What is Celiac Disease?

Celiac disease, is a genetic autoimmune disease that affects 1 in 133 (approx.) Americans; though roughly 1 percent know they have it.  Due to the stereotype behind the disease and its vast symptoms, many doctors treat the symptoms of Celiac, versus diagnosing and treating the actual disease.  Though I should add, in recent years many doctors have been more openminded when testing for Celiac (kudos to those doctors!!).  When a person with CD eats something containing gluten (a protein found in wheat, barley, rye and most oats that have been contaminated), their bodies react to the gluten as an invader.  As a result of these “invaders”, villous atrophy occurs.  

Villi are small finger-like hairs that line your small intestine.  Through the villi, your body absorbs nutrients from your food.  Villous atrophy, is when the villi have basically been rubbed down, or flattened, leaving you with poor absorption of nutrients.  Obviously, the longer you have CD (undiagnosed or untreated) the more damage will be done to your intestine.  For this reason, people with Celiac are malnourished - some more severe than others.  

Symptoms of Celiac are wide-ranged, but can include:

Chronic constipation/diarrhea

Extreme abdominal cramps

Bloating

Fatigue or general weakness

Infertility/Miscarriages/Irregular menstrual cycles

Failure to thrive (especially in kids)

Panic attacks

Peripheral Neuropathy (nerve damage)

Stunted growth in children

Vertigo

Weight loss

Obesity

Anemia

Pain in joints

Pale sores inside the mouth

Osteopenia or Osteoporosis

Tingling/Numbness in the legs

Psychiatric disorders (i.e. Depression, anxiety)

A specific rash called Dermatitis Herpetiformis 

These are just to name a few.  Some people are asymptomatic - meaning they don't have any symptoms but they're diagnosed because a family member had celiac and encouraged other family members to get tested.

Undiagnosed, untreated, or refractory Celiac disease can increase your odds at many severe diseases.

15% more like to get Lymphoma and Leukemia 

15% more like to get gastrointestinal carcinoma

Your chances of developing gastrointestinal cancer (i.e. colon cancer) are increased by 40 to 100 times .

Once you have one autoimmune disease, you are more susceptible to others (i.e. type 1 diabetes, rheumatoid arthritis, hyper/hypo-thyroidism)

For these reasons, it is very important that Celiac is treated responsibly by the patient and also by those in close proximity to the patient.  

Speaking personally, this is not something that I treat lightly.  I have been asked why I don’t continue to eat gluten “in moderation”, surely it can’t be that dangerous to your health, right?  Wrong.  Accidentally eating gluten results (for me) first, in a horrible migraine, swiftly followed by stomach pains that last for hours, with lingering issues lasting for days.  Therefore, when people ask why I won’t “cheat a little”, that is my answer.  The horrendous pain inflicted after the smallest crumb of gluten is simply not worth it.  A person with Celiac can react to 1/8^th teaspoon of gluten, as small as a cracker crumb.  I find it particularly rude and insensitive when people treat CD like it is nothing, and flippantly tell you you are "overreacting".  Spend the day with me in the bathroom after I've been gluten'd... you might just change your opinion of CD... just sayin'.

Determining if a food contains gluten is the easy part, it is the minuscule traces of gluten that happen from cross-contamination in cooking preparation (for instance) that is the hardest to deal with - but, I will save that topic for a different blog.

If you are concerned that you may have Celiac disease I urge you to see your doctor.  There are a few ways to determine if you have CD.
1. Blood panel - This is how CD was confirmed in my case.  Through a special test, it is determined if you have   raised antibody levels in your blood.  Simplistically speaking, if your level is raised - you have Celiac.  To take this test you must be eating gluten at the time of the test.  Don't stop eating gluten before you take this test.  Your body will begin to heal, and the antibodies will not show in your blood.
2.  Endoscopy of the small intestine - this method is a bit more unreliable than the blood test.  Your doctor will take 3-5 samples of your small intestine through a tube that is sent down your throat.  Once they have the samples they will examine to see if villous atrophy has occurred.  It is easier to get a false negative with the endoscopy vs. the blood panel - as the doctor may inadvertently biopsy healthy tissue, missing the damaged villi and giving you a healthy diagnosis.
3.  Genetic testing - this test will tell you if you have the gene leaving you susceptible to developing CD.

Be prepared when meeting with your doctor.  If you are like me, as soon as I'm in the Dr.'s office, I forget everything I wanted to talk about.  I made up notecards with all of my symptoms, in detailed order, so I could easily communicate with my doctor.  I also wrote down any questions or concerns I had.  You only have a small amount of time with your Dr., so make the most of the opportunity by being prepared.  If you are taking any medications, bring them with you.  Taking the time to organize everything you want to discuss will be very valuable to you in the Dr.'s office. 

I hope this clears up some of your basic questions regarding the medical side of Celiac Disease.  For more information, please use the following links.

http://www.celiac.com - this one has a great forum to get information from others.

http://www.celiacdisease.net - this is from the University of Chicago Center for Celiac Disease.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ - this one has very easy to understand information - it is laid out very conveniently.

Rachel