J.L. asks from Camp Verde, AZ on January 10, 2009
Celiac Disease - Camp Verde,AZ
Does any one on here have any experiance with a child with celiac disease? What all do the doctors test? please help. my youngest daughter has had problems gaining weight. her doctor ran some blood test and they came back abnormal. we have an appointment with a specialist but that is not until febuary in the mean time i am not sure what i am supposed to be doing. any thing will help.
K.P. answers from Phoenix on January 11, 2009
I am not going to tell you anything different. But I do want to re-enforce that if this is Celiac disease, do not put her on a Gluten Free diet until after you have confirmation. It will mess up the testing and you don't want to be running circles doing different test when the first one came back wrong. I have a lot of friends who are Gluten Free and it is do able. There are a lot of option out there, but you need to educate yourself.
Have you thought about calling and seeing if you can get on a cancelation list for the doctor? I have gotten my kids in early by checking with specialists this way. Call up and ask the receptionist if that is possible. One doctor's office refilled their cancellations on Friday morning for the following week. I called every Friday morning. After 4-5 times I was able to get my kids in earlier on a cancellation.
S.S. answers from Phoenix on January 11, 2009
I'm not sure if you've heard of this book, but it was a real life changer for me. It is called Breaking the Vicious Cycle, Intestinal Health Through Diet. It's by Elaine Gottschall and she founded a diet known as the SCD (Specific Carbohydrate Diet). This diet has helped thousands of people, including myself, as I have ulcerative colitis. It is for those with Crohn's, Colitis, Celiac, Diverticulitis, etc. You can google it and learn quite a bit on the web. It is also available at the library if you want to check it out. I also recommend the website pecanbread.com which is geared toward children with gastro intestinal issues.
J.R. answers from Tucson on January 11, 2009
There are lots of different absorption and allergy disorders that can cause labs to be out of wack and for weight gain to stop.. we went through the gamment of tests before we got a diagnosis.. there is a great web site- kidswithfoodallergies.com
There is tons of information of different disorders and there are also recipes for when you figure that part out.
Good luck.. I know that the waiting can be the hardest part.
D.K. answers from Tucson on January 11, 2009
Please email me. I am the head of Cel-Kids Tucson (formerly the Tucson chapter of Raising Our Celiac Kids). I am also the co founder of a children's special diet needs support group, and I am on the Executive Board of Southern Arizona Celiac Support. My daughter was diagnosed at age 19 months, and I am gluten free too; I know I recently spoke with somebody who called me from the Phoenix area; was that you?
J.L. answers from Tucson on January 11, 2009
Hi J.. My daughter went through the gammet of testing for everything including celiac disease. Celiac needs to be tested two different ways to be a real diagnosis. The blood test and endoscopy. The endoscopy is where they have to go through her mouth with a tiny microscope. They check the esophagus, the inner lining of the stomach and the duodenum which is the first small part of the bowel/intestine. What they are looking for are damaged celia. If they are damaged, or not there, or abnormal, they will determine if it is celiac with a biopsy that they can do at the same time as the endoscopy. My daughter was 10 when they did it to her, and she was a real trooper. She was asleep via anesthesia, so she did not feel anything. She did have a mild sore throat and her tummy was bloated a bit, but they both went away rather quickly. We were lucky in the fact that she did not have celiac. Celiac is a very difficult disease to live with. EVERYTHING that you eat whether it is packaged or not has to be questioned as to what is in it...oats, gluten, etc. There are some new wonderful products on the market now, which when she was tested, there were few and far between items that could be purchased. Celiac is kinda like diabetes in the way that it becomes a "Family" disease. Everyone is effected by it, and may have to change your diets a bit to accomidate the person who has it, cuz it's pretty darn hard to be a short order cook for all the different diets. Everyone gets into label reading, and Birthday cake is a no no, and and you are always making special treats for when she does go to someones house etc etc. As is turned out for my daughter, she was suffering from chronic appendicitis, and the one thing that our insurance would not test for...food allergies!! It turned out that some of the things that we ate a lot of...potatoes, chicken, turkey, peas, etc where the culprits!!! So, don't give up! I feel your worry, and have shared in it. If they keep testing, and find nothing, get her tested for food allergies. In the mean time, go to the grocery store and look for shelf tags that say gluten free. Start her on that diet and see if it makes a difference. February is a long time to wait, and that doesnt count the time you have to wait for the testing. Start reading labels, and put her on a gluten free diet and see what happens. Good luck and God bless.
E.M. answers from Albuquerque on January 11, 2009
My husband and 3 girls (8, 6, and 3) ALL have Celiac Disease. If you've been referred to a pediatric gastroenterologist, don't do anything until you see him/her. The only treatment for Celiac Disease is going on a Gluten-Free diet for life (yes, no wheat, oats, barley, rye for life), and if you start that before the rest of the testing is done, you will mess up the blood/endoscopy tests.
Do you know what the blood test was that your doctor ran? I'm NOT a doctor, but my family went through this almost 5 years ago, so I am pretty familiar with the testing/what to do.
Symptoms can include: distended belly, failure to thrive (starting around the time solid foods were introduced), extreme diarrhea (no formed stools), extreme constipation with panful gas, tooth enamel problems, developmental delays, joint pain, migraines, brain fog, seizures....
Hope this helps, let us all know how it turns out!
J. answers from Phoenix on January 11, 2009
We have a friend whose child has Celiac and our friend does, too. I know that the issue is gluten and having a gluten-free diet. Our friend's son used to eat "special donuts" that he loved -- maybe you'll be able to get them at Whole Foods. My friend who has Celiac goes there to get a lot of her food. You may also want to ask this question on this site: www.empowher.com/ask -- they allow you to ask any health question for free & you'll get an answer. Hope this helps!
S.P. answers from Albuquerque on January 11, 2009
There is a good website here in Albuquerque: ROCK: Raising our Kids Celiac. Lots of good info. Google it or: