When my son who was a premie born at 4lbs. weighed in at 200 lbs with abnormal liver, cholesterol and glucose lab tests I knew something had to be dine. The medications he was on caused his craving for carbs. I eliminated all popcorn, crackers, chips, processed and fast foods. It was very difficult the first two weeks. I fed him fresh fruits, vegetables, chicken, fish, occasional beef, cheese,yogurt and other dairy products and eggs. I made sure he had protein at every meal. He had a mid morning and mid afternoon snack consisting of fruits or vegetables. He was allowed one small bowl of low sugar cereal in the morning to satisfy his carb craving along with his fruit and protein. We started this on April 1 and he now weighs 185 lbs. I do allow him to have a treat 2x per week eg ice cream donut, etc. the side benefit to all of this is that I have noticed improved behavior, more alertness, and quicker response time. He still has other issues but maybe over time those will get better too. I’d like him to lose another 10 to 15 lbs. He’s 17 years old and around 5’10” tall so I think that’s a good goal. Maybe their theory is right - the brain is connected to the gut.
Geza - 11 years ago
If you tried the GFCF diet, but it did not seem to help, it does not mean the question can be dismissed.
You definitely should do a urinary peptide test in these cases, too: If it shows that these opiates are there (gluteomorphin, caseomorphin), then you definitely should try to eliminate them. Especially since a study has shown that when these opiates are present, children make a better progress after these are removed through diet than similar children whose diet is not changed. (I couldn't find it right now; please post it if you do.)
In our case, the test (from a French laboratory) showed that there were other opiates, too, with an unknow source. In such cases, I believe you may not see a great immediate improvement because of these. Therefore many believe the main goal should be to heal the gut (there are diets to help that, such as GAPS and SCD diets), although reducing the amount of opiates through ellimination of certain foods may be important, too.
Geza - 11 years ago
When people around you are in doubt if you are crazy for putting your child on a GFCF diet (or even better, the GAPS diet), I suggest you request a "urinary peptides test" (just make an internet search).
It is simple, non-intrusive - except that you need to put your child back on gluten and dairy for a few days before sending the urine to the lab.
This helped in our case: it showed clearly that both wheat and gluten are absorbed partly as opiates, besides other things, and the version we used (from a French laboratory) even showed a number showing the high permeability of our son's gut. This helped to convince all those doubters, and to show that the improvements we saw on a GFCF diet must have real. Another test also showed a lot of food intolerances, due to food leaking through the gut and the immune system (IgG) needing to handle that (not IgE, which would have meant food allergies).
Now we are working to help heal his gut by using the GAPS diet, only excluding dairy. Supplementation is important of course for healthy development, and for calcium, we give him a lot of delicious sesame seeds.
Stacey Auger - 12 years ago
Here we are again! 57% reporting dietary intervention benefits. I am disappointed with the voting option choices. I would have voted : YES - It helped a LOT! It didn't "seem" to help. We had a profoundly changed boy in less than 2 weeks. We saw physical and behavioral changes, as reported by so many other parents. At age 5, he is super healthy, height - weight @ the 80th percentile, athletically gifted and social - social - social! We maintained a clinical level data log for over a year. Removing artificial colors - flavors & GMO foods plays an important role as well. Perhaps the medical community is unable to document changes, but we certainly did. Good luck in finding assistance from nutritionists and dieticians, they are about as autism informed as the average pediatrician..... Dietary intervention and nutritional supplementation is an important and overlooked component of a comprehensive therapeutic program. TACA is a great resource for those interested in exploring dietary changes and outcomes. Visit the website or attend a local support meeting.
In addition to monitoring for behavioral changes with a GFCF diet, you can request a Lactose Breath Test from a G.I. doctor as well as HLA DQ2 and HLA DQ8 genetic testing (blood) for Celiac/Gluten Sensitivity. We found out that our autistic son can't digest milk or and is sensitive to wheat so changing our family's cooking was an easy decision and it has caused better nutrition for the entire family. It is NOT costlier if you cook and batch and freeze cupcakes/treats for parties/school etc.
Mimi - 12 years ago
We learned through an elimination diet that my son reacted to gluten, dairy, corn and nuts. By eliminating these foods we were able to get him off all the behavior meds he had been on for years. Prior to the GFDF etc meal plan, he had frequent outbursts and agression so was difficult to keep safe.
Maintaining the diet is not easy (corn is everywhere) and it is expensive, but we can't put a price tag on the results. It is so worth it. We discovered that two other family members were reactive to gluten and dairy, with one of them also reactive to corn, the other reactive to nuts.
There was an immediate improvement in my son's behavior. He made tremendous progress in school. After several years in a collaborative education program, he is now in his third year of regular high school, almost ready to graduate, even passing the required standarized testing. We're even talking college. Yes, he is a couple of years behind his peers, but he continues to catch up.
Trying GFDF may not work for everyone, but it is worth the try. You must be totally committed because the offending food ingredients are hidden everywhere (who would think that there is wheat in licorice or soy sauce?). Grocery shopping takes extra time because you must stop and read the ingredients, even when you have purchased the product before. You never know when manufacturers will change recipes.
In the 7 or so years we have been gluten and dairy free, we have seen a tremendous increase in the number of GFDF products available. There is even a GF and mostly DF bakery about 20 miles from where we live. Restaurant menus have improved as well.
My recommendation is try it. Worst case senario is it might not work. But if it does work, the possibilities are endless.
You can find foods that will help meet the nutritional needs of your growing child. Rice and soy milks are good alternatives to dairy. They contain similar amounts of calcium and vitamins. Taste and texture can be an issue. We got through the challening time at the beginning because my son loved and was able to tolerate the chocolate varieties. There are GFDF ice "creams" and yogurt. There are GFDF " cheeses" that make great pizzas and mac and cheese. And yes, there are tasty GFDF chicken nuggets. Pasta is also a challenge. Try the many different brands to find the one you like best. Try boiling them as directed. If you don't like the texture, adjust the cooking time.
Don't let the nay sayers, especially the doctors, discourage you just because it has not been proven with scientific studies. Your child is not a science project. They are an individual with individual needs. Remember the old saying 'you are what you eat'? If you can discover what foods are not well tolerated by your child you open a world of possibilites and a better life for all of you. Good Luck in your quest.
Georgia - 12 years ago
People should also be aware that soy substitutes (soy flour, soy milk, soy, etc.) can cause false negatives as to effectiveness of GFCF diets. For some, soy proteins act the same way in the body as gluten & casein & so soy probably should be avoided also.
Deanna - 12 years ago
My daughter is 4 years old, we started the gluten free diet about a year ago and saw significant improvements in social interaction and language!!! She begin to answer questions after just one week. She was already on a casein free diet because of her allergy to milk since she was a newborn. I agree with most of what was said above, try it for a couple of months just to see if it will make a difference. If not, you haven't really lost much. God Bless :)
David - 12 years ago
Interesting blog entry. Glad people continue to look into research to try and understand GCFC dietary changes better and how they work for some and not for others.
Just to comment on AnneG's observation -
"Second, it is almost laughable to hear a professional caution against GFCF on basis of dietary concerns. Don't they realize that most of these kids are extremely self-limiting, eating only chicken nuggets & french fries, etc"
GFCF is a concern for exactly that reason - the kids that are already "extremely self-limiting" in their diets... if you take away gluten and casein options, that may limit their 10 foods that they will eat to only 5.. or less! This why it's suggested that we consult nutritionists or dieticians before making the change - fine to give it a try if it's not prohibitive on family time and energy resources and doesn't put a restrictive eater at further risk for malnutrition.
Tracy Jeter - 12 years ago
I am not even going to get into a long, detailed comment. It isn't necessary. My son is severely autistic and HAD violent meltdowns and would attack people viciously. At the age of 11, we took him to an autism dr who found that we needed to take out dairy, wheat, rice, corn, glueten, soy...and limit sugar big time. we have stuck to this and he has not had any meltdowns or attacked anyone. On 3 occasions he got into something he wasn't suppose to have and went absolutely nuts. There is NO DOUBT whatsoever in my mind that food plays a huge part with autistic kids. my son anyway. And luckily I have no problem getting him to eat only meats and veggies mostly. We found some sweet potato chips that he can tolerate so he does have a snack food. I bet my life and his on diet.
AnneG - 12 years ago
This article raises several concerns. First it again shows reluctance of medical community to listen to parents and BELIEVE them. Second, it is almost laughable to hear a professional caution against GFCF on basis of dietary concerns. Don't they realize that most of these kids are extremely self-limiting, eating only chicken nuggets & french fries, etc. It is also funny to think the replacement of those foods w/ veggies & fruits could be what helPed improve behavior! Most of these kids would have been eating a better diet to begin with if they are eating those items. My hubby & I tried GFCF with intentions to discontinue WHEN we saw no improvements. That was almost 4 years ago! One thing I can say for certain is we never knew the extent of the diet's effects until we'd removed the offending foods for a good while then tried to reitroduce! WOW! everyone should at least give it 2-3 mos try, IMO.
Gina Gabbard - 12 years ago
After a particularly crazy Easter, a family member observed my son was extremely agitated and had huge meltdowns whenever he ate Rainbow Twizzlers. We decided to experiment and see what would happen if we eliminated red dye 40 from his diet. It's harder than it sounds because it's in almost everything! He has a lot less of those completely out of control moments, and we can always tell when something with red dye 40 has slipped past us.
My son was exclusively breastfed and was severely colic and suffered from extreme gas. I had to remove dairy from my own diet in order for him to breastfeed. At 6 months old I began introducing jarred baby foods and that's when the throwing up started. I could never pinpoint which food caused it because it was inconsistent. Sometimes he threw up the pears and oats, and other times pear was fine, while most days he loved the spaghetti or chicken pasta but then sometimes he'd vomit. At one year old I started feeding him dairy because his pediatrician told me most kids outgrow a dairy sensitivity by six months. He refused to drink milk, which was a problem because he stopped nursing on his own at 11 months. So I really pushed the yogurts, cheeses, pediasure drinks, looking back, almost all of his diet was dairy and wheat (butter on toast, cereal, oatmeal, pancakes, waffles, sandwiches, mac n cheese, grilled cheese, pizza, ice cream, yogurt, crackers, pretzels, you know all the kid food. Fruits and vegetables made up a small portion of his diet, and i didn't want him filling up on those low calorie foods when he was throwing up more and more, loosing weight, etc. I wanted him to eat the fatty cheeses on buttery bread. The doctors put him on reflux meds, had an inconclusive upper GI test, and eventually diagnosed his daily vomitting (even after drinking water sometimes he'd puke) to "easy gag reflex" and essentially blamed us, because as parents we must be giving him "attention" for him throwing up. At 2.5 years old what little speech he had was gone, his comprehension was regressing, and he was diagnosed with Autism by a leading neurologist at the Dan Marino children's clinic without ANY diagnositc test performed. Against his advice and insistence that diet wouldn't help, we removed gluten and dairy (we actually did this just prior to this appointment) and the last time our son threw up was the night before we put him on a GF/CF diet. That was 8 months ago now, and after a several other speech, langauge and development therapists performed a half a dozen tests, he is NOT on the spectrum. His speech is still severely delayed, but he's talking again, and his comprehension improved from 67% to 98% since implementing the diet according to the actual placement tests provided through Early Steps that were offered before the diet (and before he started receiving speech therapy) and 6 months later. I am very scared of how many children are being diagnosed with Autism, and being told diet won't help because it hasn't been proven. WE HUMANS, NOT BABY COWS! We cannot thrive on cow breast milk and grazing on grass! We were designed to be hunters and gatherers, surviving on meats, vegetables, fruits, nuts and berries. The American diet is filled with processed, sugary, sodium rich, artifical flavors and colorings, hydrogenated oils, and far, far too much wheat and dairy. It's time to become healthy, our kids are suffering for the poor diets we offer them :(
When my son who was a premie born at 4lbs. weighed in at 200 lbs with abnormal liver, cholesterol and glucose lab tests I knew something had to be dine. The medications he was on caused his craving for carbs. I eliminated all popcorn, crackers, chips, processed and fast foods. It was very difficult the first two weeks. I fed him fresh fruits, vegetables, chicken, fish, occasional beef, cheese,yogurt and other dairy products and eggs. I made sure he had protein at every meal. He had a mid morning and mid afternoon snack consisting of fruits or vegetables. He was allowed one small bowl of low sugar cereal in the morning to satisfy his carb craving along with his fruit and protein. We started this on April 1 and he now weighs 185 lbs. I do allow him to have a treat 2x per week eg ice cream donut, etc. the side benefit to all of this is that I have noticed improved behavior, more alertness, and quicker response time. He still has other issues but maybe over time those will get better too. I’d like him to lose another 10 to 15 lbs. He’s 17 years old and around 5’10” tall so I think that’s a good goal. Maybe their theory is right - the brain is connected to the gut.
If you tried the GFCF diet, but it did not seem to help, it does not mean the question can be dismissed.
You definitely should do a urinary peptide test in these cases, too: If it shows that these opiates are there (gluteomorphin, caseomorphin), then you definitely should try to eliminate them. Especially since a study has shown that when these opiates are present, children make a better progress after these are removed through diet than similar children whose diet is not changed. (I couldn't find it right now; please post it if you do.)
In our case, the test (from a French laboratory) showed that there were other opiates, too, with an unknow source. In such cases, I believe you may not see a great immediate improvement because of these. Therefore many believe the main goal should be to heal the gut (there are diets to help that, such as GAPS and SCD diets), although reducing the amount of opiates through ellimination of certain foods may be important, too.
When people around you are in doubt if you are crazy for putting your child on a GFCF diet (or even better, the GAPS diet), I suggest you request a "urinary peptides test" (just make an internet search).
It is simple, non-intrusive - except that you need to put your child back on gluten and dairy for a few days before sending the urine to the lab.
This helped in our case: it showed clearly that both wheat and gluten are absorbed partly as opiates, besides other things, and the version we used (from a French laboratory) even showed a number showing the high permeability of our son's gut. This helped to convince all those doubters, and to show that the improvements we saw on a GFCF diet must have real. Another test also showed a lot of food intolerances, due to food leaking through the gut and the immune system (IgG) needing to handle that (not IgE, which would have meant food allergies).
Now we are working to help heal his gut by using the GAPS diet, only excluding dairy. Supplementation is important of course for healthy development, and for calcium, we give him a lot of delicious sesame seeds.
Here we are again! 57% reporting dietary intervention benefits. I am disappointed with the voting option choices. I would have voted : YES - It helped a LOT! It didn't "seem" to help. We had a profoundly changed boy in less than 2 weeks. We saw physical and behavioral changes, as reported by so many other parents. At age 5, he is super healthy, height - weight @ the 80th percentile, athletically gifted and social - social - social! We maintained a clinical level data log for over a year. Removing artificial colors - flavors & GMO foods plays an important role as well. Perhaps the medical community is unable to document changes, but we certainly did. Good luck in finding assistance from nutritionists and dieticians, they are about as autism informed as the average pediatrician..... Dietary intervention and nutritional supplementation is an important and overlooked component of a comprehensive therapeutic program. TACA is a great resource for those interested in exploring dietary changes and outcomes. Visit the website or attend a local support meeting.
In addition to monitoring for behavioral changes with a GFCF diet, you can request a Lactose Breath Test from a G.I. doctor as well as HLA DQ2 and HLA DQ8 genetic testing (blood) for Celiac/Gluten Sensitivity. We found out that our autistic son can't digest milk or and is sensitive to wheat so changing our family's cooking was an easy decision and it has caused better nutrition for the entire family. It is NOT costlier if you cook and batch and freeze cupcakes/treats for parties/school etc.
We learned through an elimination diet that my son reacted to gluten, dairy, corn and nuts. By eliminating these foods we were able to get him off all the behavior meds he had been on for years. Prior to the GFDF etc meal plan, he had frequent outbursts and agression so was difficult to keep safe.
Maintaining the diet is not easy (corn is everywhere) and it is expensive, but we can't put a price tag on the results. It is so worth it. We discovered that two other family members were reactive to gluten and dairy, with one of them also reactive to corn, the other reactive to nuts.
There was an immediate improvement in my son's behavior. He made tremendous progress in school. After several years in a collaborative education program, he is now in his third year of regular high school, almost ready to graduate, even passing the required standarized testing. We're even talking college. Yes, he is a couple of years behind his peers, but he continues to catch up.
Trying GFDF may not work for everyone, but it is worth the try. You must be totally committed because the offending food ingredients are hidden everywhere (who would think that there is wheat in licorice or soy sauce?). Grocery shopping takes extra time because you must stop and read the ingredients, even when you have purchased the product before. You never know when manufacturers will change recipes.
In the 7 or so years we have been gluten and dairy free, we have seen a tremendous increase in the number of GFDF products available. There is even a GF and mostly DF bakery about 20 miles from where we live. Restaurant menus have improved as well.
My recommendation is try it. Worst case senario is it might not work. But if it does work, the possibilities are endless.
You can find foods that will help meet the nutritional needs of your growing child. Rice and soy milks are good alternatives to dairy. They contain similar amounts of calcium and vitamins. Taste and texture can be an issue. We got through the challening time at the beginning because my son loved and was able to tolerate the chocolate varieties. There are GFDF ice "creams" and yogurt. There are GFDF " cheeses" that make great pizzas and mac and cheese. And yes, there are tasty GFDF chicken nuggets. Pasta is also a challenge. Try the many different brands to find the one you like best. Try boiling them as directed. If you don't like the texture, adjust the cooking time.
Don't let the nay sayers, especially the doctors, discourage you just because it has not been proven with scientific studies. Your child is not a science project. They are an individual with individual needs. Remember the old saying 'you are what you eat'? If you can discover what foods are not well tolerated by your child you open a world of possibilites and a better life for all of you. Good Luck in your quest.
People should also be aware that soy substitutes (soy flour, soy milk, soy, etc.) can cause false negatives as to effectiveness of GFCF diets. For some, soy proteins act the same way in the body as gluten & casein & so soy probably should be avoided also.
My daughter is 4 years old, we started the gluten free diet about a year ago and saw significant improvements in social interaction and language!!! She begin to answer questions after just one week. She was already on a casein free diet because of her allergy to milk since she was a newborn. I agree with most of what was said above, try it for a couple of months just to see if it will make a difference. If not, you haven't really lost much. God Bless :)
Interesting blog entry. Glad people continue to look into research to try and understand GCFC dietary changes better and how they work for some and not for others.
Just to comment on AnneG's observation -
"Second, it is almost laughable to hear a professional caution against GFCF on basis of dietary concerns. Don't they realize that most of these kids are extremely self-limiting, eating only chicken nuggets & french fries, etc"
GFCF is a concern for exactly that reason - the kids that are already "extremely self-limiting" in their diets... if you take away gluten and casein options, that may limit their 10 foods that they will eat to only 5.. or less! This why it's suggested that we consult nutritionists or dieticians before making the change - fine to give it a try if it's not prohibitive on family time and energy resources and doesn't put a restrictive eater at further risk for malnutrition.
I am not even going to get into a long, detailed comment. It isn't necessary. My son is severely autistic and HAD violent meltdowns and would attack people viciously. At the age of 11, we took him to an autism dr who found that we needed to take out dairy, wheat, rice, corn, glueten, soy...and limit sugar big time. we have stuck to this and he has not had any meltdowns or attacked anyone. On 3 occasions he got into something he wasn't suppose to have and went absolutely nuts. There is NO DOUBT whatsoever in my mind that food plays a huge part with autistic kids. my son anyway. And luckily I have no problem getting him to eat only meats and veggies mostly. We found some sweet potato chips that he can tolerate so he does have a snack food. I bet my life and his on diet.
This article raises several concerns. First it again shows reluctance of medical community to listen to parents and BELIEVE them. Second, it is almost laughable to hear a professional caution against GFCF on basis of dietary concerns. Don't they realize that most of these kids are extremely self-limiting, eating only chicken nuggets & french fries, etc. It is also funny to think the replacement of those foods w/ veggies & fruits could be what helPed improve behavior! Most of these kids would have been eating a better diet to begin with if they are eating those items. My hubby & I tried GFCF with intentions to discontinue WHEN we saw no improvements. That was almost 4 years ago! One thing I can say for certain is we never knew the extent of the diet's effects until we'd removed the offending foods for a good while then tried to reitroduce! WOW! everyone should at least give it 2-3 mos try, IMO.
After a particularly crazy Easter, a family member observed my son was extremely agitated and had huge meltdowns whenever he ate Rainbow Twizzlers. We decided to experiment and see what would happen if we eliminated red dye 40 from his diet. It's harder than it sounds because it's in almost everything! He has a lot less of those completely out of control moments, and we can always tell when something with red dye 40 has slipped past us.
My son was exclusively breastfed and was severely colic and suffered from extreme gas. I had to remove dairy from my own diet in order for him to breastfeed. At 6 months old I began introducing jarred baby foods and that's when the throwing up started. I could never pinpoint which food caused it because it was inconsistent. Sometimes he threw up the pears and oats, and other times pear was fine, while most days he loved the spaghetti or chicken pasta but then sometimes he'd vomit. At one year old I started feeding him dairy because his pediatrician told me most kids outgrow a dairy sensitivity by six months. He refused to drink milk, which was a problem because he stopped nursing on his own at 11 months. So I really pushed the yogurts, cheeses, pediasure drinks, looking back, almost all of his diet was dairy and wheat (butter on toast, cereal, oatmeal, pancakes, waffles, sandwiches, mac n cheese, grilled cheese, pizza, ice cream, yogurt, crackers, pretzels, you know all the kid food. Fruits and vegetables made up a small portion of his diet, and i didn't want him filling up on those low calorie foods when he was throwing up more and more, loosing weight, etc. I wanted him to eat the fatty cheeses on buttery bread. The doctors put him on reflux meds, had an inconclusive upper GI test, and eventually diagnosed his daily vomitting (even after drinking water sometimes he'd puke) to "easy gag reflex" and essentially blamed us, because as parents we must be giving him "attention" for him throwing up. At 2.5 years old what little speech he had was gone, his comprehension was regressing, and he was diagnosed with Autism by a leading neurologist at the Dan Marino children's clinic without ANY diagnositc test performed. Against his advice and insistence that diet wouldn't help, we removed gluten and dairy (we actually did this just prior to this appointment) and the last time our son threw up was the night before we put him on a GF/CF diet. That was 8 months ago now, and after a several other speech, langauge and development therapists performed a half a dozen tests, he is NOT on the spectrum. His speech is still severely delayed, but he's talking again, and his comprehension improved from 67% to 98% since implementing the diet according to the actual placement tests provided through Early Steps that were offered before the diet (and before he started receiving speech therapy) and 6 months later. I am very scared of how many children are being diagnosed with Autism, and being told diet won't help because it hasn't been proven. WE HUMANS, NOT BABY COWS! We cannot thrive on cow breast milk and grazing on grass! We were designed to be hunters and gatherers, surviving on meats, vegetables, fruits, nuts and berries. The American diet is filled with processed, sugary, sodium rich, artifical flavors and colorings, hydrogenated oils, and far, far too much wheat and dairy. It's time to become healthy, our kids are suffering for the poor diets we offer them :(