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Post by PaigesMom on Jul 24, 2004 21:29:50 GMT -5
Hi everyone,
Haven't been around in a couple of weeks and have been missing Uno, feeling a little sad on and off.
Paige was diagnosed with Celiac's Disease a week ago Friday. After her biopsy the dr. came out and showed us pictures of the ulcers in her intestines.
I've been so wrapped up in trying to find gluten free foods..........it's depressing.......not to much of a selection, price, just the fact that she has this crap.........
Anyways, if anyone knows of anyone who's DS child has Celiacs, or if anyone knows anything about Celiacs in people w/DS, including where to buy food at reasonable prices and or recipes, I'd LOVE to hear about it.
Debbie
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Post by Claire on Jul 24, 2004 21:38:41 GMT -5
Sorry can't really help you here, but have you tried making an appointment with a dietician or even looking over the net for celiac diets? Wish you luck!  |
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Post by TriciaF on Jul 24, 2004 23:53:23 GMT -5
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Post by Ashlea on Jul 25, 2004 12:48:27 GMT -5
Debbie - I buy alot of Chandler's food at the regular grocery store and at a local health food store. You really just need to shop around the health food stores in your area. Usually they are very helpful and mostly know what they're talking about. Is there any food Paige especially likes? Maybe I can make some suggestions. Right now, while you & Paige are getting used to it, I would try to keep it as simple as possible. Also, the www.celiac.com website has a place where you can shop for food, but most of it you should be able to find local. You should also check out on the www.celiac.com site towards the bottom of the list there is a Safe/Forbidden list. It's several pages long, but it tells you in detail all the ingredients to look for on the labels. This is a MUST have for new shopping. What area of the country do you live in? There are several support groups like ROCK, Raising Our Celiac Kids. There might be one in your area. Anyway, I know how you feel..... Email if you want. Hang in there..... I gets better. I promise. |
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Post by shellk on Jul 25, 2004 18:55:22 GMT -5
Debbie, I have no advice or experience just wanted to wish you luck and send a hug  Michele |
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Post by meghans_mom on Jul 25, 2004 19:08:13 GMT -5
Debbie - sorry to hear about Paige's diagnosis...I can only imagine how difficult it is to get used to - especially with having to change over all the foods and all.
I don't know if it was you or not but someone recently posted on the health discussions about Celiac and Laura Snowbird posted some links that were supposed to be helpful. Have you checked on-line for gluten free foods? We have a grocery store here that has a huge selection of stuff - its a chain...now if I could only remember the name of it, darn it. (big help I am, hunh?)
oh wait -- Wild By Nature, it's called....don't know if they're only on Long Island but we have several of them. Also health food stores should be good sources too.
anyways - hugs and good luck!
laurie
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Post by laurasnowbird on Jul 25, 2004 19:24:32 GMT -5
Hi Debbie! Sorry to hear that the biopsy turned out to be positive for celiac - I know that the diet means a major life change. What kind of recipes are you looking for? I think I mentioned to you earlier that my best friend is a celiac, and she is also an outstanding cook and baker, so she has been trying lots of new recipes since being diagnosed. What kinds of recipes are you looking for? I'll get some from her if you would like. (I have a good recipe for a carrot cake that I made for her birthday last year.) I know that wheat hides in lots of unexpected places. At New Year last year I had my girlfriend and her husband over for dinner, and I cook a turkey every year. I had to search to make sure that the turkey I used was not injected with anything contraband! I know for sure that in addition to the other links I posted that this particular brand of turkey is g-f. Soooo, at least you won't have to think about THIS at the holidays, LOL www.jennie-o.com/product_gluten-free.aspAnyway, I'm sure you must be overwhelmed right now, but if I can help in any way, please let me know, okay? Hugs to you! Laura |
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Post by Staci on Jul 25, 2004 23:31:06 GMT -5
Oh, Debbie...I'm so sorry that Paige has been diagnosed with this  Aidan was "loosly" diagnosed with this in Sept of last year...we put him on a gluten free diet, cuz that's what we were supposed to do, and it turned out he had a whole other set of problems. His not thriving and throwing up troubles turned out to be an intestional blockage...anyhoo...I STILL have these books on gluten free recipes (two recipe books, The Gluten-Free Gourmet and Incredible Edible Gluten Free Recipes for Kids) and a book called Kids with Celiac's Disease...A Family Gude to Raising Happy, Healthy, Gluten-free Children that I do NOT know what to do with these books...I want to send them to you! If you will email me your address, I can get them in the mail, if you want them at all! Please let me know, ok? My email is lanea24@hotmail.com It was hard in the beginning to start cooking gluten free...and Chandler's mom, Ashlea, was a BIG, BIG help! She was truly wonderful...I would have been so lost without her help! But after a month or two, it started getting easier (the cooking and finding good snacks and yummy foods that Aidan would eat). I know it seems like a huge, huge task, but you will become a pro at it soon...even though it really sucks, I know Anyway...give me an email if you want those books! I really want to give them to you, if you want them. Staci |
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Post by PaigesMom on Jul 26, 2004 10:07:57 GMT -5
Thank you all for all of your support ;D , most people dont understand, and having other kids makes it difficult because I either have to make two meals or make everyone in the house gluten free, which when it comes down to it is unrealistic, not fair, and to expensive!!!
I have found several things - a variety of breads, a pancake mix, some cake mixes, pastas, a chili mix and some condiments. I've been researching my butt off and have printed lists of safe and forbidden ingredients from celiac.com, which has been a lifesaver for me so far. I had a breakdown in the store a week ago Sunday when I needed to find a gluten free spaghetti sauce and spent over a hour in the isle reading each and every label - as some of you know, gluten hides in everything - anything that has the ingredient "natural flavor/ing" or "spices" could have gluten as a binding agent so it's off limits until you call the manufacturer.
So that's the other thing I've been doing, calling manufacturers for gluten free product lists. It is time consuming and frustrating.
The thing is that Paige wont eat half of what I have found, and to be honest, I've tried it, and and alot of it is nasty. Yesterday AM I made her pancakes from scratch, and she scoffed at them.
The other thing is the cross contamination deal - having to use separate utensils/pots/pans/colanders - everything so that nothing with gluten touches accidentally anything without it - like putting your knife into the jelly jar after it's touched your bread contaminates the whole jelly jar for a Celiac person.
Anyhow, enough rambling -
Laura, any recipes you can provide would be of so much help. Now I have been resorting to pre packaged foods just to give her something to eat, but the reality is that I need to cook from scratch and then freeze things for her..............that would be so awesome.
Ashlea, thank you for your PM and email. I will try anything "kid friendly" for Paige at this point so anything you suggest that Chandler likes, I'll try!!!
Staci - I WOULD LOVE those books. I was going to buy both recipe books you named (they were recommended to me by my GI dr. ) - I bought Raising Kids with Celiac Disease and have been reading them. I will email you my address and you can send them COD or I will reimburse you for shipping. Thank you so much!!
Thank you everyone.......there was a thread "What Uno Means To Me" ---- and this is what Uno means to me -- a big family who is willing to help others even when they have so much they are dealing with themselves....a place to come to to read, laugh or cry.....
I know I dont get around to much, but when I'm here, I am home!!! ;D
Debbie
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Post by Robin on Jul 26, 2004 10:39:14 GMT -5
Aww Debbie, we wer gone for the weekend so I just saw your post about Paige. I am sorry she has celiac's!!! I have nothing to offer you except a shoulder so feel free anytime to just let loose to us, we are all here for you and we understand, we truely do!!! Hugs to you and the princess,
Robin
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