Celiac Disease

Hi All,

This past Wednesday I learned, after many tests and over a year of feeling almost constantly ill in one way or another, that I have celiac disease.  It's a godsend to have an answer, although my doctors and I all suspected that this was the case.  Now, I have a definitive diagnosis and can start moving forward.

Since there seems to be some confusion or lack of information available to some of the people I care about in regards to this disease and what it means for me, them, and my potential future children, I wanted to write a brief synopsis.  I will keep it as simple as possible.  If you have any questions, you can ask me, your doctor, or refer to the websites I will post below.

CELIAC DISEASE

Celiac Disease (also known as coeliac or sprue) is a genetic autoimmune disorder of the small intestine that presents from infancy onward and is thought to be present in approximately 1 out of every 100 people.  With this disorder the body is unable to digest gliadin, a type of gluten protein found in wheat, barley, and rye (and possibly oats).  When someone with this disease consumes gluten, an inflammatory response occurs in the small intestine that, over time, results in stunted villi.  These villi are like tiny fingers of the intestines that allow for absorption of nutrients, and when stunted, do not allow the body to digest food properly.  People who have this disease may become malnourished and/or stunted in growth, and due to lack of nutrients may develop many related problems.

Symptoms of celiac disease vary widely from person to person, as this disease can affect almost any part of the body.

• Abdominal pain
• Mouth ulcers
• Depression
• Anemia
• Pale, loose, greasy stool
• Diarrhea
• Vitamin A and vitamin D deficiency
• Constipation
• Bloating
• Distension of the abdomen
• Lactose intolerance 
• Lack of mental clarity ("foggy brain")
• Skin rashes (dermatitis herpetiformis)
• Tingling in the hands and feet
• Lethargy/exhaustion
• Flatulence
• Osteopenia/osteoporosis
• Recurrent miscarriage and/or infertility
• "Leaky gut syndrome"
• etc.

There is no cure, and only one treatment for this disease:  Stop eating gluten for the rest of your life.

Any gluten consumed does damage to the body and this is compounded as the villi stunt and the intestines smooth out, increasing risk of vitamin deficiency, osteoporosis, some cancers, "leaky gut syndrome", etc. 

Fortunately nowadays there are about a million good alternatives to gluten.  Anything from gluten free breads and crackers to alternative bakeries, pizzerias, and restaurants.  I do not feel deprived.  It takes an adult anywhere from several months to several years to heal their intestinal villi after initial diagnosis and during this time the gut can be very sensitive.  For that reason it is important that a person with celiac disease not stray from their gluten free diet, ever.

Celiac disease is genetic, and is more common in women than in men.  It is also found more commonly in people of Eastern European descent (including Ashkenazi Jews).  There are several ways to test for this disease.  Tests include IgA antibody testing, endoscopy/biopsy of the intestines, and genetic tests.  Genetic testing (or HLA-DQ testing) is the gold-standard as it identifies genes responsible for gluten sensitivity with an accuracy rate of approximately 99.9%.  These tests help identify those who have celiac, who may develop it, the potential severity of the disease, and the risk of passing it along to your children.  If you are feeling these symptoms it is important to discuss this with your health care team and consider your testing options.  It is important that you NOT adopt a gluten free diet before testing, as it may affect your results.  If you are in my family, I would readily encourage you to get tested.


Here are some good websites to get you started, if you'd like to know more:

• http://www.celiac.org/index.php
• http://www.celiaccentral.org/Celiac-Disease/21/
• http://en.wikipedia.org/wiki/Coeliac_disease
• http://www.mayoclinic.com/health/celiac-disease/DS00319
• http://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html