Celiac Disease - Jacksonville, NC

I researched this disease on Google and have never heard of this condition. So I inquired on my website's message board asking for information re: Celiac Disease- to see if there was anyone who could give a testimonial or advise to help you. Here is what was emailed to me from Carolyn K.

My daughter and I both have Celiac Sprue. We have both been drinking the mangosteen juice since March of 2007. We both eat a gluten free diet, but the juice helps us build up our immune system. One of the benefits of having Celiac Sprue, is that it is controlable with what you eat. At least when I eat at home. When you eat out, that is a different matter. The juice will not take away the disease, it will help build up our bodies as we eat proper nutrition. For more information contact me at www.insidemangosteen.com/judy0114.

L.- Hi!
Use rice flour instead of wheat flour, you can find it in most asian stores, and even on line. I have raised kids overseas, and in other parts of the world breakfast isn't want we eat. For instance in Europe they eat beans, toast, mushrooms and tomatoes. In Asia it's rice, rice, and more rice. It will be hard for you to find "American" breakfast foods that don't carry wheat, so don't limit his eating to what we call breakfast foods, however with two kids, you should try to curve his picky eating habits too, wheat free is one thing, but making several differnt meals for each person in your home will sooner or later that it's toll on you. Remember you kids will never know what starving is but may be hungry (by choose)!
Good luck.

I have a friend with celeiac's disease. These are a few links to get you started. There is also a grocery list book you can get to help you find the foods you need. Whole Foods is a good source for off-the-shelf foods. The muffins you can probably use rice flour for, but check the links for better advice. It is managable, but a bit more work. Thankfully, there are a lot of people with it so resources for you are available.

http://www.csaceliacs.org/recipes.php

http://www.glutenfreeclub.com/?ref=MyGlutenFreeRecipes.com

http://www.triumphdining.com/?gclid=CIDAhpzv25ICFQksswodK...

http://myglutenfreecookbook.blogspot.com/

L.,
I may be dealing with a celiac toddler (we are awaiting test results currently!). We will be going gluten free anyway, as he was diagnosed with autism in January and parents say lots of kids with autism do well on a gluten free/casein free diet. We are already casein free. I do know it is a life altering diagnosis; I can't believe everything that has gluten in it! My son has had an allergy test done that showed severe allergy to wheat, gluten, oats, barley, etc.

I am wondering which test you had done for celiac? Our doctor at Vanderbilt Children's wanted to do the genetic blood test for it, and I'm afraid it won't give a definitive answer. We are trying to hold off on the gluten free until after we get test results.

Anyway, thanks for posting. I have gotten some good tips from people for recipes, websites, etc. I do know there is a yahoo group called gfcf kids that has lots of recipes. You may want to check them out.
L.

i recommen trying cambrooke foods.. a bunch of their foods have no gluten or wheat..cambrookefoods.com

or you can try kroger....they have a natural food section..and have a few selections...

I am new to Celiac Disease also. I was diagnosed with it approximately 3 months ago and my 10 year old son has just been diagnosed with it. My son is extremely picky about his food and we are also experiencing a problem. Particularly lunches. That is my background.

I am not sure where you are located, but I joined the local Celiac group. This has been an enormous help! The support is phenomenal. As for muffins, I have found that I like the products from Gluten Free Pantry. You can find them on line, but you must buy in bulk. They are also sold at Earth Fare. I have found more things that I do not like, then what I like. It really is a hit or miss, depending on your son's tastes.

A.

check out the gluten free products on amazon.com. the prices are great, shipping is free (over $25) and no sales tax. you may want to try the products first at the health food store, since you will have to order in bulk. found this resource from a mother of 5 who has celiac and has 2 affected children.

I do not have a toddler with celiac but my husband & 19yo daughter have it & we run a gluten free home. We have been doing this since December 2006. We have 4 other children, 2 boys 10 and 21 and 2 girls 15 and 23.

We LOVE Gluten Free Pantry's Muffins & Scones Mix. You can just add blueberries in as many as you like before baking. We add chocolate chips & it makes wonderful muffins. It's best to put them in a sealed container when they've cooled off or freeze them for later use. In a house our size they don't last long.

If he likes pancakes, Bob's Red Mill GF Pancake Mix is our favorite. For waffles we like Pamela's Baking and Pancake Mix. It makes the best waffles, we didn't care for the pancakes though. You can also use that mix for lots of baking.

If he'll eat Gogurt it's gluten free. Scrambled eggs with perhaps ham cut up in it or cheese.

EnviroKidz has lots of gluten free cold cereals http://www.naturespath.com/products/cold_cereals

Gluten Free Pantry also has a great Coffee Cake mix. In fact we had this weekend, very good stuff.

Amazon.com has tons of gluten free items, just go to grocery & type in gluten free. You have to buy the case (which often isn't much) but most everything qualifies for Super Saver Shipping (if you spend $25 or more free shipping) so it comes out cheaper than most stores.

If there is a Whole Foods (or in our case Wild Oats-soon to be Whole Foods) in your area, they have a wonderful selection of bagles. It's their 365 Brand and they are delicious toasted with jam or cream cheese on it. There is also cinnamon raisin bagels that my daughter just loves!

KinnickKinnick (also at Whole Foods) has a wonderful chocolate covered donut (in the freezer section) This is purely a treat as they are very expensive. Now only my 19yo and husband have been confirmed celiac, we just run a gluten free home so I don't lose my sanity (what's left of it) trying to cook 2 kinds of meals. I spend enough time in the kitchen as this diet kind of forces you to do that.

Van's makes a great frozen gf waffle. I just don't buy them because..well you do the math...much cheaper for me to bake them from scratch using the Pamela's mentioned earlier.

If you can get him to eat fruit, cut up, that is always good.

Jimmy Dean regular sausage is gluten free.

Walmart labels their gluten free products which is great!! I just bought some Great Value bacon over the weekend that was labeled gluten free (on the back). Good bacon BTW.

I hope that helps.

Find out if there's a local support group in your area. Often health food stores know if there is one or your local library even. I head up the Memphis Celiac Support Group along with my 19yo daughter, Sarah. We meet the 4th Monday of every month at Whole Foods (currently called Wild Oats) at 7pm (if you are in this area).

I'm also on a yahoogroup for celiacs. We make a pun on the name and call ourselves silly yaks, but it's a very informative group, very active & chatty. But I have learned so much from this group already. http://health.groups.yahoo.com/group/SillyYaks/

I've not looked, but there is probably a yahoo group for Mom's of toddler celiacs too.

Best of luck to you. This is a life altering diagnosis, but you are very, very lucky to have found this out soon quickly. Most people, like my mother-in-law, dont' find out till they are much older, she was in her mid-50's. She suffered her whole life and never knew what was wrong or really that there was anything wrong. She just assumed everyone had runny poop and tummy aches. Diagnosis from the time a person sees a doctor for help till they figure it out takes on average 10 years!! 10 freakin' years! So to find out while he's so little is a blessing.

He will always know the taste of gluten free food & will not feel he's being deprived like many do that have to alter their life so much. He will get curious about other foods especially if you don't run a completely gluten free home. I let my other children eat gluten OUTSIDE the home. Sarah (my 19yo) get so very sick from just crumbs that it's not worth the risk. And as a family, we support one another 100% even if that means giving up some of the things we use to think were so important...like english muffins (haven't found one I like yet, LOL)

Anyway, I've said too much. If you want/need more information, you may email me privately at ____@____.com

L.,
My niece has celiac. I have used a few gluten free baking mixes from Bob's Red Mills (I got them at the commissary) and they are pretty good. My sister-in-law has done alot of research & tried many gluten free things. She told me she has a very good muffin mix. If you would like, I can give her your contact info. I am sure she would be happy to pass on anything she has figured out.

advice from an RD, LDN:
You are going to have to buy gluten free mixes. They do have a pancake mix. Probably muffins.
In my area the best place to find gluten free foods is Nutrition World, Green Life grocery, or Village Market.
Bi lo has a small gluten free section.
I have a patient with celiac disease. You are going to have to get used to READING LABELS. Start with looking for the words wheat, graham, barley and rye but there are MANY hidden sources of gluten. This celiac.com website has a full list of safe and unsafe foods. I really like it.

There are some really good websites available for you.
The websites are celiac.com,
mayoclinic,.com/health/celiac-disease,
celiac.org,
and nubella.com

Good luck. He will have to stay completely off gluten for the rest of his life, I am told. I have a friend who says with one small amount of gluten, she has symptoms for months. It can be managed though. There are many more foods available and labeled as gluten free than in the past. Apparently in Europe, celiac disease has been recognized for many more years than in the US, so you might find some resources there.