Celiac Disease Forum - What Is Celiac Disease?

What the heck is celiac disease?

Celiac Disease, Celiac Sprue, Non Tropical Sprue, Gluten Sensitive Enteropathy, or Coeliac condition….No matter what name you use, chances are you are wondering what it all means. If you have received this diagnosis from your physician, you are probably feeling surprised, confused, frightened, and angry. It is important to note, however, that you are very lucky to have received a diagnosis for why you have been feeling so rotten. The good news is you will soon be feeling better than you have in a long time. The better news is YOU DON’T HAVE TO TAKE ANY MEDICATIOIN OR HAVE ANY SURGERY TO GET BETTER! What you do have to do is eliminate all forms and traces of gluten from your diet for the rest of your life.

OK, WHAT IS GLUTEN?
Wheat proteins are collectively called "Gluten". Wheat is closely related to other grains, such as rye, barley, and oats. Gluten is a mixture of individual proteins classified in two groups, the Prolamines and the Glutelins. The prolamine gliadin seems to be a major problem in celiac disease; gliadin antibodies are commonly found in the immune complexes associated with this disease.

The elimination of gluten containing foods is a very complicated thing, as western diets are based primarily of wheat. Simply saying, “OK, I will just eat white bread” is not going to do it. There are many forms of hidden gluten in the most innocent-seeming foods, such as Soy Sauce, Ketchup, Malt Vinegar, Beer (yes, Beer!) Pasta, Seasoned Instant Foods, Tortillas, Ice Cream, and obviously, most types of baked goods. This site has been set up to serve as a resource for Celiacs to keep them safe from Gluten Poisoning (sometimes called gluten accidents), and to connect them to resources that will assist them in being able to make choices that will make living on the Gluten-Free diet a healthy and rewarding experience, rather than a life sentence.

DIAGNOSIS

Many Celiacs have fought a long and arduous battle to reach “The Big D” (diagnosis). Chances are, they have been told they had Irritable Bowel Syndrome, Acid Reflux, or some other vague syndrome. By the time most Celiacs finally obtain a referral to a Gastroenterologist they are malnourished, anemic, osteoporitic, weak, and tired of eating, knowing they will just get sick within a couple of hours.

Celiac disease was long thought to be a rare condition, only affecting 1 in 100,000 people. New research has been done that indicates prevalence is probably 1 in 133 people in the United States. For a helpful educational guide regarding diagnosis, please refer to the following link: http://www.aafp.or g/afp/980301ap/pruessn.html

Definitive diagnosis of Celiac Disease is done using a number of diagnostic tests, including blood tests, stool samples, and a colonoscopy/endoscopy procedure. Blood tests are done to check on levels of IgA-Antigliadin Antibody, EMA-Anti-Endomysial Antibody, and tTg-Tissue transglutaminase. These tests indicate that your body is producing antibodies to fight ingested gluten and treat it as an invading organism, like a virus. Blood is also tested for levels of Iron and protein, and inflammatory markers such as C-reactive protein and Sedimantation rate. Stool samples are collected to determine the amount of fat being eliminated. Persons with Celiac Disease do not absorb much of the fat in their diet, thus it is eliminated from the body without being absorbed. If these tests come back with results suspicious for celiac disease, your doctor will probably order a colonoscopy/endoscopy procedure. A positive biopsy will show the flattened villi which is most characteristic of Celiac disease, and is consequently the cause for feelings of tiredness, nausea, gas, bloating, and diarrhea.

Newly diagnosed celiacs

It is essential that anyone newly diagnosed with Celiac Disease should consult with a registered dietician with expertise in this condition as soon as possible. Also, connecting with a local support group is also quite helpful in obtaining information and resources on gluten free products. Click on the following link for a listing of support groups in the United States: http://www.celiac.com/cgi-bin /webc.cgi/st_prod.html?p_prodid=310&p_ catid=35&sid=84X6ej0-KA3@A66-181040939 29.99 . Another important step is to familiarize oneself with gluten free products, vendors, and cooking. A complete list of acceptable and unacceptable foods is available at: http://www.celiac.com /st_main.html?p_catid=12&sid=84X6ej0-K A3@A66-42104177129.91 . And many regions have their own list of gluten free products and vendors through their local support group.

celiac disease and children

It was once thought that Celiac disease was a childhood illness that came on with the ingestion of solid foods containing gluten, and that children would eventually outgrow the disease once they reached adulthood. Unfortunately, Celiac disease, as it is known now, is not a condition that will go away or lessen. A strict gluten free diet must be followed for a lifetime. Even if ingesting gluten containing foods does not cause immediate side effects, damage to the small intestine is still occurring, increasing the odds that one may eventually develop other complications of Celiac disease. A very helpful resource for additional information on dealing with the challenges of raising children with Celiac Disease can be found through your local ROCK (Raising Our Celiac Kids) chapter.

Complications with celiac disease

Damage to the small intestine and the resulting problems with nutrient absorption put a person with celiac disease at risk for several diseases and health problems. Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine. Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption is a contributing factor to osteoporosis. Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients. In addition, some women with untreated celiac have difficulty with problems associated with infertility. Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period. Seizures, or convulsions, result from inadequate absorption of folic acid. Lack of folic acid causes calcium deposits, called calcifications, to form in the brain, which in turn cause seizures.

Dermatitis herpetiformis

A condition which is closely related to Celiac Disease, but in addition to intestinal damage, skin lesions consisting of small watery blisters erupt (usually bilaterally) on the body, in areas where pressure points are located. These individuals must also eliminate any gluten containing skin care and beauty care products from their usage. This includes botanical shampoos using wheat germ oil, and lotions using oatmeal. The person with DH may not realize that they have major disturbance in their digestive tract but studies have shown similar if not identical disease processes. The small intestine is a site of vigorous T-cell activity in gluten-sensitive individuals and is consistent with the view that the enteropathy of dermatitis herpetiformis and celiac disease is the result of a delayed-type hypersensitivity against gliadin.

Gluten free flours

Any type of grain can be ground into a flour. Commonly used gluten free flours include rice, tapioca (cassava), potato, garbanzo bean, fava bean, quinoa, buckwheat, amaranth, corn, and soy bean. Each flour has different properties, but none by itself has the same elasticity and lightness as wheat flour. (Bear in mind that white flour is made out of wheat!) However, when these flours are combined in various ways, desirable effects can be obtained in baking and cooking. Often additional leavening ingredients such as yeast and baking soda, as well as additional protein, such as milk and eggs are required to achieve an elasticity which holds baked items together appropriately. In addition, Xanthan Gum or Guar Gum is also added to help baked goods hold together. (A word of caution-Guar Gum can often have a laxative effect on individuals who are not used to including it in their diet regularly.)

Celiac vendors

It is possible to create fluffy breads, tasty brownies, cakes and cookies without using traditional wheat flour. Once armed with several good gluten free cook books and a few months to practice, you should be able to turn out some amazing foods. In the mean time, there are many vendors who have put together brownie mixes, bread mixes, and pancake mixes that rival traditional mixtures and are sometimes even tastier than the “real thing”. Bear in mind that these mixes are usually much more expensive than their Betty Crocker counterparts. The following are several product lines that can be obtained at local health food stores, and also online. Some vendors offer discounts for buying in bulk, which is another benefit that can be utilized within your local celiac society or support group.

Gluten Free Pantry at http://www.glutenfree.com/
Gluten Free Mall at http://www.glutenfreemall.com/
Bob’s Red Mill at http://www.bobsredmill.com/ (not all products are gluten free)
‘Cause You’re Special at http://www.causeyourespecial.c om/
Ener-G Foods at http://www.ener-g.com/
Arrowhead Mills at http://www.arrowheadmills.com/
DeBoles at http://www.hain-celestia l.com/index.php
Tinkyada at http://www.tinkyada.com/
Lundberg Farms at http://www.lundberg.com/
http ://www.bakeryonline.com/storefronts/authen ticfoods.html
Dietary Specialties at http://www.dietspec.com/
Enjoy life Foods at http://www.enjoylifefoods.com/
Glutano at http://www.gardenspotd ist.com/glutano.htm
Nu-World Foods at http://www.nuworldamar anth.com/retailers/
Shiloh Farms at http://www.shilohfarms.com/
Chebe Bread at http://www.chebe.com/
Notta Pasta at http://www.nottapasta.com/in dex.cfm
EnviroKids (not all products are gluten free) at http://www.envirokidz.com/
Miss Roben’s at http://www.missroben.com/
For a comprehensive list of Gluten free vendors and how to contact them, also see http://www.enabli ng.org/ia/celiac/vendors.html

About dairy products

Many Celiacs have difficulty handling milk and other dairy products. This is because the Villi in the small intestine which have suffered damage are also in the same area in which Lactase is produced. Lactase is an enzyme that breaks down Lactose in milk and dairy products. The damage caused by gluten consumption hinders the body’s ability to break down Lactose, thus creating gas, bloating and diarrhea. It is often necessary for celiacs to steer clear from milk, and even cheese and yogurt.

A note on vegetarianism

Many professionals and lay persons assume that a Celiac diet is incompatible with vegetarianism. Although there are additional challenges to maintaining a healthy diet which adheres to both, it is not impossible. Vegetarian Celiacs do need to cut out many vegetarian substitutions from their diet, such as commercial vegetarian burgers, most hot dogs, “chicken” nuggets and patties, vegetarian “bratwurst”, and any other meat substitutes containing gluten. For some vegetarians, this is a very daunting task. However, through careful research and planning, one can certainly live a life which is filled with exciting and flavorful food choices.

Protein is certainly an issue for Celiac vegetarians Tofu and most tempeh varieties are gluten free. Peanuts, Cashews, Walnuts, Pumpkin seeds, and legumes are all good sources of protein. Eggs are also high in protein (if not a vegan), but are high in cholesterol.