Tourettes, Narcolepsy And Gluten
Posted 09 January 2009 - 10:55 PM
My extended family is riddled with gluten intolerance and full blown Celiac Disease. Two of my brothers, myself, my mother, scores of neices and nephews and my cousin on my mother's side and her children are all gluten intolerant or have Celiac Disease.
As far as my immediate family, my son Chris, who is 16 now, asked me to let him go gluten free when he was 12 almost 13 years old. I was not gluten-free at this point in my life.
Chris was always tired, dizzy, sore, headaches, irritable and on a scale of 1-10, cranked up way past 10. He was a carb-aholic, and the pickiest eater you can imagine. Except for when it came to bagels, mac & cheese or frozen pizza. Hell hath no fury like our household if we ran out of Digiorno's. He would not eat meat. Not meat of any kind except for fast food meat. Yup you got it Mc Donlad's burgers or Burger King burgers. Oh, and the other main staple in his diet was flour tortillas and cheese melted in the microwave.
His sense of smell was remarkable. He could smell yeast. If my husband had a beer at a daytime barbecue and then later in the day ate a huge meal and brushed his teeth before bed and went into to kiss Chris goodnight and tuck him in Chris would ask him why he smelled like bread. He was smelling the yeast. Actually he smelled everything, at Chrsitmas most of the home videos show Chris opening his presents and smelling them 1st, before he would even look at it, he would smell it, then he would look at it. Oh my poor little "fiffer".
He has undergone scores of developmental tests and evals. Which have never really revealed anything too remarkable. Back in his elementary school days he was on an IEP and received OT for sensory integration disorders, PT for his gross motor coordination and Speech Therapy for his speech and language delays. I have always thought he was an undiagnosed Asperger's kid, for whatever that's worth. He could not even sit at the dinner table with us. He told us that he could see all the food we were chewing in great detail and he would start gagging. He would also complain that everyone chewed too loud. We started with less invasive strategies to help him cope. We would set up cereal boxes as visual barriers all around him so that he wouldn't have to see people chewing. We gave him my husband's headphones (that were used for target practice), to help block out the sounds of people chewing. But still nothing seemed to help Chris from exploding. Eventually we gave him his own little table a short distance away from the dinner table with his back to us and his headphones. This seemed to do the trick for 3 years or so. He became a little more tolerant as he grew older but the cereal boxes served as visual barriers for him until he was about 11, then he pretty much just stopped eating when we ate, he would snack, and snack and snack. So he would sit with us at the beginning of a meal but would never really eat what ever we were eating or he would just pick at it. Shortly after he sat down to dinner with us he would excuse himself. Then when he was 12 he asked to gluten-free. He had actually asked on several different occasions leading up to that what gluten was, and if I thought he should try to go gluten-free.
I remember when he was around 2 years old he had got in the habit of yelling out "fartbutt" all the time. Especially when he was frustrated. We started to scold him every time he would do this and he tried, he really did try, not to say it. But even on the days where he would have success and hold it in all day, we found he was yelling it out in his sleep. Not normal right? You know how you can tell when your kid 's heart is really trying to respond with obedience. You can just tell. Well he was really trying to be obedient. Eventually his sleep was so disrupted that we stopped making such an issue out of it and he eventually grew out of that I guess, or maybe he just exchanged it for some other idiosyncratic behavior. If he did, we never really caught on to it.
He was the best baby ever! I mean ever! He has 2 older brothers who were 3 & 4 when he was born. So I did have something to compare to. He never cried, he would wake in the night for a feeding and he wouldn't cry, he would just make faint noises and squeaks. He never cried! Maybe that was a missed sign, I don't know. I didn't question it. You don't look a gift horse in the mouth right? I had already been sleep deprived for 4 years when he came along, I wasn't about to question this peaceful, content child. I probably thought I had earned it at this point. You know, paid my dues.
Well a little before he turned 2 he got really sick with a high fever and had a seizure. He was never the same after that. He screamed all the time; when he was awake and wanted something, he screamed. When he was asleep, he'd scream. He'd scream upon awakening, he'd scream himself to sleep. The pedatricians chalked it up to the terrible 2s and night terrors. He had night terrors all right. His night terrors were so bad that they put terror in me that's for sure. I would find him standing in his crib screaming bloody murder, totally asleep. with his eyes wide open. Screaming and crying "mommy, daddy, mommy, daddy" This went on for months.
Shortly thereafter Chris welcomed his baby brother, Levi into the world. So at that point the Pedatrician just chalked Chris' behaviors to his jealousy of his new baby brother. I was a young mother so I was never really taken very seriously by DRs.
Well eventually Levi grew and at 8 years old was diagnosed with Tourettes and ADHD. His tics were quite noticeable and pervasive.
He had vocal tics in his throat, he had severe tics in his eyes, arms, neck legs and sometimes his whole body. The DRs theory was that it was brought on by many bouts of the strep virus, and that it was what is called PANDAS, which stands for Pediatric Auto-immune disorder associated with strep. A simple blood test could rule this to be the cause easily. The blood test ruled that this was not the cause of Levi's Tourettes after all.
I do know that Narcolepsy, Epillepsy and Tourettes are all kind of connected in a way. My husband's sister has Narcolepsy. Levi's tics seem to have decreased to almost non-existent now. He is 15 and I believed that playing the guitar on an OCD level was his way of controlling his body to do what he wanted it to do, rather than his body being in control of him. So I was really beginning to think he found some new type of therapy for himself. But apparently for the last 1/2 the school year last year and most of the school year this year he has been sleeping all day in almost every class. During the summer he would sleep until like 2or 3 pm if we let him. He is always tired. I have read somewhere that sometimes Tourettes can manifest itself as Narcolepsy and vice versa, but what I can't seem to find any info on is if there is a link between Gluten and Tourettes or Narcolepsy. I am one tired Mother who has been looking for answers for her 2 youngest sons for what seems like a lifetime. Does any one have any input or advice at all? I have now taken Levi off all his meds because he was severely depressed and irritable and becoming aggressive at school. Plus he was just too tired while on them. I have seen a marked improvement with the depression being lifted and all teens are irritable to some degree so while I wish he was not irritable at all, I'll take what I can get.
Chris is maturing nicely but when he has been exposed to gluten he seems to go through a psychosis. Like a junkie who needs a fix. He get destructive and explosive. He usually has to sleep it off until the next morning and then for the next 2 days he is in a funk. I still wonder if he has other issues besides the gluten. He is failing school, even though he is extremely intelligent. The traditional school setting is just not for him. I have home schooled Chris and Levi before for 3rd thru 6th grade and Chris is requesting to be home schooled for his last 2 years of high school. His social life is better than ever but his academic life is really causing a self loathing. In elementary school and 7th grade he always did well and got grades he could take pride in.
My 18 year old got so tired of the constant chaos and lack of peace in the household that he has moved out. My heart is broken and my mind and body is weary. I have had many health issues this last year and it was certainly looking like MS, Which all tests have ruled out. My neurologist is referring me to a rheumatologist (sp?) at this point and looking into Lupas as a possibility to my sporadic health issues.
I have been gluten free since April 08.
Please if any of this rings a bell with any one point me in the right direction.
Posted 10 January 2009 - 05:20 AM
Narcolepsy is associated with the DQ7 gene (http://en.wikipedia.org/wiki/HLA-DQ7). So is lupus. This is the gene circulating in my dad's family, causing all kinds of autoimmune disorders, allergies, brain disorders, and sinus problems.
I think you're absolutely on the right track when it comes to gluten! You might also try dairy... cow's milk intolerance is another DQ7 trait. Your son might never test positive for celiac disease, but don't worry about it. Gluten can damage a lot more than your intestines.
Son has IgE allergies to peanuts and corn
Hashimoto's, MCAD, pregnancy loss at 17 weeks
HLA-DQB1*0302 (celiac), HLA-DQB1*0301 (gluten sensitive)
Serological equivalent 3,3 (subtype 8,7)
Extensive family history of autoimmune disorders and related symptoms
Posted 12 January 2009 - 12:41 PM
I have talked to her mom and her other symptoms scream celiac to me, but either way, they have removed ALL gluten and most other grains from her diet. She eats corn, rice, potatoes, sweet potatoes.
I have encouraged her to come on here, but don't know if she ever did.
pork and beef free- 1994
wheat free or wheat light- 2003
gluten free- January 2008
Posted 24 September 2009 - 05:50 AM
Unfortunately, I have no advice to provide, but I wanted to let you know that your situation sounds very familiar to me!
My son, who is now 8 years old, sounds like your son. He was a perfect, happy baby. Never cried, only smiled. When he was around 2 years old, he began to have horrible night terrors. He turned out to be very negative and irritable, and is prone to anxiety and sadness. (Though also very sweet, in a cranky sort of way.) At the age of 5, he was diagnosed with Tourettes syndrome.
The night terrors have become so constant that we're at our wits' end. The lack of sleep amplifies his other symptoms. We've tried counseling and supplements, to no avail. Finally tried Clonidine, which seemed to make things worse. I'm having him tested for gluten intolerance next, in the hopes that this will help. He does have a history of intestinal issues, which I stupidly never linked to gluten.
I wish you good luck and hope that the clouds have lifted a bit for you since you posted this message ...
Posted 25 September 2009 - 08:05 PM
Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.
"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States
Posted 28 September 2009 - 11:37 AM
This is a totally unreliable "source," but my mom said she read "somewhere" recently that the same genes that are involved in Celiac are involved in Tourette's.
My son has OCD and minor tics that the neurologist believes is related to our family history of Tourette's. He tested negative for Celiac with the blood test, but I'm not convinced.
My mom, sister, and I all have Celiac. My mom's brother has Tourette's.
gluten-free since mid-2007.
Symptoms: "IBS," chronic fatigue, chronic pain.
Celiac is a family affair for us; my mom, sister, and one of my sons are gluten free. At least it makes holiday gatherings easier.
Posted 28 September 2009 - 01:46 PM
I do not have narcolepsy per say, but I've read that narcolepsy can manifest in lesser degrees with bouts of afternoon sleepyness. I have fought that my entire life. There are also theories about a person's internal clock being linked to genetics, with the difference between a morning people and a night people simply being a difference in genes.
as long as you put it back where you got it when you're done with it."
Posted 28 September 2009 - 02:35 PM
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas!
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk!
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