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My 16 yr old daughter was recently diagnosed with gluten intolerance, celiac's disease. Anyone have any good websites that she would relate to (oriented toward teen diets, food preferences) and any that as a parent I would find helpful? Currently I am seeking a site where I can type in a food and find out if it's safe or not. Does that site exist? mom in Oakland
http://health.groups.yahoo.com/group/SillyYaks/ www.celiac.com www.celiackids.comYou should be able to get a general list of ''safe/unsafe'' foods as a start. With specific packaged foods, ingredients may change periodically, so it's important to check. A new labelling law is about to go into effect, which will make things easier. There are also lots of helpful books, including one in the ''Idiots Guide'' series. (Type ''celiac disease'' into a search at amazon.com and you'll find it.) Several mail-order companies specialize in gluten-free food (see www.glutenfree.com). Whole Foods has a pretty good selection, including one freezer (at the Ashby/Telegraph store) that contains only gluten-free baked goods (bread, pizza crust, etc.) Feel free to email me with specific questions. LR
Hello, I am growing increasingly concerned that my 11th month old son may have a gluten allergy or celiac disease. Are there any parents out there that have been through the discovery and diagnosis process with young children? My son has had an alarmingly large appetite since he began eating solids and quickly becomes panicky if food is not served as soon as hunger hits. He has had many eczema outbreaks and rashes since beginning solids. I tried rice cereal several times and he broke out in red rashes all over his body. After eating his stomach becomes quite distended and seems to surpass the normal ''toddler tummy''. He still wakes twice to nurse in the night and really seems to need the milk. He often goes right back to sleep after nursing. Despite this large consumption of food and breast milk his growth has slowed dramtically. He weighs about 5 pounds less than his friends of the same age. Lastly it often seems that his tummy is bothering him and he wakes crying and wanting to be held or nursed. He is often gassy and constipated. Does this sound familiar to anyone? I would love to hear about your experiences both with traditional and alternative therapies. Thank you! Distressed Mom
Celiac Bay Area http://health.groups.yahoo.com/group/celiacbayarea/
Bay Area Celiac Support Groups http://www.bayareaceliacs.org/support_groups.htm
National Digestive Diseases Clearinghouse http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
If you have suspicion of Celiac Disease, please take your kid to a gastroenterologist PRONTO - This is a disease that is easily controlled with a gluten-free diet, but can cause all kinds of health problems if not properly diagnosed. Good luck! Anon
www.celiac.com is a wonderful website with a ton of information and links to other resources. Go to the message board section - they have one or more forums that will apply to your situation.
There is a support group organization called ''Raising our Celiac Kids'' a.k.a. R.O.C.K. with groups in the bay area. Use google, or go to www.celiac.org (click on kids corner) or www.celiac.com to find listings for the local groups.
Also see www.bayareaceliacs.org and click on support groups for more local groups and yahoo mailing lists.
If your child does have Celiac Disease, There's a wonderful 1-day conference at Stanford every September or October that you will want to attend. It is intended for celiac patients, caregivers and health professionals, and is organized by enthusiastic volunteers. Information, when it becomes available in mid-summer is usually found at http://www.celiacsprue.org or google ''stanford celiac conference'' to get a picture of past years programs. A gluten-free friend
You received some helpful information for celiac websites. However, I wouldn't jump to the conclusion that your son might have celiac disease just yet. The symptoms you are describing sound like major digestive troubles that can occur in some babies. Babies have very sensitive digestive systems. Any new food introduced for the first time can upset a baby's digestive track which can result in gas, constipation and eczema. Rice, apples, bananas and milk can all cause constipation. Plus cows milk and wheat are extremely difficult to digest for anyone at any age. The only thing you mentioned feeding your baby is rice cereal. You did not mention feeding your son gluten containing grains like wheat, barley, rye, and possibly oats.
(Rice does NOT contain gluten. Some people think it does because they've heard the words ''glutinous rice'' which is not a true term, it's only a despription of the texture of a type of rice know as ''sticky rice''). Are you feeding your baby other foods, like wheat (contains gluten), cows milk, cheese, fruit, etc? If so, don't try to introduce too many different kinds of foods all at once, as this may confuse you as to which food is causing the problem. Introduce them one at a time. Keep a food diary. Talk to your pediatrician about it. It makes sense that pediatricians are always telling parents not to feed their babies wheat, eggs or dairy until they're at least 1 years of age. These are common food allergens, and a child can develop an allergy to one or all of those foods if he/she is given them at too early of an age. Before you jump to the conclusions about celiac disease, I would first keep a careful watch on what kinds of solids you feed your son. The problems may eventually clear up. If however your child gets worse, especially after they are eating a regular diet of solid foods, then I would look into food allergies, intolerance and even celiac disease. The celiac disease websites can help you with what to look for in children. The problem with the disease is not the disease itself, it is easily cured with a strict gluten-free diet. The problem is our medical system. In Italy all children are routinely screened for celiac disease by the time they reach 6 years of age. In Europe the average amount of time it takes a doctor to diagnose a patient with celiac disease, from the time their symptoms first appear is 6 months. Here in the United States it takes on average 10 YEARS! By the way, I've read that the simple blood test most doctors start with is not always reliable. I don't know what they use in Europe. Good luck Laurey
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