Monday, October 19, 2009

Gluten-Casein Free Diet Explanation

I have avoided this blog post for a long time because I have always found it so difficult to explain. Before I continue, I must preface it by saying that I am not one of those autism moms that insist that it is going to work for every person with autism.

We were at our wits' end a year and a half ago. Owen had quit eating any and all solid food and his pediatrician had put him on Pediasure as a meal replacement. His body was covered in eczema and he had dark circles under his eyes. Will was a crazy man. His hyperactivity was at an all-time high, he hadn't slept through the night since he was born, his tantrums were out of this world and his focus was non-existent. We had been going through a few months of trialing meds and were currently using Ritalin (which I hated with every fibre of my being, not to mention how he must have felt on it). Will had an absolute addiction to carbs and had since he was born, and Owen could survive entirely on milk. Both boys would often get flaming red cheeks and ears following different foods, though we could never pinpoint the cause.

We thought we would try the diet and see what would happen. For Owen, we switched from Pediasure (dairy-based) to a rice-based meal replacement ($$$). Within a couple of days we saw the physical changes in his body; the eczema cleared up and so did the dark circles. He became sharper and more alert, losing the autistic "fog" he seemed to have (lost in his own world). Will became a different kid, or shall I say the best version of himself. Within two days we realized he had to be immediately taken off Ritalin. The hyperactivity disappeared; he sat beside us on the couch to watch tv- he had never sat to do anything before! (leisure-related). He slept through the night. The second night, the third night.. and we never looked back. He virtually toilet trained himself within the next month. He laughed. He started talking.

Did I ever tell you the story of my random dinner with the unforgettable Temple Grandin?

I'll have to save the story for another day, but I will say that it was, for me, like hanging out with Ghandi. She is brilliant. This woman holds a PhD and what I found so interesting, was her response when I asked her what she thought about the Gluten/Casein-Free Diet for people with autism. She told me that when science cannot support a method of treatment or intervention, she launches into her own interview with parents that she's met all over the world at various autism conferences and such. If she can find three people who can satisfy her science brain by answering her very tough questions, then she's convinced it's worth a try. As far as GFCF is concerned, she says she's interviewed hundreds who have succeeded. "It can't do any harm to try and I think it would be stupid not to". Her words, not mine.

I stumbled across a wonderful blog called Pray for Nathan Dorje. Nathan was born with a genetic mutation that caused a brain malformation called severe holoprosencephaly and was later diagnosed additionally with hydrocephalus. It wasn't expected that Nathan would survive, and if he did, he would likely be a vegetable and not have a meaningful life. A few years later and Nathan has so far proved them wrong, though he still faces many challenges. His prognosis is currently uncertain, but in the meantime, his family rejoices in their little boy and they blog to share his story.

His mother, Marcela posted her explanation of the GFCF Diet. I thought it was a wonderfully concise summary of what I could not explain myself.

This is a very extensive topic and requires a lot of education so I thought maybe I’d share a little bit about how we came to understand the relationship between health, development, and diet.

About a year ago I picked up Jenny McCartney’s book about her autistic son. She talks about curing autism with diet and she made clear correlations between the gut and the brain. I’ll try to simplify, but in a nutshell, the proteins in milk and wheat are quite large. When the milk/wheat is digested, it breaks down into smaller components, and the peptides that you get for them are very large. These large peptides have a tendency to perforate tiny holes in the intestines, causing something called “leaky gut”. Through these tiny holes, toxins, peptides, and other elements escape into the bloodstream. The immune system sees them as “offenders” as they are ‘out of context’ – they’re supposed to be in the digestive tract, not floating around in the blood stream. So the immunoglobulins (IgG) attack those substances, causing an allergic reaction. This allergic reaction releases histamine, which is a neurotransmitter that prevents the creation of other neurotransmitters including dopamine and serotonin, which are essential for proper brain development.

Another thing that happens is some of those peptides travel to the brain and in the brain they function like an opiate (like the drug opium) causing a hazy, foggy feeling that prevents proper brain processing and interaction (like being drugged).

Also, if there is constant inflammation, the immune system is always in overdrive, which in and of itself has serious consequences. Eventually they become immuno-suppresed, which leads to other problems.

Also, substances like milk and wheat feed fungus like candida, which releases a nasty toxin into the bloodstream.

I am trying to keep it simple so in a nutshell, wheat and milk are very difficult to process, even for healthy people, and can wreak havoc on children that already have compromised central nervous systems.

There are many books / studies talking about the connection between the gut and the brain. Without a heatlhy gut the brain is functioning at a much lower rate. That was my next step. Even though Nathan has CP, not autism, I made the connection between “compromised nervous system” and gut and a light went off in my head.

In the autism world they recommend the Gluten Free Casein Free Diet (free of milk and wheat). That seemed like my next logical step as they see miraculous recoveries in children with autism using this diet. Even though the symptoms in autism and CP are quite different, they are both CNS disorders so I figured that it was a good connection.

We went cold turkey. One day Nathan was eating cheese, chocolate, milk, and whatever we wanted. The next day he couldn’t have any of it. He had a rough couple of days but we stuck to it and on his 4th day he was okay with the new diet.

We cook everything from scratch. We don’t use anything with preservatives, or anything that may contain hidden traces of milk or wheat. Breakfast tends to be GFCF cereal (with rice milk) or GFCF pancakes (these are sold pre-mixed at health food stores). Lunch is usually vegetables, a grain like brown rice, quinoa, or millet, and a protein (fish, chicken or beef). We buy everything organic for him. Dinner is usually something similar to lunch. He gets 2 snacks which are usually fruit, or carrots, or millet with avocado, or rice cakes, or oatmeal. Nathan can’t chew well so everything is pureed.

The first 3 months were tough because he was detoxing. He was sick a lot. But then we added some of the same supplements used in the autism world (B vitamins, multi-vitamins, etc) and his immune system recovered. Starting Feb 09, Nathan has only been sick twice for a couple of days, he has much more energy, he is more connected, he understands more, he is trying to do new things, he looks rosy and radiates health, he is stronger. Just a couple of weeks ago I was able to see the true power of the diet. We had to break the diet because we are in a foreign country and it took us a little while to figure things out. So for 2 days he was allowed milk and wheat. On the 3rd day Nathan was pale, spacey, very low energy, and irritable. I could see instantly the poor effect these foods had in him. We want back to the diet and after 4 days of detoxing he was back to being connected, healthy, and happy again.

I cannot recommend cutting out milk and wheat enough, our kids have enough going on and don’t need more obstacles to their development.

If you are interested in hearing more about the controversy, here is a decent article that sums it up nicely: CLICK HERE.

Three to four months ago, we re-introduced dairy back in to Will's diet and have seen no negative effects. If Will even takes a nibble of wheat-bread crust, we immediately get a crazy person back in our home. Every moment of this experience has been worth it to have the kids I have today. I believe they feel better, therefor they are happier. I wish any other parents trying to figure it out, the best of luck.


debi9kids said...

WOW! I haven't heard all of this info but now that i have, I am going to give this diet a try!
We already do a natural diet, so it will just mean cutting wheat and milk out.
Thanks so much for posting this.

Stacey said...

All the more reason that I need to get you that copy of Jenny's book. It's really more detailed than just wheat and dairy. Gluten and casein are found in so many sources... once you get the book, I would be happy to point you to more resources. It really isn't worth trying, if you don't eliminate ALL gluten and casein, or you'll never know if it's working or not.

Unknown said...

Many of the recommendations are little different than the diets recommended for diabetics. Dairy seems to seldom be a real culprit unless the person is lactose intolerant and then the symptoms are rather obvious (my wife is lactose intolerant and has been since birth).

Reduction of carbs (which tend to be grain based in the American diet) seems to be the key for main types of control.

Good luck with your kids.

Viv said...

If you have tried it (and don't mind me asking) what about spelt? Does the gluten in spelt affect your boys? *I have one that is in the process of becoming gluten free, but, our ped advocates for spelt in place of regular gluten free bread

Dana said...

I have known Stacey since before the twins were born. I was around during the diagnosis, I have seen the behaviours, watched the boys grow up and change. I love those boys and their entire family!!! Last Easter, my daughter & I went out to visit. We hadn't seen Will in a year and a half. We had kept in touch with Stacey's visits home and through the blog. I couldn't wait to see the changes in Will that I had heard all about!! We arrived from the airport to see a very similar Will to the one I remembered from a year & a half ago. I was sad and a little disappointed. Then we discovered that Will had "stolen" some of his brothers pizza left on the table....The next day we awoke to a new Will. Honestly, the memory still brings a tear to my eye. The Will they had been telling us about was here!!! He laughed with us & interacted with us. He even imitated his brother and learned a new phrase "ewwww gross!" and knew just the appropriate time to use it! I sure saw first hand enough proof to convince me of how important this diet is!! You guys just keep up the good work. I know it isn't easy to stick to, but it is worth it!! I love and miss all of you!!! Dana

Caution/Lisa said...

I've often heard that when this diet works, it's almost miraculous. I'm so glad it's working for you. It was suggested to us years ago that we try it for oral motor apraxia, but I felt overwhelmed at the changes it would require of me. Now we are dealing with Asperger-like symptoms in another of our kids, and you've got me thinking that maybe it's time to change the diet.

Gluten Free Sourdough Baker said...

Hi Stacey and all,
Your blog is fantastic, clear, concise and powerful! I'm so glad your family has seen such dramatic improvement. I have developed sourdough bread recipes that are free of gluten, dairy, eggs, soy, yeast, sweeteners, gums and baking powders. They taste great, are nutrient dense, highly digestible and have long shelf life. People who cannot eat bread can eat my bread. Please keep sharing.

Stacey said...


Spelt is an ancient grain that has recently had a comeback. SOME people have found that their digestive systems can handle it as an alternative to wheat, BUT IT DOES CONTAIN GLUTEN! The grain is naturally high in fiber, and contains significantly more protein than wheat. Spelt is also higher in B complex vitamins, and both simple and complex carbohydrates.

There are a lot of GF breads out there that contain rice or tapioca, perhaps your ped recommended it because spelt has more nutritional value and some gluten-sensitive people can handle it.

I would personally recommend going 100% gluten-free and at a later time, adding spelt back in to see if you notice a change. That would be the only way you would really know the effect gluten and spelt has on your child. GOOD LUCK!

Stacey said...

Debi, Caution Flag & Viv-
If you are all serious about taking it on, I agree. It is a LOT of hard work and it's costly. We went cold turkey and I found that the easiest way. My biggest tips are to first figure out your kids' favourite foods/main food items. Write them out then do your research ahead of time to find their alternative GFCF versions. Look for recipes or GFCF websites that list products you can buy. The kids will most likely go into withdrawal the first few days and it is HELL! but worth it. If you have alternatives on hand, it won't be so difficult.
Great resources:

Great bread mixes:

charrette said...

This is fascinating. I'm tempted to try it on my kids...and myself! :) I tried the candida diet for about six weeks and it was great at home, but very disruptive socially. I felt bad having to grill the wait staff at restaurants with my restrictive questions. And eating in a friend's home was impossible. But this night and day difference you describe is amazing. I am tempted to give it another try.

--Oh, and I'm here via Half Past Kissin' Time.

Nezzy (Cow Patty Surprise) said...

As a retired Special Ed. teacher I have had several autistic blessings over the years. It is amazing what a difference diet can make.

I popped over from Mrs4444's amn really enjoyed my read.

As we say down here in the Ozark hills and hollers, "ya'll have a wonderfully blessed day!!!"

Mike said...

I follow this blog, I don't know if you do or if she follows you, but You might be interested. She is a good woman!

Liz Mays said...

I am so glad that this is working for you. I'm pretty ignorant about the specialized diets but you've really done a great job at explaining it.

Viv said...

Thanks Stacey!

Mrs4444 said...

This was very informative. Thank you!

Courtenagra said...

Ill testify to the changes in the boys...I was there when you started it and my Will actually watched the wiggles...and Ow stop itching...really to me it all comes back to if you're not feeling well physically how are you going to learn and behave? Proud of your boys and all their accomplishments! And you too!

Sarah Andrews said...

I was able to witness the before and after affects of one of my students on the GFCF diet. It was amazing to see the differences in that little boy regarding his behaviour, articulation and rate of speech and language improvements. I always knew whenhe had had pizza at a birthday party because he would have many melt downs following. Kudos to you Stacey. It's not an easy or inexpensive diet to keep up with. Way to go Mama!

Stef said...

My son is autistic and finding food that he can enjoy during the holidays has always been a nightmare. After a recommendation from someone in one of my support groups, I found out about a Nutrition Coach named Rose Cole, I went to her site and found loads of great gluten free recipes. Please make sure to check it out!

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