Toddler Test Results. Help!

[kcrawford]

Our chiropractor ordered blood work for my Son, who turns 2 next week. He struggled with silent reflux as an infant and has had either chronic constipation or diarrhea, very slow growth, and lethargy.

The IgA and tTG were both negative, but his IgG for gluten was at 9.1 (normal range 0-1.9) and his IgG for casein was 3.5 (normal range 0-1.9). He also had other abnormalities like extremely high triglycerides (262 when the normal range is 0-74), high BUN/creatinine ratio (58 when normal is 9-27), high alkaline phosphatase (372 when normal range is 130-317), and low vit d.

My chiropractor seems to think that all of the other highs and lows are related to the gluten and advised us to cut all gluten and dairy, which we have as of results day last week. We'll be reviewing with our pediatrician next week too. Just curious if anyone has ever had IgA and tTG come back negative and had the IgG be so high? I know they aren't always accurate in children. And with the casein, he has never drank cows milk in his life, only the occasional cheese on pizza or grilled cheese. I know casein can be in other foods as well, his antibody amount just seems high for not having the regular exposure that many children have with cows milk. I guess I'm just not sure what to think...

[ravenwoodglass]

You need to put him back on gluten. He will need to be consuming gluten for the tests your ped will need to do. Your chiro should have told you that. 

[kcrawford]

  On 11/5/2014 at 10:24 AM, ravenwoodglass said:

You need to put him back on gluten. He will need to be consuming gluten for the tests your ped will need to do. Your chiro should have told you that.

What tests would the pediatrician order that would require him to be on gluten? We did the celiac panel, is there something we missed?

[cyclinglady]

Your Ped may refer you to a GI for an endoscopy and that could take a while. So, it might be best to keep feeding your son gluten until you talk to your Ped. He may give you an official diagnosis without an endoscopy (that is fine). An official diagnosis (from a MD) is very helpful when your son goes to school.

Oh, my TTG was normal. I only had one of the celiac tests show as normal, but my endoscopy/biopsy revealed moderate to severe damage.

Good luck to you, and the whole family should get tested.

[kcrawford]

Is it ok if he is not eating gluten when the endoscopy takes place, if the Doctor orders one. I just don't want to back track onto gluten if it's not required, until we get a diagnosis. I've been told that with his IgG numbers being so high above the normal range that that in itself shows there is an intolerance? Thanks in advance!

[BlessedMommy]

I understand the hesitation about putting him on gluten, but it really will give you the best chance for an accurate diagnosis for him. Since a very strict lifelong diet is needed for celiac patients, it's important to be sure of the diagnosis. Especially for children, it is so helpful to have a diagnosis.

 

I hope that you find answers soon!

[StephanieL]

You need to see an pediatrician and perhaps a GI Dr. for this stuff. Not a chiro.  I love my chiro for many many things but Celiac testing and anything immune related needs to be dealt with by the appropriate Dr. 

 

And NO, you can not do an endoscopy if the child is not on gluten.  Do not remove gluten from the child's diet till you see a GI Dr.  You are going to have a lot of issues getting anything accurate if you suspect a gluten issue.  

[kcrawford]

Thank you all for your input! So, given that his IgG was 9.1 (normal range being 0-1.9) doesn't that signify an intolerance to gluten? Is there something else that could raise that so significantly? I just hate to continue to give him gluten knowing that he's not tolerating it well. If he had celiac wouldn't the only treatment be to cut gluten anyway? If there has been damage done, wouldn't the biopsy detect the damage even if he is not currently eating gluten, as it remains in your system for months? Wouldn't the damage still be there? Sorry for so many questions and I truly appreciate your thoughts!

[greenbeanie]

Welcome to the forum, kcrawford! I just want to echo what others here are saying - though it's really hard to keep feeding a kid a food that seems to make him sick, he needs to keep eating gluten if there is any chance of doing an endoscopy. It may be much, much harder to put him back on it for testing in the future, so it's definitely better to get everything done before changing his diet permanently.

Did you have the DGP-IgA and DGP-IgG tests run as well as the tTG tests? They are sometimes more accurate in very young children.

We were fortunate that my daughter got a clear celiac diagnosis at age 4, after problems essentially since birth, and having a clear diagnosis made our lives immensely easier. Not only did we finally have a solution to the problems we'd been guessing at for years (which was a huge psychological benefit after so much uncertainty), but having the official diagnosis helped her school and other family members take it seriously. Even with a clear celiac diagnosis, it's hard to get people to realize that even a tiny amount of cross-contamination can be a problem - and having medical documentation to back up the need for that degree of vigilance is really helpful.

It sounds like your little guy might benefit from a gluten-free diet regardless of whether he has celiac or non-celiac gluten intolerance, and I'd definitely encourage you to give the gluten-free diet a good long try once all testing is complete, regardless of test results. But before doing that, seeing a GI doctor (while he is still on gluten) is definitely preferable. Other types of doctors often don't know enough about celiac to even order the right blood tests, even when they are very competant in other areas. We had to go to three different pediatricians before one would even agree to order the celiac panel for my daughter - the first two had the common misconception that all children with celiac are short, whereas my daughter has always been tall for her age - and even once we found a sympathetic doctor and my daughter's blood tests all came back with high positives, he still gave us bad advice. He told us to take her off gluten immediately, even before seeing a GI doctor or doing an endoscopy. Fortunately, I knew from the helpful advice of people on this forum that I should keep her on gluten until the endoscopy was done. That turned out to be crucial for getting confirmation from the endoscopy that gluten really was the problem.

Good luck!

[nvsmom]

  On 11/5/2014 at 11:59 AM, kcrawford said:

What tests would the pediatrician order that would require him to be on gluten? We did the celiac panel, is there something we missed?

The celiac disease tests are:

• tTG IgA and tTG IgG  (tissue transglutaminase)  - most widely used tests
• DGP IgA and DGP IgG  (deaminated gliadin peptides) - this is probably the best test for young kids
• EMA IgA  (endomysial antibodies)
• total serum IgA - a control test
• AGA IgA and AGA IgG  - older and less reliable tests  (anti-gliadin antibodies)

For the blood tests to be accurate, the patient needs to be consuming gluten in the 8-12 weeks prior to testing.  If you will be seeing a doctor soon (any agreeable GP can order these tests) then you might not want her to go gluten-free yet - it would probably be simpler to wait.

 

The endoscopy needs only 2-4 weeks of gluten for an accurate test (as it can get).

 

Good luck.