But something else happened, something hopeful.  Today there is new “awareness” that what people eat matters, both for healing autism and preventing it.

Dr. Martha Herbert launched a media tour for her new book, The Autism Revolution, appearing on Fox TV and national radio program.  It’s a big deal to hear this message, out in the “real world,” outside the biomed circles – very exciting.

Martha (can I call her that?) is my inspiration, she’s an M.D. and Ph.D.

Dr. Martha Herbert is an Assistant Professor of Neurology at Harvard Medical School, a Pediatric Neurologist at the Massachusetts General Hospital in Boston, and an affiliate of the Harvard-MIT-MGH Martinos Center for Biomedical Imaging.  She is director of the TRANSCEND Research Program (Treatment Research and Neuroscience Evaluation of Neurodevelopmental Disorders

Dr. Herbert earned her medical degree at the Columbia University College of Physicians and Surgeons.  Prior to her medical training she obtained a doctoral degree at the University of California, Santa Cruz, studying evolution and development of learning processes in biology and culture in the History of Consciousness program, and then did postdoctoral work in the philosophy and history of science.  She trained in pediatrics at Cornell University Medical Center and in neurology and child neurology at the Massachusetts General Hospital, where she has remained.  She received the first Cure Autism Now Innovator Award and is now on the Scientific Advisory Committee of Autism Speaks.

Not only is she accomplished and associated with the best schools and hospitals, but she also she studied “evolution and development of learning processes in biology and culture in the History of Consciousness program.”  Wow!  Brainy and consciously evolved—I love it!

The video of Dr. Martha Herbert on Fox and Friends.

Dr. Herbert explains how “the brain is not malformed, the brain is irritated.  Diet is big because it triggers the immune system and provides the ingredients for our cells.”  She also says, “you need to reduce the irritation and the inflammation in the brain. I’m not talking drugs. I’m talking about the same kind of anti-inflammation diet people have read about.  Outstanding high-density nutrient dense foods.  Fruits and vegetables.  Lots and lots of the rainbow diet. Every color of the rainbow in your daily diet.  That’s going to give the body the ingredients it needs to start fixing things.”

Click here to view the video on YouTube.

What a day for autism!  A wonderful gift for families with autism on Autism Awareness Day, the gift of awareness that your kids can get better! And that healthy food and nutrition are imperative! These are thing you can help influence.

Since before I spoke at my first DAN! (Defeat Autism Now) Conference, I remember resonating with Martha’s presentation on autism as a whole body disorder (which got me teary eyed).  I’ve always connected with her message.  Once again, I’m excited to be aligned – on this important topic – the power of food to heal autism!

Martha joins us in Boston

I’m thrilled and honored that Dr. Martha Herbert will be speaking at our Food and Nutrition for Autism learning event in Boston on April 15^th.  Learn more and join us: http://nourishinghope.com/east-coast-tour/

Check out Dr. Martha Herbert’s new book, The Autism Revolution, at: http://theautismrevolution.com/

Playdough is a fun and creative art medium.  However, for gluten-free kids, Play-doh is not an option, as Play-doh brand contains gluten. Since gluten can absorb through the skin and (if your kids are like mine) kids often eat playdough, so gluten-free playdough is the solution!

I have made many batches of playdough – some a total failure – so I’m here to share my learning and the recipe that works every time.

3/4 Cup White Rice Flour
3/4 Cup Cornstarch
3/4 Cup Salt
1 Tbsp Cream of Tartar (same thing as tartaric acid powder – NOT tartar sauce)
2 tsp olive or seed oil
1 ½ Cup Water, hot but not boiling
Food Coloring, as desired

Directions:

Add all dry ingredients in a pot.  Add vegetable oil, then the water, and continue to mix until thoroughly combined.  Then turn on heat.  Heat the pot on the stove over low heat – stir continuously for about 3 minutes. When the dough pulls away from the sides into a big ball, place dough into glass bowl

Once cool enough to handle.  Divide into 3-5 pieces.  Add several drops of natural food coloring to the ball and massage until you get the color you desire.  I like to make an indentation in the ball, drop in the food coloring, fold the ball over so the color is in the middle, and slowly knead until color is blended.  If the dough is too wet, add cornstarch.  If it’s too dry, massage in a bit of water.

I find that when I add coloring it gets a bit too wet and sticky. I usually let is dry out for a few hours here and there (maybe 2 or 3 hours a few times – too many hours and it will get crusty around the edges).  Then it’s the perfect texture and not sticky any more.  While you can also knead a bit of cornstarch in each batch, if you have a bit of sensory sensitivity like I must, you may not like that – it’s a bit tough for me so I use my palms.

Store in an airtight container.  I do not store mine in the refrigerator and it stays very fresh.

These are my hardboiled egg molds (that I got at a Japanese market) used as playdough molds.

I love synchronicity.

I’ve been writing for the Autism File Magazine for a few years now. In a recent telephone conversation with the Editor, Rita Shreffler, we were tossing around ideas for articles and I mentioned “camel milk.”  Rita said that Christina Adams just finished an amazing article on camel milk that would be out in the next issue!  What a surprise!  Camel milk is not that widely known, and I was so excited that Christina, one of the first people (possibly THE first) person to ever import it for medical reasons, had written an article!  I was eager to speak with her right away!  I had recently written an article on camel milk for my blog, so I wanted to talk with the expert herself! So I called her.

After chatting, we decided that conducting an interview (and posting the audio recording) would be a fun way to share this information with busy moms! (did you know I’ve done radio for the past nine years?)

It’s 72 minutes of fun, intrigue, and hope!  Here are a few highlights:

• Christina is the first person in the US to get camel milk imported for autism
• Her first shipment gets dumped on the tarmac
• She befriends someone at FDA (something I don’t think I could do!)
• Christina shares the wonderful healing support camel milk offers her son
• Christina announces breaking news on camel milk’s use for a serious disease currently untreatable

Remember to pick up a copy of the Autism File Magazine, April/May issue, on stands now, or subscribe and have it delivered to your door!  This issue has many wonderful articles.  Today I was talking with a colleague, Karen Hubert, who is the subject of my article this month on yeast overgrowth – and we both agreed – there are SO MANY good articles in this issue.  A few of my favorites:

• Got [Camel] Milk?: Anecdotal evidence suggests it may improve autism symptoms, but getting it from the desert to your door isn’t easy, by Christina Adams
• The Folate Factor, A newly discovered disorder may play a role in autism, by Dan Rossignol
• Juggling Act: A full adult life means many things if your child has autism, by Kim Stagliano
• Can I say mine? Yeast, Your Child, and You: Given its ability to affect multiple systems in our bodies, and cause many varied symptoms, yeast overgrowth can create a serious health crisis, by Julie Matthews

Here is the audio recording of the interview

DOWNLOAD the Mp3 HERE

TRANSCRIPT below – Here is the beginning on our interview…

Julie: I’m Julie Matthews. I’m a certified nutrition consultant for Nourishing Hope and we have Christina Adams today. I am so thrilled to have her – she is the author of “A Real Boy,” she has a Masters in Fine Arts and Creative Writing, and she has an amazing book. A Real Boy: A True Story of Autism, Early Intervention and Recovery, is from Berkeley Books and Penguin Press. It’s a successful memoir available on Kindle. After a career at the Pentagon and in aerospace, she turned her attention to autism when her son was diagnosed at age 2. She lectures nationally and consults with international scientists in health and camel milk. Her credits include National Public Radio, The Washington Post, Child Magazine, The Los Angeles Times, The Los Angeles Times Magazine, Orange County Register, Autism File Global Magazine and literary magazines. She consults for small pharmaceutical information firms and is a parent advocate.  Welcome Christina!

Christina: Well, thank you, Julie.

Julie: I’m really excited to have you here today because camel milk is such an interesting topic. Just in the last six months, it has exploded and you have been doing this for so long. I can’t wait to get your larger historical reference and information about what’s going on. But just in my time, I only found out about camel milk about a year ago at a conference. A mom came up to me and said, “Hey, you need to check out camel milk.”

“Oh, no, camel milk is milk – it’s all casein, it’s all wrong, I can’t do it!” She nicely said, “Well, it’s very different, you should research it.” For me, what happens is if I hear something more than once, then something in the universe tells me I need to look into this further. A number of months went by and I didn’t do anything and I got an invitation to join two moms on their camel milk group on Facebook. So I decided okay, great, that means something. I actually met the original mom and she told me about it. She’s also in this group. I learned all sorts of things – I started researching it, looking into it, hearing what these moms were saying about it, and thought it was unbelievably amazing. I did my own research, I read a bunch of scientific studies, and I wrote an article on it on my blog, and at that time–I certainly don’t take credit for all this—there were a bunch of people in my group that had asked me about it, for my posting as well as it kind of took off in this group that started doubling in size. And before you know it there wasn’t enough camel milk to go around, so that’s a new challenge we were having. But I want to hear that it holds some great promise. Parents had been seeing some great results, so I am really excited to have you, who’s such an expert and long-time user sharing your knowledge and what you’ve learned about it.

Let’s see – maybe we should start with the beginning – and your story. Maybe you can share some about the story with your son and how you first got introduced into the subject.

Christina: Thank you, I would love to – and what you said about the universe kind of bringing something your way, it’s as if to put yourself in certain circumstances and sometimes these amazing things happen.

In 2005, right around that time when I had my book coming out, I happened to be at a children’s book fair in Orange County, California, where I live, and I saw a camel standing at a pen. I thought, “No one’s riding that camel, so why is a camel in a children’s book fair if no one was riding it?” So sort of being a nosy-type writer person, I went over. That’s when I found out that there was camel milk, and they were making soaps and lotions out of it. But not settling for that answer, I asked the person, “What else do they do with this milk?” And he says it’s used in hospitals in the Middle East for premature babies, it’s supposed to be non-allergenic. That was enough to trip off this line of inquiry in my mind. I just had this really strong feeling that this would be an excellent product for both children and adults that perhaps had allergies and other issues, because my own son having problems with so many foods and being in the autism spectrum, that I have been living with forever – no good dairy substitute. So I went home that day, started looking up camel milk on Pub Med. But there was hardly any information. There were very few, little bits of reports here and there, mostly from hospitals and there was no mention of autism. Maybe allergies or trying to make cheese, that kind of obscure thing. So I printed them out and right after that, that’s when I became separated from my husband and life became a bit more challenging and different. However, I never let go of the camel milk instinct that I had.

Then I started researching it more, in that winter of ’05, and then I just kind of had a strong feeling, still thinking this could be really important to him in some way. Eventually, I didn’t know about this, but I found that article written by Dr. Reuven Yagil that had talked about his use of the milk on a child with autism and how he got a good response, and it was an ‘05 paper but I don’t think I’d seen it until early ’06. So I thought after that, I knew this could potentially benefit my son and now this is kind of proof to me that, wow, somebody out there had the same instinct. They did something and tried it out.

Now I got obsessed with getting the milk, naturally. I had a friend who was from Pakistan and he was going to Israel and so he brought some milk back for me. But it was dumped at the dock at JFK because I didn’t know how to properly get it in the country at that time. There were a lot of strict rules for products from international destinations, of course, because of potential disease issues and things like that. I just kind of kept researching it and finding out everything I could. Then in early ‘07 I actually taught a little class in a university to a business group to try to see how you would treat this product – how you would treat it to keep this business up and running? I was well aware at that time I had a lot of barriers – camels are hard to get, they’re not the easiest to milk, and there were some other regulatory issues that make it quite difficult.

I was still kind of focusing on that, then I remembered, “Hey, isn’t there a camel place somewhere in California?” It turned out, the man I had met–the one that told me about the camel milk on the children’s fair–was Gil Riegler, who with his wife Nancy runs OASIS camel dairy in the nearby San Diego California area. So I called them up and convinced them for me to come down and talk about the milk. It turns out that I had already been in touch with some scientists in Israel who are wonderful people, and when I talked to Gil about that, turns out his brother lived next door to one of the people I had been already talking to in Israel. The camel world is a small, tight network and I had made great connections there and I learned more about camels.

But then to back up in ’06, I had begun these conversations with scientists, because I had called up Dr. Reuven Yagil. And he very kindly, even though I called him very late at night, led me to Eyal Lipshitz, who is a wonderful man who owns a camel dairy in Israel. So I made contact also with someone who advises him, Dr. Amnon Gonenne, a very eminent biomedical scientist in Israel and America as well. We developed a wonderful mentoring network where he (Dr. Gonenne) mostly mentored me about camel milk and also I shared some information with him about autism. Together we had some wonderful conversations, kind of illuminating connections between camel milk and autism, and the difference in the way they interact. After I talked to everybody, I was able to get some milk from Eyal from Israel and put it on ice.

I got the milk late ’06 or early ’07 but didn’t give it until the middle of ’07 because I was going through a very horrible divorce situation, with my ex-husband, who happens to be an attorney. Throughout this dark time, the camel milk had been quite an inspiration to kind of keep me going, and focus on something larger than those problems. Now, in ’mid-07 when I finally met a wonderful man who is my husband now, and a great stepfather, he said, “Why don’t we give your son this camel milk that’s in the freezer?” And I said, “It’s about time, isn’t it?” And so in ‘07 my son had been developing some problems. He was only nine at the time. He had always been doing great, but he would develop these behavior breakdowns where if he didn’t eat about two hours, two and a half hours, suddenly his behavior would just deteriorate and we had to kind of shove food into him to kind of stabilize him. I had never seen that before and it was really frightening to me, as there are diabetes on both sides of his family. I was concerned there was some sort of issue surrounding that. So when we gave the camel milk, it was one night at bed, half a cup with cereal. And the next morning we woke up and we had a changed boy. He was having–although he’d always had good language since all of his intervention worked really well–he was being emotional and loving even more, he was having great complex conversations and introspection, pragmatics were even better. At the breakfast table that morning, it was amazing; he was calmer, more aware, focused, with self-direction. At the time, his behavior had become so bad because of whatever was going on biologically, that he couldn’t even pay attention and cross the street anymore, so within a couple of weeks of the milk, he was crossing the street and being in parking lots totally fine by himself again. It was just really one of those things you just can’t believe it until you see it.

Julie: So after that I’m assuming you, thought ok, there’s obviously something big to this, and at that point, was ready to hunt camel’s milk. Since it’s not so easy to get, probably I’m guessing you thought, ok this is good, let’s keep going and then you had to figure out how you’re going to get milk.

Christina: That is [true]. But since I had already gotten some and I met some people that had known how to get it into the country, I kind of took a little bit of inspiration. My thought was, I’m going to get a doctor’s letter that is going to justify getting this into the country. Which I, of course, did get the first time [I brought it in]. I thought, I really need to formalize this. I got a doctor’s letter that was a little more complicated and explained the benefits of camel’s milk, and what it’s for. And then we were able to equip the person that was going to bring it to me from Israel with the letter. We had to pay part of the ticket or a whole ticket, depending on who was bringing it in. The amount varied as well, which was pretty much, so if you wanted to get two whole suitcases in, which is the maximum a person could bring if they didn’t bring much of their own luggage, then that was a lot of bottles. Basically suitcases filled with frozen liter bottles. So it was very risky. Because you would get the doctors letter and buy the person’s ticket, which from Israel from the US would be $1400US.

Then you would have to pay for the milk, which I would get it from Eyal at the Milk From Eden camel dairy from Israel. They would pack it that morning, send it to the airport. You’d hope there weren’t any problems. You’d hope the plane didn’t get delayed and the milk would stay frozen, all nestled next to each other down in the belly of the plane. Then you’d pick it up and hope whoever was coming with it would get it through US Customs okay with that letter. And then you’d finally wait and they’d roll off the airplane and there were your precious suitcases.

Julie: I bet your relief was indescribable after all that. Now did you ever have any problems when you had this whole system down? Did you ever have problems after that?

Christina: I’m very fortunate we have never had any problems and I have a wonderful person with the USDA in Los Angeles who told me—I told him what

I was doing, he was very sympathetic—and he said, “Well you need to make sure that this is going to continue to work for you. So he advised that I get in touch with the Washington headquarters of the USDA, which I did. And that’s when I had to explain the whole thing to this very kind woman. A very serious, official woman, but a very kind woman, who, when I explained the whole thing, sent the letters and all the kinds of paperwork they needed. She authorized a shipment and I was very grateful. But then she only authorized a certain amount of bottles. Know that I was going to pay the ticket price of the whole thing anyway, I kind of asked her to reconsider—and to authorize the full load. And she actually did.

[That's the end of the transcript...]

Here is the audio recording of the full interview

DOWNLOAD the Mp3 HERE

My wife, Julie Matthews is among the worlds leading nutritionists specializing in autism, as well as healthy pregnancy and babies. She knows a thing or two about making safe, quality food choices for herself, our baby, and her clients.

It’s perfectly legal to purchase and consume raw milk in California, and legal to own a share of a cow or goat.  City dwellers contracting with farmers for direct access to healthy food is a sacrosanct relationship dating back to the dawn of urban living.  I’m among countless San Francisco denizens who engage in this practice, be it for veggies or dairy.

But recently, government officials are interfering with citizens’ constitutionally protected right to choose what they eat.  Our Government seems to think that we are STUPID people who are unable to engage in private contracts and make our own FOOD CHOICES and that we need to be protected…from ourselves.

I disagree.

Here’s the news story that ran on KPIX Channel 5 in San Francisco, local CBS affiliate. Find the original story here.  Also see JULIE’S COMMENTS BELOW…

From Julie Matthews.

Raw milk has numerous nutritional benefits, and research studies specify its advantages over commercially produced, hormone containing, enzyme depleted, pasteurized milk.  Many adults and children cannot tolerate pasteurized milk; yet have no challenges drinking natural (raw) milk.   When sourced from a clean farm and healthy herd – akin to mother’s natures’ best work for centuries, raw milk is exceedingly safe and nutritious.

To be sure, motherhood is fraught with tough, sometimes risky decisions.  Life itself is risky: crossing the street, playing in a pool, eating food.  Nonetheless, the choices we make as parents are…ours to make!  We do not need the government to protect us.

The guise of protection always accompanies reduced freedoms.  In the news story, you’ll hear the sentiment of the California Department of Food and Agriculture; on the one hand saying the wish to encourage my close relationship with my farmer, but on the other – choosing to interfere in my relationship.  Hogwash!

I know better than they do about what’s best for my family! And I’m not stupid – as the state seems to imply they need to save me from myself!

Despite the insulation in the news story, there is NOTHING illegal about herdshares in California.  A herdshare agreement is a private contract between two private individuals.  The state of California is now trying to regulate these private contracts, reinterpret laws, and force family farmers out of business or force them to become a commercial dairy.

Why?

• Has there been a dangerous outbreak?  No
• Has this milk ended up on grocery store shelves?  No
• Has there been an incident with a herdshare in California? No

The CDFA claims it’s a “food safety issue.”  Yet, there is no public safety issue because herd share milk exchanges hands only between private parties, not the public.

I’m insulted.  As a Certified Nutrition Consultant, it seems that I may know more about the benefits and safety of raw milk, than most state and federal regulators.  But that is not the point.

The point is – it’s none of the state’s business, and we mothers will not allow government regulators to dictate what our family can and cannot eat!!!  What’s next, regulation of breast milk?  Babies might need government protection from RAW breast milk; after all, who knows where those boobies have been, or what mom’s been eating?  Seriously!

We must not tolerate this tyranny.  On the state and federal level we need to vote for leaders who legislate based on the constitution and who believe in liberty and food freedoms for everyone!

Congressman and Dr. Ron Paul supports raw milk—he even introduced a bill to repeal the inhibition of raw milk transportation across state lines.  I will be writing more on Ron Paul soon because when our food freedoms are threatened we cannot separate food from politics.

Please share your thoughts and experience with raw milk.

If you are a mom that feeds your family raw milk, we’d love to hear your story.  If you are a farmer or regulator, please share.

See our Earlier Blog Entry, Radio Interview, and Newspaper Story about this issue – BY CLICKING HERE

ALSO…See what Julie said about Junk Food, also on KPIX News (Video) BY CLICKING HERE

A few RESOURCES for Learning About Raw Milk (MANY more online!)

• http://realmilk.com
• http://articles.mercola.com/sites/articles/archive/2011/08/31/us-government-data-proves-that-raw-milk-is-safe.aspx
• http://articles.mercola.com/sites/articles/archive/2004/04/24/raw-milk.aspx
• http://www.farmtoconsumerfoundation.org/fsr/index.htm

[This is the guest post in our ongoing series: Getting Your Hopes Up: Stories of Healing Thru Diet and Nutrition. Each month we post stories directly from mothers and fathers, on their experience using food and nutrition to help heal their child with autism, ADHD, and other developmental delays.]

By Terri Burges Hirning

Whenever I tell people that my son (8 years old) is recovered from Autism they say 1) they are shocked that he had a diagnosis of Autism at one time and 2) they didn’t think Autism was something that you could “recover from.” As we started down the path of understanding the biochemistry involved in my son’s diagnosis and all that it entailed, we would get a crash course in just how important diet is for the brain in addition to the obvious, the gut.

I began to hear the phrase “the gut is the 2nd brain” and as we made changes to my son’s diet I began to see that with chilling clarity. We started by removing dairy when he was 2 1/2 at the advice of my friend/occupational therapist. My son was truly addicted to dairy, he wanted milk more than he wanted food! I learned that often what we are intolerant to we crave. That was true with my son. I started tracking his behaviors with the foods he was eating. All of the additives in our foods, that in many cases were forms of MSG even though they don’t have the label of MSG, were wreaking havoc on his developing brain and therefore his behavior, sleep, interactions with others, etc. I began cutting out the over 200 forms of MSG, trans fats, dyes and dairy. He went through detox, which was pretty intense. But, the end result was a child who was sleeping better and not having as many tantrums. By his 3rd birthday I had removed gluten. After some extensive testing we found widespread inflammation in his little body just prior to his 4th birthday. We also targeted IgG food allergies, which were contributing to that inflammation. We also found that he had very high oxalates. While gluten free and casein free (GFCF) cooking was a way of life by now, throwing in another variable like oxalates was challenging. That is where I met Julie Matthews, through a private consult. I would later hear her at many DAN! conferences where I kept trying to learn all I could to help heal my son.

At first this journey was just about my son. But each conference I would go to and hear Drs. and researchers and nutritionists all talk about the role of diet in disease. When I heard about the stimulation of the immune system in many of us within 20 minutes of ingesting gluten, I knew I had to implement this for our whole family. I began connecting the dots with the complaints many of our family members would make about their arthritis, chronic fatigue, inability to lose weight, etc. They were all facing auto-immune issues without even knowing it! And if we didn’t change something up, that’s where we would be someday too! We had already seen so much improvement in our son with the removal of foods that he was intolerant to. When he had infractions his behavior swung wildly, aggression, tantrums, screaming was what we ended up with. Who says food doesn’t impact the brain? But I didn’t know what to expect for the rest of my family. My daughter was just a few years old when we removed gluten from the rest of our diets. She had eczema on her feet, which was brushed off with “put on cortisone cream” by our then-pediatrician. Once we removed gluten the eczema completely resolved! What we eat impacts more than just our digestive system.

But this knowledge was so empowering! I started researching just what many of these ingredients are that we commonly eat in everyday items. We would eventually eliminate almost everything that came in a box or can. Most of our meals are homemade and yes it can be time consuming but I have said from the beginning that I would rather spend that time cooking rather than dealing with my son’s meltdowns due to these harmful ingredients. I began to understand that many of the oils used in packaged foods (even the gluten free ones) are really not healthy at all! We replaced most oils with coconut oil, which has largely been villanized for years. The result? Increase in mitochondrial function for my son and I. Mitochondria are the powerhouses of the cells and many times that functioning is impaired in children with Autism. Since mitochondria come from moms, many moms of children with Autism also suffer from mitochondrial dysfunction – quite commonly in the form of chronic fatigue. I also started losing weight very easily! My husband’s previously (very) high cholesterol has normalized after years of pharmaceutical use with no such change. He is now off ALL medications and healthier than ever before!! We switched to organic grass fed beef and organic chicken. We try and eat organic whenever possible. We buy through co-ops and when things are on sale and stock our freezer. We only use Eden Foods canned goods since they are the only manufacturers I know of that don’t use BPA lined cans.

When we look at how we – as humans – used to eat it is really sad to see how far away from that we are right now. But, by making these changes I can feel good about my family’s future!! My 13 year old step daughter will often come to us for her visits with stomach complaints and digestive issues. After just a few days of eating our way those issues will resolve.

Diet is powerful. I believe this is the foundation for health or illness, and that depends on what you choose to put into your body 3 times a day (at least). I am sure that to many we are “extreme” when it comes to food. But, to have my son tell me he loves me, play with his sisters, and just be a “typical” 8 year old tells me that all of this is worth it. The changes that can come are profound and to see diet’s impact on the brain and development is amazing.

Note from Julie Matthews: After writing an article for the Autism File Magazine on traveling with food allergies (out in the June/July issue), I spotted this incredible post from a mother on a GFCF board.  After reading a lot out there on traveling with special dietary needs for my article, I knew a gem when I saw it!  This is an incredibly informative piece from Lisa, and I’m grateful she has offered to share it on Nourishing Hope for all of you to enjoy!

Last week, we went to Disney World.  My kids have a lot of food allergies.  I am allergic to milk products.  I thought I would document our dining results while it was fresh in my mind so that I can share it with others.  This kind of information would have been helpful to me before we went.  Overall, once we learned the system, we had mostly good experiences.

BACKGROUND

My two kids’ diet is free of gluten, casein, soy, peanuts, preservatives, and all things artificial.  I am dairy free.  We decided to try to eat all of our dinners and some lunches at Disney.  We stayed in a cabin at Fort Wilderness campground so that we could have access to a kitchen.  We took food with us for breakfast and for the kids’ lunches.  We ate all of our breakfasts in the cabin.  At the beginning of the week, we took their lunches with us into the park.  Later in the week, we bought their lunches from Disney.  (We also took a lot of healthy snacks with us.)

TYPES OF MEALS

If you buy the basic meal plan, there are 3 types of “meals” included for each person.  This includes:

• 1 quick service meal per day.  (This is where you get in line, order with the cashier, and then carry your own food to table.)
• 1 table service meal per day (This is where you sit down at a table to order and the food is brought out to you.)
• 1 snack item per day

QUICK SERVICE STEPS

The steps that you need to follow if you have food allergies are:

1. Go into the restaurant and find a manager.  They are usually walking around the lobby area.  If you cannot find one, ask a cashier to locate the manager.
2. The manager will bring you a book that includes every food item that they have available in their store.  It lists the ingredients for all food items.
3. You pick out what you want and tell the manager.
4. The manager goes with you to the cashier and together you place your order.
5. Wait at the counter until your food is prepared and brought to you.  At some locations, the manager would tell us to go ahead and sit down and they would bring our food to us.  Your food will take longer because they cook it special.

 QUICK SERVICE COMMENTS

1. The food items available vary from one restaurant to another.  Most have burgers and Udi’s buns available.  For sides and dessert, most have a bag of carrots and a bag of apples.
2. One place had some incredible chicken fingers that we could have.  But not all places carried them.  One store said they were going to start carrying them, but had not yet.  Their gluten free chicken fingers had both milk and soy in them.  (Restaurantosaurus is the place that had the really good chicken fingers.)
3. One place did give us a voucher to get a dessert at a snack cart since all they had to choose from for dessert was the apple slices. (more on snack cart later).
4. Some cashiers are more knowledgeable than others.  One caught the fact that I was ordering a sandwich that had cheese in the bread and had them prepare it on different bread.  I had not consulted the manager and the food book because normally breads do not bother me.

 TABLE SERVICE

1. It is helpful to make reservations ahead of time for all table service meals.  But don’t’ expect them to have done any preparation unless you somehow contact a chef at that restaurant ahead of time.
2. Assuming you made reservations, your ticket that is put on the table will indicate that you have food allergies.  If you did not make reservations, inform the waitress that you have food allergies as soon as she comes to your table.  The waitress will inform you that a chef will come by to discuss the options with you.  The sooner the chef comes to your table, the better.
3. The chef will come to your table and share with all of the food choices and take your order.  The waitress will take the food order for anyone that does not have allergies.

 TABLE SERVICE COMMENTS

1. You will probably have to wait a while for the chef to come to your table.  At all of the places we ate, there were apparently many families with food allergies and only one or two chefs that could come meet with you.
2. Some chefs are more knowledgeable than others.  One place the chef brought out Rice Dream Ice Cream to see if it was OK.  I pointed out to him that Soy Lecithin was in the ingredients.  He did not realize that.
3. Some chefs will bring the package out for you to read the ingredients.
4. One chef went on-line and looked up the ingredients of something to make sure it was safe for us.  This resulted in us waiting a long time to eat, but the food was safe.
5. Some places have more variety to choose from than others.  For dessert, some places only had apples or grapes.  Another place had Enjoy Life Cookies, some safe gummies candy, and Enjoy Life Chocolate bars.
6. I complained at one restaurant.  The manager that I spoke with told me that if you have a particular item that you want, you can contact the restaurant ahead of time and request that item.  Sometimes the chef will be able to accommodate this request.  She stated that one chef drove to the local Whole Foods to purchase something for one family.  We never made a special request.
7. Some restaurants serve more expensive food and therefore you have to use two table services credits for the meal.

SNACKS

Many things can count as a snack including a bottle of water, a bag of apples, and a bag of carrots.  We were happy to discover that most snack carts had Edy’s Strawberry Fruit bars that were safe for me and my kids.

OUR TABLE SERVICES CHOICES

Plaza Restaurant (Magic Kingdom)

I would not do this one again.  They only choices that they had were the same food items that you could get at a quick service restaurant.  We all had a burger, carrots, and grapes.  We could have eaten this same food at a quick service place and saved the credit for a place that required two table service credits.

Hoop Dee Doo Musical Review (Fort Wilderness)

I would not do this one again. Food is served family style here.  There is a performance on stage while you are eating.  While we enjoyed the show, our dining experience here was pretty bad.  I would not recommend it for families with food allergies.

First, when you sit down, everyone has a salad already on their table that we could not have.  So, while everyone else ate their salad, we waited about 30 minutes for our salad to show up.  There were so many families with allergies and only one chef going around talking to all of the tables.

Because the food is family style, they have very limited choices to offer you if you cannot eat what everyone else is eating.  So, again, while everyone ate their main entrée, we waited and got our food when everyone else was almost done.  Then they quickly tried to get us to eat our dessert and get us out of there.  My kids were not happy with their food at all and left hungry.

The tables are small and there was not room to keep the regular food away from my kids.  We also had a very rude waitress, but another waitress kindly stepped and tried to help us solve our table space problem.

Garden Grill (Epcot)

We had a great experience here!  I would recommend it.  Four different Disney characters rotate around and come to your table while you eat and you can take pictures with them.

The chef that we got and the waiter were both very knowledgeable of food choices. They had more to choose from and we found enough to fill up our kids.  They had warm Udi’s rolls that were very good!  They had several different dessert choices.  The chef did everything he could to make us happy.  He came out to our table several times to check on us.  It may not be the same with every chef.

Fulton’s Crab House (Downtown Disney)

We had a great experience here!  I would recommend it unless you have seafood allergies.  This restaurant serves a wide variety of food so there was more to choose from.  The chef that we got was very accommodating and willing to prepare a combination that made each kid happy.

Cinderella’s Royal Dinner (Magic Kingdom)

We had a great experience here!  I would recommend it!  You get your picture taken with Cinderella before you go in and get copies included in the price.  It is expensive.  Four different princesses come to your table and you can take pictures with them.

Our chef was very knowledgeable and had enough variety to choose from that we all were happy.  They brought extra food to my son who is 10 and eats a lot.  They had cup-cakes made from Namaste cake mix which was a huge success with my kids (after all of the apple slices and grapes at other places).

 OTHER

1. We did give our kids extra digestive enzymes to help in case of cross-contamination or if something was not actually allergen free.
2. You can order food ahead of time and have it delivered to your room at www.gardengrocer.com.  They carry some allergen free items like Enjoy Life Cookies.  They carry a granola from Bakery on Main that is gluten/casein/soy free and we loved it!
3. In Downtown Disney, there is a Baby Cakes located in Pollo Campero.  They carry GFCFSF desserts.  We purchased both some chocolate chips cookies and some cupcakes.  We all thought they were wonderful!
4. We took our own ketchup with us each day.  We used these tiny zip lock bags that you buy to put pills in.  My kids will eat more things if they can dip it in ketchup.
5. We took two boxes of food with us. We checked these with our luggage.  For us, this was cheaper than shipping it overnight.  We buy meats from Applegate Farms that come in a Styrofoam cooler inside of a shipping box. We save these and use them when we travel.  One direction, one box was opened by security but sealed back.  The other direction, neither box was opened.
6. Several places I suggested that they need to add some items to their choices to accommodate more people with allergies.  I suggested that they need to carry Earth Balance that is soy free.  One place had the dairy free, but not soy free one.  I explained that they could accommodate more people if they just switch to the soy free one.  I also suggested that they carry So Delicious Ice Cream.  I explained that soy is in Rice Dream and is one of the top 8 allergens.  But coconut is not one of the top 8 allergens.
7. The whole park is peanut free (and nut free I think).  One chef said that the people who purchase may think that coconut is in the nut family, although it is not.
8. Our diet for the week was much higher in carbs and natural sugars than we would normally eat.  They had very limited vegetables available that my kids will eat.
9. Other- I normally get motion sick on a lot of rides.  I used these acupressure bracelets that a friend recommended.  I do think that they helped.  Some rides did not bother me that normally would.  But, don’t ride the Mission to Space- Intense/orange if you get motion sick.  I decided to take the risk and try it.  Big mistake!
10. I am going to try to figure out who at Disney I can contact to provide my feedback.

Lisa Meili is mother to DD – 7 and DS – 10.

Photo credit: Sean MacEntee, Flickr, Creative Commons

Hooray, another scientific study that validates what autism parents and biomedical autism practitioners have known for years: that children with autism have higher rates of medical conditions.

Autism parents globally have shouted from rooftops (and to their doctors!), “My child is ill, help me!” Routinely, they have been ignored – mainly because the prevailing perspective of autism does not accept ASD as a physiological condition. Because of this, millions of children don’t receive common sense treatment. This ignorance must end!

A new study by Schieve, et al. published in Research in Developmental Disabilities, indicates that children with autism (as well as ADHD and other developmental delays) have higher rates of medical conditions than their peers. These medical diagnoses include: asthma, eczema, headaches and earaches, food allergies, and diarrhea or colitis.

The study compared children with developmental disabilities to those without, and those with autism to children with other types of developmental disabilities.

It’s a substantive finding, involving a large sample size: 41,000 children aged 3 to 17 years. 5,469 children had one or more of the following diagnoses: autism, intellectual disability, ADHD, learning disability or other developmental delay.

According to Schieve (in an article she published at AutismSpeaks.org), “As a group, these children (with developmental disabilities) had higher than expected rates of all of the medical conditions we studied.” Specifically, they were:

• 1.8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,
• 1.6 times more likely to have had eczema or a skin allergy during the past year,
• 1.8 times more likely to have had a food allergy during the past year,
• 2.1 times more likely to have had three or more ear infections during the past year,
• 2.2 times more likely to have had frequent severe headaches or migraines during the past year, and
• 3.5 times more likely to have had frequent diarrhea or colitis during the past year.

These increased rates of health conditions were true even for children diagnosed with ADHD or learning disability, but not diagnosed with autism or intellectual disability.

As an autism nutritionist that lectures about the influence of food on biochemistry, the gastrointestinal system, and certain physical symptoms common with ASD, one particular finding stands out to me.

When they compared the developmental disability groups to each other: “Children with autism were twice as likely as children with ADHD, learning disability or other developmental delay to have had frequent diarrhea or colitis during the past year. They were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.”

So many parents around the world are frustrated, and too many children needlessly suffer, because when gastrointestinal symptoms are described to “mainstream” physicians, they do not “see” what their paradigm does not believe. Therefore, I all too often hear from parents that their child’s gastrointestinal issues (such as chronic diarrhea) are dismissed by their doctor as “just the autism.” Symptoms and solutions are being ignored, while children go without the medical care and insurance coverage they desperately need.

This information is vital, and can be life changing for many. Schieve’s study demonstrates that children with developmental delays need MEDICAL care, and that they CAN be treated.

Many of the conditions highlighted in the study  typically involve the immune system (asthma, allergies, ear infections) and gastrointestinal systems. As I explain in my book, Nourishing Hope for Autism, there are several genetic conditions and environmental assaults that lead to and/or exacerbate the malfunctioning of these systems. It’s a complex situation where genetics and environment play a role, and these systems (immune and GI) impact each other in a vicious cycle, and often include further factors such as detoxification challenges, metabolic concerns, and nutritional deficiencies.

It’s good news that studies like this come out – and good news that the influential organization Autism Speaks is sharing it. Indeed, they require hard science to overcome their historic denial. As the medical community and key autism awareness advocates inevitably recognize these underlying medical conditions, address them accordingly, and recommend “do-no-harm” interventions like diet changes and supplementation, children everywhere can get better.

Why change diet? Because ASD children routinely present with multiple sensitivities or allergies related to foods (and food ingredients) in the traditional American diet. In order to absorb nutrients, food must be properly digested in the gastrointestinal tract. Offending foods trigger the gut’s immune system, affecting a reaction that creates inflammation, pain and digestive symptoms. This perpetuates discomfort, decreases nutrient absorption, and reduces nutritional status.

When gastrointestinal disorders and inflammation (i.e. immune system function) are present, addressing diet is most helpful to the comfort and health of the child – and well as their related autism/ADHD symptoms.

In my ten years of clinical experience, I have hundreds of clients who’ve experienced how removing foods that trigger inflammation (such as those containing the proteins gluten and casein) reduce pain, improve attention, and decreases behavioral symptoms. Equally important with any “autism diet” is the addition of good nutrition. Nutrient dense and probiotic-rich fermented foods are nourishing, healing to the gut, and aid systemic healing. Additionally, nutritional supplementation can be very helpful for supplying specific nutrients and supporting the gastrointestinal and immune systems.

I am enthused. These findings unquestionably validate biomedical approaches to ASD. No longer should parents be laughed at when they suggest addressing their child’s physical symptoms with tactics as innocuous as the omission of a food substance. Let NOW be the time we embrace one single shift in perspective – that ASD is a full body disorder (and that diet is a foremost concern).

While no one can specifically determine the extent to which an ASD child’s health and life potential can improve – the fact remains that this potential does exist. Accepting and sharing this truth in the face of mainstream denial is my moral responsibility and personal passion.

To bring more light to parents’ positive experience with diet changes, I’ve created a new series on my blog, Getting Your Hopes Up: Stories of Healing Thru Diet and Nutrition. You can read more about improvements and recovery through diet changes here.

—————–
Schieve LA, Gonzalez V, Boulet SL, Visser SN, Rice CE, Braun KV, Boyle CA. Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010. Research in Developmental Disabilities. 2012 Mar;33(2):467-76. Epub 2011 Nov 24.

Jessica Galligani and the Galligani Family

Oxalate diet and camel milk – Our two biggest wows to date!

Only three years ago, our sweet, intelligent six year old was rapidly traveling down the autism road. He was hand-flapping, lining up cars, had multiple tics, rocked himself silly, severely persistent bloating (think 6 months pregnant!), he had chronic rhinitis, loose stools, he hated dirty hands to the point of crying, didn’t like cuddling and even pulled away from us immediately following his birth, had more than 25 food sensitivities, he was waking about 5 times a night, had low muscle tone, delayed fine motor skills, couldn’t sustain himself long enough to walk through a store, had an incredibly low frustration threshold, viral issues, immune dysfunction, he was beginning to lose eye contact, and we learned that he was riddled with yeast and Clostridia which quickly turned into aggressive and defiant behavior. Around the same time we discovered he had Sensory Processing Disorder, he also began to experience extreme reactions to just about every external stimuli and the OCD symptoms were ruling his world….and ours.

We knew we had to do something and fast, we were losing our child to this monster we call autism, although we still didn’t have a label, I knew what we were up against.

Fast forward to today….at the risk of sounding braggy, our six year old is bright beyond his years, sensitive, empathetic, a fabulous communicator, is very empathetic, makes great eye contact, and has lost every single autism symptom he ever had, he is virtually indistinguishable from his peers. In fact, we’ve had two teachers tell us that he is one of the most mature students in his class. He is extremely creative and his cognition is above average. He jumped on a two-wheeler for the first time this summer and rode off into the sunset with no help, never even looked back! This is a child who couldn’t even peddle a tricycle at 4 years old! He had balance, confidence and the energy to do it! His food sensitivities are already down by at least ten foods. It’s not perfect yet, because we are still in managed recovery, but considering the struggles we evolved from, I am grateful for every precious day and I am confident that it’s just a matter of time before this becomes the norm for him, without help from us.

How did we get from there to here?

Oxalates and the Low Oxalate Diet

Like so many biomed parents out there, we have tirelessly tried many methods of healing, some with great success and some not-so-much. Looking back to where we started, there is one thing I do regret, and that is not starting the low oxalate diet sooner. We had an OAT (organic acid test) done when he was three years old. Among many other markers, his oxalic acid markers were severely elevated, but we were so flabbergasted by his other issues, including 25 food sensitivities, going GFCFSF and his out of control Clostridia overgrowth which turned him into a child we didn’t even recognize anymore. As newbies in the bio-med world, we were hit hard all at once….where to start? We attacked the most pressing issues (or so we thought) first. Knowing what we know now, reducing his oxalate intake should have been first on our list. We struggled through years of trial and error. The dietary changes were impressive, we had immediate progress removing IgG-sensitive foods along with GFCFSF, and even greater progress getting the pathogenic load under control, but there was always something still amiss. The bloating never went away, the mood swings were still evident, although less frequent and we were having more good days than bad, but when it was bad, it was really bad. Those days always came without warning or reason.

Something led me back to the OAT we had done years prior, I began picking his past apart a bit more and I had an “AH HA” moment looking back at the OAT. I decided his diet needed an overhaul and we jumped into the LOD head first. I thought it would be a trial diet, but I have never looked back, because the changes we saw were nothing short of miraculous. What was even more surprising was how much this effected our two year old!! He is neuro-typical, but clearly had gut issues that we were slowly addressing. The diet was a huge factor for his behavior issues and bloating. We began to see an overall normalizing, for lack of a better word. Our daily routines were less strained, there was less fighting amongst the boys, a weight was lifting, finally!! Another very welcome change was that the yeast and bacteria overgrowth instantly became easier to manage! This is where I regret not trying this sooner.

Camel Milk

As many other biomed moms do, I am still always actively researching and talking with other parents. Camel milk had been on my radar, because my uncle in Dubai mentioned it once, then later a friend told me I should look into it more. Since things had calmed down so much, I actually had some down time to look into it! The facts were absolutely astounding!! Why had no one else found this information? Why wasn’t every autism parent using it? Oh wait….we ARE talking about CAMEL milk here, aren’t we? Where to get it was the question on my lips. I immediately went into research mode yet again and within days, we were picking up our first batch of camel milk to try with our kids. We were lucky enough to have two farmers right in our state! Had I lost my mind? It’s MILK! My kids need to avoid the opiate-effect of milk like the plague, so why would I try yet another animal’s milk with my children?

Each month, I’ll be posting stories direct from parents like you. In their own words, mothers and fathers will share their experiences of getting their hopes up by choosing to use food and nutrition to help their child with autism, ADHD, and other developmental delays.

As a Certified Nutrition Consultant specializing in autism and related disorders for the past ten years, I’ve personally connected with hundreds of families whose children have benefited from diet changes. Their stories range from modest to miraculous.

I want to share these stories with you, beginning now!  When you read the experiences of others parents, it helps to illustrate how “worth it” it is to “try the diet.” No one says it’s easy, but when you see other’s positive results, it helps you to believe and become inspired.

Strangely, just today I read a “news” article that discouraged parents from trying a special diet. It explained that the diet might be difficult, costly, and that after all your effort, it might not work. It told parents to not waste their time and money, and that it doesn’t work for everyone.

Such bogus articles are an insult to you and me, and the vast legions of parents globally. They conflict with the very laws of nature, science, and our own personal experiences by telling parents – “Don’t get your hopes up.  It might not work.  So don’t bother trying.”

With this new series of stories, I encourage you to, “Get your hopes up!” 

Try the diet.  It’s always worth it – the scientific rationale is unquestionable. Every child benefits from specialized attention to food and nutrition. I’ve never seen a child not benefit by putting attention on a healthier and specialized diet – and often the benefits are vast.  By sharing stories with one other, we can learn, grow, and help our children even more.

Some stories are of “recovery” from autism, some are of “improvements” and overall healing that highlights the power of food choices, nutrition supplementation, and dietary intervention.

Remember, there is no single “autism diet” that’s right for everyone. Each child’s circumstance, gastrointestinal condition, nutrient status, and individual biochemistry vary. That is why nourishing hope encompasses an array of adaptable dietary strategies, and the stories will represent varied diets, food choices, and supplements.

I hope you enjoy this series, learn something new, are inspired, and get your hopes up!

Julie