One of the first things we are going to try is the Gluten Free/Casein Free (GFCF) diet. Prior to Eva's diagnosis we heard a success story from a friend who uses it with her autistic son, so once we received the diagnosis we quickly started researching it.
There is a plethora of information on the GFCF diet on the internet, so I won't bore you with the details. In short gluten is found in wheat products (so no breads of any kind) and is sometimes used as a filler in other foods, like hot dogs. It can even be found in cleaning products, toothpaste, shampoo, laundry detergent, and make-up.
Casein is a protein found in dairy products. This one is much easier to avoid, but it does mean that Eva can no longer have her beloved milk or cheese. Eva would drink as much as 25 ounces of milk a day and have a serving of cheese at at least one meal.
If children do have an intolerance or allergy to gluten or casein, then ingesting these foods has an opiate-like affect. Because of this, when you remove gluten or casein from their diet they can go through a withdrawal period, just like someone who is breaking a heroin addiction.
We started the casein free (CF) diet first and will hopefully add the GF part in about a month. This past Sunday, July 8, marked the first day of Eva's CF diet. The only thing we're struggling with so far is finding a milk substitute that Eva will drink. We've been giving her a combination of unsweetened Silk almond milk and dairy milk for a little over a month with some success. When given only almond milk she would maybe drink half of it, and on rare occasion would drink the entire sippie cup over the course of a day.
Since she wasn't doing great with the almond milk we decided on Sunday to try West Soy Rice Beverage. This was a huge mistake. She took one sip and quickly threw it down begging for juice. We tried the rice milk again later that night with the same reaction. So last night I tried mixing half almond milk and rice milk...only to get the same reaction. Giving up on the rice milk this morning I decided to just give her the almond milk. She would usually drink at least half of it before putting it up. Today she took a sip and threw it down begging again for juice. I'm afraid we've completely turned her away from fake milks. If you know of any good milk substitutes please let me know! I have a feeling we'll just have to start giving her calcium and vitamin D supplements.
One of her favorite breakfast foods was cheese toast. We'd simply put bread in the toaster, then melt a slice of American cheese over it in the microwave. To replace this I found some casein free American "cheese" slices in the refrigerated soy section at Earth Fare. Eva took a bite, looked at it with a bewildered expression, then put it down. She did at least take a second bite, which was encouraging, but that was it. When I tried it I realized her frustration. The texture was weird and it tasted nothing like cheese. I didn't think it tasted particularly bad, but it just didn't taste like cheese. Kinda like when you think you're about to get a sip of water and it turns out to be Sprite.
We'll keep posting updates on her CF diet and the foods we try.
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