Living With Celiac Disease
I'm writing this article to draw attention to this disease and perhaps a light bulb will click with someone who didn't realize what their symptoms meant before. I'll not go into all the details of my early symptoms before I discovered what I suffer from. Let's just say, the Doctor decided I had IBS (irritable bowel syndrome) after several tests to rule out colon cancer and other lower GI problems. I was in severe pain, and couldn't get too far from a bathroom. Get the picture?
I like to think I was divinely guided to find the answers for myself. I had been suffering for a couple of years and more or less had been told there was really no answer. One day when I was at Border's Books I noticed a thin paperback on IBS written by a doctor. It was only a couple of bucks so I picked it up and threw it on the "I'll get around to reading it someday" book pile. Months went by and I never even thought again about that book. Then one day I was having a really bad health day and something prompted me to just walk over to that book and start reading. Wow! Inside were things I had not considered before and one of them was Celiac Disease.
I decided to investigate this online and once again was hit over the head with the realization that I may finally have an answer to my problems. I found the web site Celiac.com. It goes into great detail about what is and isn't celiac disease and all the autoimmune diseases related to it. There are many message boards to chat and ask questions. There are lists of food products that don't contain gluten and a list of restaurants that are celiac friendly. It's a very helpful and informative web site.
Let me digress here, Celiac Disease is an autoimmune disease that directly affects the small intestine and a person's ability to absorb nutrients. If one suffers from CD long enough undetected the hairs (villi) in the small intestine will flatten and be unable to gather nutrients from food. The body reacting to a protein called gluten causes this. Gluten is found in barley, wheat and rye. Avoiding ingesting any food or products (stamps have gluten in the glue) can actually reverse the damage and symptoms of celiac disease with gluten. It's the only autoimmune disease that a person can over come.
This next portion came from the NDDIC web page:
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 could go on and on with information but I urge anyone who suffers from IBS or Chrohn's or anything similar to check this out. The U.S. is behind other countries in research on this and detecting it in patients. At least one out of every 133 people has celiac disease. That is a lot of people and it could go higher as more are properly diagnosed. Many people may have it and have latent symptoms – meaning they have no outward symptoms. The prognosis for those who have it untreated for many years can be grim. Cancer, osteoporosis, anemia, and seizures can be the outcome. Also, the longer one goes untreated the more autoimmune diseases one may develop. I have thyroid disease and fibromyalgia also. Some people are more sensitive than others. I have my own toaster to toast my gluten-free bread so I don't contaminate my bread with crumbs containing gluten from my husband's wheat bread.
A diagnosis can be hard to come by. I am self-diagnosed. The blood test my doctor gave me came up negative. I've since done more research and found this isn't unusual. There are very specific tests that are not completely reliable. The gold standard for a diagnosis is a biopsy of the small intestine to check for damage. But even this can be a false negative. The best way to check for CD is to go off all gluten. I've had people say they could never do that and how hard it must be for me. I was elated to find out I may have CD because maybe I could finally feel better – and I do!
I won't say it's easy to not eat ANY gluten. It's in a lot of products one wouldn't think it would be – most mainstream soups, soy sauce, and lots of prepackaged foods. The good news is, a new law was recently passed and if a food product contains wheat – it must state so. Also, many companies will state if their product was made in a facility where wheat was present. I find that my larger supermarkets carry a variety of gluten-free products in the organic food aisle. The internet is a great place to buy these foods, as are health food stores. I don't have any problem finding gluten-free spaghetti, pizza, boxed mac and cheese and pretzels. They may cost a bit more but it's a price I'm willing to pay.
My greatest wish for this article is that someone who reads it will be helped by it or perhaps they can pass it on to someone else that may be helped also. I am ever so grateful I found out what I suffer from and what I can do about it. Isn't the internet wonderful?