As someone who has lived with the diagnosis of Celiac Disease for nearly three years, and having suffered from it for a decade before finding the root cause of my health problems, there is a great deal of confusion over what this disorder is when first diagnosed or trying to explain it to friends and family members. I am not a doctor, but wanted to share this information in a personal way so that if you are diagnosed, or know someone who is, it will make understanding the issue easier. This and other posts on celiac disease and living gluten free come from my own experience, reading lots of books and web articles, and conversations with my general practitioner (GP), as well as my gastroenterologist.
What is Celiac Disease?
You will find this disorder called be several different, though related, name: Celiac Disease, Celiac Sprue, or Coeliac. All of these are the same issue: a disorder that causes the immune system to attack gluten in the small intestine, leading to intestinal damage, and which results in nutritional absorption problems. Though easily described as an allergy, it is not, it is an autoimmune disorder.
What are the Symptoms of Celiac Disease?
The symptoms of celiac disease can include abdominal pain, gas, bloating, indigestion, diarrhea, nausea, vomiting, and unexplained weight loss. Undiagnosed or untreated celiac disease can lead to nutritional absorption problems which may lead to secondary symptoms such as hair loss, depression, anxiety, fatigue, itchy skin, muscle cramps, joint pain, and even seizures. Because celiac disease can effect the whole body the symptoms may seem unrelated to the immune system or digestion.
My primary symptom was diarrhea, which would happen within an hour or so of eating a gluten heavy meal, like pasta, pizza, sandwiches, or subs. Initially, my diagnosis was Irritable Bowel Syndrome (IBS), which lead to a phenomenon my GP at the time referred to as “bathroom counting” and said that once I knew where every public bathroom was in the area that my problem had probably advanced from mild or moderate to rather severe. Once my youngest daughter was born, and we were trying to do more activities as a family, I realized how bad the symptoms had finally gotten pretty bad and needed to talk to my doctor about what was going on. Before it was easy to stop in some place, visit a bathroom, and then continue on my journey.
What Are the Tests for Celiac Disease?
I underwent 4 different tests to check for celiac disease. One was a simple blood test to look for two specific antibodies: antitissue transglutaminase antibodies (tTGA) and anti-endomysium antibodies (EMA). One came back positive and the other inconclusive. That was enough for my gastroenterologist to schedule me for a colonoscopy and upper endoscopy. Other than the preparation for the procedures, both were simple procedures that went well, and confirmed the initial blood tests and diagnosis: I had celiac disease.
Is there a Cure for Celiac Disease?
At this time there is no cure for Celiac Disease, but it can easily be controlled by going on a gluten free diet. Once my doctor confirmed the diagnosis he ordered a gluten free diet and included some pamphlets on how and what to eat, as well as literature on a local and national support group, the Gluten Intolerance Group.
What is a Gluten Free Diet?
A gluten free diet is one that does not contain any ingredients derived from wheat, barley, rye, or contaminated oats. Finding these on a nutritional label is fairly straight forward. However, it is products derived from wheat, barley, and rye that can get someone with celiac disease in trouble. These following items may include gluten:
Food Starch (unless the starch is declared, such as “Corn Starch”)
Modified Food Starch (unless the starch is declared, such as “Modified Corn Starch” or “Corn Starch, modified”)
Vinegar (unless it says that it is distilled or apple cider)
Yeast, Yeast Extract, Nutritional Yeast, Brewers Yeast (Torula Yeast is OK)
Caramel Color (if made outside the United States. Caramel Color from the U.S. is made from corn)
How Long Before the Healing Begins?
The amount of time it takes to recover from the damage caused by celiac disease will vary by each individual. If someone has gone a long time without a diagnosis it may take longer for their body to heal, but I have not heard of any cases where the body cannot or will not recover. Within 4 days of beginning a strict gluten free diet it my symptoms went away. From conversations with my gastroenterologist he said that it would take 6-8 weeks for my small intestine to recover from the damage and my body would begin absorbing nutrients properly again.
What Happen if I Eat Gluten After Being Diagnosed?
Your symptoms may return. But once you go back on the gluten free diet, they will go away again and your body will heal.
With so many foods to choose from, it is easy to grab something you think is gluten free only to realize it isn’t. Recently I was eating having some potato chips at a friend’s house, chips that I had read the label on before and said were gluten free, when I looked at the label on the current bag and there was the allergen warning: CONTAINS WHEAT. The manufacturer changed the recipe, and I hadn’t thought to check to see if it was safe. Too late. I had eaten gluten. The next morning I had some issues, but they cleared up quickly. Be careful, read labels, and do your best.
How Long Must I Stay Gluten Free with Celiac Disease?
If you are a big fan of breads, cakes, and pastas, it can be disheartening to hear this, but you must remain on a gluten free diet for life. There is no cure and even though the symptoms go away, they will return if you start eating gluten again.
Where Can I Buy Gluten Free Foods?
Many grocery stores now have gluten free foods in their health food section or scattered among the regular items. My local grocery stores, Giant and Weis, do a mix of these methods, with specialty items like gluten free granola and gluten free baked goods in the health food section, and gluten-free versions of regular products, like Bisquick, in the aisle with the normal product and a gluten free tag on the shelf.
I have found, however, that one of the best retailers to buy gluten free foods from is Amazon.com. They have one of the largest selections, often with bulk offerings, and with the subscribe and save option on many items, you can set up regular deliveries of your gluten free staples and save an extra 15%. Follow any of the links below to look through the gluten free options on some staple products.
Gluten Free Bread
Gluten Free Cereal
Gluten Free Cookies
Gluten Free Pasta
Gluten Free Snacks
Gluten Free Soup
My Favorite Book on Celiace Disease:
Celiac Disease: A Hidden Epidemic
The cover on this book is unfortunate because it looks like an unreadable text book or medical reference, however, it is one of the most easy to read, straightforward books on celiac disease that I have encountered to date. Tons and tons of useful information rest withing the covers especially on what foods and food additives are safe and which to avoid.
References and Additional Reading:
PubMed Health: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/
Mayo Clinic: http://www.mayoclinic.com/health/celiac-disease/DS00319