The connection between Asperger's and gluten; Henry's story

asperger's and glutenHenry’s Story


Bruce and Wendy always knew their son, Henry, was a bit different. Some of these differences were endearing, like the way he would sit contentedly at the station watching trains pass for as long as you would let him. Others were more concerning, in particular, his extreme fussiness with food, which injected a regular dose of stress to mealtimes and had caused him to drop from the 75th to the 50th percentile on the growth charts. Overall, though, life was good; Henry was happy and Bruce and Wendy thought they were earning a solid B+ as first-time parents.


It was around the time Henry turned three that things started to change for the worse. Henry had always been a fussy eater, but it seemed like every day he picked a new food that he would refuse to eat from now on. Attempts to ply him with baked beans or cheddar cheese no longer met with refusal, but hysterical screaming tantrums. As time wore on these tantrums spread to more and more areas of life. If Henry wasn’t given a straw to drink his water, if his straw was the wrong color, if his straw was wet, if it had a dent in it…or if everything was right, but then he dropped it on the floor; everything was another landmine.


There were many possible explanations for Henry’s disturbing behavior. Bruce and Wendy had relocated to a new city and, a few months later, Wendy gave birth to a second son. Partly so Wendy could look after the new baby, they enrolled Henry, who had previously been looked after entirely at home, in a kindergarten. Bruce was working longer hours to pay for it all. Henry was jealous, disoriented, and missing his former life as a loved only child with the unlimited attention of his mother. Friends and family assured Bruce and Wendy that these things would pass: Henry would calm down and life would get back to normal.


But it didn’t.


With each week, the tantrums got more frequent, more intense, and more bewildering irrational.

Bruce and Wendy were walking on eggshells. Their previously happy marriage was cracking under the strain and life seemed to lose its relish for both of them. Even the new baby was becoming more a source of worry than joy. Henry would endlessly harass little Colin and sometimes his behavior around him was genuinely dangerous. Worst of all, both Bruce and Wendy could feel their love for Henry eroding away. They had less patience for him even when he was behaving normally. When he would fall or bump his head as a result of his out of control behavior, they had to beat down feelings of relief before rushing to comfort him. Bruce would lose his temper at least once a week, shouting out of exasperation more than any genuine hope of instilling discipline. One night, after a particularly harrowing day, Wendy broke down in tears and confessed to Bruce the thoughts that had been weighing her down for too long. She didn’t like being a parent anymore; she didn’t love Henry as much as she used to; in truth, she was barely sure she loved him at all, or liked him. Bruce felt as if a great burden had just been lifted from him, for he knew exactly how she felt.


Bruce and Wendy knew something had to change. This wasn’t acting out, or a delayed version of the ‘terrible twos’. Something specific was wrong; the only question was whether it was fixable. Bruce had worked for a time in special education and for about a year he had mentioned on and off that he thought Henry showed signs of Asperger's syndrome. Finally, the pair sat down together and looked at the symptoms of Asperger's in children and it was like reading a book of their life. Doesn’t pick up on social cues - check, dislikes change in routines - check, talks a lot about their thoughts - check, formal style of talking - check, unusual facial expressions - check, highly sensitive to loud noise and strong tastes - check, poor motor skills - check, avoids eye contact…well, you get the idea.


With this ‘diagnosis’, Bruce and Wendy felt their life made a lot more sense. They also recognized a lot of the symptoms in themselves and other family members, which is natural since Aspergers has a strong genetic basis. Henry’s case was much worse than anything they remembered from their own lives, though, and giving it a name didn’t help them very much with what to do. Indeed, they were looking forward to an intimidating future of regular visits to child psychologists, which would further drain their time, empty their finances and likely not achieve all that much.


The gluten connection


So Wendy turned to Google to see what she could find. There was a huge amount of conflicting advice and theories; however, one word kept popping up: gluten. Various researchers claimed to have shown that children with Asperger's who switched to a gluten-free diet showed a significant improvement in their symptoms. The theory runs that peptides formed from partially digested gluten have a similar chemical structure to opiates. For most people, these peptides are broken down further into amino acids before they can do any harm, but people with Aspergers have a ‘leaky gut’ allowing these peptides to slip into the bloodstream and interfere with their brain.


So Brian and Wendy gave it a try. They didn’t hope for much, but they didn’t have much to lose. They went to the supermarket, bought everything they could find which was labeled gluten-free, finished off whatever bread, cakes, and biscuits were left in the house, and within a week they were ready to go. Henry moaned a bit about the missing Oreos and Ritz crackers, but he took it reasonably well. The family adopted the new diet and waited.


They didn’t have to wait all that long. After a little over two weeks, Brian and Wendy could already see that Henry’s tantrums were getting less intense. A renewed sense of lightness fell over the house as Henry smiled and talked more while shrieking and crying less. One day, about a month after they started the new diet, Henry’s baby brother tore to bits a lego structure that Henry had spent more than an hour working on. Wendy and Brian braced themselves for the meltdown, but Henry shrugged his shoulders, gave Wendy a hug and asked her politely to help him make a new one.


As time wore on Henry’s behavior continued to improve. He made friends more easily in the park and learned to express his frustration with uncooperative playmates without lashing out. He could have new foods introduced to him without hyperventilating. He was happier and so were his parents. More importantly, now that they were no longer bracing themselves for the next meltdown they had the freedom to be better parents again, they recovered their resources of love, affection, and patience. They got their son back; they got themselves back.


Should you try quitting gluten?

Henry’s story is extreme, but it’s far from unique. Tens of thousands of parents credit eliminating gluten from an Aspergers child’s diet with saving their families. Others have seen less dramatic changes, but still noticed improvements in communication, self-control, and obsessive behavior. Another set of parents report similar improvements only after also removing milk and dairy products, which contain casein, a protein that is similar to gluten. So, if your child has Aspergers or Autism, is it time to go gluten-free?


The answer is not as simple as you may think. For a start, while individual stories can be very persuasive, there’s yet to be a clinical trial which conclusively shows a link between Aspergers and gluten consumption. Some researchers claim to have found opiate-like proteins in the urine of gluten eaters, but their results have not been replicated. Indeed, the question of whether there is any link between Aspergers and what is going on in the gut is itself deeply controversial. Those who support the theory are divided between those who think it is the main cause or just an aggravating factor. One of its earliest proponents was the infamous Dr. Andrew Wakefield, hero of the anti-vaccination movement, who had his medical license revoked for publishing fraudulent studies claiming to show a link between measles vaccines and Autism. As a result of concerned parents following his advice, the rate of frequently deadly measles in Great Britain jumped from almost nil to over 2,000 a year.


The risks of quitting gluten are not nearly so serious, but they are worth considering. The majority of people who quit gluten put on weight, largely because they have to resort more frequently to high-sugar, unhealthy foods to fill themselves up. While bread is usually categorized as a carbohydrate food, it’s also about 8% protein (that’s what gluten is, after all) and gluten-eschewers often find it hard to make up the difference. They are also likely to be missing out on niacin, thiamin, zinc, and other nutrients found in bread. This is an especially serious concern with children with Asperger's who are more picky about food. You definitely want to avoid restricting their diet unnecessarily.

As always, interventions of this kind should be made in consultation with a doctor and possibly a dietitian. Many medical practitioners, however, won’t be aware of the possible link, so come armed with information. In the meantime, let’s hope that autism researchers continue to make progress on finding causes of and treatments for Aspergers and Autism, for the sake of all the Henrys out there.

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Submitted by Wendy Frank. Names changed for privacy.

Autism Spectrum Disorders Children and Teenagers Developmental Disorders
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