Caisen Question...

[Kristen (ColeysMom)]

Can someone explain to me what the difference is between a caisen free diet and a dairy free diet?

[JungleWoman]

Casein is one of the proteins in milk. If you are going to do a casein free diet-- its basically a dairy free diet.

[peglem]

JW is right, however sometimes foods that are not dairy will use only casien protein, like some margarines and non dairy cheeses. So, casien free would be more extensive than just dairy free.

[Kristen (ColeysMom)]

So does this mean that whey is ok?

[peglem]

I don't know if whey is ok. When Allie was on the diet 8 years ago, I was told (by the cf websites) that whey was not ok. But, haven't been there in a long time. Have you tried the Forum Food Court? I think they discuss this sort of thing alot.

[JungleWoman]

We were told to stay clear of whey too.

There are SO many things out there that are entirely dairy free-- even a really good margarine called Earth Balance. It seems like this sort of thing is starting to become much more important to food stores.

[RathyKay]

So, casien free would be more extensive than just dairy free.
Ummmm... I'd call it the opposite. Casein is part of dairy, so dairy-free would include avoiding all of those margarines and whatnot that "only" contain casein. I use "dairy-free" to mean anything relating to the output (milk) of the mammary glands of a cow, goat, or sheep, or any other non-human mammal out there. We avoid casein, lactose, whey, cheese, yogurt, cream, milk, ice cream, butter, ghee...

As far as whey goes, if you're just starting out, get rid of all dairy. You can always try adding back just whey and see if there is a reaction of some sort. Since Tom is developmentally delayed and can't communicate subtleties (sp?) very well, we've never tried adding back any dairy components since we realized he definitely had a problem with it.

Also, you need to go dairy-free for at least six weeks to make sure you get it all out of your/his system. Then you can try adding it back in and see if you get some kind of a reaction.

[peglem]

Okay, Miss smarty pants! I'd hoped you'd come along here! I just meant that there is casien hidden in foods that are not necessarily considered dairy on their face!

[Kristen (ColeysMom)]

You guys are funny!

ok, here's why I'm asking...I know you guys aren't gonna totally know what I'm talking about, but follow, my logic here for a second, not necessarily the chemestry of this, k...

Cuz at the end I think you'll be able to help me figure this out...

Alright, so 2 years ago a metabolic Dr figured out that Coley was fructose intolerant...that means no fruit, no vegetables, no beans, no legumes, no sugar, no honey, no maple syrup, no whole grains. And no to a bout load of artificial sweeteners that are made from plants and sugar alcohols.

So that leaves: meat, poultry, fish, dairy, eggs, potatoes, refined grains and dextrose/glucose.

We were absolutely SHOCKED at the change in him after removing the fructose...CRAZY change. They don't document behavioral or developmental issues with fructose intoelrance, just growth and eating problems. So you can imagine our delight, and how the docs are scratching their heads at this point, right.

So there are actually 6 types of fructose intolerance. 1 is dietary (a lot like lactose intolerance, but w/ fructose), the other 5 involve a metabolic response: hypoglycemia (ya helllo...can you say seizure trigger), liver damage, kidney disfunction, acidosis, keytone production, etc. So we've been going through the testing for these 5, since Coley has a history of seizures, rashes, bizzare labs, dehydration, etc.

All of the testing is different, one was real easy a simple blood test and 15 weeks waiting for the geneticist to do their thing... The other 4 involve other food metabolism issues because the specific enzyme that is deficeint processes more than just fructose. 2 were ruled out because Coley didn't have 'obvious' symptoms: motor function delays/disabilities, or facial deformities. So we are down to 2. The first of the 2 can only be definatevly diagnosed through a liver biopsy to test for the activity. BUT, we can do observational type testing...specifically test how he handles fat. When we did that 2 things became apparent. 1) Coley isn't utilizing fat...AH HA moment, that's why he's SO scrawny despite all the boosting we've been doing, & 2) It's responsible for the HUGE blood sugar swings we had been dealing with.

So when we discovered this we thought we were done. Fat was removed and Coley improved yet again!

But he still needs to pack on the weight so we need to boost with something...me & my big ideas came up with dry millk and added it to EVERYTHING!

So Coley is behaving different because we removed the fat and we don't think much more about it. Like it would be hard to tell that he's acting worse because of the dried milk because the removal of fat was that big of an improvement.

So one day after an over exposure of fructose that I care not to discuss the details of because it basically led to the regression in potty training that you've been so kind to help us through these past few weeks and also involves a certain someone we shall refer to as MIL...

So Coley was getting better (like a week later), then BLAM one day was WAY off...WAY WAY off like he had gotten into fructose + fat...but he was home with me and I knew he hadn't.

So I go and take a look at this last intolerance type (after looking at a gazzilion other things first) and WAWA...there it is...develomental delays, autistic behaviors, speech regression, seizures..... The difference, this particular enzyme works with the one described above (so makes sense it would compromise it's function) AND it also synthesizes l-serine...mammlian protien. And what did he just consume the day in question day....A HUGE BBQ pork chop!

ALRIGHTY then, got on the phone and made that appointment with the metabolic dr to run the test for this. Meantime, what all is he eating that has mammalian protien: CRAP - all that dried milk, all the other dairy, beef and pork...

First thing I did was remove the dry milk...WHAMMMO...big change. His focus and hyperactivity settled like you would not believe. ok, so stop giving him 16-24 ounces of milk/day, lose the cheese, switch from home made icream to rice dream, cut down on all that beef & pork, and bring on the fish....

CRAZY the difference in him...SO much more focused, and WAY less hyper.

So I'm set for the big moment, the one where the doctor says: Finally, here's your diagnosis. It's not autism, it's D-glyceric aciduria and all you need to do is keep these foods away and your son is NT.

Well, that's not what happened. The test came back negative. I still have all sorts of potential reasons for that bouncing around in my head...but more likely there is another reason that removing the dairy helped.

So, could it be because I removed casein? This is what I'm trying to figure out. So I'm trying to add whatever I can back while still restricting casein...but it sounds like I can't do that....

Now my other problem is that I need some calcium in this childs diet...

And as for the fat part...this may be the decider...the only fat Coley is getting is butter. We've tried a whole host of fats/oils and it aint pretty!

Plant oils bomb big time (olive, peanut, coconut, canola, etc)! Crisco sent him into metabolic distress. I stopped trying after that, but I do have safflower and haven't tried it...

So, just so I'm clear, no yogurt, no milk, no cheese, no dips, no spreads, CRUD - no bunny crackers, etc. Nada. Oh I bet cream is ok, right...

UGH!

[RathyKay]

This is just a quick reply, because we're having a crazy day today. Big fundraiser at the school this afternoon and a swimmeet tonight. I do have a couple of thoughts that may or may not help, I just need a little time. Of course, by "help" I mean give you something else to look up. Hee! Hopefully, I'll be able to get to this tonight. (I'm in California - not sure what timezone you're in.)

[mrsdoubtfyre]

casein free. You have to read labels carefully tho. Not all are.

The manufacturing process selects against the heavier casein molecules.

[milivica]

Though 'technically' butter and whey should be fine, the thing is, you run the risk that there are trace amounts of casein in any dairy produce. If you are avoiding casein, I would not think cream would be ok. Also, lactose is a giant problem for Carmen and I...I dunno if casein is. I remember getting a non-dairy creamer thinking, 'cool, at least I can use this for my coffee' and whatnot. I looked on the back of the label, there was dairy in it all over!

That diet is wicked, even though it's worth it, woah. That's some list of restrictions. Name the foods you are considering, and I can tell you if they are 'safe' from casein.

[Kristen (ColeysMom)]

Mili, what would I use for a butter substitute?

RathyKay, DH has been working doubles all week, he's home tonight, we are both exhausted, but likely will be up to spend some time together. I'm in Boston, it's 9:15...but I'm anxious to here your thoughts!

Thanks everyone for helping me with this!!!!

KJ

[milivica]

Honestly, given all the restrictions...I'm not sure butter is a 'bad' idea. It's fat, not protein. However, I can't say there wouldn't be trace amounts of casein, see what I mean? But not a big old blop of it.

I can tell you what we love and use, but I'm betting he won't be able to eat it due to the oils. We love it so much, we still use it even though we're not gfcf anymore (but still avoid dairy like the plague).

http://www.earthbalance.net/ we eat the one in the yellow tub.

He can have greens, yes? I have some slammin recipes for several greens. Collards are HIGH in calcium, with the drawback being your house smells like urine when you're cooking them. But we love them.

Believe it or not, parsley (which I hate raw) is absolutely delicious the way I make it....cooked like a pesto with clams and garlic.

Something really nice for the digestive tract, marshmallow, I mean the plant not the white things you cook over a fire.

Do you know how he would be with amaranth or sorghum flours? What about sweet potatoes? One thing I did, was search on the net for what folks in other countries eat as the staples in their diets. Dunno if that would help.

Also about the oils he can and cannot have, would it make any difference in his reaction, if the oils he ate were cold pressed? For instance, you said no olive oil - did you try both cold pressed and the one that's processed in high temperatures. I'm not sure how his dietary thing works, I think I remember you saying it's a liver thing, so I'm just guessing here.

Oh also, how would he be with egg yolk for fat? How about gravy (not like a bowl of it by itself, I mean on stuff) like bacon fat gravy, oh man, with biscuits....you said he can have refined grains, does that mean like Wonderbread?

[milivica]

I used to really like this site for foreign recipe ideas - www.recipesource.com but usually I pick things I'd eaten, I rarely had American friends, it seemed to help 'explain' the gap between myself and my peers (before anyone knew about aspergers) so at least when my behaviors stuck out like a sore thumb, everyone figured it was cause I was 'American' so it didn't hurt my spirit so much, or make me feel so utterly stupid all the time. So, I've eaten in, and lived in, many nonamerican households with some awesome foods.

Also, I liked this http://www.nal.usda.gov/fnic/foodcomp/search/ cause you can see what's in foods. How much calcium, etc... Maybe you could even look up certain foods you know he can't have, and find some common denominator to avoid, or, look up common denominators of foods he can have and determine them 'safe' for possible new future foods.

Last question, have you had a dietician to help you make sure, Coley's getting all the nutritional stuff he needs or are you having to do this all alone?

[Kristen (ColeysMom)]

Mili you are AWESOME!!!! I don't have the capacity to check those sites right now but will! Just wanted to THANK you for our ideas!!!

Garlic is out.

We don't have to eliminate fat, just restrict it, and make sure it's not a huge component...like his intake is supposed to be 65% carb, and no more than 15% fat. So if I make cookies or something, then something like shortbread works ok.

some greens are ok. Spinach he can have a little of. I haven't tried things like escarole, but I'm sure would be ok once & a while. So let's hear what you've got!

We use TONS of parsley!

Yes, we've tried all the oils...cold pressed everything! His body doesn't seem to know how to process fat, so as long as it's not in high quantities it just passes through...more than that we have issues. Like I made frosting once with shortening..OMG! But a little here & there for the recipe doesn't seem to be a problem. ALthough plant oils do seem to have a lower tolerance.

Tell me more about the marshmallow...

Flours are a big mystery, I can't get the fructose content on many of them so we just avoid them. Wheat, rice, barely and oats are about the only ones we use...but I'm game to try if anyone has a logical reason why it would be a good idea, ya know.

Sweet potatoes are out!

I've tried doing the same sorta thing Mili, there are SOOOOO many foods, there's got to be some foriegn things...but it's so hard to get the data I need on them...and knowing the consequences of a bad choice...

He eats eggs. Mostly in stuff, but I question it. He's sorta funny with them. And one thing I've learned is to LISTEN to his food preferences. So eggs worry me. After reading a bit today on the GF/CF diet, I think I may try egg whites when baking verus whole eggs!

OMG! He LOVES gravy...and biscuits YUM!...I'm afraid to look...bisquick it's a staple here!!! Am I going to have to make buscuits from scratch?

NO NO...wonderbread has sugar!!!! Refined grains means...no whole wheat, no brown rice, only rolled oats, etc. The germ & husk needs to be removed.

UGH! dieticians, they, well, suck! They try, but can't get beyond that pyramid, ya know....he gets a sugar free multi-vitamin, a magnesium tablet, and a omega capsule everyday...maybe I need a calcium & vitamin D supplement too...CRIKIE!

I've been dying to make an escarole soup...now I can't stop thinking about collard greens!

And if I could only find cabbage that was green verus that genetically altered white stuff I could make him some cabbage rolls (aka ga-wum-kies..LOL!) MMMMMMMMMM!

Thanks a million you guys!!! I'm starting to feel inspired again...this was a tough week!!! HUGS!!!!

[milivica]

I hear ya on the dieticians sucking. Really, the only 3 links I really wanted you to have, is the one with my butter, though I'm betting Coley won't be able to have it due to the oils/ingredients. A link to recipes of other lands, just for ideas for yourself, and the link to the nutrient data base - which - I just got and have gotten and used before just by using a search engine.

I'm hoping the data on the link I gave, can help. Try to look up white flour, you'll have a buttload or choices to hit. I hit Wheat flour, white (industrial), 10% protein, bleached, enriched and got this:

www.nal.usda.gov/fnic/foodcomp/cgi-bin/list_nut_edit.pl - ok, edited to say, to get that link to work, type www. then copy and paste nal.usda.gov/fnic/foodcomp/cgi-bin/list_nut_edit.pl

if the link doesn't work...then go to

http://www.nal.usda.gov/fnic/foodcomp/search/ and click on
Search online for values in the USDA National Nutrient Database for Standard Reference, Release 19

Then type in the food...I put 'white flour' and hit Submit.

You will then get the following choices:

Corn flour, masa, enriched, white
Corn flour, whole-grain, white
Cornmeal, self-rising, bolted, with wheat flour added, enriched, white
Rice flour, white
Wheat flour, white (industrial), 10% protein, bleached, enriched
Wheat flour, white (industrial), 10% protein, bleached, unenriched
Wheat flour, white (industrial), 10% protein, unbleached, enriched
Wheat flour, white (industrial), 11.5% protein, bleached, enriched
Wheat flour, white (industrial), 11.5% protein, bleached, unenriched
Wheat flour, white (industrial), 11.5% protein, unbleached, enriched
Wheat flour, white (industrial), 13% protein, bleached, enriched
Wheat flour, white (industrial), 13% protein, bleached, unenriched
Wheat flour, white (industrial), 15% protein, bleached, enriched
Wheat flour, white (industrial), 15% protein, bleached, unenriched
Wheat flour, white (industrial), 9% protein, bleached, enriched
Wheat flour, white (industrial), 9% protein, bleached, unenriched
Wheat flour, white, all-purpose, enriched, bleached
Wheat flour, white, all-purpose, enriched, calcium-fortified
Wheat flour, white, all-purpose, enriched, unbleached
Wheat flour, white, all-purpose, self-rising, enriched
Wheat flour, white, all-purpose, unenriched
Wheat flour, white, bread, enriched
Wheat flour, white, cake, enriched
Wheat flour, white, tortilla mix, enriched

Chose one, choose a quantity (100 grams or one slice or whatever) and you will get tons of info, such as I did when I selected Wheat flour, white (industrial), 10% protein, bleached, enriched. Some of the info I got was:

First they list the nutrient, then the measure (g is gram) then the amount or nutrient per 100 grams...page down for sugars, I put them in bold.

Protein
g
9.71

Total lipid (fat)
g
1.48

Ash
g
0.58

Carbohydrate, by difference
g
76.22

Sucrose
g
0.20

Glucose (dextrose)
g
0.03

Fructose
g
0.03

Lactose
g
0.00

Maltose
g
0.23

Galactose
g
0.00

Starch
g
64.48

Minerals
Calcium, Ca
mg
20

Iron, Fe
mg
5.06

Magnesium, Mg
mg
25

Phosphorus, P
mg
107

Potassium, K
mg
149

Sodium, Na
mg
2

Zinc, Zn
mg
1.02

Copper, Cu
mg
0.188

Manganese, Mn
mg
0.818

Selenium, Se
mcg
14.6

Vitamins
Vitamin C, total ascorbic acid
mg
0.0

Thiamin
mg
0.736

Riboflavin
mg
0.445

Niacin
mg
5.953

Pantothenic acid
mg
0.248

Vitamin B-6
mg
0.037

Folate, total
mcg
170

Folic acid
mcg
140

Folate, food
mcg
31

Folate, DFE
mcg_DFE
268

Vitamin B-12
mcg
0.00

Vitamin B-12, added
mcg
0.00

Vitamin A, IU
IU
0

Vitamin A, RAE
mcg_RAE
0

Retinol
mcg
0

Vitamin E (alpha-tocopherol)
mg
0.05

Vitamin E, added
mg
0.00

Tocopherol, beta
mg
0.04

Tocopherol, gamma
mg
0.42

0.126
Tocopherol, delta
mg
0.01

Vitamin K (phylloquinone)
mcg
0.3

Lipids
Fatty acids, total saturated
g
0.302

Fatty acids, total monounsaturated
g
0.193

18:1 undifferentiated
g
0.193

Fatty acids, total polyunsaturated
g
0.845

18:2 undifferentiated
g
0.828

Cholesterol
mg
0

Amino acids
Tryptophan
g
0.113

Threonine
g
0.264

Isoleucine
g
0.327

Leucine
g
0.627

Lysine
g
0.260

Methionine
g
0.150

Cystine
g
0.243

Phenylalanine
g
0.399

Tyrosine
g
0.127

Valine
g
0.390

Arginine
g
0.367

Histidine
g
0.197

Alanine
g
0.290

Aspartic acid
g
0.397

Glutamic acid
g
2.958

Glycine
g
0.330

Proline
g
1.010

Serine
g
0.413

Other
Alcohol, ethyl
g
0.0

Caffeine
mg
0

Theobromine
mg
0

Carotene, beta
mcg
0

Carotene, alpha
mcg
0

Cryptoxanthin, beta
mcg
0

Lycopene
mcg
0

Lutein + zeaxanthin
mcg
18

[Kristen (ColeysMom)]

Here's a good site for any diet: www.nutritiondata.com (http://www.nutritiondata.com)

Mili, as hard as it is, try pulling out fructose, you may be surprised!!!!

if not, no loss, right?

I'll check those flours!!! thank you!!!!!!!

KJ

[milivica]

I'm not exactly sure what you meant....I would think pulling fructose would be way harder than gfcf, so would only be surprised if you told me it was not hard.

Ok, the marshmallow...at first, couldn't find it anywhere, cause I only know how to say it in arabic. Finally, I found this:

http://en.wikipedia.org/wiki/Corchorus

So, if you look up Jew's Mallow, that will give you more info on eating the plant leaves of marshmallow - however - alls you need to know is it is green, and has a 'slime' like okra that you either can handle, or can't. There is marshmallow in my cleansing pills, it's supposed to be sort of like aloe (another slimey thing), very soothing to your digestion.

Here's how arab folks might cook it:
Fatty lamb
Jew's mallow
garlic
water

serve over rice

Here's how I cook it:
Jew's mallow
water
garlic
chicken

served over rice or like a soup with crusty bread pieces tossed in

As for the parsley:
mince a good 3-4 bunches of parsley with as little stem as possible (unless you like stem)
put in a pot with a hot 1/2 water 1/2 olive oil mix (omit oil if you need to) so it is barely covered with liquid
2 way big tablespoons of minced garlic, or better 2 cloves of fresh (omit if you need to)
after it is tender, add 1-2 cans of boiled cans or 1can of boiled clams and a 1tin of smoked clams.
thicken with corn starch
tell Coley it's martian gravy or something

served over rice, linguini or fetuccini, or like a soup with crusty bread pieces tossed in

Variations: Add some cilantro, kale, any green that's good for you that tastes crappy alone. I have basil growing on my window sill that I add, just a little though, a few leaves. Use chicken or turkey or any fish really, doesn't have to be clams. Once cooked, and meat is added the parsley looses that 'minty' taste.

NEXT TIME POGUE VISITS SHE'S GOING HOME WITH SOME :D IT'S AWESOME

Collards...I do not like them without smoked meat simmering with them, dunno if you can do that. Same with turnip and mustard greens.

Greens...if you're going to mix collards with any other green, cook them first cause they take way longer.

Cut and clean greens, remove stems they are bitter.

Fill a big pot with the greens, and smoked ham hocks or smoked turkey. I don't know if nonsmoked meat would work, I don't like the taste of collards but love the taste of them with 'smoke' favor in them, see?

Simmer till done, serve with or over cornbread. Or just alone if you want. Coley will have green poo, he might think it's cool.

Now for fats....I know you said he can't have nut oils, what about SEED oils like from tahini (sesame seed)? Crazy question, what nationalities is Coley, this is really probably a dumb idea - but what the heck - my idea is what ever nationality he is, I wonder if you looked up the foods from that area, if you'd find anything that you might be able to add to his list of safe foods. I know it's not that simple and there'll be tons he can't have (based on nationality), cause what nationality don't eat sugars. Just a thought.

[Kristen (ColeysMom)]

Mili, crazy how we both think so alike!!!

I had the same thoughts about nationality...he's irish mostly, polish next, then a big question (long story)....

Funny how in that mix potatoes seem to be his favorites...AND the easiest for him to handle....

I need to look into that jews mallow....

I'm a bit out of it now...a few glasses of wine..MAN it's nice to get the stress off...but I'm dying to hear what RahtyKay was thinking so I haven't shut down...

Girl, I really can't tell you how much your brainstorming means...you're the best!!!! Tomorrow I'll be able to REALLY look into all your suggestions...THANK YOU!!!!!!

[RathyKay]

Well, this might be less helpful than I originally thought, but here goes. You and Hal (halsgluten) over on the Gluten Sensitivity / Celiac Disease forum are pretty much the only ones I know of posting about fructose. I searched all his posts on fructose to refresh my memory, and he talks about balancing fructose with glucose (http://brain.hastypastry.net/forums/showthread.php?t=2709). This thread (actually, NancyM's posts: http://brain.hastypastry.net/forums/showthread.php?t=14784) mentions small bowel bacterial overgrowth BTW: Reading about small bowel bacterial overgrowth (SBBO) it sounds like one of the symptoms is often discomfort when eating carbohydrates or fructose because the bacteria are secreting acid and multiplying like mad when you send it down it's favorite food.

Here's some good articles: http://en.wikipedia.org/wiki/Bacterial_overgrowth
I'm getting tired and losing my train of thought, so I'll just throw out this link and you can see if it does anything for you (http://brain.hastypastry.net/forums/showthread.php?t=17225). I guess when I saw the SBBO stuff... well, I kind of wonder if Tom (and Allie) have some SBBO going on. Sort of a feed the yeast / bacteria and deal with the toxins released as a result. Since you're still trying to figure out which type of fructose intolerance... is it intolerance or just problems resulting from SBBO? The problems we see in Tom from yeast are hyperactivity, high-pitched squeals, less cooperative.

Okay, getting to what I actually know something about... I bought the "Special Diets for Special Kids" cookbooks. (They're okay. I would recommend seeing if your library has them before actually thinking about buying them.) They're basically GFCF recipes. The only dairy they have in there is ghee, which is clarified butter. If you're going to continue with butter, I would clarify it first, to remove any excess proteins. (But *I* wouldn't use it period.) At this point, I'm roasting chicken probably once a week and I save the grease. I use this for cooking it - just a light coating to cook our vegies and whatnot in - not deep-frying. Anyway, I don't know if this is better tolerated than olive oil or other oils? I also roasted a duck for the first time. Those game birds have a lot more grease, if you want to try rotating greases. (Yes, I rotate our grease... typically bacon and chicken and olive oil. But now I have some duck.:o)

On the weight gain... Kim (is she KimS on BrainTalk) over on GS/CD did an elimination diet for her family. She figured out they were reacting to a lot of foods and removed them from their diet. By "reacting" she found behavioral type problems from certain foods (gluten, dairy, starches, and I don't remember what else). Six months after this major dietary change her son went in for a checkup. He had not grown any. She was soooo disappointed, but she knew the diet was helping just based on her kids' behavior. It wasn't until 16 weeks later, that her kids grew a lot in a short amount of time. Her theory was that the first six months was spent recovering from all the foods that bothered them, and then their bodies were able to concentrate on growing. Here's the long version of her story (http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=374). And from this thread (http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=1033) ALL the answers I got back said that the first six months were the healing period and then the second six month period was for the catch-up process.
So... I guess I'm thinking you shouldn't be quite so worried about growth. Coley needs to heal first. Didn't you just finish a fructose challenge? In that same thread / post Kim tells nick's mom IMO, he *may* not have been on the diet long enough to see a difference.

Part of the diet is about allowing the body to detox. foods that were not 'healthy' for it. Nick is on a *lot* of medications which will add extra time/stress to the body's detox. process. (And I know that he needs to stay on those medications. I just wanted to state that they may mean that his detox. timeline may be longer than ours.)

Part of the reason that I don't think he's been on the diet long enough is because there have been areas of question re: contamination. Also, some foods that he is sensitive to may not have been isolated yet.
I can't believe you're still up! I'm struggling to keep my eyes open and my thoughts semi-clear. Anyway, I think there was one other point I wanted to make, but it's gone. Maybe it'll come to me in the morning.

Oh, and I didn't realize greens were allowed. I think pretty much all of those have lots of calcium. We tend to stick with spinach, kale and chard. Collards are a little stronger than I care for.

[Kristen (ColeysMom)]

Kathy, to be honest, by the time you posted this my vision was so blurred, partially from the wine, and partially because of the hour, I couldn't comprehend any of it...I just went through and reread it...it's late and I'm dealing with a hang over to top it off, so I'm going to come back later & follow all those links!!!

Thanks so much for taking the time!!!

I didn't realize that so many greens had calcium...I'm a bit afraid to try anything that has fructose because of his reaction, but I'm mustering some courage based on his improvements off the dairy, maybe there's a balance in there somewhere...so after reading things more thoroughly I'll test it out...

I'll keep you posted!!!

THANK YOU for all your help!!!!

You guys really ROCK!

[Kristen (ColeysMom)]

Mili...about pulling out fructose, I just meant, kinda in response to one of your other posts...give it a try...it's WICKED hard I'm not going to lie, but once you get it down...and if you see a HUGE improvement, it's worth all the efforts. If not, no real loss right?

And that nutritiondata site actually pulls from the usda database, but it's WAY easier to use and understand. Check it out.

[RathyKay]

I'll have to look at that nutritiondata website, too. Hal actually posted a link to it in one of his threads I was looking at last night. Anyway, I guess I was a little freaked and misunderstood one of your posts on fructose intolerance and I thought he couldn't have *any* plant-based foods. I'm feeling much better knowing he can handle greens of some sort. (I know, this is all about making *me* happy.:p) What about broccoli, asparagus, artichokes, bok choy? Anyway, far be it for me to tell you to feed your kid something you think will adversely affect him. If it worsens his behavior, I doubt he'll get any benefit from it. We did IgG food allergy testing on Tom through our DAN! doctor. He told us to take out the low reacting foods for 3 months and the high reacting foods for 6 months before reintroducing them one at a time with at least 4 days in between to check reactions. Anyway, I would ignore my previous comments about balancing fructose and glucose for at least six months before you decide to do any experimenting... if you decide to experiment. Let him heal first.

On the calcium, I don't have any links to back up my opinions. I have read various other opinions stating that the US consumes the most dairy and yet has the greatest osteoporosis in the world. I keep thinking also that some countries don't have near the calcium intake, yet do fine. So, I'm not sure you need to be hitting the US RDA. Also, you do need vitamin D and magnesium (and probably others) for healthy bones.

I spent today making chicken broth. In addition to saving grease, I also save chicken bones (and duck!) in a bag in the freezer.:o (I don't get enough beef bones so I haven't bothered saving them.) When I have enough, I make broth. As long as you simmer the bones in an acidic liquid, the calcium will be leached out of the bones and you'll have a calcium-enriched broth. I was using lemon juice, and I know you can use vinegar (just 2 or 3 tablespoons added to your water). Thanks to Kim, I'm now using cabbage as my acid. So, I don't know if you can handle lemon juice or vinegar, but I know you can use cabbage. I also add one onion and one carrot and let it simmer all day, adding extra water as necessary. You can add or leave out whatever you need to for your diet. I use this broth for cooking my greens. Kim is a big proponent of chicken soup for healing. Tom really doesn't like chicken soup, but he's happy to drink broth straight, so I'll give him broth, with chicken and vegies on the side. If you're eating fish with bones, I'd have a fish bone bag as well as a chicken (duck and turkey?) bag and try making a fish broth. Don't the Chinese have a fish sauce? If you're eating canned salmon, crush those bones in with the fish and eat them.

On the throwing ideas out there that I don't know what I'm talking about... many people who have problems with gluten also have problems with dairy. Sometimes this is temporary. (I'm not sure if the "temporary" is only for lactose-intolerant?) I think the reasoning is that the gluten destroys the vili that help digest your food, and the digestive enzymes necessary to digest dairy are produced(?) on the tips of the vili. They're the first to get hit and the last to recover. So, does this fit in with fructose intolerance? Is there any chance that if he has enough time to heal, that he'll be able to tolerate small amounts? Or, if you remove gluten, eventually he'll produce the enzymes again and be able to digest it? Or am I comparing apples and oranges? We have some digestive enzymes for Tom that are supposed to break down gluten and casein (in limited amounts) and help digest the rest of his food. The idea is not to let him eat the poison, but in case he ingests trace amounts hopefully we won't see a reaction. Are there similar enzymes Coley can take as a preventive?

[milivica]

Ok, here's that Marshmallow I love. You buy it cut, cleaned, frozen. I think it cost me $1.50.

Check out it's digestive benefits on some site devoted to herbs or something. Like I said, it's one of the ingredients on my cleansing bottle label.

I'll post another pic, when it's cooked and served.

[Kristen (ColeysMom)]

Just quickly...as soon as I booted up Audrey woke...

Re fructose/glucose balance...this implies that Hal is dealing with dietary Fructose Intolerance somtimes called fructose malabsoption or fructmal...it is the digestive 'type' which is not what Coley is dealing with. It's common for celiacs to also struggle with fructmal. It's hard to know 'which came first' because fructose intolerance (FI) will reak all sorts of havoc.

There are quite a few people in my FI group that are dealing with dairy, gluten and frucotse intolerances...I'm telling you, I find it strange that one way or another many people dealing with seizures, migranes, developmental disabilities, mental illnesses, etc....all manage to find there way to vitually the same diets to find relief! Keto, GF/CF, SCD, FI.....I don't think this is a coincidence!!!!

Anyhoo...technically Coley has some hepatic activity present or he would have ended up in renal or kidney failure as an infant. So, based on that he should be able to tolerate some fructose. Green leafy veggies have very low levels of fructose. Celery, cucumbers, and mushrooms have none. Olives and avacado have less than the green veggies but he's unable to tolerate those...perhaps due to the oils, not sure.

He can tolerate 1 single broccoli spear like 1x per week...it's CRAZY! Fructose accumulates in his blood, so we need to be VERY careful about how much he gets at one sitting...and space that out correctly with his next.

But he does seem to do ok with spinach...I've been afraid to push it, so I generally use spinach as a spice sorta...I chop it up and add small amounts (like 1/2 cup or something) to soups and sauces, or mixed into rice or whatever.

I could try doing the same thing with escarole, jews mallow, collard greens, etc. too.

ok, be back in a bit....

You guys are awesome!!! :)

[Kristen (ColeysMom)]

Alright, I'm kinda on overload right now with lot's to think about...I had to stop reading cuz I realized I was just getting more confused with all the new info to sorta jive with all the old, ya know...so I think this is gonna be a thread that I'll need to reread several times before I absorb it all.

Thanks again you guys, really I just can't tell you how helpful this was, not just for all the great new tips, but because it's also helped my perspective a TON! I was really down and just being reassured that I'm not imagining all this really helps. Knowing others have figured out their way around it all, just renews my motivation!

So mostly THANKS for that!!!!!

ok, Patriots are on, and DH got out of work earlier than expected. I'm gonna spend some time with family today and let this stuff sink in!

But just wanted to throw a few thoughts out there too:

Kathy...everything that grows has some fructose in it...and Coley's tolerance is VERY low, so we basically give him none. Buuuut, technially he should be able to handle some, so, I'm going to suck it up and give it a whirl! Or MAYBE...wait...we're in to see that GI in 3 weeks....here's a thought...I should wait to do anything different for now...but can gather info anyway right...let's see what he suggests. I'm REALLY hoping for digestive enzymes...if that happens then I'll have a real good reason to test a few things, right...

The FI is metabolic, the deficiency is in his liver not his gut, and there currently are no enzymes to convert fructose to anything in the gut...something we need to get in line for. Likely celiacs and diabetes will come first then FI and there's a similar metabolic condition that deals with galactose and one with glucose...the geneticist said at this point they will 'borrow' technology to work toward aiding these...

But, the thing is that the way the metabolic process works, there is a series of steps the fructose goes through before being converted to glucose and then stored/used. Each step useds another enzyme and converts fructose to something else. As it goes further down the path other things are also metabolized by those enzymes. Like fructose 1, 6 bisphophatase is an enzyme. It converts fructose to glucose and also glycerol (fat) to glucose. This is suspected as being the problem enzyme for Coley. So if I give him say, spinach with butter on it, it would likely cause him much greater distress and reactions than plain spinach or plain butter. Sooooo, if there is an enzyme that can help break down the fats in the gut, then I should be able to up his spinach...in theory.

This GI that we are going to see actually prescribes enzymes for kids on the spectrum with great success...so I'm optomistic!

And hmmmmm on the calcium...I think I'm going to need to look into that more. I know that a lot of the RDA stuff is hooey...hmmmmm. Perhaps I am worrying for no reason on that!!!

Coley's head didn't grow for a WICKED long time...like almost 2 years. Finally after restriction it began to grow. It's just about 2 years now since fructose has been eliminated from his diet. When we began he had a huge spurt, suddenly we were going through shoes and pants like mad! But his weight hardley changed. He's pretty much stretching out...remember stretch armstrong...LOL. I got totally freaked this summer... Since I was pregnant and then had the newborn, DH was doing the wrestling with Coley, getting him changed, baths, etc. I hadn't seen him naked or barely clothed in almost a year. When he put his bathing suit on this summer...OMG! I could count all his ribs, back & front...

You know what though, it looks like in the last few weeks he's starting to fill out a little. I can only see the top few ribs in the front now. And his bum is starting to fill out his pants, I can actually see some tush...course he's in 3T shorts, and 4T pants (maninly for the length) and he'll be 5 in feb...versus Audrey who is in 12mos clothes @7.5mos...:eek:

Anyhoo...here's some puzzling facts:

- remove fruit, veggies, and fiber: constipation disappears
- remove 50%+ of calories (fat): no change in appetite or weight
- remove dairy: ???? weight gain

Uhmmmm...is it me or does my child body defy the laws of nutrition? Perhaps this is why when he gets polluted he attempt to defy the laws of physics...LOL!

I think I'm going to weigh him tomorrow am. Now I'm second guessing his weight at the metabolic f/u last month....He weighed 35 pounds, but I didn't believe it because that would have been 2 pounds in like 2 months, plus he was being uncooperative (we polluted him for the visit) and DH had to get on the scale with him...I weighed him when I saw his ribs at 33 pound so I called the doctor...that was a 1 pound gain in 12 months.

Ok...so lots rolling around in my head, as you can tell...gotta go process all this....if you think of anything else, post away!

Thanks again girls, hope you enjoy your Sunday!

KJ

[Kristen (ColeysMom)]

Hey, tell me what you think about DAN! Drs. I'm a bit confused by some of the impressions I get about them.

I'm wondering if it would be worth looking into one. Or should I stick with mainstream Drs?

I was a little weirded out when I looked at the list...why aren't there any in any of the developmental clinics. I understand that it's a different perspective and all...but even holistic docs have found their way into traditional medical establishments...what's the deal with DAN!?

KJ

[peglem]

Well, since you asked...I think if you've got it pinned down that your child has an enzyme deficiency- I think you're better off with the GI docs that know what they're dealing with.

DAN doctors...well, even if they accept your insurance (some do, some don't) they often run labs that insurance does not cover, so there's that. My experience with DAN dr.s is that they have a list of things to try that have been successful with some kids. They tend to put kids through that list, even if their test results do not indicate need.

I do not want to discourage people from going to DAN doctors. There is, I think, a lot of variety among them. And they will not pooh-pooh symptoms as just being autistic. They believe autism is a biomedical problem-not just "something wrong with the nervous system." They tend to look carefully at the GI system. But, I'm not sure if they would have more expertise than an actual GI doc. Is there something specific you want, that your current provider is not giving you?

[Kristen (ColeysMom)]

Well we haven't pinned down a specific enzyme yet...we can only suspect it based on symptoms and responses...but it doesn't explain everything. This is why the metabolic neurologist asked us to see the GI. She thinks he may have a malabsorption problem in addition to the enzyme deficiency.

The only way for us to know for sure if his liver is deficient is to do a biopsy, which no one wants to do because of the risks...plus with our history of reactions to meds & such...with no explanation of why he goes bonkers on them it's an added risk.

So we are kinda stabbing in the dark hoping we hit a target. It's a bit more positive thatn that, because obviously Coley is not head down with no speech and oblivious to the world around him any longer, so we have hit some targets...but there is still some things that don't add up...like his weight & growth....his lack of appetite...his focus...and the god aweful smell of his urine, breath & bo...I can't even describe it to you, it's like no other smell I have ever come across!

I know one of the things they test for is the d-glyceric aciduria, I ran across it one day when I was searching for info on it...and was surprised, so I'm just wondering if they may have a better idea of what might be causing these weird collection of symptoms, versus a more traditional Dr.

I just want an answer so that I know how to tackle everything...I'm petrified about him getting sick because of meds, I'm petrified of vaccines (they all contain sucrose)...I'm afraid without knowing that all we are really doing is doing what puts him in the best frame of mnd to learn...which is good and I'm happy we are able to do that much...but god what do I do with that first gash that needs stiching or the first broken bone or god forbid an infection or something...ya know. Plus, did I tel you that he's growing hair on his legs & back...this is an attempt for his body to maintain body temp...if it was other places (which it isn't ) it wuld indicate a hormone issue...the weight is really getting scary!

I never really thought much about going to a DAN! doc...so I was just wondering how you all felt about it...whether it would be worth it.

[RathyKay]

I'll post separately on DAN! doctors.

Okay, so I was trying to dig up some info on calcium, bones and dairy. This is probably more anecdotal than you'd like, but this is where I'm coming from. I know, I've given you more links than you'd like... here are some more.:o

I really like Kim (over on GFAB and here on the GS/CD forum). Her family's symptoms seem to fit Tom and I admire her total elimination diet (and maybe one of these days I'll actually do one). Here is part of her take on chicken soup: http://thegoblet.blogspot.com/2007/09/pecking-apart-chicken-soup-use-dem.html. She is very big on doing a chicken soup fast after a "glutening." She says that their recovery time has greatly diminished as a result. I have no idea if this would help Coley with a "fructosing?" Going back to her link, if you're going to click on it later, she talks about leaching calcium from bones, *and* magnesium which is also necessary for bone growth. (She even mentions fish bones!) Also, I found another post of hers saying she saves egg shells and grinds them up in the coffee grinder as another calcium source.

http://vitamindcouncil.com/ The vitamin D council has lots of info on.... vitamin D! They have a ton of info - research and otherwise. Just quickly going through (I was looking under osteoporosis, in case you're wondering), here's one study on calcium and vit D: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12699298. The GFAB folks have talked about the different types of vit D (did you know there's more than one?). If you're going to supplement beyond the sunshine and whatever's in your multi-vitamin, D3 is the preferred form. Also, the vitamin D council has an interesting take on autism, if you feel like checking it out. In the scheme of things, it probably fits some kids and not others.

From the really out-there side of things (http://groups.msn.com/CrazyVegan/truthordairy.msnw). (My bolding.) Milk is not just high in calcium. It is also high in protein and phosphorus. Both protein and phosphorus, consumed in excess amounts block calcium absorption in the bones. Since the average American consumes more than 100 times the amount of protein they need every single day, it's safe to say that they are getting way too much. And dairy products, 40 percent of what they eat, contributes to this. I've read similar type statements from other websites (not sure if they're any more unbiased sounding:o). So... I'm not sure how true it is, but I do tend to agree with the "why are we consuming copious amounts of milk that is intended to grow calves?" We should have been weaned long ago. Anyway, there are plenty of cultures that do not consume dairy, and don't have our bone problems. This is why I think if you're not consuming dairy, you don't need to worry about getting quite so much calcium in your diet.

[RathyKay]

We're seeing one. I really like him, and I like the progress we've seen with Tom. We haven't quite gotten everything figured out, but I can definitely see the progress. And, because I *love* posting links for you;), here's our DAN! summary. You really only need to read the first post of each thread, but they're kind of long-winded.:o
First Appt: http://brain.hastypastry.net/forums/showthread.php?t=138
Allergy Results: http://brain.hastypastry.net/forums/showthread.php?t=4357
Follow-up Appt: http://brain.hastypastry.net/forums/showthread.php?t=9148
Chelation Appt: http://brain.hastypastry.net/forums/showthread.php?t=15949

A couple of things... Tom has brain damage. I wasn't searching for answers, because I thought that was the answer. Kind of like an autism diagnosis... He has epilepsy? That's from the brain damage. He doesn't see well? Brain damage. Lousy fine motor skills? Brain damage. I didn't know I could still search for answers in spite of brain damage. DogtorJ began posting and we gave dairy-free a trial. I was so shocked that it had such an effect on Tom. We figured out rice and coconut on our own, and I did a bunch of reading before going gluten-free. At that point, I knew GFCF was the "autism diet" and I could see the improvement in Tom. While Tom is not technically autistic (whether that's my denial or not, I don't know), he does have some tendencies and.... it's brain damage. Anyway, the autism diet was a big success for us, and I wanted more. That's why we went to the DAN! doc.

If you read the first appt, you'll see one of the things I was interested in was Tom's health and boosting his immune system. A lot of times, Tom will have a febrile seizure at the onset of illness. I've read a lot of anecdotal stories about people's kids being so much healthier (fewer colds, etc) going GFCF and that really didn't seem to be us.:( I was also interested in other food allergies / sensitivities, and he tested Tom for that. Removing all those additional food greatly improved Tom's health. He had noticeably fewer colds last year, they didn't last as long, and they weren't always preceded by a febrile seizure! Definite progress / improvement!

So.... should you see a DAN! doc? I don't know... you have your fructose "answer." Would Coley benefit from chelation? How are his vitamin/mineral levels? I don't know. Peglem is right (in my opinion) that they have their lists of things to test for and try even if the tests don't support it. But you know? Tom's tests said gluten wasn't a problem. Hah! Some of this stuff they don't know how to test for definitively so actually trying it is the only way to know for sure.

Our DAN! doc started his career as a pediatrician. He said that as a pediatrician there was nothing in Tom's bloodwork (slightly low in this, slightly high in that) that would cause him concern. But, as a DAN! doc, he wanted to bring those items in line as close to normal as possible to see what happens. And, we've seen the improvement as vitamin and mineral levels come closer to normal. While he really hasn't gained much weight or height this year, his head grew from the 10th percentile to the 20th percentile. Admittedly, it's still microcephaly, but I'll take that brain growth over the rest of it anytime.

I've spent too much time on the GS/CD forum that I have a low opinion of GIs without ever having been to one. Most of the stories I've read have been, "it's not celiac; you're fine; continue to eat that poison even though you feel awful." But, since you're dealing with enzyme disorders and not worried about gluten sensitivity versus celiac, maybe GI is the "right" choice?

Our DAN! doc recommended "Children with Starving Brains" by McCandless. Our library had it. Our DAN! doc offers all of the treatments listed in the book. Maybe that would help you make your decision?

On the vaccines... my daughters are fully vaccinated at this point. I will not be getting that cervical cancer vaccine for them, and I'm not sure I'll be getting them any boosters. Tom had all of his infant and toddler shots (although, I delayed some of them). I had intended to get his kindergarten boosters done one at a time to watch for bad reactions, but I don't think I'll be doing it now. This was posted on GFAB (another link!) http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=711. I found it depressing. Like I said, I don't think I'll be getting the kids any more vaccines, but you'll have to make your own decisions. I've signed the paperwork at school saying they are not up to date by my choice and I will keep them home if there's an outbreak.

[Kristen (ColeysMom)]

Wow Kathy! You are amazing!!! I love all this stuff!!!

A long time ago I was a dieticians aid at a major hospital...it is true that there is no evidence that suggests that dairy consumption improves bone density. Likewise it is true that there is little evidence to support cholesterol intake effects cholesterol levels. That's a whole 'nother matter...

You reminded me though that I originally boosted the milk for the protien source since he was eating VERY little meat...this has changed some since our initial diagnosis...I'm really thinking greens are the answer...but don't want to rock the boat just yet.

I have a terrible opinion of GIs...long story, but I'll tell you briefly that we first saw one for Coley at about 10 months old (that would be 7 months adjusted)...He was barfing everything, not gaining, sleeping excessively, irritable, constipated, and EI was getting concerned about his milestones....all this stuff can be nicely plopped into a large bucket labeled "preemie"...in the same way that diareah, picky eating, poor weight, and all the other things get lumped into...a junk pile called 'autism.' And we are supposed to just say, "Oh ok, my son is miserable, but it's ok because he's______________. F! That!

Anyhow, that was the attitude I got from our GI, and then on top of that he told me that I should have another child so that I could stop focusing on Coley...Ya between the sleepless nights and cleaning up the barf...I'll get right on that! BIG FAT CLOSE MINDED JERK!!!!

Ok, so I was pretty upset about the metabolic doc referring us over there to a GI, almost felt like she was giving up...but then I saw who she was referring us to and now I'm dying to get into this guy! He's had a lot of success treating all sorts of mental illness and developmental disabilities with enzymes...so I'm optomistic!

I love all the information you are giving me, just need to digest in bits I think. I'll go back and finish the links from yesterday, then get on these!

I've got guys here today ripping the siding off the house so I'm not sure how much time I'll have, but I'll keep you posted as I do.

I posted to Hal yesterday.

I weighed Coley in at 34.2 pounds today. That makes more sense with his appearance, and track record. It's still good...means 1 pound in about 3 months...but he's got a lot of making up to do...he should probably be 40 pounds at least! We don't build 'em frail in my family or DHs and Coley is VERY scrawny! However...he's also gone from a very sickly kid to a very healthy one. The littlest colds would knock him for a loop...now he's strong in that respect. Just after Audrey was born we all got that stupid norovirus..it was everywhere, at the OB's, at the Peds, at the school, and then at the stupid hospital...Coley got it first it lasted about 12 hours...me & DH got it...24-48 hours..course sleep deprivation & all...and Audrey got it too...UGH! It's harder to judge with her, she was less than a week old and was having trouble gaining anyhow cuz she was jaundice and 5 weeks early...her appetite was REAL low...

Ok, thanks again! Post away, I'm getting a ton from this!

KJ

[RathyKay]

I'm glad you posted to Hal. He just strikes me as very knowledgeable (and over my head), but he's happy to try and help. The last post of his I read said something about being busy and only popping in occassionally, so you might have to wait for a reply - just a head's up.

I never thought about a premie bucket, to go along with the autism bucket.:rolleyes:

And your comments on "just have another kid"... GFRach on GFAB has a son with celiac (actually, I can't remember if it's "officially" celiac, or "just" gluten sensitivity). He used to carry around a bowl with him everywhere he went because he threw up all the time. I can't remember what phobia the psych diagnosed him with because of the bowl. Uh, No! The bowl is for the vomit.

More thoughts:o... although I think this will be about it, unless you ask something that triggers more thoughts later on.:p

So, a year or two ago I was reading Generation Rx : how prescription drugs are altering American lives, minds, and bodies by Greg Critser. (Took me a bit to figure out the title. The cover shown on Amazon doesn't match the cover of the book at the library. Our library is now displaying pictures of the cover online though.) It's an anti-Big Pharma book and it talks about changes in the prescription drugs field. Big Pharma now pitches new drugs directly to consumers (not much profit on old / generic drugs), treat any symptom with a drug, treat the side effects of the new drug with another drug, maximizing your patent profits by rushing certain testing stages, new drugs just have to be better than placebos - not older, cheaper drugs, etc. etc. The part that got me thinking about you was... 1/2 or 2/3 the way into the book talking about the liver. Most of these drugs get processed in the liver and as a result of all these drugs "we're" prescribing, the liver is getting overworked and shutting down. But, it did say that if you get off these meds and give your liver a chance to rest, it will recover. Going along with this (from wikipedia)
The liver is among the few internal human organs capable of natural regeneration of lost tissue; as little as 25% of remaining liver can regenerate into a whole liver again.
I guess I'm thinking along the lines of that he has some enzyme activity. If you can just figure out what all places a stress on his liver and give it a break, he might very well completely recover from this? (When I dream, I dream big.) Until I looked that up on wikipedia, I was wondering if it were more like Type I diabetes. In Type I, the insulin-producing beta cells of the islets of Langerhans of the pancreas are destroyed leading to a deficiency of insulin. There is an association with gluten sensitivity and Type I diabetes. If the cells are lost as a result of gluten sensitivity, you'll probably benefit from going GF in other ways, but the cells are gone and there is no growing more. The diabetes is life-long.

Getting back to the DAN! doc... I don't know how heavy metals affect the liver (is that why he's low on that enzyme?), if Coley has any heavy metal toxin excretion issues, would chelation help, would it make things worse? Can you get the vitamin / mineral levels tested and optimize those? So... I've managed to write a post without any links (yay!), but I'm leaving you with a lot of questions I can't answer, and you probably can't either.;)

[Kristen (ColeysMom)]

Liver enzymes don't regenerate...I don't think they die either...but that's an interesting idea.

Anyhoo, the way I understand it is that everyone has an amount, so amount of these enzymes.

It's the activity of the enzymes that matters. And that is determined by genetics.

A good example is native american indians do not have active enzymes as Europeans for metabolizing alcohol. This is how the colonist stole their land from them. I always thought they just got them drunk, like a cheap date and took advantage of them...our geneticist explained that it's much like Coley's situation, and infact can be compared very well because he has likely traveled his toddlerhood 'drunk' and 'hung-over.' The capacity to metabolize it just isn't present...to Coley fructose is poison, just like alcohol is to american indians.

But everyone has a tolerance level...this is why some people can drink a lot and others cannot...once you start getting buzzed, you are getting alcohol toxicity...drunk and you've got it...puke, it's because your liver has officially gone on strike!

This is also why alcohol is a trigger for people who have a history of seizures.

Ok, so a similar thing can happen with anyone with fructose too...remember eating too much candy as a kid? Ears start ringing, stomach feels ill, maybe a head ache... Coley just gets there WAY faster. This will only change if he gets a transplant. As far as we know he has no liver damage. Although, I sort of image that must be at least a bit 'tired' and I fantasize about him 'healing' and being able to tolerate broccoli and stuff like that...because he LOVES veggies.

We've been told that this is a genetic thing and has nothing to do with his prematurity or anything that happened after or before his birth. But that needs to be taken with a grain of salt at this point because we don't know for SURE what it is...just know a few things that it isn't.

So, I kinda have this thought in my head about, firstly a premature liver, then, what happens to that premature liver with meds and antibiotics and vaccines and chemicals they pumped in him that they called food...well I guess I pumped the 'food' into him, but at their advice!

UGH! Friggen Zantac...I know it seems harmless, but he was on that stupid crap for 10 months, had it maxed out and then came off of it because it didn't help any. UGH! Read the literature on that and it's intended use is TEMPORARY, like 3 weeks - period! And on a little 10 pounder...LOVE OF GAWD!

Ok, don't get me started! :(