Contemplating CF... need nutritional help | Autism PDD

Digestive Enzymes:

http://www.enzymestuff.com/basicswhichenzyme.htm

http://www.enzymestuff.com/conditionbacteria.htm (yeast/ bacteria in gut)

http://www.enzymedica.com/newsletter_download.php?id=5

http://www.greatplainslaboratory.com/book/bk8sect1.html

http://www.enzymeuniversity.com/artman/publish/article_116.s html

http://osiris.sunderland.ac.uk/autism/durham95.html

Books (digestive enzymes):

Enzymes for Autism and other Neurological Conditions: A Practical Guide by Karen L DeFelice.

Message Board (digestive enzymes):  http://health.groups.yahoo.com/group/EnzymesandAutism/?yguid =136552797

Purchasing Digestive Enzymes online:

http://www.ecolifeus.com/index.asp

http://www.houstonni.com/  (AFP Peptizyde, No-Phenol, Zyme Prime)

http://www.kirkmanlabs.com/

http://www.asdmarket.com/

Phenols (Salisylate):

http://www.enzymestuff.com/nofenolfile.htm

http://www.enzymestuff.com/conditionsensitivities.htm#10

http://www.angelfire.com/on/FEATNews/phenols.html

http://www.geocities.com/scd_post/faq2.html

http://www.enzymestuff.com/discussiondairy.htm#2

http://www.danasview.net/phenol.htm

The Norwegian government has written guidelines for starting the GFCF diet.  They're obviously pretty conservative, but that might appeal to you since you were against the diet to begin with.  I summarized them in English on the forum a month or so ago.  Here's the steps they recommend:

1)  Get a physical.

2)  Consult a nutrition specialist to evaluate current diet and get advice on how these foods can be replaced by GFCF foods.  GFCF foods tend to have less protein, calcium, fiber, and B-vitamins than regular foods, so supplements might be necessary. 

3)  Do a test for celiac disease before starting the diet (I get the impression that the test will be invalid if done while on a GF diet).

4)  Consider how a strict diet will work for the child and the whole family.  How will you be able to handle a new source of conflict ("no, you can't eat that" and then maybe the child starts sneaking food).  How will you be able to handle new limits on your social life (hard to eat out)?  Might the diet worsen your child's food issues/aversions and skepticism towards new foods?  Do you have time to prepare special foods?  Will the whole family eat GFCF foods?

5)  Consider the financial impact of buying more expensive GFCF foods.

6)  Seek information through autism organizations, but also organizations with expertise on other problems affecting diet (like milk allergies and celiac disease).

7)  Plan how to evaluate the diet's success.  Keep a diary.

8)  Cooperate with daycare and school in implementing and evaluating the diet. 

9)  Implement slowly, focusing at first on just one meal-type.  I'll use the example of breakfast.  After several days (or more) practice with GFCF breakfasts, work on another meal-type and then another until you have a completely GFCF diet.

10)  Stay in contact with the doctor and nutritionist (to make sure the child follows a good growth curve, among other things).

This post got lost in another one for some reason (don't know how I managed that) so I am trying again....

First I have to admit I was 100% against even trying the diet with my first son as he ate a VERY well balanced diet (LOVED veggies and ate a wide variety of foods) and I didn't want to mess with that. 

Little history... We took Matthew off milk entirely for a month this summer questioning an allergy because of uncontrolled eczema issues.  During that time his chronic constipation (he's been on Miralax since he was 7 months old) resolved and he was a completely different kid.  We've since discovered he is not allergic and re-added milk into his diet and have noticed an increase in "odd" behaviors (for lack of a better term).  Both dh and I noticed it but were afraid to admitt it.

So here we are contemplating trialing CF again... but I just don't know how to go about that and make sure that I maintain the right nutritional balance for my son.  He's allergic to soy, peanuts, tree nuts, vanilla... and has issues with rice (not an official allergy as he tests negative but it causes eczema flares and rashes so we limit).  He 100% refuses any vegatables... and trust me I offer EVERY meal and EVERY meal they are left untouched no matter how I present them.  He rarely touches meat... he'll eat hot dogs (we buy Applegate Farms organic nitrate/nitrite/antibiotic free ones) and small amounts of chicken but thats it.  How on earth am I supposed to get enough protein, fat, calcium, and vit D in his diet without his milk???  I just don't feel comfortable going CF until I know how to get what his body needs without it.  Any suggestions.

Dh and I agreed that if we see a dramatic improvement then we'll consider GF as well... but for now with all of his other allergies/intolerences and pickiness it'd be REALLY hard to feed him so we'd like to take it one step at a time.  We also agreed if we saw improvments we'd try the diet on Jason as weel... he's not going to like that

I am sure that you have done your research already, but just as a note (in case it did not come up so bluntly) for our kids many believe that Gluten and Casien can act almost like opiates throwing off their whole system and certainly in the areas of processing and behavior.

It is tough to do, but you can find some really good products through trial and error and we have gluten/casien free crackers, cookies, baking mixes (all important for the birthday parties so he does not feel excluded...including his own birthday cake!), and even found some ice cream (Rice Dream) that seems to be great.

We also stay away from soy so I know how tough this can be.

Good luck in this and all things!

Thanks for the replies and links ladies!!  I really need to do my research if this is something we decide to do. 

KathyK... he's allergic to Soy anyway so that isn't an issue.  The problem is he has some issues with rice as well... I think that is going to be our biggest problem and the reason why I am not starting out going both GF and CF... one at a time. 

Hi Brown:

We have done GF/CF due to gut issues.  This page may be able to address some of your concerns:

http://brighttots.com/diet.html

Additionally, he receives a daily vitamin with Omega's.  We had a picky eater.  His favorites all contained huge amounts of gluten.  Since going on the diet...his appetite and new foods allowances have increased dramtically. 

He still has sensory issues with fruit/veggies.  However, we found that freezing or offering dehydrated versions are acceptable.

Luck.