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Diagnosis and getting other parent to cooperate

Mom2T

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Mom2T Newbie
Mom2T
Posted

Hello, I am new here

My son is 11yo, he is in the spectrum.

My son used to have recurrent cavities until I changed dentists and he said no gluten, dairy or refined sugars. 

I took him out of those 3 and he "only" has a cavity every year or so

In 2017 my dad (his grandpa) passed away from complications to celiac that was not diagnosed in time. 

But I cannot get mt son's dad to cooperate, we are divorced, joint custody 50/50 time split, which means he is every other whole weekend with his dad eating basically chicken nuggets, cake, cookies, oreos, kitkat, pizza, cheese sticks steak and rice.  This is right from the dad's mouth as well as the kids account. No veggies at all.

Now I need him diagnosed just so that his dad will eliminate the gluten.

I do not know if my son is celiac, But  I am learning that unless I myself give him big amounts of gluten, I will not get any gluten issues in a blood test or even endoscopy

What can I do, do I have to put my son in weeks of gluten just that it shows in a test? If its genetic, will it show?

Doing tests in children is tough, doing them in children with Autism is 3 times harder, just getting the stool sample, which is the only tests I have completed, was difficult

How can I help my son?

Thank you!! in avance

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kareng Grand Master
kareng
Posted

If he is eating gluten regularly, then you can get a blood test.  

cyclinglady Grand Master
cyclinglady
Posted

While your son is in your custody, be sure to continue giving him gluten.  It does not have to be much.  Just the equivalent of one to two slices a day for at least six weeks.   His doctor should be willing to test him based on your family history of celiac disease.  Be sure to take in a handout that shows that celiac disease is the first autoimmune disease that is definitely genetic.  Know that some 35% of the population carries the genes, but only a few actually go on to develop it. 

My kid is tested every few years even without symptoms because I have celiac disease and  because some celiacs are asymptomatic.   Her doctor and our insurance have never denied testing.    I have also requested the full celiac panel because I never get a positive on the standard screening TTG IgA.  If my kid is going to get a blood draw, I want to be sure we cover all the tests.   Maybe she will be like me and never test positive on the TTG IgA.   As it is, she needs a Ped needle and a very skilled phlebotomist.  We only want to draw blood once!  

Your dentist should not have recommended dietary changes other than cutting out sugary foods.  He is not a nutritionist and you can see now how that can complicate testing though he probably meant well.  I have family members who are gluten free for similar reasons.  Do they have celiac disease?  Who knows?  But medical and family think they are hypochondriacs and do not take them seriously.  Me? Everyone takes me seriously.  

Get tested yourself (encourage siblings).  You may very well have it too!  Again, you can be asymptomatic.  I did not have GI issues.  I was always anemic which was blamed on menstruation.  

If your son tests negative, know that he could still develop celiac disease later on.  Consider after testing altering (or continuing)  his diet to a healthier one while he is in your care which may or may not include eliminating gluten from his diet.  Talk to your doctor or ask for a dietician referral.  Maybe your ex would be more willing to alter your son’s diet if he hears it from a doctor/dietician.  

I hope it works out!  Keep advocating for your son, mom!  He is lucky that you care!  

 

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