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This is Day 22 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up. Click here to see all the posts in this series.
Elimination diets can be overwhelming. How do you choose which one? There are soooooooooooo many. Over the years (even before we had kids) I had played with the idea of doing an elimination diet. But it wasn’t until Mr Rockstar’s psychiatrist mentioned it a few months ago that I seriously looked into it. His psychiatric specifically mentioned gluten free and casein free. He gave me a handout by Dr Doris Rapp on how to do an elimination diet. The handout mentioned elimination diets other than just gluten and casein so I checked out Dr Doris Rapp’s book Is This Your Child? from the library.
Dr Rapp has a multitude of childhood ailments including hyperactivity that she believes may be linked too or exacerbated by the child’s diet. Based on your child’s complaints she has different suggestions on what to exclude. For hyperactivity she recommends eliminating artificial color, artificial preservatives, sugar (cane or beet), milk, corn, cocoa, wheat, grains, egg, apples/juice, grapes/juice, peanut, peanut butter, tomato, banana, orange, and yeast.
Besides looking at her book I also did some online research. Of the various controlled scientific studies done with children and elimination diet for ADHD the foods typically excluded are dairy, wheat, corn, yeast, soy, citrus, egg, chocolate, peanuts, and all artificial ingredients.
The original pioneer in this field, Dr Feingold, recommended eliminating high salicylate foods along with all artificial ingredients.
If you want to read more about the data supporting these different claims go here to read my post “Give Me The Data”. There is strong scientific data that artificial food colors (AFC) and preservatives have a negative effect on a significant portion of the population, not just children with ADHD. The average dose children are getting on a daily basis has gone up dramatically over the last 30 years. The ironic thing about AFC is “The average effect on children’s behavior (of artificial food colors and preservatives) was distinctly larger than the more widely recognized effect of typical lead exposures on children’s cognition,” says Schab in an article called “Connecting ADHD and Nutrition”. So here we are as parents going into complete panic mode that one of our child’s toys made in China might have lead in it while simultaneously handing our children another gogurt or gatorade packed with AFCs. According to the data the AFC in the food we routinely give our children is much worse for them than the negative side effects of growing up in a house with lead paint (this analogy isn’t to make light of lead exposure but rather to ask why we aren’t irate as parents that AFC is still in our foods.). Yikes!
All the controlled studies indicate that if your child is seriously affected by artificial food color/preservatives they likely have problems with one or more other food groups.
Our Elimination Diet (Round 1)
After reading all this I tried to combine all these findings and came up with an elimination diet for No Casein, Chocolate, Citrus, Corn, Egg, Gluten, High Salicylate Food, Peanut, Soy, Sugar, Yeast, Artificial Food Color, and Artificial Preservatives. Later I also added Legumes to this list. My goal was 2 weeks for the diet. According to Dr Rapp within a week most people see results. If within two weeks you still aren’t seeing results, she said it is unlikely the diet will help.
After 9 days of doing No Casein, Chocolate, Citrus, Corn, Egg, Gluten, High Salicylate Food, Peanut, Soy, Sugar, Yeast, Artificial Food Color, and Artificial Preservatives, Mr Rockstar’s behavior just kept getting worse! At first I thought maybe it was just a withdrawal effect but then I started panicking that maybe Legumes were the problem since we had greatly increased our bean consumption. So on day 9 we added back in salicylate foods and took out legumes. Unfortunately this didn’t help either. After 2 weeks we started adding foods back in every other day or so. After 3 weeks we just stopped the diet mostly because of the lack of results plus we were waiting to get Mr Rockstar allergy tested.
Things I wish I Knew Before Our Elimination Diet
The kids probably shouldn’t be on caffeine anyway lol. But if you are planning to give up caffeine as part of doing the diet with your family don’t do it! Seriously you don’t need to be missing your morning coffee at the same time the kids are screaming bloody murder that all the peanut butter and bread has disappeared from the house. Trust me I learned this one the hard way LOL. At least wait a few days until the kids settle down to the new diet before trying to kick the caffeine habit.
Before starting your diet gather some baseline data on your child. Whatever the problem areas are monitor those. For Mr Rockstar aggression is one of the biggest problems so it is pretty easy to record number of aggressive/destructive outbursts he has a day. Read more about making data collection easy here.
We started the diet when we did because Mr Rockstar was really unstable and I was desperate. I was willing to try anything. On retrospection this was a bad idea. His medication got switched right as we were starting the diet and again shortly after we finished the diet. Since he wasn’t stable it is hard to say if the results of the diet were due to medication changes or diet.
Get Allergy Tested
One of the reasons we stopped the diet is we were planning to get Mr Rockstar allergy tested. After starting the diet I was encouraged by a number of friends to get Mr Rockstar allergy tested even though he only has minor symptoms of allergies. Read here all about our experience with allergy testing. It turns out he was allergic to spinach and mildly allergic to peaches. Crazy right?!? He was also mildly allergic to Cats, Timothy Grass, Birchwood, and Pigweed. I recently learned there is a condition called oral allergy syndrome. With this syndrome some people that are allergic to grass, trees, or ragweed might also have a reaction to some common fruits and vegetables but it not show up in their allergy testing. Read more here. If I had known about Mr Rockstar’s allergies we would have planned the diet differently. We just recently started excluding spinach and peaches from our diet and I want to do an elimination diet to test if Mr Rockstar has oral allergy syndrome as well at some point in the future.
Pick a Diet
Once we started our elimination diet all my friends started pointing out all the various types of elimination diets out there. I originally decided to combine two diets (avoid the major allergy/intolerance foods recommended by the scientific studies and Dr Rapp + avoid high salicylate foods). This was a big mistake because is was so hard to find something we could eat! Plus friends were pointing things out like the Gaps diet, anti-hyperglycemia diet, etc. I think it is best to pick a diet, stick with it for 2-6 weeks, if it doesn’t work take a break and then try another one. This is our plan moving forward. I thought it might be helpful to list all the diets I am aware of that claim to help with Autism/ADHD, etc:
1. Specific Allergy (plus oral allergy syndrome) Diet
Get your child allergy tested. Mr Rockstar’s allergies were very minor but his allergy to spinach for example is probably enough to cause him a slight runny nose and some other minor irritations. Of course spinach is one of the ingredients in the multi vitamins I switched Mr Rockstar to a couple months ago (right as his behavior started really tanking ….maybe more than coincidence?) in order to avoid all artificial food colors. When you are dealing with a kid who has major meltdowns over a few drops of water on his clothes or the seam in his socks not being aligned perfectly across his toes, I would believe that a minor food allergy could be quite distracting and reduce his elasticity to handle various situations. After getting your child allergy tested see what if any of their environmental allergies could be causing oral allergy syndrome. These foods might not show up as positive on their allergy testing but could be causing itchiness in their mouth and bothering them. Try eliminating the foods they are allergic to plus possible oral allergy syndrome foods for a month and see if it helps.
2. Real Food – No Artificial ANYTHING
The strongest data available linking children’s behavior to food is artificial food colors and preservatives. After allergy testing a good first step would be to eliminate these. I LOVE www.100daysofrealfood.com. You could take her 10 day challenge and see if this helps. Read all about it here. If you follow the rules strictly you will also find yourself naturally lowering the sugar of your diet (maple syrup and honey are WAY more expensive than white sugar which helps you reduce your sugar intake lol) plus increasing your overall digestive health because of the increased fiber in your diet.
3. Gluten Free/Casein Free
The diet Mr Rockstar’s doctor initially suggested was gluten free/casein free diet. I know a number of people who say it helped and a number who say it did nothing for them. It seems like it would be worth a try. These were a couple books recommended to me:
I read just yesterday (but now I can’t find the reference? help!) that eliminating casein (essentially dairy) for two weeks is adequate but you need to eliminate gluten for 4-6 weeks to really see the effect. If this is true then in our Elimination Diet Round 1, we did meet the 2 weeks for dairy but not the 4 weeks for gluten.
4. Low Salicylate Diet
In the 1970s Dr Feingold was one of the first people to notice a link between artificial colors and preservatives and behavioral issues in children. He believed that salicylic acid might be problematic for these kids as well. Salicylic acid is found in aspirin but it is also found in many fruits and vegetables. The riper the fruit the less salicylates are in it. It has been proposed that as there is a greater push to bring fresh produce to far away markets, produce is being picked earlier and earlier so the salicylate content of our diets has gone up over the years. Sue Dengate is one of the modern proponents of the low salicylate diet. She has a book entitled Fed Up as well as a website called www.failsafediet.com.
In an interview published in nourished magazine with Sue Dengate she says:
“Of the approximately 400 additives permitted in our foods, any or all of the following can be associated with behavioural problems: artificial colours, one natural colour (annatto 160b), preservatives (sorbates, benzoates, sulphites, nitrates, nitrites, propionates), antioxidants (gallates, TBHQ, BHA, BHT) and the 600 number flavour enhancers. As well there are thousands of flavour additives that can cause problems. There are also naturally occurring food chemicals such as salicylates that can contribute to behavioural disorders, depending on individual sensitivity.”
” It is generally well understood that some people will have problems with dairy foods or wheat or gluten. However, many people are unaware that natural chemicals called salicylates can cause the same problems as additives if consumed in large doses or by sensitive people. These natural food chemicals are increasing in our food supply due to added flavours, concentrated natural chemicals in processed foods such as tomato sauce, and increased availability of out-of-season fruit and vegetables. Foods high in salicylates include strong fruit and mint flavours, berries, citrus, kiwifruit, avocadoes, sultanas and other dried fruits, pineapple, broccoli, pizza toppings and spicy foods. Another set of natural chemicals that can cause problems are the biogenic amines in foods such as cheese, chocolate, canned fish and processed meats.”
“Contrary to what most people believe, refined sugar has been found not to cause children’s behaviour problems. When parents think their children are affected by sugar, the reactions are almost certainly due to additives or salicylates. Honey and raw sugar contain salicylates, refined white sugar does not. However, sugar can contribute to tooth decay and obesity so consumption should be limited.”
After trying a diet free of all artificial ingredients plus a gluten free/casein free diet, the next step would probably be to avoid foods high in salicylates. If you find a benefit to eliminating AFC, gluten, or casein then continue to eliminate those food items but also try eliminating high salicylates for a few weeks. A friend with a daughter sensitive to salicylates told me that it can take a while for them to get out of your system plus once you reintroduce them it can take a while for them to build back up to problematic levels. If this is true we probably didn’t eliminate salicylates for long enough in our Elimination Diet Round 1.
5. All Major Allergies/Intolerance Foods
It really was too much to eliminate high salicylate foods plus Casein, Chocolate, Citrus, Corn, Egg, Gluten, Legumes (including Peanuts), Soy & Yeast. Depending on your child’s response to the low salicylate diet the next step would be to try a few weeks of eliminating these foods (Casein, Chocolate, Citrus, Corn, Egg, Gluten, Legumes (including Peanuts), Soy & Yeast) but I wouldn’t try to do them both at the same time! While your child might not have an allergy to these foods these foods are the most common for people to have an intolerance.
What is a food intolerance? I don’t know about you but there are certain foods (usually sweet carbohydrates) that shortly after I eat I get a headache and just feel awful. I didn’t realize how awesome I felt on our elimination diet until a few weeks after finishing it and being back to my old habits of eating (I think it is the yeast but I need to do more testing). From a child’s perspective if there is a food giving them a headache, for example, they won’t be able to verbalize the problem and it could fuel behavioral issues. When Mr Rockstar has a small cold his behavior tanks plus he loses almost all social skills and communication. A food intolerance would most likely have a similar effect.
Obviously if you are starting this diet and you have already tested gluten, dairy (casein), & salicylates you adjust the diet depending on what you have learned. If your child had a problem with gluten, dairy, and salicylates you might have to break this diet down into smaller steps. For recipe ideas check out my recipe page plus check out this meal plan for the first week (Casein, Chocolate, Citrus, Corn, Egg, Gluten, Legumes (including Peanuts), Low Salicylate, Soy & Yeast). The only recipes I include on my website are ones the whole family enjoyed and we wouldn’t be embarrassed to serve guests. Any flops (which there were plenty trying to do gluten free, egg free, dairy free, and sugar free cooking) aren’t posted. 🙂
5. Gaps/Specific Carbohydrate Diet
Another suggestion sent my way by friends was the Gaps or Specific Carbohydrate Diet. Here is a nice article explaining the difference between GAPS and SCD written by www.kitchenstewardship.com. They are very similar so you could probably just pick one to test.
The theory behind GAPS diet and autism is that over the last few decades we have killed off necessary, friendly bacteria in our bodies by over-use of antibiotics, pesticides, etc. This diet is supposed to help regain gut health and proponents claim that there is evidence that not only does this improve our digestive health but also has a psychological benefit. If a child has poor gut health I can see, in theory, how that could spill over into other areas of their life including personality and behavior.
Dr Campbell-McBride wrote the book Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia.
Here is an interview of Dr. Campbell-McBride by Dr. Joseph Mercola:
I know I have a number of friends who say this diet has helped their family. Personally we haven’t tried it yet and I need to do more research. It is quite different from the other diets so far. Again, if your child showed a reaction to gluten, casein, salicylates, corn, soy, etc I would continue to avoid any of those problem foods even when trying this diet.
6. Anti-Yeast Diet
If you do the Gaps diet I think(?) you will rule out yeast but you could do a separate anti-yeast diet. In this diet you “eliminate fruit, added sugar, most starchy vegetables, caffeine and anything with a high Glycemic Load”. Read here for more info.
7. Anti-Hyperglycemia Diet
Again, in many ways I think some of the other diets would also cover hyperglycemia. You might have to test it separately in any case to see what the total effect of high glycemic food have on your child.
In the book Parenting Children with ADHD: 10 Lessons That Medicine Cannot Teach (APA Lifetools) the author points out if you are fueling your ADHD kids up on sugar and carbs you are probably setting them up for a crash later. While the sugar might not make them hyper per se it doesn’t lend itself to a steady energy level throughout the day. A high protein low sugar diet on the other hand would help them maintain a more even energy level through the day plus feel full longer. One behavioral therapist that spoke to my MOPS group believed strongly that this can have a big impact on ADHD kids.
On the flip-side I have also read some kids have behavioral problems when they have low blood sugar. I think the main idea behind this diet is to help them maintain a study blood sugar level versus causing sugar spikes with their diet.
8. Oligoantigenic (Few Foods) Diet
One radical option is to try a oligoantigenic diet for 3 to 4 weeks. Typically this diet is limited to 2 meats (lamb and chicken), 2 carbohydrate sources (potatoes and rice), 2 fruits (bananas and apples), vegetables, and water (with calcium and vitamin supplementation). This diet has been tempting for me to try. Doesn’t it seem like it would answer a lot of questions? Surely it would avoid virtually all food intolerances, yeast, and high salicylates. The only problem is it sounds so painful! I wish they would provide a recipe plan in the studies that used this diet! This diet reported a 71% positive response rate in unmedicated ADHD kids. Of course when you are done you have no idea what the problem foods are but at least you have an idea how effective dietary changes might be in reducing autistic/ADHD/SPD symptoms in your child. Do you have any recipe suggestions?
9. Low Oxalate Diet
The book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders has been recommended to me by a number of friends. I have it on hold at the library so I will have to give you a full book review later.
While I was waiting to get a copy I did some research online to see what the book was all about. There is a lot more in it than just diet. Looking at just diet www.itchylittleworld.com‘s review of this book says: “According to the book, the diets most beneficial for children with autism, ADHD, asthma, or allergies are:
- Gluten-Free, Casein-Free Diet (Dr. Bock has seen a 60% improvement in autistic symptoms with children on this diet. He also finds it very helpful for those with ADHD and asthma. He generally recommends this diet for all children with autism, ADHD, allergies, and asthma)
- Specific Food Reaction Diet (eliminating any known food allergies or sensitivities)
- Anti-Yeast Diet
- Anti-Hyperglycemia Diet (eliminating sweet, sugary foods and high-starch foods)
- Specific Carbohydrate Diet
- Low Oxalate Diet“
All of these had been suggested to us before except Low Oxalate Diet. That was a new one for me. When I looked it up I found a low oxalate diet is recommended to people who suffer from kidney stones. “Foods especially high in oxalates include spinach, beets, chocolate, peanuts, wheat bran, tea, cashews, pecans, almonds, berries, and many others. Oxalates are not found in meat or fish at significant concentrations.” www.greatplainslaboratory.com Again the foods recommended to avoid are quite different than some of the other diets.
According to www.westonprice.org: “It was Owens who collected the data showing that many autistic children had frequent urination of small volume and found that the phenomenon was associated with oxalates. She also found that these children often manifested gastro-intestinal symptoms such as diarrhea and stomach pain. They may also have pain in the urinary tract. That pain is relieved when a low oxalate diet is instituted. Owens also found that children had improved cognitive, academic and motor skills once the amount of oxalates in their diets was sharply reduced. The same dietary measures helped reduce pain in their muscles and feet, and also brought about a reduction in abnormal behavior and self-abuse as well.”
This diet sounds like it might be worth a try (sooner rather than later) if your child experiences frequent urination among other symptoms. This isn’t a problem with Mr Rockstar (actually it was almost impossible to potty train him because even at age 2 he only would pee 2-3 times a day) so it is pretty far down on my list to try.
Some of these diets have decent data that shows children suffering from ADHD, Autism, etc have benefited. Many of them have anecdotal evidence. For some of these maybe the study just hasn’t been done yet or maybe it is just people grasping at straws. Each human is so complex I am pretty sure there is no one diet that will help all autistic kids or all ADHD kids. If there was it would have been figured out by now. Given that there is some evidence that changing your child’s diet might help I am willing to give it a shot. Mr Rockstar is only 6 after all so we have a few years left to experiment!
One note of warning (as if this weren’t complicated enough?!?): children develop in leaps and bounds. You may see no progress for a while and then suddenly they reach a whole new level of development over night. It is possible while on an elimination diet your child reaches a new level of development (maybe the stress of the diet actually triggers it) but it might not actually have anything to do with the food they are eating (or not eating). So if you think eliminating a certain food has helped it is really important to do a couple challenges with that food (as long as there is no concern of severe allergic reactions). Make sure it is the diet that changed the kid and not that the kid just happened to change while on the diet!
When we did our first elimination diet, just doing a different diet changed the status quo in our home. It forced me to be firm as a parent on at least one thing even if my children were begging, whining, pitching the biggest fit, etc. So if nothing else I saw a boost in their acceptance that I was in charge as the parent and not them. It also helped them gain an awareness of “healthy” vs “unhealthy” food.
Right now we are eliminating spinach and peaches from our diet based on Mr Rockstar’s allergy tests. I want to expand this to include possible oral allergy syndrome foods (a number of fruits and vegetables). Then the plan moving forward is to keep working down the list of popular elimination diets one at a time.