The Physical Aspects of Asperger's Syndrome

3.   GFCF Diet:  Avoiding Wheat, Gluten, and Dairy, Why No Gluten or Dairy, Testing, Food Intolerances vs. Allergies, Motivation, and How to Begin


Gluten Free, Casein Free

The GFCF Diet is an abbreviation for the Gluten-Free and Casein-Free Diet.  Gluten is the glue-like protein found in the grains wheat, spelt, barley, rye, and oats (and lick-able envelope glue)!  Other grains including rice, corn, buckwheat, quinoa, and tapioca do not contain gluten.  At one point I wondered how it could be that the most common grain in America, wheat, is so bad for me.  Research into the history of wheat farming from Dogtor J's website, http://dogtorj.tripod.com/id4.html, taught me that originally, thousands of years ago, wheat had a gluten content of 5%.  At that level, the digestive system isn't overly bombarded with gluten and doesn't react negatively.  Gluten is what holds the bread together, and gives it its nice shape.  This desired quality lead farmers over the millennia to combine species of wheat in order to increase gluten content.  They have succeeded.  We now have the fluffiest and most tear-resistant bread ever, and with a gluten content of 55%.  Our bodies were simply not designed to handle that much of this sticky protein. 

Casein is the protein in milk, butter, ice cream, cheese, yogurt, whey, and all other dairy products.  Research is showing that human breastmilk appears to not be a problem for casein-intolerant infants, but they can not process animal milk.  Animal milk as a food intolerance has a fairly simple back story.  We simply were never designed have dairy.  Marilu Henner said in her first book that "the only thing milk is supposed to do is to turn a 50-pound calf into a 300 pound cow in six months".  If this isn't your goal, you shouldn't consume it.  From what I've been able to tell in my research, it appears that most cultures other than some of the Europeans didn't use, or barely used, dairy in their diets.   Therefore, not only are most people not designed to digest it in the first place, almost equally as many have no family history of ever digesting it, so their bodies are ill-prepared for the heavy dairy input of common modern diets.

Bodies become sensitized to something that's not good for them.  A little of a bad thing, and they'll make a note of it for next time.  A lot of a bad thing, and they'll begin an offensive.  If we only had trace or small amounts of gluten and dairy in our diets to begin with, our bodies wouldn't be as sensitized to them, and we could digest them properly.  In fact, after being on the GFCF diet for a time (from six months to one or two years depending on the individual), people report being able to have the occasional dietary infraction without consequence. 


Yeast Growth, Leaky Gut, and How Gluten and Dairy Converts to Opiates

Due to imbalances with probiotics in the body, chronic yeast overgrowth occurs.  The yeast bore holes through the digestive tract.  They are microscopic holes, nevertheless, holes big enough so that undigested gluten and casein proteins can leak out of the gut and into the bloodstream.  Without this leak, undigested food would be as fiber, and just go through and out of the system.  However, these complete and undigested proteins, now travel in the bloodstream and are converted to opiates as they breach the blood-brain barrier.  Opiates are a class of drug from the poppy seed, and include opium, morphine, and codeine.  The person is essentially high, all the time, from wheat and dairy.  The opiates lessen the feelings of pain, and sometimes increase feelings of pleasure; however, they do much damage to the brain.  This also explains why those with Asperger's commonly don't sense pain accurately. 

I lived with this for almost 34 years, it created a lot of impulsive behavior in me that I very much didn't enjoy, was very embarrassed about, and hard a hard time controlling.  In the past 2.5 months, I've been on the GFCF diet, and it's amazing how relaxed and patient I am easily able to be.  My sister, also very genetically similar to me, tried the diet for a week.  A few days ago she had to leave for a family emergency to help my other sister who lives far away.  Due to the urgency and the constraints of travelling, she returned to a normal diet for three days.  By the third day, she felt so ill that she just wanted to go sit in a hospital and never do anything again.  Something was very wrong.  She was scared, she couldn't think, couldn't work, couldn't take care of our other sister like she went there to do.  She didn't even feel able to make the 18-hour drive back home.  Finally, our other sister mentioned that it might be the diet change, the return of gluten and dairy, and my sister knew it was true.  She began the diet again, yesterday, and, in one day, is already regaining the abilities required to live and to help our sister.   Remember, she was only on the diet for a week before this incident, and her body made it very clear to her what it needs in order to be healthy and function properly.  

Her son, a 2-year-old with Asperger's, was on the diet only three days before he began talking in full sentences for the first time in his life.  Other parents, it is reported, state that their children regress and lose the progress they've made, if they begin eating dairy and gluten again.  Fortunately, we know what the solution would be for that problem. 

I had similar results when I began the diet 2.5 months ago.  I only tried a gluten-containing food once in that time.  After being on the diet a month, I took the sacrament at church, a small piece of wheat bread.  Within an hour, I was so sick I had to leave church early and go home.  I proceeded to be sick for the next 6 days, both with gastrointestinal illnesses, such as severe burping, diarrhea, stomach pain, nausea, and gas, and with mental illness, such as foggy brain, inability to do my daily duties, and inability to socialize well.  I quickly made arrangements with my leadership at church to be able to take the sacrament using rice bread or tapioca bread.  I don't ever want to go through that again.


Testing, Food Intolerances, and Allergies

Many autistic people have their list of allergies, usually including both food allergies and environmental allergies.  A lot of people ask if there are tests to determine if a person can handle gluten and casein.  They want to know if a skin-prick allergy test can tell us what we can eat.  For both of those questions, I would answer both yes and no, but with more no.  Allow me to explain.  Yes, there is a test for gluten intolerance, also known as Celiac Disease, but it requires intestinal and colonic scoping and biopsies, done from both ends, under general anesthesia.  This is expensive, difficult, and painful.  Even then, interpreting the results can be tricky.  There are other tests, including blood tests and stool sampling, but they only have a 50% rate of accuracy in being able to determine gluten and casein tolerance in an individual.  Personally, I recommend just staying off the stuff for 4-7 days.  In most cases, you'll know by then.  The person won't be healed in seven days, it takes a great deal more time than that, but you should see sufficient improvement to let you know that the diet is of help. 

As for the skin prick test, it's a whole different ball of wax.  Inability to digest gluten and casein is what's known as a food intolerance, which is different than an allergy.  An allergy is where the body's immune system overreacts to the item.  The body's reaction with foods it can't digest is different.  Therefore, you don't have an allergy to gluten, you don't overreact to it, you just have the inability to digest it or to keep it from negatively affecting your brain.  Due to this, an allergy test will not reveal if you need to be on the gluten-free and dairy-free diet.

There is one caveat for some people, just to let you know.  I once had a full skin-prick allergy test, many years ago.  They didn't test for "wheat", or even "dairy" (though I hear those items might be on the testing list now), but I showed up being allergic to "cattle".  At first, we thought that was just funny, when was I going to hang around cows?  But then we realized: perhaps I shouldn't eat them either.  That was my personal clue that dairy might not be for me.  So, personally, I think I have both an allergy and an intolerance to dairy.  Likewise, my son, who is neuro-typical, appears to be fine with wheat but allergic to dairy.  It gives him a skin rash and bad nasal allergies.  This is common with dairy.  I recently heard of another Aspie family in which dairy showed up as an allergen on their son's test.  I'm guessing they are the same as me. 

On a side note, dairy is a common allergy because it causes the body to turn on it's protective defenses to a greater degree and in more people than any other food.  It is common, especially in those with northern European ancestry and/or with Type A blood, to have nasal or respiratory congestion and itchiness as a direct result of eating dairy.  My son, not an Aspie, does not need the whole GFCF diet, but I do keep him off of dairy due to a dairy allergy.  If he does have dairy on occasion, his body will react to it with an immune response, whereas mine will produce the immune response coupled with casein in my bloodstream leading to opiate effects on my brain. 

There is also something called Food Hypersensitivity testing.  This testing is done with a skin patch or by doing Radioimmune Antigen Serum Testing on the blood.  However, again, it is a test for over-sensitivity, meaning that the body over-reacts to the food.  So, this is really more like allergy-testing and not like intolerance.

If you are not ready to try this diet for a week, and feel that you need more help from doctors, please be aware that most doctors are not yet fully informed about the benefits of dietary intervention for autism.  Some, such as Thoughtful House, are fully up-to-date on such subjects.  They are a cutting edge center in this field and can be of help.  In fact, reports coming out of the Thoughtful House indicate that most autistic children who come to their office are already on the GFCF diet.  Personally, I recommend just trying the diet for a week.  For more information on this subject, I refer you to Children With Starving Brains, chapter 4: Clinical and Diagnostic Evaluation.
 

Motivation 

Let me just take a moment here to let you know that I know it's hard.  I really, really I do.  It's a difficult diet.  I heard about it over two years ago, and in the mean time I tried every other possible thing to help myself get better and nothing worked.  I went to several doctors; I tried everything.  I was sick beyond their knowledge.  Once I realized how serious a thing Asperger's Syndrome is, I began realizing that it could possibly be the cause of almost all of my many physical ailments.  This was a big deal for me.  As I've said, I've been sick my whole life, with many conditions.  I wish I knew when I was a kid, or even two years ago, how many parts of my life could be improved by this diet.  However, if you had told me then, I probably wouldn't have believed you.  I just had to live it, I had to try for myself, I needed to know for myself if it was true.  I began the diet one day mid-November, and within two days I was sure this was what I needed.  I've never gone back. 

If I were a kid when I was introduced to this diet, and my mom was the one who helped me eat right, then I'm sure I would've hit some point in my teens or early twenties in which I would've rebelled and tried a normal diet.  It's natural, we all need to know for ourselves.  I would've gotten sick, like I actually did, and I would've tried everything, like I did, then I would try GFCF again, just to be sure, and it would've worked.  Only then, would I know for myself. 

I tell you this in effort to save others, perhaps at least one other person, the years of struggle I went through because I feared the difficulty of this diet and I didn't believe that this diet could work.  I didn't know that gluten content in wheat is currently 10 times higher than it used to be, or just how much some people weren't meant to eat dairy.  If I had known those things, or if I had known the medical chain of reactions that occur when someone like me eats wheat or dairy, then I think I would've believed more readily.  

If you or your child need to stop eating gluten and dairy, then please believe me it is worth it to start, and to begin trying the diet today.  Please, just try it.  It gets easier as you get used to the different food and different grocery shopping patterns.  My life is so completely different.  For example, I've always wanted to be a writer, but look at this report I'm writing for you.  It's so large, and detailed, do you think I've ever written anything like this before?  No.  I've never had the energy, nor the happiness, nor the brain that worked well enough to organize and elaborate on this number of subjects in three weeks, such a short period of time.  I have stopped mysteriously gaining weight, and I expect that in a few more months, the extra weight will begin coming off.  My blood sugar has stopped dropping to dangerous levels several times a day.  I'm happy.  I sleep at night.  I have energy during the day.  I have never ovulated on my own in my life, but now my hormone levels are going up, and I think in a few more months I will begin ovulating on my own for the first time ever.  I don't stim or have tics as often or as severely as I used to.  I socialize with my friends and family.  I look at their eyes, I've never done that before.  I have an appetite for the first time in my adult life -- I like to eat now!  I like to cook food for the first time in my whole life!  I have more brain power and energy with which I can finally pursue my interests: astronomy, geology, writing, reading, and gardening.  I am much better at doing my jobs that are mine to do.  All of those things had ceased in my life, and I truly missed them.  My body was not doing what my spirit wanted it to do.  I felt almost like parts of my body were dying.  I was becoming more and more useless.  I just couldn't do anything.  I don't want to sound like I'm over-emphasizing this, but, I need to convey this to you -- my life was going away, and now it is coming back.  My gratitude to this diet, and to God for telling me about it, is my motivation for writing to you today.  It has changed my life that much. 


How To Begin

In order to test this diet to see if it can improve your life or the life of your family member, I recommend you try it for a few days.  I suggest 4-7 days, but if the diet is what you or your family member needs, you'll probably know in just 2 days.  Doctors recommend trying the diet for 4-6 months in order to see full results (some even say 2 years to get full results).  I agree.  I'm only 2.5 months into it now, and I see that I am headed in the right direction in my healing, but I am still far from there.  So, while a full recovery will take a while, I still suggest that if you're watching, you should see some indication that the diet works in the first week.

Some recommend starting with on GFCF meal a day, usually breakfast.  For example, find one GFCF meal that you can serve for breakfast.  Then, find two or three more.  Do just breakfast for 4 or 5 days.  Then add one lunch menu item.  Repeat the process, slowly adding meals and menu options.  Another group suggest removing just dairy first for a few days, then removing gluten after that (or vice versa).

Either way is fine.  Just try to be as GFCF as possible within 7-10 days, otherwise you're just wasting your time.  I attempted cold turkey, but it only works so much because, let's be honest, it takes time to find what you can eat, what you can't eat, what ingredients are in what, and from where can all this new food be purchased.  So, I did the best I could, then I spent the next few weeks adding to my selection of meals.  I made lists of what I could eat, which is where the lists in Section 3a come from; they're just my personal GFCF finds.  By about two weeks in, I was doing pretty well. 

 

When You're Hungry

If you don't put enough effort into finding and preparing food on your new diet, you will get hungry.  You'll have times when you aren't thinking about food, you're thinking about your work, and your projects, and don't feel like spending an hour planning and preparing a meal.  Here are my suggestions to help with those times:
 

Blank Food Chart .pdf file.  You may download or print this chart and fill it in for yourself.


 


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