10 Things I Have Learned About Celiac Disease
I didn’t know a single thing about Celiac Disease in my youth and I didn’t know that it even existed until after I was married. I didn’t know about Celiac Disease until my Mother in Law was diagnosed after tissue samples were taken from her large intestine. The more I learned about Celiac Disease the more I wanted to learn about food and how it can be destructive as well as nourishing fuel. So here is a definition of Celiac Disease and some of the facts I have learned about it over the past 22 years of feeding a family with the disease. The following compilation of definitions is from sites I found after doing a Google search.
Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins. When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, finger-like protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten. Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.
Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. What are the symptoms of celiac disease?
Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.
Symptoms of celiac disease may include one or more of the following:
- recurring abdominal bloating and pain
- chronic diarrhea
- pale, foul-smelling, or fatty stool
- weight loss/weight gain
- unexplained anemia (a low count of red blood cells causing fatigue)
- bone or joint pain
- osteoporosis, osteopenia
- behavioral changes
- tingling numbness in the legs (from nerve damage)
- muscle cramps
- missed menstrual periods (often because of excessive weight loss)
- infertility, recurrent miscarriage
- delayed growth
- failure to thrive in infants
- pale sores inside the mouth, called aphthous ulcers
- tooth discoloration or loss of enamel
- itchy skin rash called dermatitis herpetiformis
A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly.
I did not have this massive flow of information available to me years ago and I had to read numerous books and frequent health food stores and the Naturopath to begin to understand how to care for my partner and children – help them flourish. Since I spent numerous years of my life doing intake evaluations for the State Department of Social and Health Services also this knowledge about celiac disease and the how to ‘s were added tools to my informational base. I do not have the disease myself but I am not able to eat dairy without experiencing many of the same side effects and symptoms so I have great empathy.
- Wheat Allergies and Gluten Allergies: it is possible that 1 out of every 4 people in the United States have Wheat and Gluten allergies. This is a similar ratio to the number of people in Japan who are intolerant of rice.
- Many people who have been diagnosed with grain allergies may in fact have Celiac Disease.
- Depression and Anxiety problems seem to go hand in hand with Celiac Disease and Gluten Intolerance. If you find yourself getting prescribed anti-depressants and they don’t seem to work at all – get tested for food intolerances and food allergies.
- After testing 24 brands of vitamins, I have still only found 1 brand that is truly 98% useable and is absorbed from the stomach and not the intestines. I have to keep checking in with these vitamins because companies need to watch their profit levels and so keep reformulating their products which can turn a great vitamin into a symptom/irritant product in one capsule’s time.
- In the 1960s, Canadian medical researchers and Psychiatrists discovered that 20% of the patients in Mental Health Institutions diagnosed as Schizophrenic were actually advanced cases of Celiac Disease. Patients made remarkable recoveries when their GI tracts were cleaned out and they were put on a Gluten Free diet and had assistance learning new coping skills for depression and anxiety symptoms. 30 minutes of aerobic exercise is often the greatest cure for folks with CD, depression, and anxiety – helps to digest the food and keep the villa healthy. (I would add a note in here that most alcoholic beverages and beers are made with grain, I think vodka and sulphite free wine are the only exceptions though www.glutenfree.com now advertizes a beer that is GF)
- Now there are numerous websites, stores, and places to order grains and cookbooks and prefab foods for people and especially children who need to eat Gluten Free or have specialized allergy diets and requirements. I personally am very happy about this as after spending 8 hours making a loaf of alternative bread and having it come out like a brick and be inedible is very discouraging. If I had not been cooking for people I loved and wanted to thrive I would not have done it.
- I have observed that in families that have Gluten Intolerance often there is one child with heavy allergies and one with Celiac Symptoms.
- “The Gut is the first set of brains your body relies on,” Dr. Oz on the Oprah Show (Spring 2007). “If everything’s not right your underwear maybe too tight!” Hanes Underwear ad on TV in the 1960s. It is extremely hard to make decisions, be on time, organize yourself, get too far away from a bathroom, or cope if you are suffering from malnutrition. People with Celiac Disease need to be reminded to eat and to know what they are eating. Better to eat by the clock than to try and eat when you are hungry. They can also be hungry all the time because nutrients are not getting to the brain and nourishing the body.
- If you take an antibiotic, swim in a chlorinated pool regularly, or are having regular loose or floating stools, you may not have any good microbes in your GI tract to help you digest your food and absorb the good stuff. Regular taking of GF Fiber and probiotics may really be very helpful to you and assist you in feeling better.
- Absolutely no one wants to have Celiac Disease and they will argue with you that they are eating the correct regime and then tell you in the next breath that there was a pizza eating contest at school that they won! No one wants to have their children have this diagnosis, partially because cooking is a great deal of work, but I will say when your children being to thrive, grow and begin being the best they can be – well the outcome is such a grand reward. Think that this issue might be another celiac symptom first, rather than taking some new medication for some new problem. And remember how good you feel, when you stop “kidding” yourself and eat on program, adequate amounts of food and on time and you will want to feel great and live your life fully to its normal outcome and you will most likely get right back on to a healthier you.