Friday, August 12, 2016

What if...

Our son has been on a Wild Kratts kick this week as I was researching an idea that is unfolding from my friend, Donna, suggesting I look through our blog posts. I went back to the beginning and found these posts.


We had been over at a friend's for dinner and our son was having a very "blue" day (lots of cyanosis). She had asked several questions and I couldn't remember which "c" word our son had such high levels.
After reading these posts, i began to wonder "what if..." our son's issue has to do with cystine, since it was so high for so long. "What if", like being diabetic when one's sugar is high, so one eats less sugar, our son should eat less food with cystine and it would reduce his cystine level. We already know that eating a raw vegan diet helps with his apnea and cyanosis and drastically reduced his cystine level, but why? We knew, through trial and error, that the higher the protein the food the worse his symptoms were, which in my mind would explain why some beans, sesame, buckwheat and quinoa weren't his friend, but why not oats? Why were eggs OK sometimes but not others? Is it food combining on a cystine level? How correlated is it to his ability to metabolize cystine or production of methionine? Is it glutathione related, a typical autistic issue which our had addressed at a young age? Is it connected to methionine production, my original thought? Do I continue to keep his protein level to `10% of his caloric intake or do I pay attention to his cystine amounts????

So i googled foods high in cystine...

"Food sources of methionine are: all meats and poultry, fish, eggs, dairy, quinoa, buckwheat, sesame seeds, Brazil nuts, and to a lesser degree dry spirulina. While methionine can be found in other foods as well, such as beans and legumes, the amount of methionine is too low to be of any benefit for significant cysteine production and ultimately glutathione production for your immune health." from 

I was able to find a way to search for the amount of cystine in food at 

The next day Dr Mercola sent out an email suggesting using . It has been years since I have looked at it, but went to the site. I had no idea that it broke the food down by amino acid. Without animal products, our son was eating over 400% of his daily needed cystine. Our goal is to reduce his cystine intake to below 200% while keeping his protein up to 10% and his calories over 2800kcal.

Over the week I have trying to find the daily recommended amount for cystine and found this instead
 "Overdosage, toxicity and cautions for cystine

Diabetic patients should be careful when taking cystine supplementation, as it could inactivate their insulin medication" from
What if the reason removing animal products from a diabetic's diet improves diabetes is due to reducing one's cystine level? If so, why haven't those promoting a vegan diet for diabetes mentioned this? Don't you love rabbit trails? I do love how things are so connected.
I submitted this to
I haven't been able to find any research on this, but could this be why a vegan diet works so well for diabetes? If so, I would love to see a video or blog post on it."
I received this email
"Hi Cindy-
Interesting question. Dr. Greger doesn't mention cystine in any of his work that I've read, but it sounds like a topic he would be interested in. He's very responsive to suggestions.
I was curious so did a quick search and found another research article showing that those with high levels of cystine in their urine did better eating more plant protein than animal protein. Clearly you are on to something.
Cathleen, Moderator"
I did find out what a person our son's size should receive each day in cystine, 0.1 g per day, thanks . 

When we started recording his levels, he was over 400%, his protein level ~10%, and his fat level over 30%, he needs the calories. Once we were able to reduce his cystine to below 300% and his fat to 25%, his cyanosis stopped. His protein has remained the same. As Cathleen stated I may be "on to something".

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