One Year Update on Doing the GF/CF Diet

Earlier I posted a personal experience with putting an Autistic boy on the GF/CF diet. Here is an update one year later (the posting was written a year ago for another Forum, but I didn't put it on this blog right away.)

My son is 15 and was a non-verbal, moderately Autistic child when diagnosed. He had a lot of behavior issues and minimal responsiveness to the world outside our own home, and tons of feeding issues. He had GI studies which showed unusual lesions in his stomach nobody could explain or treat. Some Doctors think that this is actually a result of measles from the MMR and an incomplete immune reaction to the immunization.

The first month was all about getting ready. I cleared out the entire house of anything with Gluten and Casein in it and gave away what was still good to friends and a food pantry. I printed up the diet guidelines, and gave them to the school and family members who would be eating with him. I printed up cards with the restrictions on it to give to staff at restaraunts. I started following two publications: The "Gluten-Free Girl" blog, and "Living Without Magazine."

Reading the Gluten-Free Girl's book by the same name (its in our local library) led me to recognize some of her same symptoms in myself, too. So I put the entire family on the diet. Its SO MUCH EASIER this way. No worry about what to eat, what is OK to eat. I put the pantry together with enough stuff over a week or two so that I had enough snacks to tide us over until I could make more of the meals on my own. My autistic son was already pretty much eating things we could keep. The only thing he ended up missing was pizza. I tried to make a GF/CF pizza, but he didn't like the version I made at the time. Later, I found a brand of frozen pizza that is made GF/CF which he is starting to get used to. I think after a year, he's forgotten the taste of the other kind of pizza, so the difference isn't so obvious.

Anyway, the results are in. After a few "misses" where his Dad had trouble with buying into it, his behavior improved so much that even he is more convinced that the diet is worth the trouble of being careful even away from home. The school is very, very convinced. Enough to have taken an interest in how the diet works, and providing a separate place for him to prepare his own food, and to provide staff support during lunchtime. The caffeteria staff has agreed to provide one item he really likes at the school during lunches for him.

He is on the honor roll now. His behavior issues have dwindled to almost none, from several times a week. He has learned to cook his own lunch at school, knows what is on his own diet (with a little mock moaning about it, but he follows it anyway.) He even makes extra food for friends. He eats with everyone else in the caffeteria. He has several new friends (non-special ed.) and has been to two dances, and has some girlfriends (nothing serious.) He has made a movie, posted it to UTube, and has about 50 friends on Facebook. He is doing advanced work in computers and even finished his exam ahead of time, so he could take that day off and made plans with friends instead. He can go independently to a restaraunt with friends.

He's grown several inches and is now taller than his father. He looks very healthy and is height/weight proportionate.

He doesn't think he's all that different, but everyone else is noticing how much better he is doing. He even sleeps better at night.

It wasn't a dramatic, overnight change. But mine was. Within a week of following this diet strictly myself, I lost all symptoms of health problems I had been having for over 20 years. I was able to go off all prescription medications I was on, and so was my son. He only takes some supplements now. There really is something to this diet. But it is something you can't cheat on (no, nobody is going to have an allergic reaction like some kids have to peanuts) but if you cheat, it does make a difference. Even if you have some food that seems GF/CF, but has tiny amounts in the form of additives or cross-contamination you can have a difference.

I think that for my son, he might be able to cheat a bit as time goes on, but for me, I can tell right away because I have pain and all my old symptoms return for at least 5 hours to 3 days.

Autistics have an unusual tolerance for pain (and an equally unusual intolerance for light touch and bright lights and loud sounds.) So perhaps my son doesn't notice pain that might have been similar to mine. Either that, or his symptoms hadn't had the chance to progress to the level mine had over the last 20 years.

I hope that someday this diet is researched better. But it is unlikely that drug manufacturers will fund it because it isn't a drug treatment. Parents, the government, and charity funders will have to do it.

I hope that every parent of an Autistic child at least hears about the potential for this diet to help their child. It might not help every child, but I have a feeling that some families have a hard time keeping the strictness required, like we had the first time we tried it. It really helped to have the blogs, the magazine, the family support and the school support. This time around, it really helped to have more choices of prepared foods. There is a bakery in a nearby town that makes some really delicious fresh baked goods that are Celiac-friendly, and that has helped a lot.

My extended family has all seen such improvement in us that my sister, mother and a neice have all gone on versions of this diet. The neice's rhumatism has gone into remission. My sister lost the last 5 pounds she has been battling to get to a size 6. I lost 25 lbs without trying to. I never thought to even suggest they try an autism diet for these things (except the rhumatism.)

I have so much more energy that I have started learning swing dancing, joined the local gym and work out every day now. I feel like a whole new person.

The diet isn't a weight loss diet. You can loose weight if you want to. Nor is it for treating Fibromyalgia (I had been diagnosed with Fibromyalgia, IBS, Chronic Fatigue, low thyroid and headaches.) However, for anyone with chronic pain, I suggest at least trying it for two weeks. I could tell after only one week.

The high point of the year was when my family produced an entire Christmas feast that was GF/CF for us, and I got my very first GF/CF birthday cake for my 50th. I wish I had known to do this 30 years ago.

I sometimes wonder now, that if I had avoided these two allergens back then, if I might have prevented at least some aspects of my son being born with Autism.

Personally, I think my son inherited certain genes, and my immune system was compromised by stress from the loss of my first child to cancer. My imbalanced immunity was passed to him through the neonatal period and from nursing. After which, the many, many immunizations he was given made his immune system become unbalanced in a way that has neurological implications.

Value Decisions

"One's life has value so long as one attributes value to the life of others,
by means of love, friendship, indignation and compassion."

~ Simone de Beauvoir

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Let's All Wabi Sabi

Wabi-sabi

"The Japanese view of life embraced a simple aesthetic that grew stronger as inessentials were eliminated and trimmed away."

-architect Tadao Ando



A comprehensive Japanese world view, aesthetic centered on the acceptance of transience, of beauty that is "imperfect, impermanent, and incomplete." The Japanese word for rust is pronounced sabi. A wabi-sabi aesthetic values asymmetry, asperity, simplicity, modesty, intimacy, and the suggestion of a natural process.


A good example of this is in certain styles of Japanese pottery. In Japanese tea ceremony, cups used are often rustic and simple-looking, e.g. Hagi ware, with shapes that are not quite symmetrical, and colors or textures that appear to emphasize an unrefined or simple style. In reality, the cups can be quite expensive and in fact, it is up to the knowledge and observational ability of the participant to notice and discern the hidden signs of a truly excellent design or glaze (akin to the appearance of a diamond in the rough.) The glaze is known to change in color with time as tea is repeatedly poured into them (sabi) and the fact that the cups are deliberately chipped or nicked at the bottom (wabi), which serves as a kind of signature of the Hagi-yaki style.



Wabi-sabi nurtures all that is authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect. Wabi originally referred to the loneliness of living in nature, remote from society; Sabi meant "chill", "lean" or "withered."

More positive connotations of Wabi now indicate rustic simplicity, freshness or quietness.

Japanese arts over the past thousand years have been influenced by Zen and Mahayana philosophy of acceptance, and contemplation of the imperfection, constant flux, and impermanence of all things.

These can be of both natural and human-made objects, or understated elegance. It refers to quirks and anomalies arising from the process of construction, which add uniqueness and elegance to an object. Sabi is beauty or serenity that comes with age, when the life of the object and its impermanence are evidenced in its patina and wear, or in any visible repairs.

Wabi-sabi is the most conspicuous and characteristic feature of what we think of as traditional Japanese beauty. It occupies roughly the same position in the Japanese pantheon of aesthetic values as do the Greek ideals of beauty and perfection in the West. If an object or expression can bring about within us a sense of serene melancholy and a spiritual longing, then that object could be said to be wabi-sabi.

Wabi and sabi both suggest sentiments of desolation and solitude.

From an engineering or design point of view, "wabi" is the imperfect quality of any object, due to the inevitable limitations in design and construction/manufacture, especially with respect to unpredictable or changing usage conditions.

Sabi is then the aspect of imperfect reliability, or limited mortality of any object; to rust.

In the Mahayana Buddhist view of the universe, these may be viewed as positive characteristics, representing liberation from a material world and transcendence to a simpler life. Mahayana philosophy itself, however, warns that genuine understanding cannot be achieved through words or language, so accepting wabi-sabi on nonverbal terms may be the most appropriate approach. (Through the effects of objects, art, or observation of the world.)

The wabi and sabi concepts are religious in origin, but actual usage of the words in Japanese is often quite casual. Japanese belief systems are syncretic in nature.

Honkyoku (traditional shakuhachi music of wandering Zen monks,)

ikebana (flower arrangement,)

Japanese gardens,

Zen gardens,

and bonsai (tray gardens,)

Japanese poetry, particularly haiku,

Japanese pottery, notably Hagi-ware,

Japanese tea ceremony, and

Bonsai, the Japanese art of miniature trees, all have wabi sabi aesthetic.

--Leonard Koren in his book Wabi-Sabi: for Artists, Designers, Poets and Philosophers
Summary of Wikipedia description

Great article on Wabi Sabi: http://nobleharbor.com/tea/chado/WhatIsWabi-Sabi.htm


This post is in memory of Allison Sullivan, an other-worldly sprite who I was honored to have met, who I think, exemplified the distilled nature of human existence in all its beauty, through the wabi sabi patina of her earthly teacup of great value to her family and friends.

Dance Like There is No Tomorrow

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Fate is at your elbow; make yourself good while life and power are still yours."

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