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CHAPTER 12
Zachary’s Foods/Diet
It was important to remember that as a parent, I had to adopt a new “view” when it came to food for Zachary. For him, food was no longer a way for Zachary to get nutrients, but rather a way to get calories. The “nutrients” he pretty well got from his supplements.
It was critical to note that I pretty well tried to eliminate all artificial colors and flavorings from Zachary’s diet. If something was not mentioned in this book, he did not eat it. That went for everything from drinks, to foods, to snacks! His foods were either included specifically in this chapter, or they were “included” within the product lines provided by Gluten Solutions, Inc., a provider of “gluten free” and “casein free” foods.
Gluten Solutions, Inc. provided up to three hundred various gluten free foods....I had only found this company in the last ten months or so. I knew exactly what was in their products as well as what was not as their catalog clearly indicated the list of included ingredients as well as those “not included” and thus, I could easily tell what was gluten and casein free and low in phenols and what was not.
With Zachary, I found the best practice was to assume there was gluten in everything unless I could specifically rule it out. Based on Zachary’s love for eating paper, chewing on wood, etc., I even assumed non-food items might contain gluten. In other words, I watched everything that went into his mouth.
Get ready for a shocker….
When we changed Zachary’s diet…overnight he went from a “normal, gluten and casein packed diet” to a gluten and casein free diet that was also low in phenols…he refused to eat for 5 days!!! He was not getting that “high” I guess he was used to from the gluten and casein that acted like drugs on his brain in his “old diet”. When the “high” disappeared, he would not eat. Like a drugged person, it was as if he was in “withdrawal”. He cried and had fits all the time. All I could do as a parent was to make sure he had plenty of fluids… I was determined to win this one! Fred and I were both in absolute tears. Each night we went to bed, I cried and cried. Each time I fed him over those first few days, he just spit out his food... whatever it was…and as I watched him spit it out, my tears flowed…day, after day, after day. On the 5th day, he finally gave in and started eating again… only now, he would be getting foods that were not harmful to him. If I had to do it again, would I do it differently? Well, I now know of more foods to “entice” him and so, it probably would not be nearly as difficult as it was the first time around. That was another reason for which I felt such an intense need to tell other parents who were dealing with autism about those things we went through. I now know about non-dairy “puddings”, spaghetti substitutes, etc. that would have probably gotten him eating sooner had I known about them then.
I would never have expected Zachary’s withdrawal-like behavior but it certainly was there! How else could I explain his absolute refusal to eat for five days at the onset of the new diet! But, I held firm and made the shift to foods that would no longer harm Zachary. I knew I would not knowingly give my child “LSD” or any other hallucinogen. Karyn Seroussi’s book had explained how gluten and casein proteins acted like drugs on the brain of children like Zachary. So, likewise, I would no longer knowingly give Zachary foods that contained these proteins…to me, it would have been like handing him a hallucinogen or other “drug” with my own hands... and knowing what I now did, I simply could not do that...to me, casein and gluten = “drugs” ...plain and simple!
There were a few things I constantly had to keep in mind when caring for Zachary:
1) Gluten and casein = drugs … and phenols were pretty bad too…
2) Food = Caloric Intake Only. Food did not equal “nutrient” intake. Supplements = Nutrient Providers. Psychologically, this was a difficult thing to do. 3) Assume everything had gluten, unless I could specifically rule it out. I became an expert at reading food labels...and read them constantly even when repurchasing foods I had used in the past, just to make sure they were still ok. I avoided anything with casein or gluten and hidden sources under names like “malt”, “whey”, etc.
4) “Wheat Free” DID NOT = “Gluten Free”.
5) “No Gluten Added” or “No Casein Added” DID NOT = “gluten free” or “casein free”.
6) Products of companies that sold “gluten free” foods were not necessarily ALL gluten free, or all gluten free and casein free. Some of these companies also carried “other products” in their product line and so I could not assume that a company’s name meant all products in their product line were “gluten free”. I found it easy to get confused over that...and it was critical to get it right! Product lines could have hidden sources of gluten under “spices” and so, I ALWAYS had to ask specifically about the contents of certain products.
It was critical to remember to ALWAYS read labels. Companies changed their products and what was once acceptable for Zachary in the past was not necessarily so in the future. Product lines changed constantly. I always read and re-read the product labels. That had saved me on numerous occasions. I had seen products in food stores that said: “No Gluten Added”, yet if I read the label, there were ingredients in the product that contained gluten. The fact that “no extra gluten was added via some processing method” did not mean the product was “gluten free”. I found I always had to check labels VERY carefully….and look specifically for the words “gluten free” or “dairy free” or “lactose free”. I was absolutely disgusted by the fact that marketers tried to fool consumers by using “no gluten added” or “no dairy added”... I saw it as “deceptive advertising”, a play on words...but this was no game...my child’s health was so dependent on accurate labeling. I kept asking myself, why were manufacturers not forced to tell the truth? How could they get away with these practices? Why could they not “be forced” to label their products gluten or casein free? That would have made life so much easier...saved so much valuable time for parents of autistic or special needs children such as myself. Instead, these food manufacturers were allowed to knowingly make our lives more difficult! My goal in writing this book was to help, somewhat, with that task...to make parents aware of the “marketing traps” and simply to help parents of autistic children save valuable time.
I was basically starting from scratch…only a few actual products had been mentioned in Karyn Seroussi’s book and a few “I could use” in Lisa Lewis’ “Special Diets for Special Kids”. I said “I could use” here for one big reason... I absolutely hated to cook! I had always commented to my mother-in-law when we spoke of my niece who had “a ton of allergies”, that “giving me a child “like that” - one with very limited food choices - would be the worse thing God could possibly do to me” - that was how much I hated cooking! But, God had something planned for me – a son whose foods would be even more limited than those of my niece! For Zachary, I was implementing something much stricter than what Lisa Lewis had in some her recipes...I was also very much limiting “phenols”. Therefore, any recipes that included bananas, apples, raisins, and tomatoes in any form, were “out”.
For over ten months, Zachary had absolutely none of those foods. In spite of my dislike of cooking, there were definitely a few recipes I did use though (and Zachary did love them). Lisa Lewis’ book did have a lot of valuable recipes for mothers who did not mind cooking and as much as I hated cooking, the fact was that Zachary was on a very limited diet, and finding even just one or two recipes I could make that he loved was invaluable. The first half of Lisa Lewis’ book provided important information on research, good web sites for parents of autistic/special needs children, available “tests” out there (urine tests, etc. – although, again, I never used any of these tests).
What can I say...I was just one of those mothers who simply preferred to go the easy route and find specialty vendors who already made the products I needed (like bread, cookies, etc.). Also, today, there were definitely more products available “ready made” and so that, too, simplified life. If I did not have to “make it myself”, that was always the route I went. Even today, however, as I go through the pages of Lisa Lewis’ book, I find yet more information I had missed the first time around. Now that I found life a little more “under control” as far as at least understanding Zachary’s frustrations, who knows, maybe this year, I would break down and give cooking a little more of a try. A year and a half ago, though, life was still very much in a whirlwind and so I did go the easy route – buying ready made.
As far as “actual foods ready to eat (or close to it)” I was basically starting from ground zero. As stated earlier, I was never into the “re-invent the wheel thing” and so, I wanted to provide, for other parents, what I had found as far as “actual ready to use products”. It was when I decided to write this book that I once again pulled Karyn Seroussi’s book, “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” and again looked at Lisa Lewis’ book “Special Diets for Special Kids”. I had never been much for reading appendices in the past, and this time, I had deeply regretted that. Both these books had very good information in the “Appendix” section, information on additional vendors providing gluten free foods, good web sites and contact information for parents with autistic kids. Again, for anyone with an autistic or special needs child like mine, I recommend reading these books (including the Appendices). They are both packed with valuable information. The Suggested Readings section at the back of this book provides ISBN numbers for both of these publications.
GETTING STARTED
The “Hassle” of “Separate Meals”
For Zachary, we pretty well always had to cook him “his own meal”, for two reasons. The first and obvious was the fact that he simply could not eat almost everything the rest of us ate. The second was because feeding “all of us” on Zachary’s foods would have proved to be too expensive. His special needs required special foods, and those usually cost more. Once we got used to the “separate meals” it was not that bad. Given how restrictive this diet was, we quickly got into the habit of doing this. It was not like I had to cook Zachary any “big meals” or anything. Cooking for him was actually quite simple. It was simply that his foods were very limited and so I had to quickly get used to the idea that variety would be basically non-existent and that, again, food was only for caloric intake and not for “nutrition” or “pleasure”. Once I got passed that, I was fine. I just kept reminding myself that this was for his own good. What I found was that he really did not seem to mind the lack of variety.
Cross-Contamination
Since autistic children can be affected by gluten and casein at molecular level, I was always careful not to use utensils for both Zachary’s food and that of other members in the family. I always used clean utensils for Zachary and made absolutely sure they did not so much as touch something that may contain gluten or casein. Zachary had his own toaster for bread in order to prevent his food from touching gluten-containing breadcrumbs in the toaster used by the rest of the family. This sounded extreme, but, that was an idea I had read about in another book (I believed it was in Karyn Seroussi’s book but I did not recall for sure) and it was what I felt I had to do to ensure Zachary had a diet completely free of any gluten and casein. At first, like anything, I found it difficult, but over time, I adjusted and like everything else, it became routine.
For food items that both Zachary and the rest of the family could have, I bought duplicates of the same product, marking a big “Z” in permanent marker on Zachary’s jar (this was true for things like honey, molasses, maple syrup, jam, etc. – although I used these products very sparingly/rarely since they promoted yeast growth). When the family was “out” of their supply, they could not “dip” into Zachary’s. That was absolutely forbidden. I just found that keeping everything separate made life a lot easier. I had tried just telling the rest of the family members to always use clean utensils if “borrowing” from Zachary’s jars, but, I found, too often, I would catch someone, including myself – as careful as I was, ready to put a knife into Zachary’s jar of honey, for example, just after having put some butter on my toast. Luckily, I “caught myself” just prior to contaminating Zachary’s honey with butter (a product containing casein) and my breadcrumbs (containing gluten). After “catching myself” nearly doing something like that twice, I decided it was easier for everyone if Zachary had “his jars” and the rest of the family had theirs.
The Cost
Where possible, I provided the cost of products. EVERYTHING Zachary ate was listed in this chapter or in the Gluten Solutions, Inc. catalog (it includes prices). If a product did not appear in this book, or in the Gluten Solutions, Inc. catalog (the company I found the most useful/practical for implementing a gluten free and casein free diet on my own), he did not eat it – plain and simple. So, although it seemed like a lot of money to put out, this was Zachary’s ENTIRE diet. Also, it was not like he ate the entire $4.00 loaf of rice bread in a day. One loaf could last him two to three weeks, easily. Small children just did not eat that much and so the same was true for all products. Even though the initial outlay seemed like a lot, we thought of it as “Zachary’s groceries” since outside of fresh meats and maybe one or two other products, literally, he really did not eat from a “regular” food store. I would say that 99% of what he ate came directly from the manufacturer or from a health food store. We were now in the Upper Peninsula of Michigan, and so, shipping charges did add up. Anyone in a city had a definite cost advantage there, no doubt about it, but there were ways I could minimize shipping charges, too.
Buying in Bulk
One of the best ways to save money was to buy in bulk. I always bought things by the case rather than “odd lots”. Shipping charges added up fast, as we first discovered and so it was best not to be ordering every week or even every month. I “stocked up” as much as I could as early as I could. The manager of my local health food store and I became good acquaintances. I always took the time to talk to her whenever I went to her store. She was always kind enough to tell me when the products she knew I used came “on sale” and that could at times save a substantial amount.
Unfortunately, in the beginning, I had failed to make sure Zachary even liked a particular product before I sometimes bought too much of it. I had made that mistake on a few occasions. A lesson, yes, but then, with Zachary, everything was an “opportunity to learn”?
A Freezer
Since buying in bulk was best as far as costs, a freezer was a must. I froze everything (granola bars, cookies, etc) until I needed it.
Organic Products
Autistic children and indeed, many children with food intolerances, did not seem to do well with too many food additives. For Zachary, I went with organic products as much as I could and almost completely eliminated food coloring and artificial flavors from his diet.
Change in Appetite
After completely overhauling Zachary’s diet, I noticed that three or four days a month, he had very little appetite. That was something I had never seen with Zachary before, he constantly ate, but then again, that was because for him, his old diet provided that “high” he longed for. . Prior to our changing his diet, he could “never get enough” because he always wanted that “pseudo-drug” high from the gluten, casein and possibly phenols. With his new diet, the need to constantly eat went away, and I was later told by a doctor that this was actually normal, that “normal” children often had days when they simply did not feel like eating.
Time Zone Differences
I provided readers with many telephone numbers for companies whose products I used. Do not ask me why but almost all of them were on the west coast. There was a three hour difference from the east coast to the west coast, something I always had to keep in mind when calling vendors. I had enough to pay for without paying for calls to “answering machines”, calls that provided no benefit whatsoever for the cost I had incurred.
DIET ROTATION – THIS WAS CRITICAL!!!
Diet rotation was critical in implementing this diet. What that meant was that since Zachary ate a lot of “the same foods”, rice, for example, he had to have a day or two in the week when he ate absolutely none of that particular product...no matter how minute the amount. This helped prevent the development of allergies to the few “allowable foods”!!!. Rice was too important in his diet to risk an allergy to rice being developed. Actually, Zachary’s diet was so limited, that “all foods were critical in my view and thus I used a rotation of pretty well all his foods in order to prevent the development of an intolerance to the few allowable foods he could have. An allergy to one of his staples would have made this entire project unbearable. “Good foods”, for Zachary, were just too few and far between. As such, Zachary had at least two “rice free” days a week and two potato free days a week. A rotation diet was good for all foods. As such, meats and drinks and everything else, were rotated too! No child should be eating the same food day after day after day. That was just asking for trouble and the development of additional problems. The idea was to make sure Zachary had a “break” every two days or so from each food. I can not over-emphasize how critical this was to Zachary’s successful gluten and casein free diet… the only other thing as critical as this was to assume everything had gluten in it unless I could specifically rule it out!
Gluten was hidden in/added to so many products, from salt and pepper, spices, sauces, and probably most processed foods that unless I could specifically rule it out, I assumed it was present. The difficult part in all of this was that for "trace amounts” of such things like gluten, the FDA did not require it be included in the labeling…and since autistic children could have a reaction to gluten at MOLECULAR level... I had to assume it was in EVERYTHING unless specifically ruled out!
Recognizing hidden sources of casein and gluten was paramount. For casein (the dairy protein) the obvious words for things to avoid were “dairy”, “casein”, “milk products”, “milk solids” but there were words I was not familiar with too...the big one being “whey”. Whey was the “water” part of milk just “milk without the cream” was how Fred told me to think about it...he had lived on a dairy farm and gone to agricultural college and was most familiar with that term. As for the gluten, it was pretty well everywhere...unless I specifically ruled it out as I did with the products listed in this chapter.
THE PRODUCTS...
Rice Milk
Since Zachary was on a dairy free diet, we had to find a milk substitute. His choices included soy and rice milk. He did not do well with soy milk and so we went with the rice milk. There are several brands of rice milk and soy milk out there. Not all are gluten free. Some use barley or other “grain” proteins to process the milk and often, that was not very obvious. If I read the labels very, very carefully, however, I saw that this was true (again, Karyn Serroussi’s book had made mention of this). I found that this “information” on the use of “barley proteins”, for example, was often not under the list of ingredients, but rather in very small print under the “nutritional facts” section (or somewhere else on the label and therefore, easily missed). More “deceptive” yet potentially devastating “marketing” practices by food manufacturers. So, that was another thing to watch for. The brand I used was called Pacific Foods Rice Milk. I used the “plain” as opposed to the non-fat. Pacific Foods of Oregon, Inc. was located in Tualatin, OR 97062 (503-692-9666, www.pacificfoods.com). Rice milk was stored at room temperature until the carton was opened. Once opened it needed to be refrigerated and lasted about ten days in the refrigerator, although I never left an open carton longer than three days. Zachary could easily drink one carton in a day. I bought it by the case full for about 6 months at a time. This rice milk was enriched with calcium, vitamins A and D and “friendly bacteria”.
Water
After rice milk, this was the drink of choice. It had taken a very long time for Zachary to even like drinking water after we changed his diet. He had never drank it prior to that because he did not like it, no matter how hard and how often I had tried to make him drink it...again, I am sure that was related to the fact that cow’s milk was preferred due to its “drug-like” effects.
Fruits
Fruits and vegetables were gluten and casein free but they were high in phenols and so, I limited those too…, and I was convinced that phenols played a part in the problems autistic children experienced. I had watched the impact of phenol high foods on Zachary for over eighteen months now and if I gave him too many of these foods, the autistic behaviors showed themselves much more! If he ate too many bananas or apples for example, the “hand flapping” started up again as did the “pushing my forehead along the floor” behavior. I had seen it over and over again. More than two fruits high in phenols a week was just too much for him even now.
Prior to the implementation of his new diet, the only fruits Zachary really ate were bananas, apples and raisins. He never seemed to like anything else. Zachary absolutely loved apple sauce! Bananas, apples and raisins were fruits that were very high in phenols. I once read that children will crave the foods they should not have and Karyn Seroussi’s book, “Unraveling the Mysteries of Autism and Pervasive Developmental Disorder” had made a brief mention near the end of the book that phenols may also be a problem for autistic kids.
Well, I tested her theory out on Zachary. At least for him, I found it to be very true. Whenever Zachary ate bananas he was either very irritable or had a hard time sleeping. Apples were the really odd one. I cannot explain this in any way, but, when Zachary ate apples, it seemed to trigger in him a need to “gnaw” on things. So intense was this need that he would chew on things you would never expect. The drywall around the windowsills in his bedroom in Illinois were gnawed or “chewed away” right down to the metal strip contractors put around the window frame before applying the drywall. He would also chew on toys, wood, etc. I did not know if he was getting gluten from some of these products but I did know that apples were really bad for the “need to chew”/”need to bite” (even himself). I took apples completely away from his diet for over ten months, and with that, the need to gnaw/bite disappeared. After ten months, I tried again and gave him an apple. I gave him three apples in one week. Well, sure enough, the “need to gnaw on something” or “bite” came back. Zachary tried to chew the plastic blinds for our French doors. When I cut him back to one apple per week, he seemed able to tolerate that without having to “gnaw” or “bite”.
I also did the “banana” test. If I gave him more than one banana a week, he got very irritable and had trouble sleeping at night and there was more hand flapping and “pushing of his forehead along the floor”. Raisins had a more immediate impact. Within two hours of eating a box of raisins, Zachary went into “fits” and became uncontrollable. Whenever I “added” one of these “new foods” to his diet, I added them back one at a time to see the “impact” and thus, the “one food” for that week was the only thing which was different in his diet in over ten months (bananas were first). After two weeks on the “banana trial”, I “tested” the apples. A couple of months later, I added the raisins. I added these foods back over a period of time to get a very good feel for how he was reacting to them. To this day, more than two bananas a week is too much and it is the same for apples. So, at the age of four years and three months, he gets one banana a week and one apple a week and that is it. I gave him those two fruits, the only two for the week, three days apart, usually on “rice free” days (see DIET ROTATION section). Raisins, to this day, are still completely out. I tried giving him white raisins. He would not even touch those. Yet, he practically devoured the regular raisins I gave him.
The day I decided to do the “raisin test”, we were actually in the grocery store when I gave him a box of raisins. I knew he loved them and it helped to keep him content. That “test” to reintroduce raisins was on October 22nd, 2001. As we went through the store, Zachary was sitting in the cart, eating the raisins. As we went down the aisles, he would say: “Um, delicious raisins”. People passing by smiled as they heard him. I was sure they all thought it was “so cute”. If they only knew!!! Anyway, that was around 2:00 p.m. By 6:00 p.m, Zachary was impossible to control. Again, this had been the only change to his diet. In addition, he kept saying: “clothes off”… something he had not said in quite some time. When he used to get very stressed out, he wanted his clothes, socks, shoes/boots, hat…everything… removed. He just could not tolerate them. Usually, he now tolerates all his clothes, but once in a while still wants his boots/shoes off when he should have them on (probably the impact of bananas and apples still in his diet to a limited extent). Anyway, to this day, raisins are still “OUT”! Knowing now that some foods can have an almost immediate impact on children like Zachary, I probably will not be doing too many more “tests” in public places. Had his reaction to raisins been “more immediate”, that would have been horrible to go through in a public place...to say the least!
That pretty well concludes what fruits Zachary ate. Zachary has never taken to actually eating an orange or any other fruit. Due to the texture of pears, oranges, all other fruits basically, he still refused to eat them. He did not like the “fibrous” part of fruits. I thought that pears would be ok (being so similar to apples), but he found them too “slimmy” compared to apples and refused to eat them. I tried blueberries, strawberries, kiwi, white grapes (not red – too high in phenols – recall raisin incident), etc…. so far, nothing...he would not even touch them, yet alone put them in his mouth! I am hoping this year, he takes to more fruits...or that I can at least introduce more of them in the form of juices. I am hoping that now, since he at least takes juices from other fruits, that familiarity with the taste will help him eat more actual fruits this year...we will have to see!
Juices
The only juice I could ever get Zachary to drink prior to changing his diet was apple juice. Zachary never liked orange juice or any other juice I tried to give him. I tried several times to get him to take new juices since the inception of his new diet, back in March of 2000. I even tried them very watered down. Still he did not like them. The one juice he did take was an organic white grape juice made by Cascadian Farms out of Rockport, WA 98283. (Web: cfarm.com, Tel: not available – see store locator on web). I was always able to obtain this product through a health food store. I would put just two teaspoons or so of the frozen concentrate in an eight oz sipping cup of water. That was the only juice he drank for the first eighteen months of this diet.
As he got more used to this juice, I increased its concentration slightly over time to make it “taste better”, always being careful to see if he had an adverse reaction to it (usually manifested as diarrhea). Only recently (since October of 2001) has he started drinking a product that contained orange juice. This juice was called “Five Alive” and many regular grocery stores carried it. In Canada (where Zachary started drinking it) I bought it in concentrate form. In the U.S., I had only found it in 64 fluid ounce cartons. “Five Alive” was made by Minute Maid Company (a division of Coca-Cola) out of Houston, TX 77252. The consumer information hotline number on the carton is (800-888-6488). “Five Alive” contained the following (per the carton label): water, orange juice (from concentrate, sweeteners (high fructose corn syrup, sugar), lemon, grapefruit and tangerine juices from concentrate, natural flavors, lime juice from concentrate. It contains 41% juice, is pasteurized and contains no artificial flavors or preservatives (again, per the label). This was a juice that Zachary liked. It was not as strong as orange juice and I could easily “mask” his vitamins in it.
I often diluted the juice... ½ juice ½ water, but, right now, I am not that concerned about it and often give it to him straight from the carton. He really never gets more than two eight ounce cups in one day…and usually, those are on “rice-free” days. So, in total, he gets about four eight ounce cups a week. He has been drinking it for about two months now and so far, he has done fine with it. In recent readings (since I introduced this juice to him), I noticed that some experts say yeast can be found in juices made from “concentrates”. I have not taken Zachary off of it but I will keep an eye on him to see if any “complications” show up. I think I will probably keep it diluted and see how he does. This was “too recent” a finding (the fact that juice concentrates could have yeast) for me to “test” anything prior to the writing of this book but I did want to make parents aware of that and so, I included it. I actually saw this issue with juice “concentrates” when I pulled out a book I had read over a year ago... I had missed it then! I have also been slowly introducing pineapple juice as well. With that one, I can get the “not from concentrate” at a regular food store. It comes in a can. I use the Dole brand name for this one. I also started to give Zachary plain orange juice. Again, I was careful to purchase the “not from concentrate” at the local food store. I use the Tropicana (pasteurized) brand.
Zachary also did quite well with organic pear juice…again, something I was able to get through a health food store. I tried carrot juice as well but that did not work. I am still hopeful on that one though since it is a “light” juice that goes down pretty well and it is a great juice from a nutritional perspective – packed with beta-carotene and that helps boost the immune system. Since Zachary has just now taken to the “Five Alive” juice combination, I am hopeful I can soon introduce carrot juice slowly too...starting with a “diluted juice” first and then working up to a pure carrot juice. For the most part, I have rarely seen carrot juice in a store. I did find it once, in a can. I do not feel that this would be the way to go though. My experience with carrot juice (having made it fresh at home with a juicer in the past) was that it did not keep long even in the refrigerator. I found it always best to just make it fresh for myself. That will be the way I go for Zachary when I attempt to introduce carrot juice this year...I will make it fresh. If I can get him to take carrot juice, than I can slowly mix in other vegetables as well.
That about covers Zachary’s intake as far as “juices”.
Vegetables
Zachary used to love eating spaghetti/tomato sauce. However, when we changed his diet to gluten and casein free and low in phenols, we got rid of tomatoes too since they were high in phenols. For about eighteen months, he had none…nothing at all made with tomatoes. I then tried to “re-introduce” tomatoes on a very limited basis. This was after I had reintroduced bananas and apples on a very limited basis. I gave Zachary about one to two teaspoons with a big bowl of rice noodles. He had that maybe three times a week. Unfortunately, I found even that was too much for him to tolerate (see chapter entitled “A Small Setback”). I found the sauce, even just that small amount brought back some of his spinning behavior and his need to “push his forehead along the floor”. He is now “off” tomatoes again.
Zachary used to love to eat mashed potatoes…before we changed his diet. Unfortunately, we did not know that it was because of the gravy that he loved them so…gravy that I am sure contained gluten. Almost as soon as his diet changed, Zachary refused to eat plain mashed potatoes (only had a little 100% canola oil spread, sea salt and organic pepper on them). He could not tolerate the texture in his mouth and would spit them out… no matter how “smooth” or how “lumpy” they were. He still does not like them. So, then came the French fries. That was pretty well the only way Zachary would eat potatoes…then, and now.
Cascadian Farms (listed above under “Juices”) also made organic French fries. Store bought French fries will not do…many, if not all, appear to contain gluten, sprayed on them to keep them from sticking or found in other ingredients used to make them. I still buy some Cascadian Farms Organic French Fries for convenience sake...although I now made my own fries as well. It only took about ten minutes to peel three or four potatoes anyway…I bought a French fry slicer (available at any household goods store) so making my own fries was not that big a deal. My sister-in-law advised me that she had read that “red” potatoes were best for children with autism. Do not ask me why…I do not know…just something she read somewhere…so, that was usually what we used.. but on occasion, we used white potatoes too when we were out of the red ones. At first, since Zachary refused to eat most foods, we had to come up with creative ways of making him eat. We would all go on walks, Anika holding the bowl of French fries, Fred holding Zachary on his shoulders, and me, feeding them to him as we walked along. We found if we kept him distracted, it was always easier to feed him. We only had to do that once...the first week of his diet...just to get him eating. It was an enjoyable walk for all of us and we all cheered each time Zachary ate a fry.
While on the subject of French fries…what to cook them in. We found Zachary tended to react negatively to corn oils. The best oil for him was 100% safflower oil…again, available in most food stores. I found a lot of labels said “pure safflower oil” but if I read the label, there was often other stuff in there also. I purchased only 100% safflower oil. He was also fine with 100% extra virgin olive oil, but that tended to be more expensive. When making any “fat rich foods” such as French fries, I always removed excess fat with paper towels in order to help limit Zachary’s fat intake...another must!
A Story On French Fries…
On a trip to visit family in Canada in June of 2000, Zachary started getting a lot of diarrhea. Nothing seemed to be different in his diet…but then, I was still fairly new at it. He had only been on it for three months or so. Anyway, I had read in Karyn Seroussi’s book (p. 212) that MacDonald’s French fries were ok. In Illinois, we had often given Zachary McDonald’s French fries and he seemed ok with them. I just “naturally” assumed they would be fine in Canada as well. …stupid me, I assumed that manufacturing practices did not vary from state to state or country to country for one company...not to mention the fact that I also assumed they did not cook anything with gluten in their oil…in addition to French fries…things like breaded chicken, breaded onion rings, and so on...boy what a bad assumption...and did I learn that the hard way!
In Canada, I gave Zachary McDonald’s French fries...out of nowhere, he just got sicker and sicker… each time I thought he was “pulling out of it” , I wanted to build up his strength again and thought the fries would be ok. I knew, they have a lot of grease, but I still thought he should be able to tolerate them a little. Zachary did not want to eat anything else, no rice cakes, no rice bread, nothing! Anyway, each time I gave him some fries, about the only food he would eat, he seemed to get worse and worse…to the point that he had diarrhea on and off for about ten days.
Well, again, stupid me, I finally figured it out…it was the French fries that were making him sick. I had not made the connection because in the Illinois, he had been perfectly fine on them...they were a staple in his diet. They must have been cooking onion rings or breaded chicken in the same oil as the fries, or the fries themselves were manufactured differently in Canada because Zachary’s reaction could not be explained any other way…that was the only food that was “different” in his diet since I now packed everything I needed for him, except for fresh meats. I thought the fries were safe, but obviously, based on his reaction, they were not. Karyn Seroussi’s book stated that many autistic children were impacted by casein and gluten at molecular level…boy, did I learn that the hard way! Zachary was barely eating.
I forced a few tablespoons of fluid down his throat every few hours to keep his kidneys running. After ten days of what seemed to me to be constant diarrhea, I was ready to admit Zachary to the hospital and have him fed by intravenous. Luckily, it was right at that time that the little voice in my head said: “think, what is REALLY different in his diet?”… and that was when I figured it out. I had been so concerned about the “immediate situation”, the “diarrhea” that I did not see there had been a change to his diet – the fries were different. So, bottom line here, eating out was now completely out for Zachary...and I had learned a valuable lesson. I could no longer assume manufacturing practices were the same everywhere for the same company and I could no longer assume only “safe foods” were cooked in the oil used in restaurants...no more restaurant fries for Zachary!
The only other vegetable Zachary liked was corn. Unfortunately, he really could not eat that…at least not in its “on the cob” or “kernel” state…not then, not now. I had long suspected that corn did not agree with Zachary. He never seemed to digest it properly (as very evident from his stools) and it threw him into “tantrums” more than once. Again, it was one of those foods he loved. After over a year without corn on the cob, I thought I would try giving him ½ a cob to see how he would do. Well, needless to say, he loved to eat it…so much so, that within a couple of minutes he had eaten all the kernels on the cob. I had been busy putting the dishes in the dishwasher and by the time I had turned to check on him again, he was actually eating the cob itself. It was another of those “I cannot believe what I am seeing moments”.
From then on, every time I saw Zachary “enjoying his food just a little too much”, I suspect something was wrong. Sure enough, that evening, he was restless and irritable and had a very difficult time sleeping. He has not had corn on the cob since. Popcorn was also out for the same reason. Interestingly though, he was better able to tolerate processed corn… especially white corn and so, every once in a while, I would give him white corn chips from a health food store. He could also tolerate some “corn-containing” cereal as well (see section on grains/cereals).
Again, Zachary never took to other vegetables. I continued to try giving him carrots, squash and other vegetables, but so far, no luck. I am hoping this year will be the year he starts eating both fruits and vegetables a little more because I have noticed some changes in his like or dislike for certain food textures lately (see Grains/Cereals below).
Grains/Cereals...and yet, another important lesson!
Karyn Seroussi’s book had mentioned a cereal I tried to find in a local health food store. They did not have it on the shelf. That was when I learned another valuable lesson. If I knew the manufacturer, most times, the health food store could get a product for me even if it was not on the shelf. They had these books that listed tons of distributors they represented but since they could not carry “all foods from all distributors”, the particular products I wanted were not always on the shelf...but that did not mean they could not get them for me. So when I did not see something I wanted, I always asked. So far, I have been able to get pretty well everything I need…and I have now lived in a small town in the Upper Peninsula in Michigan (not exactly a populated area) for well over a year!
This was where things got a little better. I found a company on the Internet by the name of “Gluten Solution, Inc.”. They were located at 3810 Riviera Drive, Suite 1, San Diego, CA 92109. (Their phone number was 888-845-8836 or 810-454-8277 at web site Glutensolutions.com ). Anyway, this company, one of my absolute favorites, provided over three hundred gluten free foods from various manufacturers. Again, the name of the company, “Gluten Solutions, Inc.” could easily make one think that all their products were gluten free...that was not the case...the company carried other “special diet” products as well, and some of those could contain gluten. I always had to remember to check each product. There was also another company...that one was listed in Karyn Seroussi’s Appendix B...an Appendix I only discovered while writing this book. That company was called The Gluten Free Panty (P.O. Box 840, Glastonbury, CT 06033). They could be reached at 800-291-8386 (for orders), 860-633-3826 (for inquiries) or via the web at glutenfree.com. This looked like another great company! Until now, however, as Kirkman Labs had been my “one stop shop” for supplements, Gluten Solutions, Inc. became my “one stop shop” for a whole slew of gluten and dairy free foods. It had taken me a long time to find this company on my own...but, now, I had found it...another valuable source I just had to share with other parents of children on special diets or with special needs. So, there was hope at the end of the tunnel. Any parent can call this company to get a copy of their catalog. They will gladly send it to you and what was really neat about Gluten Solutions, Inc.’s catalog was that it listed what the products contained as well as what they did not contain! So, I was told whether or not the foods were dairy free, gluten free, corn free, soy free, egg free, etc., etc., etc. This in itself was FANTASTIC! Talk about a time saver! All their stuff shipped via UPS.
Their catalog included bagels, muffins, breakfast foods, breads and buns, mixes, brownies, cakes, dessert mixes, cookies and cookie mixes, crackers and snacks, flavorings and cooking aids, flours and grains, pasta and pizza crust, soups, sauces, cookbooks, instant meals, dairy, egg and cheese substitutes and gluten free sampler kits and a ton of other stuff.
As with all foods since Zachary had been on this diet, I still read and re-read labels in spite of what appeared in the catalogs. I was always extremely good about that...there was just too much at stake. I had worked too hard to totally trust anyone else with Zachary’s diet. Most the foods in this catalog, I knew were gluten free, but many still had dairy…and for Zachary, that was not good. But, at least the company’s catalog told me if a food contained dairy in its catalog...before I bought it...and many of the products, I found, were without dairy too. Life had finally began to get a little easier. It was in Gluten Solutions’ “catalog” that I got the list of grains that did or did not contain gluten. Again, I was not out to reinvent the wheel here…I figured, they specialized in this, they had to at least know which grains did or did not contain gluten….I did not need to “re-research that basic point myself”. My goal was to give parents of autistic children time saving tips/resources...not to reinvent the wheel and waste my time proving the already proven.
I knew what it was like to have the devastating news that your child was autistic and I knew how much additional time just “dealing with that” was involved...dealing with the tantrums, the frustrations, the overwhelming behavioral problems and the overall helplessness. I had learned the hard way that there was not that much out there as far as truly time saving tips on “where to go” and “what to do when you first get the diagnosis”. I, myself, had found bits and pieces of the puzzle a little here, a little there...and again, that was why I just had to write this book. If it helped just one family, just one child to overcome autism, to me, that was worth it. Back to the work at hand...
To recap… grains that DID contain gluten included: wheat, barley, oats, bulgar, triticale, wheat berries, kamut, spelt.
Grains that DID NOT contain gluten included: amaranth, buckwheat, quinoa, rice (brown, white, and wild), millet, corn grits.
Below, I provided a list of Zachary’s Cereals – these were all casein and gluten free and I could get all of these through a health food store.
Note: Since Zachary did not take cow’s milk he ate these with rice milk. If it was a rice free day, I gave him the cereal with a little juice on it instead of the milk and he took it just fine….I have even used water instead of rice milk or juice and had him take his cereal on rice free days that way. I often had to get very creative when it came to Zachary’s food intake.
An important observation... in the beginning, Zachary did not like his cereal very “mushy” and so I only sprinkled his cereal with juice, water or rice milk in order to keep it pretty crunchy. He did much better with the texture issue as time went by. He now started to tolerate it a lot “mushier” than he used to... and herein lies my hope for the introduction of yet more foods this year!
There were more available through Gluten Solutions, Inc… although I have not used them yet.
Pasta
When cooking pasta for Zachary, I first gave him no spaghetti sauce...just noodles with 100% safflower oil spread, sea salt and organic black pepper. In September of 2001 or so, I added one, sometimes two teaspoons of a store bought spaghetti sauce, thinking by now, his gut might have healed enough to allow this food to be added. I knew tomatoes were high in phenols and that was something he had not tolerated well in the past. I hoped that although this was a store bought brand and therefore, surely it contained traces of gluten under “spices”, that maybe after a year and a half, he would be ok with it. Again, I was wrong and I learned that the hard way! I found that even one or two teaspoons (two or three times a week), was still too much. Autistic behaviors returned. See more on this in “A Small Setback” chapter. Zachary would have to go back to “plain” rice spaghetti...just seasoned with sea salt, organic black pepper and maybe a little safflower oil spread.
Again, I obtained various pastas through Gluten Solutions, Inc. (they had several to choose from) and most health food stores carry some too. It was just critical to stick to “gluten free” grains like rice, amaranth, quinoa, etc., when buying pasta.
Every once in a while, Zachary also had a spaghetti-type food made of corn and quinoa flours. It was made by Quinoa Corporation, Box 1039, Torrance, CA 90505 (Web: Not available, Tel: 310-530-8666).
Note to the wise...when I cooked pasta from these special grains, they got quite “guey”… the trick I was told (by my sister in law whose child had numerous allergies) was NOT to stir the pasta too much when cooking. Breaking the pasta into very small pieces, about one inch in length also helped a lot. What I did for Zachary was I made sure the water was really boiling well, put in a few teaspoons of 100% olive oil, broke the pasta in very small pieces and let it cook (brown rice took a while but it was very nutritious). At first, it was difficult for me not to go over to the stove and “stir” the pasta as I used to do for regular spaghetti…with this stuff, I could not do that. I just took a fork, put it straight down to the bottom of the pot and turned a couple of times to separate, gently. Doing that in a couple of spots in the pot helped prevent ending up with one big “gooey” mess. It seemed the less I agitated the pasta, the better.
Flours
Buckwheat Flour, White Rice Flour, Brown Rice Flour, Tapioca Flour and Potato Flour were pretty well available through health food stores. A good company for these products was Arrowhead Mills, Inc., Box 2059, Hereford, Texas 79045 (Web: Not available, Tel: Not available. Tapioca Flour could be obtained through Country Life Natural Foods, Box 489, Pullman, MI 49450 (Web: clnf.org, Tel: 800-456-7694 or 616-236-5011). I was not “a cook”, and these flours tended to be hard to work with and so I went with “mixes” as much as I could. Gluten Solutions, Inc. had several of those. But again, I think almost every food store I have been in carried these flours.
Other Grain Products
I guess I would call these “cous-cous type” looking products….only “stickier”. They were excellent from a nutritional perspective, but so far, Zachary did not want to eat them because of their texture. I had forced him to eat some once...that had been enough of a challenge that I thought I would wait longer. I was hopeful perhaps this year he would because of the recent change I noticed whereby “mushier” cereal was ok.
Quinoa – whole grain - available from Quinoa Corporation (as listed above under Pasta) and roasted buckwheat groats made by Birkett Mills, Penn Yan, NY 14527 (brand name was Pocono, Heart of Buckwheat…product also seemed to possibly be called “Kasha”, Web: thebirkettmills.com, Tel: 315-536-3311).
Breads
I chose to use rice breads. Again, this was something I could get through the health food store. I keep the slices/loaves frozen until I used them. I only took one or two slices out of the freezer at a time. Since Zachary was still quite young, he did not go through that much of it anyway. The company/brand I used was Food For Life Baking Company, Inc. , Box 1434, Corona, CA 91718 (Web: Food-for-life.com, Tel: 800-797-5090). Each loaf was about $4.00 but it lasted a while simply because Zachary was young and at that age he did not eat “that much”. There were other companies that made similar products. This one was just the one Zachary preferred. I used the white rice and brown rice breads (without raisins, of course!). I found these breads moister than others I had tried. There are also bread mixes that are gluten free (i.e., through Gluten Solutions, Inc., but I have never tried those). For me, it was easier to pick up Zachary’s breads at my local health food store. My view was that when it came to life with an autistic child, anything that simplified matters was great!
Eggs
I used to give Zachary a two egg omelet, on rice free days only. I found, however, that if he got too many eggs, he would not sleep well at night. So, I went to omelet every three days. In addition, I used only one yolk with three egg whites. When I cooked his omelet I used a little safflower oil spread, sea salt and organic pepper. I always gave him his eggs and bacon mixed together (I broke the bacon up and mixed it in after I had cooked it and drained the excess fat separately).
Meats
Again, as much as possible, I only gave Zachary fresh meats. If meats were not fresh (like ham, sausage, etc.) , I went with uncured meats since they had no added preservatives (nitrates, nitrites, MSG, colorings, no antibiotics or growth hormones given to animals, etc.). I had heard that some studies suggest high protein diets or too much meat was not good for the kidneys and so I was very careful to make sure Zachary did not eat “too much” in one day. A meat free day a week was probably a good idea also (although I just very recently thought about doing that).
Note: Many health food stores did not have actual uncured meats in their freezers but if I asked, they could usually get some from one or more of their distributors. Another good place to get them was through local food coops. Food stores or other parents with children on special diets were usually aware of local food coops when I inquired about them.
Chicken: Zachary usually ate chicken about two or three times a week. I bought either the boned breast or boneless breast and cooked it in the oven in a casserole dish. All I did was clean it and add about 1/8 of an inch of water to the casserole dish. I put the lid on and let it cook for about fifty minutes. Usually, when it was boneless chicken, the water was pretty well all gone when it was cooked. For chicken breast with bones, I put a little more water because I wanted a “broth” to pour on top of the chicken to make it less dry...that also provided the “cold fighting” properties found in chicken broth. At times, I actually gave Zachary a “cup of chicken juice” as I called it. That was basically just a cup filled with chicken broth. He did not drink it on many occasions, but, every once in a while, I could get him to do so.
The only thing I added to his chicken other than the water was sea salt and organic pepper. After a few trials, I easily figured out just how he liked it and chicken was always a favorite for him. Zachary would also drink the bouillon from the cooked chicken. I called it “chicken juice” and he always came running for it. The breaded chicken fingers as prepared in Lisa Lewis’ book was one that Zachary really enjoyed also. I found I could modify the recipe and use Potato Flyers (see snacks section) or his special potato chips (see snacks section) and he liked that even more. I bought Zachary’s chicken at any regular food store.
Steak: I only gave Zachary the boneless, “minute steak”. It was the one that was “pre-tenderized” or “pre-beaten” by the butcher as I called it. I just put it in a frying pan with a bit of safflower spread, cooked it thoroughly, added a bit of sea salt and pepper and gave it to Zachary. I found I had to remove any “tough” parts and cut the meat in dime size pieces for him to take it. He would not eat big chunks of any type of meat. Any variation from the size he liked tended to make him “gag” and when that happened, it was usually the end of the meal! I bought Zachary’s steaks at any regular food store.
Ham: I bought ham from the health food store. It was all natural, boneless, uncured ham. Since it had no preservatives or other additives, it was quite expensive, so usually, only Zachary ate it. A one and a half pound ham could cost about $10.00. It was best to cut it up after purchasing it and put it in the freezer in small portions that only Zachary could eat. I found twenty or so of these hams to be more than enough for the year. The brand I bought was Pure Farms Boneless Honey Baked Uncured Ham. Health foods stores varied greatly as to what brand of meat they carried simply due to logistics. All health food stores carry some brands. I just had to ask when I went there. Because I had to buy this through a health food store, I bought it in bulk and kept it frozen. I purchased this product through Whole Foods, Inc.
Bacon: Like the ham above, I bought uncured bacon. Thus, it had no preservatives or other additives. A pound was about $5.00. Again, I bought the Pure Farms brand and bought this through a health food store. Another good brand was Yorkshire Farms. They were located at 9 Styvesant Drive, Swedesboro, NJ 08085 (Web: yorkshirefarms.com, Tel: 888-786-2331). I bought bacon in bulk and kept it frozen. Since bacon was so fat, while cooking it, I removed the liquid fat from the frying pan. The best thing to do was to use an old canned vegetable tin can that had been emptied, sit that on the stove (away from the element, of course) while I cooked the bacon. Slowly, I remove the liquid fat in the frying pan with a spoon and dumped it into the tin can. I then placed that can in the freezer. When it was completely full, I discarded the can in the trash and got a new one. When the slices of bacon were nice and crispy, I laid it on a paper towel and removed any additional fat that I could.
Note: Autistic kids such as Zachary were often on very high fat diets because of their limited selections. Therefore, it was important to remove as much fat as possible.
Uncured Beef Wieners: Again, I went with an uncured product from Pure Farms but there are many meat vendors out there that provide uncured products. It was simply a matter of asking what vendor the food store carried. Zachary has done well with this one although I found the wieners contained “gristle” that needed to be removed. I usually cut the wiener in two to remove the “gristle” and then further cut the product into dime size pieces before giving it to Zachary. I purchased this particular brand through Whole Foods, Inc. and Zachary liked this product a lot.
Breakfast Sausage: Again, I went with an organic product. I used Valley’s Family of Farms Uncured Pork Breakfast Sausage Links. Valley’s Family of Farms was located at 507 West Main St., La Farge, WI 54639 (Web: organicvalley.com, Tel: 888-444-6455) these were about $4.00 for an eight ounce pack (eight sausages). Zachary loved these. I usually gave him three at a time. They needed to be cooked for twelve minutes (in boiling water), then browned in a frying pan (since they were already high in fat, I did not add anything to the pan prior to browning them) and served.
I know there was also a company called Shelton’s that made organic meats but I have never used their products. I am sure there are several others. Salt and Pepper
Yes, I learned even salt and pepper were often hidden sources of gluten...as were pretty well all “spices” (as labeled in the “lump all” category for so many store bought products). Therefore, Zachary only ate sea salt (I could pick that up at any food store in the salt aisle or any health food store) and whole organic black peppercorns (I just put those in a grinder and they tasted great). The organic black peppercorns I got at a health food store. Again, I always went organic stuff for Zachary. His pepper was made by a company called Frontier out of Norway, Iowa 52318 (Web: frontierherb.com, Tel: 800-669-3275). One bag was about $14.00 and that lasted the entire family about one year. Note that in our family, all we used was sea salt and this special black pepper. It needlessly complicated matters to constantly worry about accidentally giving Zachary the “wrong kind”…putting salt and pepper on food, especially at first, was often so automatic that I found I had to pay extra special attention and, honestly, there were many times when I was reaching for the “wrong salt and pepper... so, I decided to completely do away with the old stuff.
Cooking Oil/What To Use Instead of Butter
The only oils I used for Zachary were 100% extra virgin olive oil or 100% safflower oil. Again, “pure safflower oil” on a label did not mean 100% safflower oil and that was critical. Oil products often had “other stuff” in them that Zachary could not have. . There were products that appeared to be “safflower oil” in regular food stores, but when I read their labels, they had WHEY (the liquid or “watery” part of milk but without the cream) or other things autistic children should not be eating. So, again, as always, I was careful to constantly read the labels.
Since he could not have butter due to the dairy restriction, when Zachary had toast or eggs, I used Soft Safflower Oil Spread made by Hain Food Groups, Inc., Uniondale, NY 11553 Their consumer affairs was at 734 Franklin Ave, Suite 444, Garden City, NY 11530 (Web: Not available, Tel: 800-434-HAIN). I have always been able to get this through a health food store. Spectrum Organic Products, Inc made another product that I just recently started using. They are located at 1304 South Point, Blvd, Suite 280, Petaluma, CA 94954 (Web: spectrumnaturals.com or Tel: 707-778-8900). The product is non-hydrogenated Spectrum Naturals Spread made with canola oil. It tastes very much like butter (although a non-dairy product) but it is not recommended for frying.
Sugars
I always tried to minimize sugars for Zachary since sugar promoted yeast growth. I usually used honey, molasses or pure maple syrup for sweeteners, and then, only rarely and sparingly). Some experts suggested removing all sugars, including natural sugars (found in fruits, honey, etc.), from autistic children, however, I could not see doing that. Not only was it very difficult to do, practically, but I felt Zachary needed some sugar and I believed the many supplements he was taking would help with the yeast control issue. I bought these at regular grocery stores but, again, read labels carefully to ensure the product was 100% pure.
Jam/Preserves
I used preserves made by Smucker’s (the red raspberry or strawberry preserves – not the jam). I purchased these through any regular food store. Again, as with all sugars, I limit how much he got. I only very lightly spread some on Zachary’s rice toast. You could barely tell it was on there. Again, Zachary had “his own jars” (I bought the smallest ones I could find only because I did not use that much of the product in the first place). “His jars” were not to be used by anyone else in the family – that was strictly forbidden in order to prevent cross-contamination. His jars were marked with a big “Z” in black permanent marker and placed in the door of the refrigerator – in “his section”.
Peanut Butter/Almond Butter
I bought organic peanut butter and almond butter (tasted very good) from Whole Foods out of Austin, TX 78746 (Web: Wholefoodsmarket.com, Tel: Not available. Use the store locator on web). I believe Whole Foods was now under a company called Gaiam (gaiam.com at 800-869-3603). These products are available online through that company. I used to be able to get this at the health food store, but since moving, now I get it via Internet/UPS. I could probably get it through my local health food store though if I asked. I did not use regular peanut butter because most of the brands out there had salt and that was a hidden source of gluten. Also, I stuck with organic foods as much as possible for Zachary to minimize exposure to pesticides. This product was $5.00 for a sixteen ounce jar. He had a weaker system than a normal child to start with and I did not want to stress it needlessly.
Cooking Aids/Baking Powder/Xanthan Gum/Egg Substitutes
Yes, you guessed it…baking powder too!!! It was like I said… you had to assume EVERYTHING had gluten unless you specifically can rule it out. For those of you who love to cook, a company called the Hain Food Group, Inc. out of Uniondale, NY 11553 made a gluten-free baking powder. An eight-ounce jar cost me $3.19 at a health food store.
Xanthan Gum was a natural thickener. Again, Gluten Solutions, Inc. provided that. A four-ounce jar cost me $4.50. Dairy substitutes (Soy, Potato drinks), Egg substitutes ($4.95 for sixteen ounces) and Cheese substitutes (I did not use these) were also available through this company. For parents with children on gluten and casein free diets, I strongly recommend calling Gluten Solutions, Inc. to at least get their catalog…it has over 300 products in it! It was also a great way to find “other sources” of such foods.
Sauces
I did not use any of these when I cooked but again, store bought sauces of any kind were a hidden source of gluten. Gluten Solutions, Inc. had gluten free sauces for cooking. The new company I had recently found, The Gluten Free Panty, also provided things like gluten free mustard, mayonnaise, catchup. Again, I had never used any of these simply because I literally just found out about this company as I completed the writing of this book...but, I am very excited about trying some of their products.
Cookies/Crackers/Snacks
We quickly learned to take snacks almost everywhere! For most of this stuff, I went through Gluten Solutions, Inc. They had a good selection. Again, it was important to continuously read labels because ingredients did change. For example, I used to buy a particular brand of cookies for Zachary, Pamela’s Walnut Chocolate Chip Cookies, and he loved them. I bought these at the health food store when I lived in Illinois. I was always careful to read the labels of everything I bought. When these cookies first came out, they indicated, “wheat free, gluten free and dairy free” on the package. Within a couple of months, I noticed the label had changed. One of the “frees” was missing. The “dairy free”, I believed. Anyway, I made mention of it to one of the store clerks at the customer service counter. He told me he thought that I was wrong, that they only had the two “free” statements on them. I had been so fanatic about sticking to this diet and reading labels, I was SURE that they had had all three.
At my request, he finally called the company and asked if they had changed their labeling and sure enough, they had. I had several cases on order and so I had to know for sure. At that time, these particular cookies were not processed on “dairy free” machines and so, due to the possibility that a child who was sensitive to dairy may have an adverse reaction, they chose to remove that part of the label. Zachary’s favorite cookies were now out. I had to assume they contained dairy. I was not sure if the company later went to “dairy free” equipment. I did not buy this particular cookie again only because by now, I had found a replacement. I may look into it again because I know Zachary did love those! My point here, again, was that as a parent I always had to be careful, constantly reviewing labels. If something seemed different but I was not sure, I called the manufacturer before giving the product to Zachary.
Carrot Muffins – I got delicious gluten free muffins and dairy free muffins from the health food store. They were made by Natural Food Mills, Box 1434, Corona, CA 91718 (Distributor: North Farm Coop, Tel: 800-236-5880). Again, I bought in bulk and kept these frozen. I took them out on “rice days”, one at a time, as needed. I simply popped one in the microwave for about fifteen seconds to thaw, cut it up and put a little 100% safflower oil spread on it and served it to Zachary as a snack. He loved them.
Granola bars – I got these through Gluten Solutions, Inc. but they were so good that they deserved special mention. They were made by Ener-g (Web: Go to Glutensolutions.com, Tel: 800-845-8836) and were one of Zachary’s all time favorites…and mine, actually (I sneak one every once in a while…but I knew Fred did too!). These were much bigger than granola bars you bought in the store and each one had 290 calories (not good for me)... and that was great for Zachary since for him, food was for caloric intake! A pack of eight was $6.00. I kept these frozen until I need them.
Crackers – again, these are available through Gluten Solutions, Inc. but worth mention. The brand I use is Bi-Aglut. Zachary loves them and they are rice free so they are a good snack for rice free days. Another brand I use is called Hol-Grain Crackers, made by Conrad Rice Mills, Inc., 307 Ann Street, New Iberia, LA 70560 (Web: Holgrain.com, Tel: 800-551-3245). Zachary really likes these, but there are many different rice crackers out there that are available at health food stores.
Pretzels – Zachary was corn sensitive and since these were made with corn, I did not give him more than a little handful at once. They were made by Ener-g, and again (Web: Go to Glutensolutions.com, Tel: 800-845-8836).
Potato Chips - Since regular potato chips were packed with salt and that salt can have gluten on it, not to mention that the chips may have been cooked in oil used for other products, I went with a product called Olive Oil Potato Chips made by Good Health Natural Foods, Inc, Northport, N.Y., 11768 (Web: Not Available, Tel: Not Available) I think they run about $4.00 per bag. They were available in lemon, cracked pepper, rosemary or plain. Lemon was Zachary’s favorite and they had a nice “tangy” taste but all were delicious. Again, I had always been able to get these through a health food store. I used these as a snack on “rice free” days.
Potato Flyers – another snack everyone liked. These cost about $4.00 per bag. If I would let him, Zachary would eat an entire bag of these in one sitting. This snack was made and distributed by Robert’s American Gourmet, Box 326, Sea Cliff, N.Y. 11579 (Web: robgourmet.com , Tel: 800-626-7557). This was another product I had been able to get at any health food store. The company made several varieties…the ONLY one Zachary can have was the “ORIGINAL Potato Flyers”…the other varieties had cheese, or some other product Zachary cannot eat.
Chocolate bars - These are non-dairy. The brand name I used was Tropical Source and they were distributed by Cloud Nine, Inc., 300 Observer Hwy, Hoboken, NJ 07030 (Web: cloudninecandy.com, Tel: Not Available). Note of caution…since Zachary had very few sweets, he would really come running when I said “chocolate” to him. Although there was a great desire to give him more than I felt he should have, I always remained “strong” and did not give in to his “begging glances”... at times, that was very hard to do, but again, it was in his best interest not to give him too much “chocolate” since sugar promoted yeast growth. The bar could be separated into “triangles”, “squares” or “rectangles”. Anyway, I always asked Zachary if he wanted a triangle, a square or a rectangle. It did not take him to long to figure out that a rectangle was best because he got more…but I very rarely gave him that (not even once a month). A “triangle” was usually all he got…and being young, he was still fine with that. Although I did give Zachary treats like this now and then, I always found Zachary did better without them. So, they are part of his diet, but not a significant part of it. He was lucky to get two or three triangles a week. These are large bars and they cost about $4.00 each. I picked them up at any health food store.
Rice cakes – I used only the “plain” and pick those up at any food store.
Ice Cream – I used a brand called Rice Dream. The only one Zachary can have was the Neapolitan. It was rice based and he loved it…non-dairy of course! It was made by a company called Imagine Foods, Inc., 350 Cambridge Ave, Suite 350, Palo Alto, CA 94306 (Web: imaginefoods.com, Tel: Not Available). It cost about $6.00 per quart and was another product I could get through most health food stores…again, if I did not see it, I would ask and I was usually able to get it.
Ice Cream Cones – Again, I just recently found a gluten free ice cream cone available via the Gluten Free Pantry (800-291-8386). They run about $7.00 for 8 waffle cones. I have not tried these yet, but am anxious to. Zachary will be thrilled!
Dairy Free Pudding – Imagine Natural Foods, 1245 San Carlos Ave, San Carlos, CA 94070 (Web: imaginefoods.com, Tel: Not Available) made non-dairy pudding in lemon, butterscotch or chocolate flavor. These were among Zachary’s favorites as well as mine as they were great for hiding his vitamin capsules (I opened the capsule and mix the vitamin powder into the pudding and Zachary could not tell it was there). These puddings keep for over nine months (non-refrigerated) so I bought them in bulk and I could get them from any health food store.
Pop – the ONLY pop Zachary ever had was 7-Up. I found it to contain the least amount of artificial stuff, less coloring, etc. If I gave Zachary pop, it was on “rice free” days but I usually diluted it quite a bit with water ( two thirds water, one third 7-Up). Pop had a lot of sugar in it and that promoted yeast growth. I only very rarely give Zachary pop. Water alone was best for rice free days!
These were the main products/companies I used. I provided them only because I had none of this information when I started Zachary’s diet and it had literally taken me months to find these. My intent here was again, to save parents time if they wanted to consider a gluten and casein free diet and one that was low in phenols too! The above was certainly enough to get anyone started on a casein and gluten free diet.
Going through this made me realize one thing. There was a HUGE unmet need in regular food stores. With all of the people I have come across who have special dietary needs that require casein, gluten, yeast free foods, etc., you would think some food chain would have figured it out by now. Each year, more and more children were diagnosed with autism, “ADD”, “PDD”, and a whole slew of other “learning difficulties/labels”. I certainly hoped that food stores would wake up to this fact soon and start to better meet the needs of the public in general...because persons with special dietary needs were EVERYWHERE and there were A LOT OF THEM. For me, time saved away from these tasks meant I could spend more time focusing on Zachary and his special, non-dietary needs.
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