Sunday, August 9, 2009

gluten free, casein free

As school is right around the corner, we're trying to figure out what to send with my son for school lunches.

I'm going to send him with cooked chicken in salads, or hamburgers on bread made with almond butter. I make homemade ketchup and I have found mustards that don't have added sugars or mystery spice blends. If he were at a school where almond butter was not allowed, I would send his sandwich with a bread I can make with eggs. It holds together well. He also liked hard boiled eggs.

Now, this is not your typical gluten free, casein free fare (although most of his meals would fall under this guideline). My son has autism, and he is on the Specific Carbohydrate Diet (SCD), 100 percent of the time. What that means is that he eats no grains, no potatoes, no soy, no cow dairy (as per the autistic recommendations on the Pecanbread site), and no corn.

It's easier to talk in terms of what he CAN eat, which is most meats (with no broths/flavorings), eggs, goat cheddar, almond butter, and small amounts of honey and fruit juices (usually diluted and made into gelatin).

I wanted to take this opportunity to talk a little bit about GFCF diets, and why they don't create huge, wonderful results for some autistic kids.

We went on the GFCF diet first with Clark, before SCD. I had a leg up in this area; I had already been avoiding gluten for about a year before Clark was diagnosed. So I already knew about the link.

Many, many parents have found that going off gluten and casein (the protein found in dairy) has helped their autistic kids.

But for many of those kids, after going GFCF, they've traded one addiction for another.

Picky eating habits are often demonstrated by autistic kids to an extreme. They simply will not eat more than a few foods. Almost universally those foods are high in simple starches, sugars, wheat, and/or dairy.

It is not uncommon to find an autistic child who eats nothing but potato chips, for example.

When parents realize that their child's eating habits resemble that of a drug addict (the drug being food), many times they switch over to a gluten free, casein free diet. There is usually some improvement.

But then, as time goes on, the child just replaces the old addictive foods with new ones -- and their diet is still starch plus sugar. Gluten free diets are often very high in refined starches.

Now, my son has never been as picky as some other autistic kids. I've never been a picky eater either. However, I can't deny that eating my son's gluten free bread made me extremely irritable. I personally did not see that many changes in my son when he went GFCF either. It took a test -- a plate of wheat pasta -- to see what a huge change had actually occurred. The week following that plate of pasta was one of the saddest of our lives, because "new" Clark was gone, and "old" Clark was back in business.

But still, I did not see the huge improvements that other parents had seen. Yes, my son was better -- but was there something I was missing?

I started researching diets, and I came across the SCD. This was where I found my answers.

Most gluten free breads are filled with easily digestible starches. They hit your bloodstream much like pure sugar.

In autistic kids, the parent may misinterpret this to mean the GFCF diet will not work for their child when in fact their child likely needs MORE than just a restriction in gluten and casein to see real results.

To break this cycle, my son and I went on the SCD. It is very much in line with Paleo diets. Humans did not evolve to eat grains, nor did they evolve to eat corn and starchy potatoes morning, noon, and night.

The difference in my son was remarkable once we eliminated all of those simple sugars and starches. Many other autistic children have had similar success, especially with correcting bowel problems which plague many autistic children. As the SCD was originally only used to treat colitis and Crohn's, this makes a lot of sense.

But the best part is that suddenly, in many cases, these children who would NEVER even think about trying a food outside of their sugar and starch-soaked world -- they start to try new foods!

And they start to like them.

If you would like more information on the Specific Carbohydrate Diet, I have some links in my sidebar to the Pecanbread site and Yahoo! group.

It has been used to treat autism as well as IBD, colitis, Crohn's, and rheumatoid arthritis in my case. Paleo-style diets have a high rate of success in treating a number of conditions. Many people suffer from undiagnosed food intolerances, and since Paleo diets eliminate many of the top food allergens, they help restore balance to the body.

If you have digestive healing to do, you may need to go through "the stages" and I urge you to check out for advice.

So take a moment to REALLY think about food, if you're gluten free, or GFCF. Just because it's labeled "gluten free" does not mean it's healthy. Whole, real foods are the way to go.


Ang said...

since i'm suffering from a possible autoimmune something or other (they just say it's chronic fatigue), how is SCD helping with your RA? have you noticed a big difference?

The SCD girl said...

Hi Ang,

In my case, I was on standard therapy for "moderate to severe RA" for a year with almost no benefit at all. I was tired and in constant pain.

I was basically in a constant flare that entire time.

When I first started experimenting with diet, I cut everything down to the bare basics, which happened to eliminate everything containing starches. I was still getting some sugars from some lite canned fruit which is not SCD legal, but at the time I was not on SCD.

And I finally pulled out of that flare. That was the first time I had seen improvement in my condition. I was on the highest possible dose of methotrexate along with sulfasalazine and daily steroids, with almost no effect.

I had a HUGE improvement with my thinking as well. I was so brain fogged I could barely function before I cut out all the junk food. Then, I got my brain back. LOL.

I got SO much better I was off all meds for a year!

A lot of people with chronic fatigue have undiagnosed food intolerances or allergies. For me, I had no idea. I had no bowel symptoms at all, but some people have "silent" gut dysfunction. I think that is what happened to me. I was severely gluten intolerant and I had no idea.

Thanks for stopping by!


Ang said...

That's so awesome! I'm not fully on SCD yet. I've transitioned to paleo over the summer and have kept a keen eye on what I'm eating and how it's affecting me. Hopefully I'll be at "fanatical adherance" of SCD in a few months. I think I'm afraid of traveling and the availability of foods where I live so I'm trying to get all the kinks out now.

Love your blog, BTW! I'm a PM too. I hope things get better for you soon!

The SCD girl said...

Hi Ang,

Thanks! I've been interviewing with two different companies, but it seems like everybody is dragging their feet in this economy.

I understand what you mean about traveling. In the early stages, travel can be difficult. I managed, but each time I lost five pounds. Of course, I had five pounds to lose, so it all worked out. LOL!

Susan :)

Amelia-Another Gluten-Free Casualty said...

I'm curious about trying the same with my sister. She eats pretty much wheat, dairy, and starches.

It's great to see how much it's helped you and your son. Gives me hope.

Mrs. Ed said...

We had tried the GFCF for our son's autism and got ZERO response, even though we had no idea at the time he did actually have a major gluten sensitivity (and so did I). Three weeks into to SCD and we pretty much got a miracle. His gi tract was so damaged from gluten and bakers yeast (and a few others) he was unable to digest hardly anything, which led to malnutrition, loss of peristalsis, constipation, no nutrients to his brain, and antibodies to everything he ate. The SCD addresses sooo many issues- digestablity, no gluten and bakers yeast, no atificial anything (which made him hyper), no yeast feeding starches and gobs of sugars (go light on the honey though), and eveything is nutritious, adequate protein for energy and healing. Also starches and grains can affect insulin levels which cause issues as well. We feel very blessed to come across the SCD.

The SCD girl said...

Hi Amelia,

I hope you do give it a try. It can really help!

Mrs. Ed,

Thanks for sharing your story! Getting the word out is so important.