I am looking for other moms out there who have had to go throught this testing. My 6 yr old DD was having issues with abdominal pain and has been constipated since she was little, so I took her to a GI specialist they did some bloodwork and found that 1 of the 3 antibody tests for celiac came back positive, now they have sceduled an Endoscopy for Dec. 7th.
I am wondering how many of you have been thru this and what was the outcome, postive or negative on the celiac and if positive how did your child handle the diet change, I am worried especially about school lunches I have tries some of the breads etc. um can we say not so good. Any advise would be greatly appreciated. Thanks.
My neighbor's daughter was diagnosed with type 1 diabetes at 3 and with celiac in her teens. She has many things she cannot eat, but there are many things she can. It is a bit more expensive, but can be done. Nutritionists help.
K.
http://K..myshaklee.com
Hi S.~
Yes this is life changing, but it can truly be a good thing. Our entire family went gluten/wheat free a little over a year ago. Both kids are healthy and thriving. Check out celiac.com they have a discussion/forum for parents of babies and kids with celiac disease. It is totally helpful! Also, I might suggest staying away from bread in the beginning. Give your tastebuds a chance to forget what regular bread tasted like - I have a whole file on the gluten free thing. Many will tell you that it is more expensive to eat gluten free - NOT TRUE. We eat pretty mainstream stuff - you just have to know the brands to trust. I shop the regular aisles at rainbow and cub for the majority of our shopping. (trader joe's and fresh and natural for the FEW specialty items that we buy). And I have worked it out with the school cafeteria - my kids (ages 5 and 8) are able to eat hot lunch at school about 6 times per month. Are you in the Roseville school district? They totally understand the food allergy intolerance things - and I can help you through it. Please feel free to email me and I can help you on this journey!
~S.
My mom has Celiac, and I know that she feels 100000 x better now that she has cut gluten out of her diet. Her mood is better. Her health is better. She actually says that it's easy to stay away from gluten, knowing how crappy it makes her feel.
Unfortunately, unless the school has a salad bar and you've got a salad-loving 6 year old, I see a lot of packed lunches in your future. You just can't trust that there will be no gluten in a school lunch - it hides everywhere. Soups, sauces, dressings... And, unfortunately, once she goes off of gluten (after all the testing is accomplished) the slightest little bit will make her sick. Really sick.
Noodles restaurant does have a gluten-free rice noodle if you ask for it. Also, Chipotle is a great place to get Gfree meals out. Look into Bento lunches and see if you can't get some cute ideas for lunches that aren't centered around a sandwich. They don't actually have to be THAT intricate. No one expects you to make Hello Kitty rice patties every day, unless that's what you're into.
Keep trying various products - especially mixes for things you make fresh. I can't tell the difference between Mom's pancakes and "real" pancakes, for example. The good news is that Celiac is becoming more common, and there are a lot more products out there than there were a year ago, or five years ago.
Good luck!
A. @ http://prettybabies.blogspot.com
We went through this over a year ago with my son. After all of the tests and the endoscopy it was determined he was borderline. No change in diet necessary at the time but they did have us give him Miralax to help soften the stools. We did that for almost a year and haven't had a problem since. My youngest is now starting to act the way he did so I've decided to start her on the Miralax and see how it goes. They told us with him being borderline there is the potential for needing special diet in the future.
When we thought we were going to do all the diet change, we finally came to the realization that the change would be harder on us the adults than it would be on them.
Here is one of the websites we had looked at and there are so many more out their.
http://www.csaceliacs.org/recipes.php
Good luck!
My daughter was about a year when they thought she might have celiac disease. Her blood results came out something like you described, so they wanted to do the Endoscopy as well. She is very small/petite for her age and wasn't growing well at the time and they didn't want to miss anything. We had the endoscopy done and it turned out she was fine. I did limit the amount of gluten she had for awhile after the test (can't change it before or the test results will be wrong) but she eats everything normal now. She's 3.
Hi! Noone in my family has been diagnosed with Celiacs, however I do- from time to time- try to be gluten free- I found a potato bread that my son LOVES and requests even now- that was gluten free- I will see if I can find the brand and let you know. Also, we eat gluten free cookies- peanutbutter and oatmeal- that are both better than the regular home made with flour cookies. We didn't care for rice pasta- but haven't tried corn yet, it may not be as pasty.
My daughter doesn't have celiacs but we are gluten-free. Actually, once you get the hang of it, it's not too hard. Yes, most of the breads are yucky but we found one that tastes like regular bread. All three of my kids have taken cold lunch since they started school and my oldest is a junior in high school, plenty of choices for them.
I'd be happy to help you walk through this. I would just start to note how much bread, or gluten containing, foods your whole family eats. Ours ate a lot and since my daughter went gluten-free, our whole family has been a lot healthier. This is a blessing in disguise as gluten causes problems in non-celiacs too. You just don't know how great it can feel until you eliminate it.
Private message me and we can chat if you'd like help navigating the the gluten free world:)
T.
Contact the nutritionist at Outpost Natural Foods, her name is Judy and her # is ###-###-#### Ext. 118. She's free if you are an Outpost owner (or it's worth the $30 per year to be an owner).
Hi S.
I have a friend, Christy, whose daughter went through this. Call me and I will see if I can connect her to you.
L.
###-###-####
Have you tried the cinamon raison ezekiel bread by Food For Life??? We like it even better toasted with honey. Although my kids eat the plain kind too with either honey or jelly on it.
This will probably have to be a lifestyle change for your whole family. It is too hard to expect a 6 year old to do this alone while watching everyone else eat what she would rather eat.....
Before putting her through any more testing, have you thought about bringing her to a natural doctor??? (I'm not talking homeopath!) I know a really good one who moved to the Dakotas, just can't remember which one. If you want his number just let me know. I can get it for you. Maybe he'll be close to you! He is very knowledgeable and passionate about health so he comes on strong sometimes. The doctors told him to go home and die when he was in his 20's and he went to Mexico and got better instead! He changed his lifestyle, eating habbits, etc. and was cured.
Good luck.
