Help with vitamin E and fat malabsorption (long)

[Guest guest]

We've been on and off the SCD wagon since 2002 (almost 4 years now). It has

really helped, but my insistence on seeking alternative health care professional

advice has steered us off the SCD path on more than one occassion, the most

recent being trying to incorporate some of the Body Ecology Diet foods into our

diet. My son Peyton, almost 6, has extreme short bowel (lost over 80% of his

small intestine, mostly ileum). He was diagnosed probable PDD at age 2, but he

has dropped off the spectrum in most areas over the years. The bowel issues are

enough to deal with (he's a real miracle child) that I focus totally on that.

I have a lot more questions and advice to seek, but I'll start with the most

recent predicament: For the first time, Peyton's recent bloodwork showed him to

be drastically low in vitamin E. I don't have the numbers, but the nurse called

because the doctor wanted us to start supplementing immediately. No

recommendations, just start something right away. The doc is in Nashville, TN,

and we just moved back to OH, so I don't have the lab results yet. And they want

us to follow up with someone locally.

Peyton continues to have major problems with fat malabsorption. Even MCTs

(like coconut oil) give him steatorrhea and burning when he stools (an acid

burn). I went to the health food store and got 400IU vitamin E in sesame oil,

the only kind I could find without soy and not using wheat germ. I poked a hole

in the end and put 6 drops (almost a 1/4 cap) into his mouth. Everything was OK

for a few days, and then true to form, he started getting steatorrhea, frequent

looser stools, and what he calls " butt burn. " However some acne (he'd never had

before) like stuff on his face also went away. I stopped the vitamin E, and

within a day, he was doing better.

I'm wondering if anyone has any suggestions for vitamin E (water soluble?) for

kids who just don't tolerate the fats? A while back, concerned his dietary

sources were insufficient (intolerant to eggs/nuts, leafy greens pass right

through), I found one aqueous source: http://www.yasoo.com/aqua-e.htm. Anyone

heard of or used this or something similar?

Also, at the same time, I had been reading a lot about red palm oil, which is

supposed to be very high in tocopherols and tocotrienols. We've never tried any

form of palm oil; he doesn't even tolerate the coconut oil, so I don't know if

this would be any different. I am a bit of a purist; I'd rather not use

synthetic stuff if I can avoid it. But I have to find something he can use.

We've made some positive changes back towards 100% SCD (and just cutting back

on all the fats) and gotten good results (went from 33 lbs in January to 38.6

August 1, had his first formed stools since going off SCD), but we've had recent

weight/stool setbacks when trying to add almond products and when starting the

vitamin E in sesame oil.

He is still getting about 8 oz of young coconut juice, fermented in Body

Ecology culture starter, and spread over 4 servings (diluted with 6 oz water

each). I want to stop that because I think it could be doing more harm than

good, but I'm scared of losing minerals and probiotics. He is also getting quite

a bit of 48-hour fermented raw goat milk kefir (grains, not the starter

culture). For some unknown reason (and we've not ever retried the yogurt to see

now), he didn't tolerate the SCD goat yogurt but did seem to adjust to the

kefir. I don't know what the take on kefir is for SCD, so I hope to hear about

that.

For those of you who may wonder, we've run the gamut on the foods/supplements.

So, yes, we've tried enzymes (Digest Gold and Lypo). We have not tried bile

salts/acids, and those might be the key, him having lost so much ileum, but the

conventional docs say they're useless. He gets weekly preservative-free B12

injections (always was very low normal due to the short gut). He gets homemade

broths (chicken mainly), all mostly organic whole foods, grass fed/free range

meats, salmon from Vital Choice. Everything is made fresh from scratch, nothing

processed. I spend all day in the kitchen, but it's worth it.

I am open to all input: criticism, suggestions, experiences (pro and con). And

I hope that we will be able to get him 100% SCD compliant soon.

Thanks for now and more later,

Donna Jo Kazee (strongly suspected celiac and 100% SCD since May)

mom to Peyton (almost 6, extreme short bowel and developmental delays) and

(almost 3, and also strongly suspected celiac)

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