New Here- Dd May Be Celiac

[Irishlass]

My dd has had allergy troubles all her 7 years, and joint pain most of them too. Her joint pain has increased the past couple of months, so I took her into the pediatrician today. After examining her (her stomach was very tender) and looking again at our history, he said the first thing he could think of was celiac. He sent us to the lab for blood tests for celiac and other things (RA, etc) and recommended that after the labs are drawn we go ahead and put her on a gluten free diet. He said the test may come back negative, that it often will even if there is a gluten problem, but that her clinical experience would be the real deciding factor- if the diet helps then that's the problem.

I went to our natural food store and got some gluten free products to replace some of the things we normally use. After perusing through the forums, though, I freaking out a little... shampoos, soaps, there are probably a dozen more things I can't think of that may have gluten in them.

In the initial phase, how important are the other stuff- is the food the most impt thing at first?

[mouse]

Breath deeply and take it slow. There is a lot of help here. But, you are blessed to have a wonderful doctor (so many were not). So, half of your battle is done. Worry about the gluten free foods first and maybe the shampoo and the soap she bathes in. Just in case they get in her mouth. The easiest for me at least was going with all fresh foods and then I did a lot of wok cooking. I did that as I researched what to buy and not buy. Many will post here to help you further. Good luck.

[flagbabyds]

Dude you have an awesome doc!

armetta is right, just breathe at first. If your doctor is that good, he might have some suggestions into the diet. I ould worry about the little things too, because if you are getting contamintaion frm somewhere, she might not get better. If you go the Whole Foods they have a gluten free bakehouse and it is really good gluten-free breads and pies and cookies and stuff.

If you h ave more questions, then you can e-mail me, I am 15 and have been celiac all my life.

[TCA]

It took me weeks to get the hang of all of this and I still struggle sometimes. We've all been there, so don't worry. You'll learn too. I have a list I started for people who keep my son that has the basics on it. There's a list of foods that he eats (very picky) included. PM me and I can send it to you. I spent days going through my cubbard and med cabinet to get rid of things. We were using some curel lotion that made my daughter very sick. She is hypersensitive, though. You will make mistakes, but don't panic. It all will come in time.

Be thankful for your doctor. I had the same symptoms all my life and no one would listen. They tested for RA and it was negative, so they thought it was in my head and called it growing pains. I am now pain free for the first time in my life and I'm now 30. I'm on allergy shots and have asthma, but it's getting better slowly. I hope your daughter feels better soon.

Let me know if I can help in any way.

[Irishlass]

Thanks for your thoughts everyone.

I do have a great dr- team of drs, actually. The dr we saw is in a two dr practice with the lady who is our main ped. She's been traveling a lot lately because she does a lot of autism research and is the DAN network's head dr.

Anyway, is there anywhere on the net where there is a list of manufactured products that are gluten free- foods, body care, etc?

[Guest nini]

there is the Delphi forums list which I can e-mail to you along with a bunch of other files I've put together in a Newbie survival kit... if you would like this e-mailed to you just e-mail me at nisla@comcast.net and in the subject line put "request newbie survival kit" and I will promptly e-mail it to you!

My daughter will be 6 next week and her and I both have been gluten-free for about 3 years now! It will be ok! Stick to foods that are naturally gluten-free at first, then you can try some of the substitute products. We all can help you figure out which ones taste better than others so you don't waste a ton of money!

[Guest Robbin]

Hi and welcome. WOW YOU HAVE A GREAT DOCTOR!! Yes, as nini said, it will get so much easier and if you get a couple of cookbooks, you can make substitutions for a lot of things. They are coming out with a lot of great products too. I would encourage also to find a support group maybe with other kids your daughters age. It helped my son when he went to camp for diabetes sooo much to see other kids like him, that he wasn't the only one with a different way of eating. Take care