Need to put son on Casein free diet - need help

cruelshoes · Joined: 23 Sep 2005 Posts: 2139 Location: Washington State

My son saw the neurologist yesterday about his problems with writing and his suspected learning disorder. The neuro latched on to the idea of Aspergers, and wants to try Sean on a GF/CF diet. From what I am reading, I don't think Aspergers is a good fit for my son, but I am going to give the diet a try for a few months like the doctor asked.

I am so overhelmed about having to learn how to read labels AGAIN. Most of what Sean likes to eat has dairy in it. It seem like milk can hide in even more sneaky places than gluten.

Can anyone point me to a good starter guide? Maybe a list of forbidden food ingredients like we have for gluten? Opinions on good CF cheese-like-substances? Ideas for good CF candy?

He has his learning disability assessment next week (it takes 6 hours!), so I hope to know more then. We are not making any changes to his diet until then, so I have a few days to learn all I can about Casein.

Any help will be appreciated.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

aklap · Joined: 02 Oct 2004 Posts: 7795 Location: WI, USA

Good grief Colleen. Sorry to hear that Sad

You might try: http://www.gfcfdiet.com/ for starters

Yes casein is harder than gluten. Cheese is a tough one to try to replace. I delved into the CF world awhile back [I'm still CR - casein reduced].

http://gfcfdiet.com/NewpageDirectory6.htm
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

nancw · Joined: 04 Oct 2006 Posts: 712 Location: Denver, CO

Oh geez...sorry to hear this.
Casein is a tough one. Probiotics is one place it is very present. Cheese subs? Rice or soy...yuck to both. I can't have any of them due to other intols/allergies, but you may find something that appeals to your young'un. Dark chocolate typically does not have casein/dairy. Hard or chewy candies tend not to have it.

I'll keep thinking about this. I am so deep into label reading that I've pretty much given up on finding anything packaged/processed that I can have.

Almond milk is my milk sub of choice. I just put up w/ the soy lecithin. Mad

_________________
Nance

gluten, dairy, soy, rice, corn, yeast and 99% grain-free

GF in UK · Joined: 07 Jan 2008 Posts: 37 Location: Willington, England

How about sweets like jelly bears and that sort of thing? And yes, there's dark chocolate that has no dairy (several brands come to mind). It is difficult, I know, and more so for a child.

aklap · Joined: 02 Oct 2004 Posts: 7795 Location: WI, USA

I've been running into CF sites lately...

http://web.mit.edu/kevles/www/nomilk.html

http://www.breakingtheviciouscycle.info/knowledge_base/kb/casein_sensitivity.htm

http://www.allergygrocery.com/search.php - search for suitable food.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

forinajoy · Joined: 01 Aug 2006 Posts: 174 Location: Texas

Colleen, I just saw this post....Ina is GFCF...she actually has been CF for about 8 years which is longer than she has been GF....CF by itself is not so bad, it is the combination of GF and CF that is a bit more difficult....but it will also become second nature in time...the sight that Al gave www.gfcfdiet.com is the best one that I have found....

let's see, some advice.....watch meds closely, it is more likely for them to contain lactose than gluten...medical professionals do not all know the term "casein", so be careful and mention the word "milk" when you talk to them and also ask to see the ingredients label yourself....lunch meats as well seem to contain casein alot...I have been told that you need to be careful with lactic acid, which is in alot of lunch meats....hmmm....caramel color is usually a milk source.....Ina liked silk brand soy milk, but she has recently started reacting to soy, so she is now soy free as well, but if he can do soy then there alot of products that are wonderful substitutes for milk...Darifree potato milk is the milk we use most and sometimes I use coconut milk for baking....the only GF chocolate candy that I have found is Junior mints (like you find at the movie theatre)...skittles, nerds, runts, sweet tarts and smarties are all CF....Ina loves your truffle recipe, just be careful of the chocolate chips that you use... I used Paskesz brand, things with a kosher label are usually CF unless the kosher label has a D beside it

Ina's autistic symptoms GREATLY improved on the CF diet....in fact if she accidently gets casein, she has terrible autistic symptoms for 4 days...she is grumpy, moody, has tantrums... seems to fade out and really is unable to function, her eyes look like she is a wild animal waiting to explode. She had a casein reaction this summer. It was the first one in a LONG time and at first I thought "what is wrong with this kid?" My oldest son came home for a visit and said "she is acting like she is having a milk reaction" and I then remembered the source and sure enough in 4 days the reaction was gone, but it was a looong 4 days!!.....Ina explains that it feels like her brain is sick...

when I first started the Cf diet with her, I was skeptical, but I thought "what do I have to lose?"....I was amazed at the results, to the point that I was standing around with my mouth hanging open in shock....the results are quicker to notice than with gluten....but it is the same, in that, even a tiny amount matters and causes a reaction...

I may add another post if I get a brainstorm and think you need the info Very Happy

....if you have any major questions let me know....I hope that this diet helps Sean as much as it helps Ina.....there is a really good book that I recommend about Aspergers called "Thinking In Pictures" it is written by Temple Grandin, who has Aspergers, it basically explains how a person with Aspergers thinks....I found it very encouraging...Temple Grandin has a PHD and several patents to her name, she has seriously revolutionized the cattle slaughtering business... I would post the link to the book, but I am not that computer savvy...lol...I bought it at Barnes and Nobles
_________________
Connie, mom to Ina, 13 y/o with CD

cruelshoes · Joined: 23 Sep 2005 Posts: 2139 Location: Washington State

Thanks to everyone for the support and ideas. We seem to be doing OK with the diet, although it still makes me want to tear my hair out. Sean actually likes the soy cheese, so that has been a blessing. Although he is a boy, and I'm not sure he even chews his food before he swallows it, so consider that one. We have settled on almond milk for cooking and cereals. It think soy milk has a horrid after taste, but tha almond milk is not too bad.

forinajoy · Joined: 01 Aug 2006 Posts: 174 Location: Texas

Colleen, how long did the neurologist suggest that you try the diet? With Ina we noticed the difference in 4 days and many parents that I know that follow this diet also notice noticeable (sp?) results very quickly....personally if I did not notice big results within 2 weeks, I probably would not continue the diet....in that aspect it is not like the GF diet....and remember that Aspergers (and autism for that matter) are diagnosed basically by opinion....there is no "gold standard" for diagnosis.....so the neurologist could be wrong.....from my reading many aspergers people have above average intelligence...it seems to be their odd social skills and abnormal focus on what others would consider unimportant details (often parts of objects) that many professionals use as the basis of the aspergers diagnosis....Ina's diagnosis is somewhat unique because she also has a diagnosis of mild mental retardation and mild cerabal palsy with her autism diagnosis, her IQ was in the mid 60's...Ina was born in Romania and spent 3 years in an orphanage with very poor care (75 kids and 2 caregivers) and very poor nutrition.....the feeling is that she has some post- traumatic stuff going on b/c of all that....I am sure that I would have trauma if I endured what she has....I am just so grateful that I get to be her Mom.....she is so sweet....

My information on caramel color may be outdated, Ina has been CF for 8 years and that is how long ago I got that info...I avoid any caramel coloring, maybe I don't need to any more...I must go research this again
_________________
Connie, mom to Ina, 13 y/o with CD

cruelshoes · Joined: 23 Sep 2005 Posts: 2139 Location: Washington State

aklap · Joined: 02 Oct 2004 Posts: 7795 Location: WI, USA

Elana · Posted: Fri Mar 14, 2008 3:14 am Post subject: GFCF

Colleen-

I am on a GFCF diet and have many recipes here:

http://www.elanaspantry.com/

There are lots of recipes for sweets, such as this one for chocolate chip cookies:

http://www.elanaspantry.com/2007/05/30/dairy-free-gluten-free-chocolate-chip-cookies/

Also, Dagoba chocodrops are GFCF free.

Hope this helps and good luck with your son!

How did the assessment go on March 5th?

Elana
_________________
http://www.elanaspantry.com/