Jump to content
  • Sign Up

Rate this topic

Recommended Posts

My son is 5 and was diagnosed 1.5 ago. We just had his panel re-run because we have been suspecting gluten contamination. His Gliadin Deaminated IGA went from 3 to 5 in a year and his C reactive went from 0.2-1.5 in a year. I know those values are all still in the normal range and his GI doctor said is blood work isn't showing any intestinal damage because his levels are normal. But has anyone had any experience with their levels increasing even within the normal range? Don't you want levels to stay the same or decrease? It seems like it would be "bad" if they are increasing even though they are in the normal range. He also had high Albumin levels, but I'm not sure what that means. I have a call into his GI for clarification but just thought I would reach out and see if anyone has any insights. This is all very new to us and we are tying to figure out how to keep him as safe as possible. Thank you!!

Share this post


Link to post
Share on other sites

Blood test numbers move around. If it's normal you should be good. I'm not a doc though.

Share this post


Link to post
Share on other sites

Moving around slightly within a lab range is probably no cause for concern.  Keep in mind that the celiac disease blood tests were developed to help diagnose celiac disease and not really monitor dietary adherence.  However, it is the only non-evasive tool in the “toolbox”, so doctors use it.  

Let me tell you that my DGP IgA was very high after a gluten exposure.  Almost a year later and my DGP IgA test result was finally under 100.  Not satisfied after trialing the Fasano diet (very strict gluten-free diet), I opted for a repeat endoscopy.  My Villi had completely healed (and my GI went in deep and has a scope so strong you could visually see the villi).  Yet my DGP IgA was still elevated.  It goes to show you that the celiac tests do not necessarily correlate with intestinal health.  We think my other autoimmune (AI) disorders impact my antibodies tests for celiac disease even though they are very specific to celiac disease.  Ugh! 

Your son was struggling with depression (earlier post) which is common with celiac disease or any other AI disorder.  You can continue to check him for other possible illnesses (diabetes or thyroiditis) is linked with celiac disease.  Consider some  counseling or join a local celiac disease group.  He may be very frustrated knowing that he is different.  

Hang in there and keep pushing for answers.  

Share this post


Link to post
Share on other sites

Thank you!! Yes we are having him see a counselor. His thyroid was normal and is blood glucose was 96 with normal being (35-99). So I don’t think it’s diabetes. We have also had other random symptoms in addition to the depression /behavior issues. It’s just so hard to know what is a gluten reaction and what is something else. What I don’t understand is if his blood work is normal does that mean he’s not having any gluten exposures or reactions? Or could he still be having reactions but they just aren’t enough to show damage to his intestines? 

Share this post


Link to post
Share on other sites

Okay, his thyroid is normal.  What does that mean?  You can have normal labs, but have elevated thyroid antibodies long before they actually do enough damage to the thyroid to reflect on tests.  So, keep this in mind.  Occasionally (in the future), ask a doctor to actually feel his thyroid or test for antibodies.  

It is possible that he is still causing damage to his small intestine.  Like I mentioned earlier, the antibodies testing is not perfect and was never meant for follow-up testing.  No one knows how long it takes for antibodies to increase after a gluten exposure and no one knows how long it actually takes to recover.   We are all very different.  

While the GI tract in theory heals fast, neurological symptoms can take much longer.  There has been little studied on gluten and the impact on the brain.  

https://www.nytimes.com/2014/10/12/opinion/sunday/can-celiac-disease-affect-the-brain.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591866/

Like Dermatitis Herpetiformis (celiac rash), patients with brain and nerve issues might be more gluten sensitive.  20 ppm may be too much!  Consider doing the Fasano diet  for a month or so.  It can not hurt as it is all mostly Whole Foods.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Does he eat out?  Is he eating oats?  Some celiac react to oats, even pure oats grown and safely transported to market.  What about his school?  Does he have a 504 plan?  Does the teacher insure he has access to a sink, soap and water?  Does he put his fingers in his mouth?  Is there Play Oh in the classroom or crumbs at shared tables?  

Even though his antibodies are down you do not know for sure he is not getting gluten. 

“It is important to note that the test is not robust enough to show positive results with small or infrequent exposures to gluten.” (This quote was from this study link below.)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4721839/

Finally, consider researching Dr. Fasano (Boston/Harvard).  He is a leading Ped GI specializing in celiac disease.  He talks about behavioral and mental issues in children who have celiac disease.

http://pediatrics.aappublications.org/content/139/3/e20164323

He has a great video about celiac disease too:

https://m.youtube.com/watch?v=wha30RSxE6w

Keep researching.  He may just be getting little exposures to gluten — just not enough to raise his antibodies significantly.  Tighten up his diet (costs nothing and can do no harm).  If you are not successful look at another illness.  

I am not a doctor, but a mom who hates to see a kid suffer!  

Share this post


Link to post
Share on other sites

Thank you so much cycling lady!! All that information and articles are very helpful. He does not have a 504 because he is at a Catholic school and his school doesn't do them. He does wash his hands before eating snack but they are all at a shared table and sharing toys. We provide his own play dough. We have temporarily pulled him out of school for a couple of months to see if we can get a handle on everything and that just helps us control his environment more in the meantime. We have been to one restaurant twice and they appeared to know what they were doing, but I don't think we will go back. He does eat gluten free oats. 

Share this post


Link to post
Share on other sites

fasting blood sugar is not the gold standard.  a glucose tolerance test is required.  that said, has he had fasting blood sugars done in the past, and if so, how do they compare?

Share this post


Link to post
Share on other sites

It wasn’t a fasting glucose test, they told me he could eat before his blood work. And he hasn’t had any other fasting blood sugar tests so I don’t have anything to compare it too. 

Share this post


Link to post
Share on other sites

If a lab runs the same blood sample 10 times they probably won’t get the exact same result 10 times.  The deamidated gliadin IgA differences might be that sort of test to test variability.  Having said that, my GI was happy when my antibody levels that were within the normal range went down further.

The CRP difference could be a real increase.

Share this post


Link to post
Share on other sites

not to worry then, that was a little high for a fasting, since it was a random, less concerning

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
5 5

×