that would not indicate celiac, but my question is why would she be putting out antibodies if she had only trace amounts of gluten in her diet?

I should also note that we tested her genes, and she does have both genes associated with celiac. 

After her t1d diagnosis, we started noticing a change in her stools which is why we consulted the GI specialist. She does have malabsorption of fat, and she was diagnosed with small intestinal bacterial overgrowth (Sibo) after the extended lactulose breath test in December 2015. She has a bloated belly, and a few of the other symptoms. I know her GI is probably going to scope next because her Sibo hasn't responded to 2 rounds of Flagyl and probiotics, but I just was curious to hear from others. 

Anyone know about blood work after going gluten free? Her doc has me giving her "a few" gluten crackers each day in the event we have to scope. 

[squirmingitch]

She has to be eating gluten for 2 weeks before an endoscopic biopsy for celiac disease. I'm sure that's why the doc is wanting her eating a few gluten crackers per day.

Open Original Shared Link

To do the blood work she would have to eat gluten for 12 weeks. I would guess the doc intends to scope & while he's in there, he will do biopsies for celiac. That would be much less painful than putting her through 12 weeks of eating gluten in order to do blood tests. Besides the endoscopy is the "gold standard" for diagnosis. Also, children her age can be tricky where the blood work is concerned. I understand the frequency of false negatives is quite a bit higher than with adults. 
 

[cyclinglady]

I am glad your Ped GI has your child back on crackers in case of an endoscopy.  You need at least two to four weeks of consuming gluten for an endoscopy (more for the celiac blood panel).  I am saying this because some doctors fail to follow celiac diagnostic procedures published by the American and British GI Associations. 

I am not a doctor, but the TTG IgA result from my research could be from a small amount of gluten exposure or an another AI disorder (like her TD1).  In some cases just getting them down below ranges (and each lab range is different) is about the best you can get.  You can research within the forum about cases of kids who had difficulty getting their antibodies down (GFinDC member comes to mind).  Parents found that consuming too much certified gluten free foods were having an impact.   For many, it can take years.  I think you can never expect a 0 result.  The tests are to be used as guidelines and are not perfect! 

This is a link about elevated antibodies from the University of Chicago:

Open Original Shared Link

In the event of an endoscopy, I would ask for the complete celiac blood panel.  The GI should also look for other issues besides SIBO too.  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Remember, that even after all this testing this year (even if she is negative), she should have a complete  celiac blood panel every two years as celiac disease can develop at any time.  She is in the high risk group for developing celiac disease due to TD1 (Diabetes Type 1) as my kid who has a mother diagnosed with celiac disease.  

I am currently insulin resistant (diabetic per my doctor two years ago).  I have always been thin, have always exercised a lot and I have dealt with the diabetes by eating to my meter.  I chose to self-monitor (with my doctor's approval) and have not pushed for GAD antibodies testing for TD1 because I tested out so wacky for celiac disease.  Adult on-set diabetes can have a long honeymoon period of up to five years. So, I am waiting and watching.  My diet is working.  I need no meds for now (that's good for someone with a damaged gut).  Either way, I am prepared.  The goal is just to prevent damage and live well.  

Keep on advocating, Mom!  Remember too, to take care of yourself!

 

[Aehrhart]

Wow! Thank you both for your replies. I really appreciate the links. I'm doing my best to learn everything I can in order to help figure out this mystery. We are a very active family and enjoy living a healthy lifestyle (diet and exercise included). It's hard when I feel like I did everything I could to keep my daughter healthy, but I guess that's where the genetic factor meets whatever environmental triggers are out there. 

I'm sorry to hear you're dealing with diabetes. Sounds like you're managing it well. If you have any relatives with t1d, you should get tested with Open Original Shared Link it is a company who is doing research to delay and/or prevent the onset of T1. Hopefully you can extend your honeymoon phase. Our daughter's just ended shortly after we reintroduced gluten in her diet. There's no way of knowing if it's related, but her blood sugars were much easier to manage while she was honeymooning. I digress... 

Thanks again for your help! I may need more guidance in the coming weeks...

[squirmingitch]

You are welcome!

You might want to check out this section:

https://www.celiac.com/forums/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

Look through threads on there, maybe especially going back around 2011-2013. There is a lot of great information on there about kids & figuring out all the things that are going on with them. Some very knowledgeable people on there too who have been through the ropes with their own kids.