going 2 try gluten free diet again,where to start?

[Anonymous]

hi everyone,

i am at my end with his restless sleep. i was going to ask my ped for a refearal to a dietician.. to help me do a gluten/dairy/soy free diet.. but never got around to it.. i guess i have just put it off thinking to myself that he doesnt have the intolerance because he is well during the day.

anyhow, i would like to start this diet… but not sure if i should do it on my own!

do you guys do it on your own? or have a doctor or specialist help you? shane is a picky eater as it is.. and i am concerned he wont be getting what he needs on this strict diet.

where should i start??

shanesmom2008-01-20 09:45:26

[Anonymous]

and i have a number to a sleep behaviorist that i looked up on my own. should i call him first and get him sleep studied??? or try the diet first?

thanks! as you can tell i have been dealing with this for a while..and am sooooooo lost!

[hellbennt]

this thread should help:

https://www.infantreflux.org/forum/forum_posts.asp?TID=7940&KW=

good info & also the yahoo group that sheri loves

there’s also:

Milk allergy/night wakings/lLoveMySophia: https://www.infantreflux.org/forum/forum_posts.asp?TID=10017&KW=

also: also aloe vera? probiotics?

salacylates & amines? http://www.cs.nsw.gov.au/rpa/allergy/resources/foodintol/salicylates.cfm

Slippery elm?: http://www.ajc.com/health/altmed/shared/health/alt_medicine/ConsHerbs/SlipperyElmch.html

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One of the most useful ones I think is Jax Peters Lowell, Against the Grain: the slightly eccentric guide to living well without gluten or wheat. It’s more of an informational book than a cookbook (though it does have some very good — and simple — recipes) but I found it quite useful for what to look for ingredients wise, what I could or couldn’t eat at restaurants, etc. from Christine, Palemer’s Mom https://www.infantreflux.org/forum/forum_posts.asp?TID=4225&TPN=2

http://www.celiac.com/index.html
http://www.csaceliacs.org/
http://www.calgaryceliac.com/

And some yummy gluten free blogs!

http://glutenfreegirl.blogspot.com/
http://glutenfreegoddess.blogspot.com/

gluten free casin free: http://health.groups.yahoo.com/group/GFCFKids/hellbennt2008-01-20 10:49:05

[Anonymous]

Lauren,

I am a dietitician and I would recommend that if you decide to go the diet route that you do get in touch with a ped dietitican who can work with you all. I mainly worked with Cancer and stroke patients when I was working so Gluten isn’t my strong point, but since you say he is a picky eater I would definately recommend meeting with a professional to make sure that you are getting him the most bang for his buck so to speak with the restrictions. Best of Luck. Keep us posted.

[Anonymous]

Lauren – we’ve just gone gluten, casein, soy and rice free with Ben 2 months ago. I can give you LOTS of tips of what to try and food help. I’m actually running off to the ped allergist with Ben shortly, but I will try to post back tonight or tomorrow.

[Anonymous]

my girls were diagnosed with celiac 2 years ago—so there is no doubt or guessing for us—-we HAVE to be totally gluten free. we have actually done most of the diet on our own. i have a friend with celiac, so i knew a little about it before my kids were diagnosed, but i used to spend alot of time on a gluten free web site and gained a little more info. my girls used to tell me that they thought i knew more about the celiac diet than my friend who had been diagnosed for 7 or 8 years. bette hagman gives alternate ingredients to use in some of her recipes for people with various allergies besides having celiac disease.

if you ever want to have your child tested to see if celiac disease is actually a real problem for your child, your child will have to be eating gluten, but, at this young of an age, the celiac tests are not particularly accurate. also, sometimes a person with celiac disease will be lactose intolerant for a while because of the damage to the villi. once the damage is healed, the lactose intolerance goes away.

if you really want to go gluten free, you have to read labels VERY carefully. don’t just trust the allergy statement at the bottom of the ingredient list. sometimes if the offending ingredient is already listed in the ingredients, it won’t necessarily be listed in the allergy statement. no wheat, barley, rye, oats, oat flour or malt or malt flavoring. there are guranteed gluten free oats, but they cost a fair amound. we buy them from glutenfreeoats.com, but bob’s red mill is carrying them now, also—rolled and steel cut. there are a number of other places that also sell them.

it may not be the easiest thing to find a dietician who is well versed on celiac disease—-it used to be considered a rare disease, but is now considered to be very common—-the common disease that nobody knows about.

[Anonymous]

We did our diet change without help, but if a dietician is a possibility, I’d definitely go for it. The first few visits to the grocery store in search of “safe” foods were so depressing. If you can manage it, try going without Shane and giving yourself a lot of time to read labels. I had Kaelyn with me the first time and I had trouble finding anything because she got fidgety.

[Anonymous]

Thank You everyone..

I decided that i need to seek help before doing it.

Kim~ Kaelyn was allowed to have soy though right? If not… How did you do enough calcium and fat at shanes age?

Christine~ I thought oats were o.k? Is it only because they might have been contaminated?

Sheri~ Have you noticed any change with Ben since the gluten/dairy/soy/rice free diet? And why rice??

[Anonymous]

commercial oats carry too much risk of contamination. a celiac only needs a crumb to set off the autoimmune reaction. guaranteed gluten free oats are the only ones that are safe to use.

[Anonymous]

Hi Lauren,

With Ben we initially removed milk/casein and about 5 days later elimintated gluten and soy. He was then drinking rice milk and also getting a fair bit of rice in gluten free products since rice flour is very common in them. I guess his sensitive immune system was “overloaded” with rice, and he quickly developed a rice intolerance too. Now he is drinking Vance’s DariFree which is a potato based milk substitute, fortified with Calcium, vit D, etc. But we really have to try and get a lot of alternative protein sources (mostly meat since Ben is allergic to peanut) in his diet to make up for the lack of dairy/soy protein.

Here is a link to a posting I had started about Ben’s symptoms when this all began: https://www.infantreflux.org/forum/forum_posts.asp?TID=9894&PN=1

Ben’s symptoms have definately started to improve since overhauling his diet. Now Shane’s symptoms may be completely different than Ben’s, but an elimination type diet may be worth looking into since our reflux kids are often quite sensitive to foods. I agree that it is likely a good idea to seek help from someone (whether a dietician, allergist, immunologist, etc.) before starting. It can seem overwhelming to do it alone. I’ll try to PM you with a little more info.

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