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Autism and the Gluten/Casein-Free Diet: When Can We Stop?

 “My son has been on the gluten-free casein-free diet for two years. How do I know when to take him off?”

 

 Today’s “Food for Thought?” response is from developmental pediatrician Daniel Coury, medical director of Autism Speaks Autism Treatment Network (AS-ATN). Dr. Coury is also the chief of developmental-behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio.

Much has been said about the gluten free, casein free (GFCF) diet and its use to help individuals with autism.  Many families with children newly identified with autism wonder if it’s something their child should follow, and others who have been following the diet wonder if they should continue to adhere to it.  Let’s try to answer these questions.

The GFCF diet was first developed for people with celiac disease, a disorder that involves a severe reaction to gluten in the diet.  Gluten is found in wheat products such as bread and other bakery goods but also in a wide variety of other food products.  Casein is a protein most associated with dairy products and also has potential to cause severe reactions in certain individuals.  When used appropriately, the GFCF diet is safe and can help avoid these severe health problems.

The theory behind its use in autism is that if a person is having GI responses to these products, the resulting inflammation may damage the lining of the intestine and, so, lead to absorption of molecules that are not normally absorbed by healthy intestines.  Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities, mental difficulties and perhaps worsen the behavioral symptoms of autism.

That said, while the GFCF diet has been used in the autism community for a couple of decades, there is minimal evidence that it improves autism-related behaviors.

Should you place your child on the GFCF diet in the first place?  
If your child has GI problems (diarrhea, constipation) and sensitivity to certain foods that contain gluten or casein, then the GFCF diet is worth considering.  Over the past decade, the medical community has improved its understanding of gluten-reactivity in a small but significant portion of the population. Some of these individuals react to gluten even though they don’t have all the classic laboratory signs of celiac disease. 

Once you've started the diet, if and when should you discontinue?
To answer this question – and it’s an important one – you want a clear idea of what you expect the diet to help. For example, are you hoping to relieve your child’s GI symptoms? Certainly, that is a good thing.  So if the diet improves your child’s GI discomfort and his behavior also improves as a consequence, that’s a clear benefit that’s worth maintaining.

So if you embark on a trial of the GFCF diet, I suggest you make a list of the benefits you seek. Ideally, I’d recommend you make this list a week before you start your child (or yourself) on the diet.  Then, keep a diary of the discomfort, behaviors or other symptoms of concern to you.

For example, if you hope the diet will improve your son’s diarrhea, it is helpful to know exactly where you are starting.  Does he have diarrhea five times a week? Twice a day? It will be good to know these numbers. 

Then keep up the diary as your child starts the diet. Two weeks later, does he still have diarrhea 10 times a week? You may look at your diary and say “Hmmm.  I don’t think this is working.”

But you may find that with the diet, your child had diarrhea only once in those two weeks. Then, you’d probably say “Hmmm.  This seems to be helping.” 

The problem with not establishing a baseline is that parents, and your child’s doctor, are left with vague impressions such as “I don’t know. Maybe it’s working. He seems to have less diarrhea, but it’s hard to tell.”  This makes it difficult to decide whether to continue with the diet or not. So, take the time and establish that baseline. 

Discussions with your doctor
I also strongly urge you to discuss the diet with your child’s doctor.  Some doctors are more familiar than others with the GFCF diet’s popularity in the autism community.  However, most doctors understand the dietary restrictions involved and how they might interact with a child’s particular health conditions and nutritional needs. 

So please work with your doctor and keep her aware of what you’re doing. 

In addition, a nutritionist can provide guidance around the GFCF diet.  We sometimes encounter families who believe they are providing a GFCF diet, but actually continue to eat foods that contain gluten or casein. It can be tricky, because these proteins can be in some foods you might not suspect.

So presuming, you’ve taken all these steps, let’s circle back to your question: How long should you continue the GFCF diet with your son?

From what we’ve learned with celiac disease, it can take months for the gut to heal with clear improvements in GI symptoms.  If your child does not have celiac disease, it may take somewhat less time.  So a trial of two to three months should give ample time to see any benefits.   

You say you’ve been using the diet for two years. If you haven’t seen clear improvement, then the diet almost certainly isn’t necessary.

Suppose you have seen clear improvement.  When should you stop the diet? We can’t answer that with a flat statement.

Some people can go back to a gluten-containing diet without their prior GI problems returning. Others have them return as soon as they start back on the diet. 

We can’t predict this, so whether you want to try is a decision to make with input from your child’s healthcare team. 

If you do continue with the GFCF diet, I recommend that your child take a daily multivitamin supplement to ensure adequate amounts of recommended vitamins and nutrients.  Your doctor or nutritionist should be able to advise you on this matter, as well.

Thank you for your question, and best wishes to you and your family.

Also see these related Autism Speaks news stories, blogs and resources:

FDA Issues Standards for Products Labeled Gluten-Free

In Autism: The Importance of the Gut

Unraveling Autism’s Gluten Mystery

How helpful is the casein-gluten-free diet?