New/need advice

[Sunshine4Him]

Hi!

i am needing help to know how to proceed with my 13-yr old son.   We know he definitely has a strong sensitivity to gluten but has never gotten a formal diagnosis.   When he was 7 or so, his symptoms led us to believe he might be sensitive to wheat, so after trying to remove wheat for a little while, then add it back in, I was more confused than ever, so we took the advice of someone at that time to have his stool tested via Enterolab for gluten antibidies. These came back positive. We took him off gluten at that time and he improved quite a bit. 

Foe some reason that I cannot explain, it didn't occur to me to go through his pediatrician until he'd been off the gluten for 2-3 months. Then I mentioned it at a check-up. He didn't believe our son had a problem with gluten, and recommended a blood test. We had this done, and the Dr told me it was negative. It dawned on me that he'd been off gluten for those months, so the results may have been skewed. I think the IgA was 66 and the TpgtIgA (I probably got that wrong as far as the letters) was 1.  

I never worried much about getting a diagnosis, since he was already off the gluten and we saw improvement. Now I wonder if I should.  My reason is to see if I can gain any help for my son in recommendations for supplements and healing of his gut. He occasionally "cheats" then it seems like we all pay for it for weeks after the gluten.  The gluten really seems to fuel an anger/aggressive nature, plus he seems to act like he's on drugs (glazed eyes, brain fog, very emotional, can't do schoolwork without a meltdown) and makes it very challenging.  Because of this, we've always thought that we could not live with the aftermath if he'd have to do a gluten challenge to get a diagnosis. 

Does anybody have any counsel?  Would it be a wise plan to try to get a diagnosis, even for my son's sake, since I know he doesn't realize the full implications of the damage he could be doing to himself?  

Thanks for any input!

Sunshine4Him

[Zodi1993]

Hi, 

You definitely need to get him back on gluten so that the blood tests and biopsy will be accurate. My daughter had similar issues with 'brain fog' and explosive diarrhea that lasted for months. Finding the right Doctor who has knowledge of Celiac Disease and it's over 300 symptoms is no easy task.  Maybe try over winter break and get him in for testing. I would also keep a log of what food seems to trigger his moods & behaviors. The more information you have the better. Supplements are not a cure and maybe do more harm. We had one Doctor who tried to give us probiotics and we left his office, my 19yr in tears and saying something is really wrong with me, mom. She lost over 20 pounds and was anorexic. Her college friends and coworkers were so confused & concerned. A size 0 was too big on her and she is 5'6 and weighed 118 before she was diagnosed. She also had several blood & prick allergy tests done and found out she is allergic to wheat (obviously), yeast, shrimp & sesame seeds. This is a journey but the sooner you have a diagnosis regardless of the results you will be able to make life better for your son.

welcome to the forum 

 

[GFinDC]

Hi Sunshine,

There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them.

The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea.

Welcome to the forum!