Children on the spectrum are like snowflakes. No two are exactly alike. It is what makes diagnosis and treatment of these children so challenging. I read an interesting line somewhere that talked about a theory that Autism spectrum disorders may be the perfect biochemical storm with the last wave hitting the brain. This would be in opposition to the theory that it is a purely neurological disorder. This would fit with the snowflake analogy because no two children would be missing the exactly the same bits of biochemistry. I have actually witnessed this in my own children. Dr. Hoffman did extensive testing on both my sons revealing a whole list of biochemical anomolies. When the testing came back, he sat with me and pretty much told me who my children were and what symptoms they would likely be having based on what they were missing. It was stunning how correct he was.
At the end of October our family went completely gluten-free, casein free, sugar and caffeine free. You would be amazed at exactly what items we consume on a daily basis that contain these ingredients. We started to read every label. We learned that almost all processed food that is thickened in any way including soups, salad dressings, spice mixes all have some form of gluten in them. Ketchup and BBQ sauce, as well as soy sauce, worchestershire, all full of gluten. There are many foods now where companies are switching to cornstarch and that we were able to have. We started to shop at Planet Organic and Ed's Gluten Free Specialty store. Both have a fantastic variety of gluten, casein free foods. Ed's is on 93 st and 34Ave and he is an amazing resource as he is highly allergic to both. He gave us a full tour of everything in the store being careful to point out what was just gluten free and what was free of both. They have gluten free ketchup, BBQ sauce, soy sauce, taco seasoning, chili seasoning as well as spices. He even carried my groceries to my car! Now that's customer service! We switched to rice and corn pastas which are really very tasty, and rice wraps and corn tortillas. I had the opportunity to see Temple Grandin speak when she was here in person and she suggested that Mexican food is an easy and inexpensive way to pursue this diet with kids, just skip the cheese on their quesadillas!
We shop now around the outside of the store and skip the interior processed food. A sample of our daily diet would be as follows:
Breakfast : eggs ( a protein source is very important in the morning) , Mitch prefers Chicken breakfast sausages from Safeway as he doesn't like eggs , gluten free pancakes (kinnickkinnick) ,Agave
syrup which is low glycemic index) or brown rice bread with sugar free jam
Lunch: lunches are a bit more challenging as we aren't allowed sandwich meats as they have too many chemicals and preservatives in them. Lunches are usually leftovers from a past nights dinner, for
example, a piece of meat, chicken or fish, some rice, pasta or quinoa, and a vegetable. They take fruit that is low glycemic index ( no tropicals) a bag of peas or carrots, a water and sometimes
gluten free pretzels or nuts
Dinner: fairly standard again, a protein, rice or rice/ corn pasta or quinoa, a green leafy salad with other
vegetables thrown in and either raw or cooked vegetables. The kids prefer raw.
After school snacks consist of either fruit or some raw veggies or rice/ corn chips. Be careful of chips, not all flavors of potatoe chips are equal. Some have gluten in the flavoring.
In December all of our test results came back and Dr. Hoffman eliminated another layer of foods that came up reactive for the kids. This round removed all of the night shade plants ( potatoes, tomatoes, peppers and eggplant) as well as a number of other foods.
I would like to give some of the background of why these foods in particular are eliminated as part of the biomedical treatment of Autism and ADD. The theory is all around inflammation. As those of us with these children know digestion is always a big issue. Chronic diarrehea and constipation are an ongoing problem. Children with inflammed digestive systems end up with leaky gut walls. Things that are not supposed to escape the intestine slip out and end up in their blood stream. Children missing biochemistry like digestive enzymes to break down things like gluten (wheat products) and casein (milk proteins and milk products including cheese, yogurt and butter) end up incompletely digesting these items. Instead of breaking them down into single building block proteins like the rest of us, they can only partially digest them. These partially digested proteins then slip out of the gut wall and up mimicking morphine derivatives in the brain. In short our kids can act a bit stoned or foggy. They perform repetitive behaviors or spin or self stimulate in a variety of ways for hours. This was facinating to me, as my mom had given me Dr Oz's book "You on a Diet". We were both reading it about the same time as we were going through all of this with the kids. My mom was reading it because she suffers from arthritis in her knees and her doctor kept talking about inflammation. She wondered, is that inflammation hereditary? Where does it come from? Do we have any control over it? The book said a huge percentage of inflammation comes from the type of foods we consume. One of the worst cuplrits is high fructose corn syrup. Guess what is in almost everything we eat that is sweetened these days?
This also causes our gut to be inflammed and leaky and when that happens, all sorts of things get out that are not supposed to. During one of our meetings with Dr. Hoffman, I asked him what my mom should do for her arthritis. He said, same thing your kids are doing, only no grains at all, no caseins and no nightshades as they are very inflammatory for arthritis pain. He also suggested she take Kurcumin ( tumeric) tablets. They supposedly really help. Did I not mention how all of the things in my life were starting to funnel into one picture?
Autism spectrum kids do not have the same mechanism of damage as someone with Celiac Disease. In Celiac disease, the little folds in the intestine are actually damaged by the gluten and these folks have pain and digestive issues that are a bit different. Our kids don't have any pain persay other than constipation and diarehhea, and they are often carbohydrate or milk product junkies. My youngest son ate little else. These foods give them a high or a hit. We also had all the issues with texture and consistency that are so often a problem with Autism. He was a very picky eater. My biggest concern about starting this diet was that he would starve to death!
We chose to do this as an entire family for one reason. My kids are old enough to help themselves, and I couldn't see testing their resolve by having tempting food in the house. My partner who is Libyan, ( think bread and pasta culture) has been a great support choking down all manner of alternative foods to replace all his favorites! Interestingly enough, the first week was the toughest, and then slowly when everyone was hungry enough, the salad started disappearing at dinner. The plates were cleaned. The fruit bowl was empty.
Our teachers, whom we had notified of the change so they could support health choices at school started calling asking who these kids were and what we had done with the old ones.
My oldest son woke up. The fog was gone. The difficulty in concentrating replaced with normal teenage distractions. Honour roll marks showed up for the first time in our academic history. Wow was the comment from all of our family and friends.
My youngest's progress was a bit less tangible. He did lose some weight and he is already very thin. His mood and sense of humour though improved dramatically. He became the joke guy at the table for meals. His smile came back. He was a bit frustrated though, as for him the changes were not as dramatic as they were for his brother, but he had still given up all of his favorite foods.
The test results revealed that he had some other issues going on in his stomach that his brother didn't have. Dr. Hoffman assured us that once we supplemented the biochemistry and corrected his stomach flora that he would see more of a difference. We began a regimen in January of about 40 pills a day. Twenty with breakfast and about the same with dinner. The kids were amazing. I gag on pills and each day I watch them dutifully choking back all these tiny pills. He was right. He has gained 8 pounds and is looking healthier each day. Both boys are thriving. The difference makes me want to cry with relief. I think about what might have happened if Carol hadn't set me on this path and I say a quiet prayer of thanks to the forces of the Universe that guide our lives. Faith has been my constant companion on this journey. It is to that I have pinned all my hopes.
To date we are still on a very restricted diet, and continuing with the supplementation. We get some of the testing repeated in April to see where we are in terms of having to continue supplementing their biochemistry.
Dr. Hoffman is hopeful that at that point the inflammation will have decrease to the point where we can remove some of the pills. From the initial test results I doubt either of my kids will ever be able to eat gluten or casein again, however some of the other foods may be added back if they do not trigger any reactions.
It has been a long road, but one that I would seriously suggest you try if you have any inclination. We were told not to bother, that it wasn't mainstream. It certainly was a different story for us.
If I can do anything to answer any questions, please feel free to post and I will do my best to find answers or offer suggestions. My hope is that in sharing our journey, if this helps even one family not to feel so alone in the dark, that my prayers will have been answered. So much of this has been learned by trial and error that if I can spare anyone that process, the journey will have been well worth it. It already has been for my family.
In love and light,
Kathryn
At the end of October our family went completely gluten-free, casein free, sugar and caffeine free. You would be amazed at exactly what items we consume on a daily basis that contain these ingredients. We started to read every label. We learned that almost all processed food that is thickened in any way including soups, salad dressings, spice mixes all have some form of gluten in them. Ketchup and BBQ sauce, as well as soy sauce, worchestershire, all full of gluten. There are many foods now where companies are switching to cornstarch and that we were able to have. We started to shop at Planet Organic and Ed's Gluten Free Specialty store. Both have a fantastic variety of gluten, casein free foods. Ed's is on 93 st and 34Ave and he is an amazing resource as he is highly allergic to both. He gave us a full tour of everything in the store being careful to point out what was just gluten free and what was free of both. They have gluten free ketchup, BBQ sauce, soy sauce, taco seasoning, chili seasoning as well as spices. He even carried my groceries to my car! Now that's customer service! We switched to rice and corn pastas which are really very tasty, and rice wraps and corn tortillas. I had the opportunity to see Temple Grandin speak when she was here in person and she suggested that Mexican food is an easy and inexpensive way to pursue this diet with kids, just skip the cheese on their quesadillas!
We shop now around the outside of the store and skip the interior processed food. A sample of our daily diet would be as follows:
Breakfast : eggs ( a protein source is very important in the morning) , Mitch prefers Chicken breakfast sausages from Safeway as he doesn't like eggs , gluten free pancakes (kinnickkinnick) ,Agave
syrup which is low glycemic index) or brown rice bread with sugar free jam
Lunch: lunches are a bit more challenging as we aren't allowed sandwich meats as they have too many chemicals and preservatives in them. Lunches are usually leftovers from a past nights dinner, for
example, a piece of meat, chicken or fish, some rice, pasta or quinoa, and a vegetable. They take fruit that is low glycemic index ( no tropicals) a bag of peas or carrots, a water and sometimes
gluten free pretzels or nuts
Dinner: fairly standard again, a protein, rice or rice/ corn pasta or quinoa, a green leafy salad with other
vegetables thrown in and either raw or cooked vegetables. The kids prefer raw.
After school snacks consist of either fruit or some raw veggies or rice/ corn chips. Be careful of chips, not all flavors of potatoe chips are equal. Some have gluten in the flavoring.
In December all of our test results came back and Dr. Hoffman eliminated another layer of foods that came up reactive for the kids. This round removed all of the night shade plants ( potatoes, tomatoes, peppers and eggplant) as well as a number of other foods.
I would like to give some of the background of why these foods in particular are eliminated as part of the biomedical treatment of Autism and ADD. The theory is all around inflammation. As those of us with these children know digestion is always a big issue. Chronic diarrehea and constipation are an ongoing problem. Children with inflammed digestive systems end up with leaky gut walls. Things that are not supposed to escape the intestine slip out and end up in their blood stream. Children missing biochemistry like digestive enzymes to break down things like gluten (wheat products) and casein (milk proteins and milk products including cheese, yogurt and butter) end up incompletely digesting these items. Instead of breaking them down into single building block proteins like the rest of us, they can only partially digest them. These partially digested proteins then slip out of the gut wall and up mimicking morphine derivatives in the brain. In short our kids can act a bit stoned or foggy. They perform repetitive behaviors or spin or self stimulate in a variety of ways for hours. This was facinating to me, as my mom had given me Dr Oz's book "You on a Diet". We were both reading it about the same time as we were going through all of this with the kids. My mom was reading it because she suffers from arthritis in her knees and her doctor kept talking about inflammation. She wondered, is that inflammation hereditary? Where does it come from? Do we have any control over it? The book said a huge percentage of inflammation comes from the type of foods we consume. One of the worst cuplrits is high fructose corn syrup. Guess what is in almost everything we eat that is sweetened these days?
This also causes our gut to be inflammed and leaky and when that happens, all sorts of things get out that are not supposed to. During one of our meetings with Dr. Hoffman, I asked him what my mom should do for her arthritis. He said, same thing your kids are doing, only no grains at all, no caseins and no nightshades as they are very inflammatory for arthritis pain. He also suggested she take Kurcumin ( tumeric) tablets. They supposedly really help. Did I not mention how all of the things in my life were starting to funnel into one picture?
Autism spectrum kids do not have the same mechanism of damage as someone with Celiac Disease. In Celiac disease, the little folds in the intestine are actually damaged by the gluten and these folks have pain and digestive issues that are a bit different. Our kids don't have any pain persay other than constipation and diarehhea, and they are often carbohydrate or milk product junkies. My youngest son ate little else. These foods give them a high or a hit. We also had all the issues with texture and consistency that are so often a problem with Autism. He was a very picky eater. My biggest concern about starting this diet was that he would starve to death!
We chose to do this as an entire family for one reason. My kids are old enough to help themselves, and I couldn't see testing their resolve by having tempting food in the house. My partner who is Libyan, ( think bread and pasta culture) has been a great support choking down all manner of alternative foods to replace all his favorites! Interestingly enough, the first week was the toughest, and then slowly when everyone was hungry enough, the salad started disappearing at dinner. The plates were cleaned. The fruit bowl was empty.
Our teachers, whom we had notified of the change so they could support health choices at school started calling asking who these kids were and what we had done with the old ones.
My oldest son woke up. The fog was gone. The difficulty in concentrating replaced with normal teenage distractions. Honour roll marks showed up for the first time in our academic history. Wow was the comment from all of our family and friends.
My youngest's progress was a bit less tangible. He did lose some weight and he is already very thin. His mood and sense of humour though improved dramatically. He became the joke guy at the table for meals. His smile came back. He was a bit frustrated though, as for him the changes were not as dramatic as they were for his brother, but he had still given up all of his favorite foods.
The test results revealed that he had some other issues going on in his stomach that his brother didn't have. Dr. Hoffman assured us that once we supplemented the biochemistry and corrected his stomach flora that he would see more of a difference. We began a regimen in January of about 40 pills a day. Twenty with breakfast and about the same with dinner. The kids were amazing. I gag on pills and each day I watch them dutifully choking back all these tiny pills. He was right. He has gained 8 pounds and is looking healthier each day. Both boys are thriving. The difference makes me want to cry with relief. I think about what might have happened if Carol hadn't set me on this path and I say a quiet prayer of thanks to the forces of the Universe that guide our lives. Faith has been my constant companion on this journey. It is to that I have pinned all my hopes.
To date we are still on a very restricted diet, and continuing with the supplementation. We get some of the testing repeated in April to see where we are in terms of having to continue supplementing their biochemistry.
Dr. Hoffman is hopeful that at that point the inflammation will have decrease to the point where we can remove some of the pills. From the initial test results I doubt either of my kids will ever be able to eat gluten or casein again, however some of the other foods may be added back if they do not trigger any reactions.
It has been a long road, but one that I would seriously suggest you try if you have any inclination. We were told not to bother, that it wasn't mainstream. It certainly was a different story for us.
If I can do anything to answer any questions, please feel free to post and I will do my best to find answers or offer suggestions. My hope is that in sharing our journey, if this helps even one family not to feel so alone in the dark, that my prayers will have been answered. So much of this has been learned by trial and error that if I can spare anyone that process, the journey will have been well worth it. It already has been for my family.
In love and light,
Kathryn
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