The title of this post may seem strange, but gastrointestinal (GI) disorders are one of the most common medical conditions accompanying autism.
The GI issues can range from chronic diarrhea, or constipation, to bowel conditions such as irritable bowel syndrome, and inflammatory conditions such as Crohn's and ulcerative colitis. The studies done are largely with children, but GI troubles and autism can be linked at any age.
Children with autism are six to eight times more likely to suffer gastrointestinal problems than typically developing children, according to new research from the University of California-Davis’ MIND Institute. 50% of all children with autism suffer from food allergies, and maldigestion or malabsorption issues. Other researchers have found a strong link between GI symptoms and autism severity. Just a few years ago doctors dismissed the idea that food allergies and intolerances might have an effect on autism and it's symptoms at all.
When Caleb was around 3 he still had little to no (spontaneous) speech, he was having many times a day, 7 days a week melt-downs, was running away a lot, had no sense of danger, and we had noticed that his bowel movements went between diarrhea and what we called "the baseball" (a rock hard poop so round and big that we literally didn't know how he could pass it).
I had read a lot about a link between autism and food allergies, the most common being a gluten intolerance, and a casein intolerance. Gluten is the protein found in wheat, but it is made up of 2 different proteins (and some of these 2 proteins are also found in rye, barley, and some crossbreeds, which is why people avoiding gluten avoid those grains also). And casein is the main protein found in milk.
When we started talking to people about possibly trying Caleb on a gluten free/casein free (gf/cf) diet, we had a lot of "nay-sayers": "it's too expensive", "there's not a big variety of food", "he won't like it", "nothing will cure his autism". We were never looking to "cure his autism", it was about trying things for Caleb that would relieve him of some of the triggers that brought on his very negative autism symptoms (as mentioned above).
We started Caleb on the gf/cf diet in October 2003, a few moths after he had turned 3 (just as a side note, a child on a restricted diet needs to be on a supplement to be sure they are getting enough essential nutrients). I would describe the first 3 weeks as torture....Caleb's meltdowns seemed more frequent, he seemed more un-manageable in public (running away, taking off clothing, having meltdowns), and we started to wonder if this was a good idea. I had (luckily) read about kids going through "wheat withdrawal" when taken off wheat, and I'm not sure if taking away milk and milk products made that worse, but it was bad. But I knew from my reading, that in order to see if it would be beneficial, a good 3-4 weeks was needed.
Then I remember, clear as day, standing at my kitchen sink and doing the dishes. Up to this point with Caleb and his speech, we had to prompt every word. He was capable of saying words, but was still considered "non-verbal" as he could not/would not sporadically say them on his own. For instance, for a drink, we would first sign (sign language) "Mom", and he would say, "Mom....", then I would say, "may I please...", and he would repeat, then I would finish, "have a drink", and he would repeat. Sentence said...sort of. It was working (ish) for him, we were glad he could make words. But we just really hoped that his brain would understand that the words he was saying had real meaning, and that he could use them on his own. Anyway, back to the kitchen sink after a few weeks of the diet: Caleb walks in, and I turned to look at him, just wondering what he was doing. He stops at me and says, "Mom.....Caleb.....to have.....please....a movie".
He did it!!! All by himself, he walked in and asked me a question! I picked him up and was so excited, and crying, and I remember telling him he could watch moves all day if he was using such good words!
We saw fairly slow, but steady improvements in his behaviour after that. He still had melt-downs, we still had to do a lot of promoting for words (that choppy sentence was one of the only things he could say independently), he was still struggling to become potty trained, but his bowel movements became more consistent, and even his skin looked healthier, and the dark circles under his eyes went away.
Once, about a year later, we left Caleb at a babysitters house. The family he was going to stay with for a few hours had called to tell us they would making hotdogs for dinner if we wanted to bring along a gf/cf hotdog and bun for Caleb so that he would be eating the same as them. So, I brought a hotdog and bun along. However, when the mother of the family set the food out, she failed to tell her children which one was Caleb's, and she didn't realize one of her daughters had sat at Caleb's plate, and Caleb had sat down at a regular hotdog.
A few hours later, when we went to pick him up, we walked in and found him laying in the front room of the house, with the lights off, and holding a light up toy right to his face. The Mom greeted us, then told us that Caleb had eaten a regular hot dog and bun, and shortly after dinner he went into this front room, and has been laying down with this light-up toy in his face. As soon as Caleb realized we were standing there, he just started bawling. It wasn't a "I miss my parents" cry, it was a strange, really sad, can't say what hurts or why, kind of cry. His eating one hotdog was making him shut-down.
So, what's the connection between the gut, and the brain?
Do certain situations make you feel nauseous, or like you have to use the bathroom. Do you ever have "butterflies" in your stomach, how about a "gut wrenching" experience? There is a reason why we use these terms, and it's because our GI tract is very sensitive to emotion. Any emotion can trigger a response (and symptoms) from our gut.
The brain and the gut are so closely connected. The thought of eating can cause the stomach to produce digestive juices before you've even taken a bite, and the problematic intestine can send signals to the brain. So, it's fascinating to think that "tummy troubles" could be the cause of or the by-product of depression, anxiety, stress, etc.
The role this plays in autism is becoming more clear. A child with autism is feeling constantly bombarded with stressors (because of their sensory confusion), and often reacts by acting out because they lack the verbal skills to talk about how overwhelmed they feel (some studies have shown that if a child or adult has the verbal/communication skills to talk about what stresses them out, their GI issues go away). Then, because of the stress (and how it can effect bowl movements, cause inflammation, create malabsorption issues-which make you feel sick and more susceptible to illness) it starts a reaction in their gut, and that causes their behaviours to become even worse as they are now receiving signals to their brain from their gut that things are not right.
Research has also shown that some people with GI disorders feel the pain in their gut more severely than others because their brains do not properly regulate pain signals from the GI tract. Stress can make the existing pain worse, and the pain increases stress, and round and round that cycle goes.
The gf/cf free diet is not for everyone though, and will not work for everyone. The main idea behind it working for children with autism is that if their gut is causing their brain extra stress, eliminating common allergens can decrease the stress they feel, and help them cope better with everyday life. But, if a child with autism isn't receiving stress signals from their gut because of an actual allergy (and only from stress), then the diet might not help. My advice is to follow your gut (aka-your brain) :) If your child has poor skin tone, dark bags under the eyes, inconsistent bowel movements, or other "not right" symptoms, why not give a gf/cf diet a try. The food options now are way (waaaaay!) better than when Caleb first started on the diet (though, try to do the gut an extra favour and up the naturally gluten free foods such as meat, nuts, fruits and veggies), and can make a gluten free life for a child more enjoyable.
The bottom line is, if it could help, why not try it? When Caleb was about 6 we let him start eating regular yogurt and cheese again (I have strong feelings about soy products, and that was what the milk-free options were made of). We monitored his reaction to the food carefully, and decided that drinking milk was still difficult for him, so he still drinks almond milk. It's not about trying every new fad that people come up with for "curing autism", it's about wanting to create the best possible scenario for your child so that they feel their best, and can become their best.
Hi, I'm Amy-Lyn!
I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids!
Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : )
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