Celiac Disease Sites
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Posted by TK Kenyon Feb 14, 2007 |
Nothing can replace a good dietician and, thanks to HMOs and other insurance restrictions, it practically has. It’s often up to you to learn more about your diagnosis, whether it’s cancer or, in this case, wheat gluten-related diseases.
An autoimmunological reaction to wheat gluten can take one of three major forms or a host of minor ones. If you have the traditional gastrointestinal symptoms, then you have classical celiac disease or “sprue,” which to me sounds like shrubbery, especially since there is an alternate diagnosis of “tropical sprue.” (“Oh! That’s a lovely sprue, madam! Is that a tropical sprue or a blue sprue?” “Why no! It’s a celiac sprue. Very rare, you know.”) Gluten-related ataxia is a neurological form of the disease, where symptoms such as gait disturbances or impaired memory are often present. Dermatitis herpetiformis is a skin condition that looks like a disseminated herpes infection (thus the name,) but is autoimmune in origin and again caused by gluten intolerance. Elimination of gluten (all wheat, rye, barley, and related products) from the diet often improves or eliminates symptoms, sometimes within a week or two.
This article about Gluten-Free Cookbooks can help you decide which one(s) to buy.
Celiac.com
If you’ve been newly diagnosed with celiac disease, gluten ataxia, or dermatitis herpetiformis, your first stop should be Celiac.com. This clearinghouse of all things celiac includes basic information on the major conditions and lots of minor ones, causes and risk factors, screening tests, a FAQ list, lists of related diseases, lists of diseases that celiac can masquerade as, lists of gluten-free (GF) foods that are commercially available, GF specialty food companies that you can order from over the web, lists of forbidden foods, a very large recipe database, the latest research, and forums for emotional support and help. You can even set up one “Gluten-Free Mall” account and order GF products and food from a lot of different internet specialty retailers. This site alone will help you a great deal, and you can spend hours just on the information here. If you read only one website, make it this one.
Government Information Websites
(1) The US government has produced a rudimentary website that simply explains what celiac disease is and some of the major facts about it. If the Celiac.com website seems overwhelming, start with this site and work your way up.
(2) The US government also has a website associated with MedLine that is geared more toward the clinical and research-related aspects of celiac disease. A link on the left side steers you to clinical trials.
The Gluten Intolerance Group
The Gluten Intolerance Group (GIG) is one of the oldest associations dedicated to helping those with celiac or other forms of gluten intolerance. Some of their main functions are to lobby the government to label food as GF or containing gluten and to help restaurants provide GF selections. They also sponsor events such as the upcoming Seattle’s Gluten-Free Food Festival, which will feature some of the elusive GF beers. They also have basic information such as advice on dining in restaurants.