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Old 11-29-2011, 09:08 PM   #1
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Autism/celiac/meds adjustment

I am trying to find some support/explanation for an issue I am having at work. One of my 8th grade boys is autistic; he is fully mainstreamed, can handle the work, but needs support with social interaction, "big" transitions, changes, etc. About 2 months ago he was diagnosed with hypothyroidism and full-blown celiac. He has been gluten-free for about 6 weeks now, and although he isn't growing and gaining weight, he is finally eating full meals and we're hoping he'll continue to make progress. However, in the past four weeks he has started exhibiting behaviors in the classroom that haven't been seen since he was in 2nd grade: blurting, picking (ears, nose, cuticles, etc.), crying, yelling at the teacher, flinging himself on the floor in frustration, etc. VERY uncharacteristic behavior. I am wondering if, now that he is GF, his metabolism and absorption are better and therefore his medications need to be evaluated and adjusted. I realize that he is also dealing with his own medical issues, but his mom relates that he hasn't been emotionally affected by the celiac diagnosis, which is consistent with his autism (unlike his NT 16 yo sister, who has also tested positive and is in denial, crying, doesn't want to go GF, etc.). ANYHOW... has anyone had experience with a celiac diagnosis and its effect on medication levels? Am I barking up the wrong tree here, or should we (the "team") consider requesting a medication eval? Any experience or input would really be appreciated; we are all pretty surprised at these behaviors, and I know the boy is struggling "in the moment." (as he seems to forget about problems when he goes to the next class)

And FWIW, I am really proud of the other kids in this class. Nobody has stared, shied away from this boy, or made fun of him. In fact, several of the boys have tried to "help" when he is becoming distressed, making supportive comments, suggesting diversions, etc. Although I wouldn't go so far as saying any of these kids are his true friends (as so many of you parents sadly understand), they are certainly his classmates, he is part of the class, and they are supportive when he struggles. It could be so much worse!
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Last edited by leebee; 12-29-2011 at 08:24 AM.
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Old 11-30-2011, 08:31 AM   #2
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His thyroid hormones will definitely need to be retested at periodic intervals until they're restablized. His thyroid function is pretty much definitely affected by his celiac. As his body heals over time (this is a very slow process), there will most likely be changes in his thyroid function. His doctor should probably treat him as though he's once again a new thyroid patient and retest as frequently as he would any new thyroid patient.

That being said, I don't see the thyroid as being the main factor in what's going on here. This is more likely an affect of going gluten free than his thyroid. In autistic kids who have celiac or are gluten intollerant there's often a neurological effect to gluten. It can have an effect like taking a drug that makes you high. I've felt it myself and know it's real. The first month or two after going gluten free can be a detoxing period where the person is going through withdrawls and also as the fog clears suddenly all those stimulae are suddenly painfully clear (and yes I do mean painful since they may have been experienced previously from behind a fog and now they're sharp and difficult to cope with if the child has some sensory issues which autistic kids do have).

I would suggest having the OT and S&LP work closely with him to come up with an action plan including sensory tools and coping strategies. The flinging sounds like a deep pressure sensory seeking activity so he needs some kind of sensory input (maybe a sensory seat cushion or weighted vest or blanket or something along those lines) as well as maybe regular breaks to take a short walk away from everybody. A hand held manipulative may also help. Whatever coping strategies he's been taught need to be re-enforced and he may need new ones since the blurting and yelling at people are clear signs that he's not coping well (the short walks and manipulatives may give him the breaks and distractions he needs but his team should be familiar with him and know of ideas that are more suited to him).

He's lucky to have a caring person like you on his support team. Thank you for all you do!

I adore watching my daughter and her aspie "friends" work together. They really are a special group of kids who are unbelievably supportive of one another. They really have the right attitudes. Gotta love em!!
Me DH DD(16) DD(14) DSD(32) DSSil (41) DGD (newborn) DSD(30) DGS(4)

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Old 11-30-2011, 07:22 PM   #3
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It would be helpful to know his age.

I think you may have the main issue if he is on ADD meds, but it is as likely that the GF free diet is the variable as it is that the new meds are. Many ADD meds can create agressive and other atypical behaviors if overdone, which may be what has happened as the new meds and diet have changed his physiology

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Old 11-30-2011, 08:03 PM   #4
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He's 13, and hasn't grown or gained any weight in over 2 years. He looks like a 5th grader, not an 8th grader. Autism dx made in first (second?) grade, and he's taking Concerta. The hypothyroidism and celiac diagnosis are new this fall. Someone today mentioned that we might also be seeing his hormones starting to kick into gear as his nutritional status improves. Great- let's add testosterone to the equation!
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Old 11-30-2011, 08:18 PM   #5
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Originally Posted by leebee View Post
.... Someone today mentioned that we might also be seeing his hormones starting to kick into gear as his nutritional status improves. Great- let's add testosterone to the equation!
Yeah...and then it gets REAL fun!!!
Our 13-51/52 year old son is putting all of us through the ringer! We've had 4 daughters...and then God challenged us..errr....blessed us with this raging pile of hormone infested teenage boy!
The Autisim aspect of his DTD life may only be the "iceberg" of what all is going on in his life. I sure hope it works out well for the boy and for those of y'all caring for him.

BTW, very informative stuff there Clan...Thanks!
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Old 12-29-2011, 08:27 AM   #6
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Good news!!

Update... after 6 weeks of being gluten-free (and this mom is going at it whole hog, with dedicated dishes, pots and pans, etc., not going into bakeries, not ordering GF at restaurants that don't have a dedicated GF prep area, etc), my student has gained SIX pounds and grown a half-inch! YAY! It's making his mom a little crazy, trying to keep him totally GF and paying for the cost of GF food/ingredients, but we both agree that it's been SO WORTH IT!!
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Old 02-09-2012, 11:07 AM   #7
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That's amazing! My aspie DD is having some great success with being wheat free and sugar free as well. Much greater clarity, as someone above said. She's seen a lot of relief from anxiety and mood swings too.

She has never been able to take any meds well. They just don't react well with her anxiety. You are kind of describing the way she was acting at age 11 when her hormones started changing and she was kind of going nuts on the meds she had been taking since she was 8. We took her off of them, and she was much happier.

I would think it's a combination of the hormone AND diet changes. If his Mom is also supplementing the Omega 3's and Vitamin D, he may do much better without meds. There's probably a much different brain chemistry happening for him right now!

I have to add, your description of the kindness of your other kids brought a tear to my eye. DD had the opposite experience.
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