Oral History Entire Interview Transcription

1.   When did you first learn of the possible link between autism spectrum disorders and foods containing gluten and casein?
    
    I found out in 2006, when my daughter was two.  This was when she was first diagnosed on the autism spectrum.

2.  Who was it that told you about the GFCF diet?  What did they say?

    I would say therapists and developmental pediatricians. We had early intervention therapists, who came to the house and asked if I’ve ever considered the GFCF diet.  But, before I tried it, I first went to check with a developmental pediatrician because I really didn’t want to just go off what therapists were saying though; I wanted a doctor to tell me, and  they  also recommended it.

    All the professionals I spoke with were very cautious and not one of them could guarantee it would definitely work. They told me to try it and to make sure that I was doing it 100% correctly.  It seems like a lot of people, even those who recommended it, didn’t say it would definitely work.  They said that some people absolutely swore by it, but they still couldn’t tell me that it was a sure thing.  They also said it couldn’t hurt her as long as I made sure she was getting the adequate amount of nutrition required. 

3.   Have the people that you spoke with about the diet experienced any personal success with it? What did they say?

    I did have parents tell me that it really works and that I have to do it.  Some of them absolutely swore by the diet, but a lot of their children had more physical symptoms, like problems with their stomachs.  So, of course, if your child is feeling sick all the time I would think it would hinder their development, and I think that’s why they had better results.

    My daughter did have some G.I. issues, which was another reason why it was recommended to me.  She couldn’t drink milk or hold any liquids down. She would vomit 8-12 times a day until the age of one. Because it is such an extreme diet, many of the doctors who suggested it said they usually only recommend it when they see something other than just a developmental delay, such as G.I. problems.  

    The thing that I really wonder is if it’s a possibility that the reason people had success with the diet was because their child was just late a bloomer.  If you do something for six months, obviously they’re going to mature within that time.  So I question whether it was the diet or just the fact that they caught up developmentally.  I think a lot of people tend to believe what they want to believe, especially after doing all that work. 

4.  Is it common for children on the autism spectrum to have G.I. issues, such as Celiac disease?

    I don’t really know since I’m just a parent and not a doctor, but it does seem to come up quite often.  I’ve heard of quite a few cases in which there is a link between the two.

5.  Do you know how gluten and casein affects children on the autism spectrum?

    I really did a lot of research on this, but the way it was explained to me was that it affects their “guts.”  It affects the way that they absorb nutrients, so not only could they be malnourished, but the biggest thing I heard about was something called “leaky gut.”  It’s believed that their guts are leaky, which causes them to feel lethargic or irritated.  If children are low on energy, it can be very hard for them to focus. Again, I’m not too sure how much to buy into all this, but I did read about it and my understanding is that it affects the way that they physically feel.  If a child’s malnourished because they’re not absorbing nutrients properly, their brain’s probably not going to develop properly. It’s very complicated because so many kids with autism have other issues as well, like autoimmune problems.

6.  Do you know the affects of gluten and casein in children on the autism spectrum?
    It usually affects people with Celiac disease, but there are also some people who, though they don’t have celiac disease, are still gluten and lactose (casein) intolerant. 

7.  What kinds of things were you required to do to be sure that you were fully eliminating gluten and casein from your child’s diet?
    I had to be sure to use completely separate utensils, servers (spatula, spoons, etc.), pots and pans, colanders, toaster, and of course, food elimination. You also have to look out for things that most people would probably never even think about, like vitamins.    

8.  Was it difficult to maintain the diet?
    Yes, probably the biggest and most difficult thing to keep in mind when trying this diet is contamination.  It’s very easy to accidentally mess the diet up because of this.  Food doesn’t have to be eaten in order for gluten to get into your system.  All it takes is to come in contact with foods containing gluten for it to get into the body.  For instance, if someone touches food containing gluten and then touches their face or food with that same hand, it contaminates the food.  It’s hard to always be aware of what your child is touching or eating when you’re not there.  Also, a lot of restaurants advertise a gluten-free menu, but none of it means anything if they are using the same appliances to cook and serve the gluten-free food.  In order for gluten to be fully eliminated, all trace amounts of it must be fully eliminated.

9.  Can you give some examples of foods that contain casein?

    Any products containing dairy.

10. Can you give some examples of foods that contain gluten?

Anything that contains wheat (also called enriched flour), barley, and rye, which are usually foods , like pasta and bread.  Basically, gluten can be found in most foods that contain complex carbohydrates, except for things like rice and potatoes, corn.  Some people say that oats are okay, while others say they aren’t.  The only way for me to truly determine that the diet was beneficial, was to not take any chances and fully eliminate everything, including oats.

11.  Does the diet require special foods or are there a lot of regular foods available that do not contain gluten or casein?

The easiest way to avoid foods containing gluten is to eat fresh produce and unprocessed foods.  Stick with shopping in the perimeter of the store to avoid processed foods.  They also sell plenty of pastas, cookies, and foods like that, which are gluten-free.

12. Do stores offer a wide selection of gluten-free and casein-free products?

    Yes, stores like Whole Foods, Genuardis, and Shoprite even have an entire isle dedicated to gluten-free foods.  The good thing is that there are a lot of products (mostly big companies) that advertise as being gluten-free, and are all throughout the supermarkets. Wegmans store brand always says if a product is gluten-free, by putting a large “G” on the package, and the good thing is it’s also a lot cheaper.  Wegmans and Whole Foods are the most comprehensive when it comes to food allergens, but Whole Foods is also very expensive.It wasn’t always like this though because back in 2006 I used to have to order my daughters foods online and also go to Whole Foods, which was extremely expensive.  I was paying $80 a week just for my daughter’s snacks and special soy milk.

13. Was it difficult to find restaurants that offered gluten-free foods? Which restaurants offer these foods?

    When my daughter was first diagnosed in 2006, it was very difficult to find restaurants that supported the diet, but nowadays I see a huge difference in the amount of restaurants.  All the big chains, like Bertucci’s, PF Chang’s, On the Border.  A lot of places have gluten-free menus that you can print before going.  It has become so popular that the staff and cooks at restaurants are known for being extremely accommodating and knowledgeable  when it comes to this diet. There are also a lot of smaller restaurants that are accommodating, but the big chains are the safest way to go.

14. Is it expensive to maintain the diet?

    Yes, for instance, I buy loaves of bread that are much smaller in size, about 2/3 the size, but are around $5, compared to $3 for a regular loaf of bread.

15. How long does it take to fully rid the body of all traces of gluten?

    I’m not sure because everyone is different, but that’s why they say to do it for six months. They say there’s no use in trying the diet for less than six months.  Though, there are some people that say they’ve noticed a difference in their child within a few days, but then again that might also be related to the fact that a lot of kids on the spectrum also have Celiac disease and G.I. problems.

16. Did you notice any significant changes in your child’s behaviors while she was on the diet?

    No, I noticed no changes in my daughter.  There were no changes in either her PDD symptoms or her regular behavior patterns.  We even kept both a food journal and a behavior journal to track her progress.  We also had three therapists (speech, occupational, and developmental) come to the house five times a week, and neither the professionals nor myself noted any differences.   But the professionals also said it could be because the diet. It doesn’t take much to mess the diet up, even so much as one goldfish cracker can completely throw everything off, and again, you don’t always know what your child is eating when you’re not there.  Though I didn’t notice any differences when she was on the diet, she has still made a tremendous amount of progress in the past few years, which I feel is largely due to the fact that she eats very healthy foods.  Even though I didn’t have any difference in my daughter while on the diet, I certainly wouldn’t tell others not to try it.  It just didn’t work for me.