Mom Looking for Advise on Celiac Disease

Hi K.,
I have a 2 yr old that has all the symptoms without the diagnosis of Celiac (we had the biopsy, but it showed negative...often when they're so young --i.e. 13 mos old-- the damage wouldn't have shown up yet anyway), so we treat her as if she has celiac, as well as avoiding numerous other foods we know she is allergic to.
We have found tremendous nutritional support with Reliv nutrition as her main supplement, and I have spent countless hours researching and reading labels to find yummy foods that she can eat.
It's not easy, but it's so worth it to be able to give her enough food to grow on!
One thing that I can imagine is extra hard, is that your son has already been able to eat foods with gluten in them-- whereas, my daughter never has tasted them.
We feed her a lot of rice, buckwheat (even though it sounds like it has wheat in it, it's not wheat at all), corn, fruits, veggies, salmon, among some other things. I just found a way to make pancakes out of a Arrowhead mills pancake mix (at Whole foods) with no eggs in them.
Feel free to contact me if you'd like to talk. Sometimes it's encouraging to talk to a mom who's been there!
--sincerely, E.
PS: I'm also intolerant to Gluten, so I've been staying away from all the same grains that Valerie can't have. It's quite an adventure! And sometimes very discouraging.

I know a woman with celiac disease. She forwarded me the following info to pass on to you.
She said you could start by going shopping at Fruitful Yield in Aurora. Her support group meets the first of the month at Edwards Outpatient in Plainfeild. The next one is in OCT. the website is www.glutenfreewikaduke.blogspot.com
She says there are a few moms in the group who children have celiac disease...the ages range from 6-18 yrs. Everyone is welcome.

She also said she would be happy to talk with you directly. I will give you her number if you want to email me. I also have another email full of resources she sent too. I can forward that too to your direct email.

____@____.com

Good luck with everything and I hope this helps.

R.

Sorry to hear about your son's diagnosis. From what I understand, celiac disease is a very hard thing to diagnose, especially in kids.

My friend's mother-in-law has celiac disease and I believe she buys gluten-free bread at Trader Joe's. I was just at Trader Joe's today and saw on their new product shelf two different types of gluten-free granola.

So...you might try Trader Joe's and Whole Foods to start. I am sure that traditional grocery stores like Dominick's and Jewel have some gluten-free products as well. You will just have to search/read labels.

Good luck!

A.

Hi:

I have a good friend that has this disease. She does most of her shopping at Woodman's on Orchard Road, just north of I88. She told me they have an excellent selection of gluten free products. You can also try mail order, but that is very expensive. Good luck!

K.

K.,
My niece was diagnosed with Celiac last fall, and I know it's been h*** o* their family so I know a little bit about what you are going through. I believe that Whole Foods has a nice selection of gluten free items, and recently my Jewel has had an organic section added to the dry goods area and they have a couple of the gluten free staples like - baking mixes (for bread, pizza, muffins) pasta items, as well as some snack items like fruit bars, cookies, snacks.

I'm sure I could get you in touch with my sister-in-law and she could give you some other great resources that she has used, so just let me know and I'll give her your Email. Good luck!

I think that Whole Foods has gluten free foods. They are going to be building one on 75th st. and Route 59 but it won't open until 2008. I also know of one in Wheaton in the Danada shopping center.
I hope that helped.