Celiac Irritability/Rage

[ELizardBreath]

If you have irritability/rage after gluten exposure, would you share with me how quickly it starts and how long it lasts?

For context, my 14-year-old autistic son developed irritability/rage and nausea a year ago. It took about 8 months to get him properly diagnosed with celiac, I kept insisting on tests - it was X, not X, Y, not Y, Z, not Z ... until I insisted on the very simple, sensitive and specific blood test for celiac. I thought I had eliminated all sources of gluten, he got better, he got worse. That is not uncommon, and it means, most likely, that I had not eliminated all sources of gluten. After consulting with his medical team, I got the Gluten Free Scanner App and the Nima Partners Sensor and threw away sauces with no gluten ingredients but warnings about cross-contact from the app. His therapy center "discovered" that playdough contains gluten, and I discovered that our Gluten-Free Cheerios and our 3 Muskateers contained gluten using the sensor. I should have all the gluten out of his life now and it should have been out for a week and a half. But he is still throwing up and having rages. 

I am wondering if I can tell how recent his gluten exposure was based on these symptoms and if the symptoms will subside again and how long it will take. 

I would be very appreciative of any related experience you share with me while I try to navigate things for my son. 

[trents]

It is also possible he has other food intolerances besides gluten. Dairy, eggs, corn, and nuts are common co-intolerances that are develop in those who have celiac disease.

[ELizardBreath]

He is currently on a low-FODMAP diet too. He doesn't like eggs or nuts. When you say dairy, do you mean lactose - he certainly can't digest lactose right now - or casein? He does like cheese. I keep a food log and am having a hard time seeing any trend. That is, sometimes he vomits after eating cheese, sometimes he doesn't, so it doesn't seem like the cheese is the cause. 

[trents]

I was thinking of the casein. Lactose intolerance usually causes diarrhea not nausea.

This might be helpful to run down some of the foods that he might be reacting to:

 

[ELizardBreath]

Thanks!

[trents]

Cute dog in your avatar. What breed?

[ELizardBreath]

They claimed it was border collie, but I think it is mutt with pit bull mixed in... He had 4 homes before it was 10 weeks old and he is still as nervous and active and barky - almost - 10 years later. 

[trents]

It would be hard to know whether the pooch's personality resulted in the frequent change of address or vice versa, or some of both. We had to give back a dog we adopted some years ago that was a nervous wreck. He pooped on the floor frequently. We got him to be a companion to our existing dog but it did not work out.

[Wheatwacked]

"One study shows that vitamin D, which is actually a hormone, activates a genetic sequence that converts the essential amino acid tryptophan into serotonin in the brain. These findings confirm the importance of adequate vitamin D for serotonin production in the brain, where it acts as a neurotransmitter, affecting brain development, mood stabilization, cognitive flexibility, social behavior, and sleep patterns."   10 Simple Ways to Help Autism

"The US Centers for Disease Control and Prevention reported that 33% of children and adults are at risk for vitamin D deficiency.... The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)."  Vitamin D Is Not as Toxic as Was Once Thought

[ELizardBreath]

Thanks. He takes Vitamin D supplements daily. Before the celiac diagnosis, he was diagnosed with low D and low iron. These will be re-tested in July along with his tTG-IgA levels and a few other things. 

[Wheatwacked]

As far as most doctors go, anything above 29 ng/ml is enough because the RDA is only looking for the minimum to prevent Rickets.  Above that is considered OK and they will do nothing. Vitamin Deficiencies especially in Celiac Disease is not quackery. I have been on 10,000 IU a day for seven years 165 pounds = 60 IU/lb.  On GFD it took 4 years to get my level up to 47 ng/ml. By 2021 I reached 80 ng/ml and holding steady. My doctor says don't stop. The author below mentions that a lifeguard in August has a level of 80ng/ml. My son, an ocean lifeguard year-round was tested last August with low vitamin D. He was diagnosed Celiac Disease by biopsy as an infant right after weaning in 1976.

Try the increased dosage and see what effect it has on him and what his plasma D is in July, rather than just waiting. It will be one more clue for you.

Autism and Vitamin D

Quote

The first step is simply to give your child 50 IU of vitamin D3 per pound of body weight per day. Liquid vitamin D is available from several sources.

So a 25-pound child would be started on 1,250 IU each day of D3, a 50-pound child on 2,500 IU each day, etc. This dose will usually result in mid-range physiological 25-hydroxyvitamin D levels (40-60 ng/mL), although some children may obtain higher physiological levels (60-70 ng/mL) on this dose.

As I said above, my very rough estimation is that around 75% of autistic children seem to respond at least somewhat to higher doses of vitamin D after levels are around 80 ng/mL.

 

 

Edited April 20, 2022 by Wheatwacked

[knitty kitty]

@ELizardBreath,

You might find helpful information at Dr. Derrick Lonsdale's site.  Dr. Lonsdale has done lots of research on Thiamine deficiency and also Autism.  His research has certainly helped me.  

https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

Irritability and nausea are symptoms of thiamine deficiency.  Celiac Disease causes damage to the small intestine where the eight B vitamins are absorbed.  Deficiencies in the B vitamins are common in Celiac Disease. 

You may have removed the gluten offenders from your son's diet, but correcting the vitamin deficiencies will be more beneficial.  I know because I have experienced severe vitamin deficiencies about which doctors were ignorant.   

My Thiamine deficiency was corrected with high dose Thiamine as Dr. Lonsdale recommended using Allithiamine, thiamine HCl, and Benfotiamine.  Thiamine is needed for proper brain function.  As I became more able to think properly, my frustration and irritability faded.  

Get your son on a B Complex supplement at least.  Do consider high dose Thiamine supplementation.   

Hope this helps!

My blog has more of my experiences with vitamin deficiencies.