Re: sibling on SCD - question

[Guest guest]

I cannot answer your question but can only share what I have learned

from experience. I do not have any GI issues and neither do my older

2 kids. My younger two kids are celiac - one is autistic also. I

have twice gone gluten-free. The first time was while nursing my

celiac baby for 5 months and the second time was when our whole

family went gluten-free for 8 weeks to see if anyone else was celiac

since we had no insurance or money to get tested. Both times when

going GF, I was hungry all the time which passed after a couple

weeks. When I went back on gluten I got full real fast. It took a

long time to be able to eat an entire hamberger in one sitting.

Other than that, my older kids and I did not have any reaction to

going on or off gluten.

Last December our whole family went SCD. I did not expect to see any

reaction for me and my older 2 kids but I did. The first week was

the worst. The biggest thing is the urge to pee would come upon us

suddenly where we would have to run to the bathroom - even in the

night. My 10 year old whom has not had an accident since age 3

actually wet the bed. My daughter and I lost alot of weight right

away. We actually had to go clothes shopping because none of our

pants would stay on us. My oldest son has always had a problem with

bad breathe and that went away. Both kid's grades went up and they

made comments like, " I now only have to read the chapter once to

understand it " or " all of a sudden I got smarter " . We maintained the

diet until last month but a number of times cheated (except the

younger two). I remember on one such time I ate pizza (just 2

slices) and actually gained 6 lbs in one day! Some of the times when

we cheated we would all have horrible tummy aches - especially after

mexican food (tacos, burritos, beans & rice). My son's bad breathe

would return like before. Like you, I started feeling trapped. Will

I now have to keep the whole family on this diet forever so they

don't get tummy aches and balloon up?

Last month I found out I am pregnant. I always have a very difficult

time in the first trimester keeping food down and am very picky. The

smell of baking with nut flour makes me want to hurl. I could no

longer maintain the diet for the whole family. I committed myself to

baking once a week (while running to the bathroom every 20 minutes)

so I could keep the younger two on the diet but the rest of us are

off it. I still fix breakfast and some other meals SCD and drinks I

keep in the house are SCD legal but that is it. I have not gained

weight but again I can't keep much food down. My daughter has gained

a little weight but not like when we had gone off before. We have

not been experiencing tummy aches or any other problems from only

being SCD legal about 40% of the time. I think for us, 6 months was

enough time to help our digestive system work properly since we did

not have serious GI problems.

I do still intend on the family going back to SCD once I am past the

first trimester. I want my baby to have the greatest chance at a

normal life and want to make sure healing is complete with the rest

of us. Hope this helps.

> Okay, question regarding this time.

>

> He had no gut issues before SCD. He WAS a little more " addicted "

to carbs and sugar than I'd like, so I'm very thankful for SCD

switching gears on that one. But he's not ASD, he'd never gut

problems like Luke, etc. I just keep him and on it because 1)

it's easier to have the whole house legal, 2) it's healthy.

>

> NOW... only problem is, I've decided that packing SCD for all 3

kids every time they go somewhere (often separately) is SO much

trouble, that when I don't absolutely HAVE to, I'd just let and

eat what's offered in that setting (within reason). For

example, today, they were at a neighbors while I was at Luke's IEP

meeting. When she keeps kids she feeds them, and I know she

offers " healthy " choices by most standards. Today they had peanut

butter and jelly sandwich, pretzels, a banana, and watered down apple

juice. Nowhere NEAR legal, but NORMAL kid food, not flat out junk,

you know what I mean?? This would have been a very typical meal for

him before we went on SCD and he would have been FINE. But tonight

he had a very bad tummy ache and did not want dinner. He also had

VERY smelly gas. He has not had a BM since coming home but I can

tell he is very uncomfortable, I believe it is the gas rolling

around.

>

> So I'm left to wonder - by keeping him SCD legal all the time, have

I made him less able to tolerate those things now? I believe in this

diet and I believe it is healthy, but I just don't want him to NEVER

be able to eat other food, when he could before and be fine. So what

do I do? Do I give him illegals more often so that he is better able

to handle them again? Or do I keep him 100% legal, too, and

gradually wean him the same time I " wean " Luke (whenever that is, I

have no intention of that for a long time....) It's not the work of

packing his food that concerns me at this point, it's the idea that I

might actually be creating a dependency on SCD that wouldn't be there

otherwise?? I hope I'm making sense!!!!

>

> Have any of you dealt with this and what would you do? Correct any

glaring errors I've made in my assumptions.

>

> Thanks!

> in NC

> Mom of Luke, age 5, Asperger's/low-salicylate;

> , almost 4; and , 2 on Friday!!!

> All SCD since 1/26/04

>

>

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