If you’ve been browsing the web for information about autism, chances are you’ve come across the GF/CF diet. GF/CF stands for Gluten Free/Casein Free and is believed to be helpful in reducing the symptoms of autism to make living with the condition more manageable.
A quick look at what gluten and casein are:
Gluten is a protein found in wheat and some other grains. It’s the stretchy substance that’s released from flour when it’s kneaded to make bread, but it’s present in all wheat flour. Some people can’t digest gluten properly as their body’s immune system attacks it. In responding to the gluten, the immune system also attacks the intestines, mistaking them for foreign material, and causes damage that inhibits absorption of nutrients. This condition is called coeliac disease, and it’s estimated that 1 in 100 people have it, though most go undiagnosed unless they experience serious symptoms. Coeliac disease has hundreds of different symptoms and complications, which range from digestive upsets to neurological symptoms.
Casein is a protein found in dairy products. Casein quantities vary between types of milk (for example cow’s milk has a lot, whereas human milk has less). Some people are allergic to casein. Casein allergy is not to be confused with lactose intolerance, which is an inability to digest the sugars in milk.
I’m not an autism expert, researcher or doctor, so I can only describe my experiences with diet and autism.(Full disclosure: I’m not formally diagnosed yet.) My mother describes occasions on which a well-meaning relative had given me a drink of fruit squash only to have me screaming for hours on the car ride home. When I was little, chocolate would leave me moody for some time after eating it.
Now I’m more in control of my own diet, I’m able to experiment a bit. I stumbled across the Paleo Diet whilst looking for a diet plan that would encourage me to eat more healthy foods, and possibly cut down on a little weight to improve my performance in some of my hobbies. The Paleo Diet is supposedly based around the diet our ancestors would have eaten as hunter-gatherers, and excludes a list of foods that are common allergens.
Dairy is excluded, because of the high incidence of lactose intolerance, particularly in parts of the world where dairy has only recently been included in the diet. Peanuts are also excluded because of how many people are allergic to them. All grains are excluded, mostly because they offer no real nutritional value other than being an easy source of carbohydrates, but gluten-containing grains are also excluded because of their allergen status. Legumes (things like peas, beans, chickpeas and soya) are also excluded because they’re thought to cause inflammation, and contain substances that inhibit absorption of other nutrients contained in the legume. (It’s a common misconception that foods containing “antinutrients” steal nutrients from your body, the reality is that you just don’t absorb the nutrients inside them as readily, so you’re not really getting all of the vitamins and minerals promised on the back of the packet). Sugary foods permitted by the diet (like fruit and honey) are to be eaten in moderation, as blood sugar stability is an important part of the diet.
So I did Paleo for a few months, with one free “Pizza Day” per week, because sticking rigidly to a diet is almost impossible, and cheat days help you stick with it the rest of the week. I noticed that after Pizza Day, I’d feel sluggish and my joints would hurt. After other cheats, such as breaded cheese bites from fast food shops, I’d have big problems with eye contact, attention span and my ability to find the words for things. I’d also experience a generic feeling of discomfort which I couldn’t really describe, it just made me want to groan. Of course, over Christmas, with lots of family visits and party food, I fell off the Paleo wagon. When I went back to work, I realised that my focus was poorer, I was also still feeling sluggish and uncomfortable, even though I’d sort of got used to it. I decided that I’d get some allergy tests.
Here’s the bit where I parrot the medical professionals and urge you, if you think you have coeliac disease, get tested before you change your diet. Keep a food diary of what you eat and what your symptoms are, but I promise it will be so much easier if you don’t try gluten free until you’re diagnosed. Because of my time away from gluten, I’ve had to do a gluten challenge. Because the damage caused by coeliac goes away when you stop eating gluten (and because that damage is what the doctors use to diagnose you), you really must stick with the gluten until you get a diagnosis. It can take weeks, even months of being back on gluten after a gluten free period to develop the levels of antibodies needed for a positive test, and really, after going gluten free, going back on gluten feels so much worse. Trust me, it’s better to just stick with it until you’re diagnosed.
I went for blood tests on Monday (that deserves a blog post all of its own), so now I’m awaiting results. After the blood test, coeliac testing can go one of two ways. If the result is negative, normally they won’t do anything further. However, in the face of overwhelming symptoms, they might be persuaded to do a gut biopsy to test for the telltale damage to the intestine caused by coeliac (which, by the by, is technically an autoimmune disorder rather than an allergy or food intolerance). If the result is positive, normally you’ll have a gut biopsy to confirm. Note that blood testing for food intolerances, allergies and coeliac disease isn’t very accurate. My GP advised me to take any allergy results with a pinch of salt, because all the test shows is that you’ve eaten a food recently that has caused an immune reaction and that there are antibodies for that food in your blood. Some people can quite happily eat foods they’ve tested positive for allergy to, and conversely some people experience symptoms when eating foods that they tested negative for allergy to. Use your common sense, and keep a food diary.
So how do autistic symptoms triggered by diet feel? Well to start with, I don’t have any control over my symptoms. When autistic people have a “meltdown”, it might look and sound like a temper tantrum, or just being difficult, or naughty, or inconsiderate, but there’s honestly nothing we can do once it’s started to stop it from happening. It can feel like an annoying fly buzzing around in your head. An irritation that distracts you from everything else and all you want to do is get away from it. The problem is that irritation’s right inside you, and you can’t get away. Stimming can relieve it a little by taking our minds off what we’re feeling. Sometimes we’ll just want comfort, or to be left alone. Sometimes we will be desperate to have reassuring hugs but find physical contact incredibly uncomfortable. It’s frustrating. It’s just as frustrating for us as it is for our carers, even if we understand what’s happening.
Sadly, we can’t just snap out of it. Just like any other meltdown, our ability to think through things and compensate for our condition by changing our behaviour is severely reduced. As you probably know, meltdowns will usually go on until whatever caused them is gone, which with dietary problems could be hours or even days. What we can do is try to identify the causes and take preventative measures before the first feelings of impending meltdown set in. Tiredness, hunger, dietary triggers, unfamiliar or scary environments or interactions can all start a meltdown. Thorough planning to ensure your (or your autistic child’s/friend’s/partner’s) needs are met is a must.
I’ll close with a few dietary triggers I’ve found affect me, hopefully they’ll be helpful for others trying to identify meltdown causes.
- Sugary foods (in excess)