Many parents of children with a autism spectrum disorder report that their child’s behavior improves when their kids eat a gluten-free/casein-free diet (GFCF). While the studies and reports are mixed about the GFCF diet and its results, some families swear by this diet and there are some important things parents should be aware of before starting the special diet. Also, it is important to discuss and consult with a nutritionist, dietitian, and/or physician before starting any sort of strict diet on your child.
It may not work for everyone
According to a study by Autism Speaks, nearly half of all kids with autism spectrum disorders suffer some kind of gastrointestinal symptoms like diarrhea or constipation or both. While it’s possible gluten and casein proteins may trigger a body’s immune response, causing inflammation of the GI tract, it’s also possible that food allergies and intolerances aggravate autism symptoms. We do not understand why, but the GFCF diet doesn’t help all children with autism. Those who have food allergies or chronic digestive problems seem to get the biggest benefit from the diet.
This is a very strict elimination diet
The GFCF diet removes completely two major proteins: casein (found in all milk and dairy products), and gluten (found in wheat, barley, rye, and some brands of oats). Even though there are obvious foods that need to be eliminated, but there are tons and tons of processed foods that contain ingredients made with either casein or gluten so parents and caregivers will need to be extremely careful when choosing foods, especially since some non-dairy foods may contain casein. Some studies have shown that kids who strayed from the diet just once every other month showed fewer improvements than those who barely ever broke the diet in a year. Things like birthday parties and going out to eat will be difficult, and you may need to bring your own prepared food everywhere you go.
Working with a professional is an important factor to success
As this is a very strict and restrictive diet, getting professional help is very important. Having the support and benefit of working with a nutritionist or a registered dietician, along with a doctor, can ensure that your child’s health is improving and no deficiencies are developing. Gluten and casein are found in many foods that kids eat, so removing these foods can compromise health, nutrition, and growth if the new diet isn’t well planned and you are dealing with a picky eater on top of that. For example, gluten-free breads and cereals aren’t usually fortified with B vitamins, as standard grains are, and eliminating all dairy products means losing important sources of calcium and vitamin D.
Have resources on hand
Aside from having a nutritionist and doctor on hand, it would be a wise idea to join online support groups on Facebook and other social media pages of other families who are also following the GFCF diet and have a recipe swap. There is also TACA’s GFCF Grocery Shopping List (https://www.tacanow.org/family-resources/gfcf-food-shopping-list/) that you can take with you while you go do your grocery shopping. It is very important to read labels ALL the time as food ingredients can change.
Be patient – it can take time.
Casein clears from the body in just two or three days, but it can take four to six months for all traces of gluten to be gone from the body. In addition, if your child has been diagnosed with celiac disease, it can take even longer. The average time to see if it helps your child is about six months. Some children improve pretty quickly, while others it may take weeks or even months, and other children have no changes at all.
Success will depend on you and what you consider success in your child’s improvement. Before starting the diet, think about what improvements you are hoping to see. Are you hoping for gastrointestinal changes or behavioral as well? If after six months, you are still not seeing the improvements you were hoping to measure for, this difficult diet may not be worth it.
At Circle 4 Parents, we offer group sessions for parents sharing similar challenges to connect with each other and share. Our sessions, My Greatest Gift: Having a Child With Special Needs and Autism, Laughter & Peace, are designed specifically for parents touched by Autism. We are here to support you in your journey. Join a sessions for free by using the code FIRSTFREE.
An original Circle 4 Parents blog.