Jun 232014
 
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Nest of Baby Birds

Like a mother bird, I wanted to feed my chicks the best I could.

My husband, Fred, and I have two sons, both of whom are on the autism spectrum. My oldest son, Tommy, has Asperger’s Syndrome. My youngest son, Jamie, has Attention Deficit Hyperactivity Disorder, or ADHD. Jamie’s condition was helped by medication but Tommy just suffered and because it’s the nature of the condition, he worked diligently to help the rest of us join him in his suffering. We were all pretty unhappy. If you have a child with autism, you’ll understand the ongoing struggle to accomplish even the most basic of tasks. For us, the worst was any activity which required family cooperation. Between the Asperger’s and the ADHD we simply eliminated activities that required all of us working together towards the same goal. Something as simple as all of us working to rake the yard would result in emotional break downs, arguments and ongoing harassment that simply would not end for days at a time. It was a rough time. I prayed a lot and did my best to keep the peace.

If you have a child with autism, you’ll understand the ongoing struggle to accomplish even the most basic of tasks.

Over the years I noticed a few things that seemed to make life easier for my oldest. If I kept him filled with snacks all day long, he seemed to have fewer breakdowns. He had always been a picky eater, but when I was careful to give him snacks every couple of hours, he seemed to struggle less. If I was an hour late with a meal, I could count on an emotional breakdown like clockwork. I love my kids, and I wanted to do best by Tommy, so I made sure there were always snacks available for him. We were on a budget, so most of them were homemade. I tried to offer healthy snacks, such as fresh fruit or vegetables, but soon discovered that these didn’t make feel any better. As a matter of fact, when I only offered healthy snacks, they seemed to bring on a breakdown or temper tantrum faster. Eventually I gave up trying to give him healthy snacks and simply offered him the junk food he preferred. I gave him homemade muffins that were so sweet they were almost cupcakes. I gave him cheese and crackers, hot cheesy bread, pizza bread, peanut butter and jelly with a glass of milk, cookies and milk, macaroni and cheese, and spaghetti with cheese. He would eat a few things with dinner, usually homemade pizza, pasta or hot bread, but for the most part he lived on these snack-type foods. When he ate every 2 hours he maintained a relatively even temperament, but it wasn’t an especially kind or pleasant temperament. It was simply a step up from his angry harassing mode.

Then I learned about the gluten-free, casein-free diet online. The theory goes that when people with autism process the protein from gluten and casein their brains treat the resulting protein and peptides like opiates. It makes them almost “high” and when they run out of these false opiates they go into withdrawal. This was scary information for me. When I was feeding Tommy wheat and dairy every couple of hours I was essentially giving him a hit of his preferred drug. The years I had spent managing his food supply weren’t really helping him. I was just feeding his habit. This gave me a glimpse inside a door I really didn’t want to open. I wanted to close this door, ignore the dietary option, and find a more convenient solution.

 This gave me a glimpse inside a door I really didn’t want to open. I wanted to close this door, ignore the dietary option, and find a more convenient solution.

Secretly, however, I thought about it. If this theory were true, then the reason Tom had to snack every 2 hours was because he literally needed a “hit” of these false opiates every 2 hours to maintain his “high”. He didn’t like healthy foods like fruits or veggies because they didn’t give him the same “high” that wheat and milk did. If this was true then no wonder he had limited his food choices down to pizza, macaroni cheese, chicken nuggets and spaghetti smothered in cheese. These foods gave him the physical response he craved. All other foods were useless because they didn’t serve his purpose. They didn’t make him “high”.

…he had limited his food choices down to pizza, macaroni cheese, chicken nuggets and spaghetti smothered in cheese.

Part of me wanted to give this gluten-free, casein-free diet a try, but I had a lot of misgivings. First off, he only ate foods with gluten and casein. If I took away his favorite foods, what would he eat? He would starve to death. Plus, if he didn’t get his “hit” of wheat and dairy, his behavior would be really hostile for a while. I read online that after a couple of weeks his behavior would improve dramatically, but I had to wonder. Was it worth the 2 weeks of hostility and disciplinary problems to get there? I wasn’t sure.

…he only ate foods with gluten and casein. If I took away his favorite foods, what would he eat? He would starve to death.

My other main concern was 2-fold. First off, I didn’t know how to cook without gluten or casein; they literally made up the bulk of our diet. Secondly, I read online that it was very expensive. Tom was 15 years old at the time and I had literally spent 15 years learning to feed his habit. Learning to cook without any of his favorite foods was an intimidating option. Besides that, my family has always had to manage on a budget. Some years it’s been tighter than others, but we’ve never been able to walk into the supermarket and spend as much as we like of whatever we want.

During my weekly shopping trips I took the time to check out the gluten-free sections at my local supermarkets and was shocked at how expensive everything was!

During my weekly shopping trips I took the time to check out the gluten-free sections at my local supermarkets and was shocked at how expensive everything was! Spaghetti, for instance, is a family staple. The cheap stuff I was buying at the time cost me 60¢ a pound. Gluten-free pasta was $3.60 a pound! This was 6 times more than I was accustomed to paying. How in heaven’s name was I going to accommodate the higher food costs on my tiny grocery budget? Even more important though, how was I going to get Tom to agree to the changes? I pretty much felt like the deck was stacked against me.

Finally, after Tom experienced a particularly harrowing emotional breakdown, I decided I had to draw my line in the sand and do something about his suffering. Since both Tommy and Jamie are on the Autism spectrum, giving up gluten and casein would supposedly help them both. I knew there was no way I could get the boys to change their diet without Fred and I changing out diets too. The only way we could do this would be if all of us gave up gluten and casein together. Ugh! Still, when you love your kids you give them the very best you can, even when it’s uncomfortable, even when it’s inconvenient, even when it seems impossible. So that’s what we did.

…when you love your kids you give them the very best you can, even when it’s uncomfortable, even when it’s inconvenient, even when it seems impossible. So that’s what we did.

First I explained to my sons about the proteins and peptides and how autistic brains treated them like opiates. Tom showed immediate insight. “You mean they’re like crack right?” Yup, I told him, just like crack. Tom has always prided himself on his physical health and strength so this turned out to be the perfect motivation for him.

I told the kids we would be begin the next week, Monday morning, and that’s what we did. It was terribly difficult. None of us had any real idea what we were doing, but we struggled ahead as best we could. None of us ate a morsel of gluten or casein. We grimaced and bore the transition like a dreaded trip to the dentist. It was uncomfortable and at times unpleasant.

Then something wonderful happened.

Then something wonderful happened. Three days into the diet Tom turned into a different person. The surly, angry, harassing, unfeeling monster who had taken over my child was gone. In his place was a joyful, patient, almost affectionate child who I hadn’t seen since he was still a 2-year-old nursling. This gave me the motivation to keep going. Within 2 weeks both boys had experienced attitude changes that I had given up hope of ever seeing. By then I knew that this diet would be ours for the rest of our lives. No matter how difficult, no matter what changes we needed to make, we would maintain our gluten-free, casein-free diet for the rest of our lives.

Sooner or later however, the church had a pizza party and the boys wanted to participate. We figured things were going so well that a couple of slices of pizza couldn’t make that much of a difference. Boy were we wrong. For the rest of that day, and for 4 or 5 days afterward, all of the old behavior problems returned. They weren’t quite as bad as they had been, but after experiencing such sterling behavior it was a shock to see my dear sons falling apart at the seams again. It confirmed for us how important it was to stick to our diet.

 I asked my doctor about chronic fatigue syndrome and she said it was a possibility. When I gave up gluten and casein, my fatigue was gone.

I was surprised and pleased at the improvements my sons experienced but I wasn’t prepared for how the new diet would affect me. First off, I lost 20 pounds. Next, a terrible case of eczema that had plagued me for years cleared up and went away completely. The doctors had prescribed all sorts of things for the small, itchy, painful bumps all over my hands, but nothing had helped. Some days it was so bad I literally could not do the dishes because it irritated my hands so badly. Another benefit was that a few patches of acne on my back and legs disappeared and a small but chronic case of athlete’s food on my baby toe cleared up within a week, never to return. Pains in my joints that I had attributed to growing older went away and haven’t returned since. I used to get terribly sleepy after eating and was forced to take a nap afterward. I literally could not function unless I had a 2-hour nap every afternoon. Add to that 9 to 10 hours of sleep a night and I felt like I was sleeping half of my life away. I asked my doctor about chronic fatigue syndrome and she said it was a possibility. When I gave up gluten and casein, my fatigue was gone. I no longer needed naps and found myself fully rested with 7 to 8 hours of sleep a night. I used to wake up feeling exhausted every morning, almost hungover. Getting going in the morning was just so hard. Now I wake up feeling refreshed, have no trouble getting up, and do not experience any pain, in my back, joints or anywhere. It’s hard to believe, but these days, unless I’ve injured myself doing something foolish, or been stung by a bee, I spend all of my days pain free.

My skin problems cleared up, my pains and fatigue disappeared and I lost weight. My children became the kind, loving people I always hoped they could be. I was so flabbergasted at our positive changes that I wanted to tell everyone about the gluten-free, casein-free (GFCF) diet. I admit to being a bit annoying those first couple of years, but I’ve since settled down. I don’t tell other people unless they have celiac or autistic children of their own, or express an interest in our diet.

When I told the boys’ pediatrician he was skeptical, but even he could see the difference in Tommy’s attitude and behavior. After two years he admitted to me that for some children in his care the GFCF diet really did make a difference.

When I told the boys’ pediatrician he was skeptical, but even he could see the difference in Tommy’s attitude and behavior. After two years he admitted to me that for some children in his care the GFCF diet really did make a difference. My doctor noticed that some of my chronic conditions improved. She suggested I may have had undiagnosed celiac disease or at the very least wheat intolerance. I have since discovered that wheat is not good for me, but small to moderate quantities of gluten-containing grains such as spelt, rye, and barley do not seem to cause me any discomfort. Because of this I believe I am intolerant or allergic to wheat specifically. I’ve also come to believe that moderate to large quantities of gluten are not good for anyone.

That first year, we discovered that it was nearly impossible for Tommy to avoid all wheat and dairy at all times. I sought out digestive enzymes at the health food store and gave them to Tommy when he was in social situations where it was very difficult to avoid gluten and casein, such as church pizza parties. We found that if Tommy avoided overindulgence and then took the digestive pills the day of the gluten and casein and then twice a day for another 2 days, his behavior remained consistently cooperative. If he only took the digestive aids on the day of the party his behavior for the next week would be affected. It takes 3 days of digestive enzymes to help him process the offending foods.

Tommy takes a magnesium supplement and a daily multivitamin. I don’t know what the magnesium does, but I do know that when he runs out he’s crabby. The multivitamin is to cover any nutritional bases that would otherwise be missed. Tommy doesn’t eat meat, so a multivitamin makes sure he gets enough iron and B12. We tried a lot of other supplements, but they didn’t make him feel any better and they didn’t seem to affect his behavior.

Jamie was helped by the diet, although not as dramatically as Tommy. Jamie, like me, is able to eat small to moderate amounts of spelt, rye and barley without mishap. He’s even able to eat sprouted wheat bread such as Ezekiel bread without ill effects. When he has regular wheat or any dairy products however, he changes into a jittery, unhappy boy with poor impulse control. The digestive enzymes do not seem to be as helpful for Jamie as they are with Tommy, so Jamie avoids wheat and dairy even in social situations.

My husband, Fred, chose not to stick to the diet. He continues to eat conventional bread and sweets which he purchases for himself. He has been kind enough to eat them privately, so they don’t tempt the rest of us.

The first year of our diet was full of discovery. We started out being extremely careful of all gluten, avoiding even the smallest traces. Soon we realized that very small bits don’t seem to bother us. For instance we are able to use regular rolled oats instead of special certified gluten free rolled oats. Cereals sweetened with malt, which is made from barley, don’t seem to give us much trouble. This means we can continue to use store-brand cornflakes instead of special gluten-free cornflakes. When I read the label on foods and it states that the food was processed in a facility that also processes wheat or dairy I usually don’t worry about it. For example, the canned black beans I buy are manufactured in a factory that also makes chili beans, which contain wheat. The label makes it clear that there may be traces of wheat in the black beans. I buy the black beans anyway and don’t worry about cross contamination. For some families this may not be an option. Every family has to work out the diet for themselves. For my family, this choice seems to be okay.

After a few months on the diet I needed an easy way to identify good food choices for the kids and close family and friends who wanted to accommodate our needs. It was then that I developed our preferred method. I classified all foods into 3 categories: Red Light, Yellow Light and Green Light.

I classified all foods into 3 categories: Red Light, Yellow Light and Green Light.

Red light foods are those like pizza and spaghetti which are simply not good for my family to eat. If a food is red light, then it shouldn’t be eaten unless consumed with 3 days of digestive enzymes. Red light foods require parental permission and can only be eaten in the smallest quantities. Red light foods make up less than 1% of our diet.

Yellow light foods should be eaten in moderate amounts. For instance cornflakes sweetened with malt. One or two standard size portions won’t bother the kids, but if they eat a whole box, someone is going to overdose on gluten and the results won’t be pretty. A small amount of regular soy sauce in an otherwise GFCF meal from a Chinese restaurant is a yellow light meal. It’s fine now and then, but not every single day and not in giant portions. Yellow light foods make up about 2% of our diet.

Green light foods are both gluten and casein free. These are the ones we eat day in and day out in whatever quantities our appetites dictate. Green light foods make up 97% of our diet. In our family regular rolled oats are a green light food. If my family was extremely sensitive to gluten or had celiac disease then we would only use certified gluten-free rolled oats and the conventional ones would be yellow or red light.

If there’s one thing I’ve learned since we went GFCF it’s that each family and each individual is different. I’ve outlined the choices we’ve made, but they’re not the right ones for everyone else and they’re not written in stone. I remain flexible about our food choices and am willing to learn and change as our circumstances change. If you are new to the idea of a GFCF diet, go easy on yourself. There is a lot of information out there and you really have to test things out on your own family, to see what works for you.

Don’t be afraid to give up foods that hurt you, even if they are items you thought you could never live without.

Don’t be afraid to give up foods that hurt you, even if they are items you thought you could never live without. Once you stop eating certain foods you’ll find others, which will naturally begin to take their place. The hardest part for me was being willing to try. I had to be willing to give up the old stuff, to be empty and to trust that new, better choices would appear to fill us up. If you are currently on the fence about changing your or your family’s diet, I encourage you to give it a try. It’s difficult, it’s challenging and it is more rewarding than you can even imagine.

Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed. Psalms 37:3

 

  6 Responses to “How We Went Gluten Free”

  1. An inspiring story. I’ve noticed many folks going with GFCF for different health reasons with good results.

  2. Thanks Joanne. It worked for us. I talk to other people almost every week who have kids on the Autism Spectrum. A lot of them say they want to try it, but aren’t willing to do the work to figure out how to change their kid’s diet. It is a lot of work, but the results are amazing.

    Then the people who are divorced and have shared custody talk about how if they changed their kid’s diet during the week, but then the kid(s) go to their other parent on the weekend and eat all the bad stuff again, what good does it do? I still haven’t figured out the answer to that one. I always say some GFCF is better than no GFCF, but it’s gotta be rough.

    A lot of people (my own parents included) think it’s a big fairytale, especially at first. Then after they see the difference, it’s another story. One of the biggest things is, if one isn’t willing to cook, it costs an awful lot to stay on the diet. If one is willing to cook however, it’s as affordable as any other low-cost diet. So I blog, because it IS possible to do it on a budget. And if nothing else, I can share that with the world.

  3. Your story seems so much like mine. My oldest (now 8) was diagnosed as being on the spectrum at age 25 months. Starting from about age 2 until about age 4 when we started the diet, she would maybe sleep 5-6 hours a night… and not all in a row! We actually medicated her so she’d sleep approx 8 hours just so we could get some rest too (the next sibling followed when she was only 29 months old, so we were desperate). Once we started the diet, she went from that to sleeping a solid 12 hours on her own, unmedicated. Gluten, as it turns out, is key to her sleep patterns. We always know when she’s “gotten into the wheat” when she has several sleepless nights in a row. Casein affects her ability to concentrate and remain focused, as well as her anxiety. She’s also sensitive to soy, and any food with fermented soy is a yellow-light food for us. Things like soy milk, tofu, etc are strictly off-limits.

    Our daughter also have epilepsy, and has been on serious anti-seizure medications since she was 7 months old. She currently takes 5 daily medications to manage her neurophysiology, plus emergency (rescue) medications. But despite her medications, her autism (which as you know can cause a host of health-related problems due to the opiate effects, gut, etc) and all the other stuff she has going on, her physician has declared her in “excellent health”. I think the diet has a lot to do with it.

    We have since discovered that her 2 younger siblings are gluten-intolerant, as am I. We’re expecting baby #4 in the fall, and I am anticipating that they will also be gluten-intolerant. My husband continues to eat gluten, although usually outside of the home or in the evenings when the kids are all in bed.

    I am pleased to see you adding content again, as I discovered this website several years ago and was sad that there were no updates for a long time. God bless.

    • Wow CJ, we do have a lot in common. I am amazed that your daughter was diagnosed at 25 months. I kept asking the doctors over and over again what was up with Tommy. They would always say “well he’s within the developmental standards, so he’s just a late bloomer.” I KNEW something was up, but never could figure out what it was. I was the one who diagnosed him, using stuff from the internet. I printed off a checklist, brought it to my doctor and he said “Yup, Tom’s autistic.” I think he was about 12 or 13 when that happened. It was such a relief to be able to identify what was going on with him.

      I’m really curious about what you use instead of soy. I know there is rice milk and almond milk. But what do you do about other things? Lots of people have told me that they are soy intolerant and I wonder what you use instead?

      Do you qualify for WIC? If so, I’m wondering how WIC handles the allergies. I’ve heard some moms say that they’re pretty cooperative and others say that they are imbeciles. I’d really be interested in your perspective.

      I’m happy to be adding content again too. I’ve got a ton of stuff I’ve developed over the years, and now I have the time and energy to share it all.

      • Hey Miss Maggie,

        We use coconut a lot for milk. She’s allergic to nuts (as am I), but we both tolerate coconut. Or we adapt the recipes to just use water. We also use a product called Vance’s DariFree, I will sometimes add the dry powder to baking to kick up the nutrition like you would dry milk powder, and she likes the chocolate version for drinking as a treat. It’s very carb-heavy though, so we try to encourage drinking water and save it as treats. It doesn’t have any protein in it, I wish it did, so we sneak protein in other ways too. Fortunately, she’s taking a liking to egg whites, so she eats tons of those, and she loves beans & rice, etc. She also loves veggies, etc, so her diet is pretty varied. Her current culinary obsession is broccoli.

        We got such an early ASD diagnosis because we were on the “watch list” from her earlier epilepsy diagnosis. We were told at the time that she had a 90% chance of having some form of disability, and 1 in 3 girls with her type of epilepsy go on to have a diagnosis of Autism. Her seizures are related to vaccination (not that it “caused” her epilepsy, but it triggers episodes as demonstrated by her multiple adverse reactions – we no longer vaccinate), and she had a major regression inlcluding language after an epileptic episode post-vaccine (from the MMR – surprise, surprise) at age 19 months.

        They wouldn’t test her before age 2, so I fought hard and make a big stink to get her tested as soon as we could. They wanted to dismiss her symptoms as being attributable to her epilepsy and not a separate Autism diagnosis, so I had to pull out all kinds of research and papers warning NOT to do that with these kids because it’s often not the case. The neurologist got involved too and encouraged the child development clinic assess her. They finally relented and agreed to see her.

        Turns out she’s quite profoundly on the spectrum, non-verbal and all that, but she’s still a beautiful, wonderful little girl and we’re so thankful for her. Fortunately, she’s very affectionate and adores cuddles, hugs, etc and is fully potty-trained, so that’s a big deal for us. She’s accumulated a few other diagnosis since then too including facial tics, migraines, etc, but she copes well. Spirituality has been a big deal for her too, we’re Catholic and the ritual and cycle of seasons, etc has been very good for her. The bells and smells associated with our faith is a boon to a sensory-driven child, and she recognizes and loves Jesus. Life is good!

        We don’t live in the US, but thankfully my husband makes enough for us to live off his income and still afford our dietary needs. We do get a government supplement for my daughter due to her disability status, so that is helpful too. I do know people who have relied on food banks, etc and they try to be accommodating to diet stuff, but they are restricted too by what they get in way of donations.

        • Thanks CJ, that is exactly the sort of thing I wanted to know. We use coconut milk too, the canned stuff. It’s a great replacement for canned evaporated milk in cooking and baking. Plus it makes amazing Flan. It’s so good that you advocated for your daughter to get her the correct diagnosis. I’ve had to do the same for Tom because the medical staff, as much as I am grateful for them, is over worked, under staffed and it’s a lot easier for them to just say “it’s developmental, don’t worry about it.” That’s all well and good for them to get through the appointment, but it doesn’t help my kid in the long run.

          Faith really does make all of these challenges easier. For my son Tom, it’s really important to have a final word of black-and-white right-and-wrong. He can’t always tell the difference between right and wrong on his own, especially when he’s been eating gluten or dairy. Having the Bible as a bottom-line, definitive example of right-and-wrong morality makes it so much easier for him to discern the proper course of action when he’s in a social situation. I had no idea how much it would help him back when I was reading bible stories to him as a child, but now as an adult, he uses them to help him figure out how to live.

          I’m pretty sure my Tom was influenced by the vaccines, but I’ll never know how much or to what extent. I do know that avoiding his allergens really makes the difference between night and day for him. I have so much compassion for mom’s who are willing to make the dietary changes their children need. They are suffering, and their children are suffering, and it doesn’t have to be that way.

          Thanks again for sharing your story. I really appreciate it. 🙂

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