When Celiacs eat foods or use products containing gluten, sometimes even the most minute amount, the villi which are the the tiny, finger-like protrusions lining the small intestine can be destroyed. The villi allow the nutrients of the food we eat to be absorbed into our bloodstream. As a result of this, no matter how much nutritious food we eat, without healthy villi we become malnourished almost as if we are slowly starving to death.
Celiac disease is genetic and when one person in the family is diagnosed, chances are, there are others. In my family, for instance–I believe my Dad had it, and I have two children diagnosed with the disease in addition to me. When I look back at the family history, I see many health related issues that make me suspect they suffered with undiagnosed Celiac Disease.
In some people, the disease never becomes active, despite blood tests that have the genetic marker. In others it is triggered by stressful things that happen to our bodies like surgery, pregnancy, a nasty infection, or severe stress. For many of us, the disease is showing its symptoms to one degree or another but we do not know it because it is being mis-diagnosed as Irritable Bowel Syndrome, Crohns Disease, mental illness, or growing pains. Unfortunately most Celiacs don’t know they have it for at least 6-11 years after their symptoms are actively showing up. I was diagnosed in my mid 40s after suffering my entire life with unexplained symptoms.
While Celiac is primarily a digestive system disorder, symptoms can show up in many other systems and organs as well. The most common early symptoms are:
- abdominal bloating and pain along with diarrhea (sometimes chronic)
- unexplained weight loss (in some cases, such as with me, weight gain)
- hypoglycemia symptoms
- lack of concentration and focus
- irregular and/or constipation and other issues with stool
In children, especially during the years when nutrition is critical to a normal development, celiac can cause delayed growth and short stature, late onset of puberty, and problems with their permanent teeth. (For example, my youngest son, age 19, who also has celiac disease had no enamel on his teeth)
When celiac symptoms show up in adults (either after not recognizing, or not having symptoms as a child) the entire body, mind, and soul can suffer from years of not getting the proper nutrients from our foods. Years of celiac disease going undiagnosed can result in one or more of the following:
- Anemia or iron deficiencies and chronic fatigue
- Unexplained joint pain or arthritis
- Bone loss or osteoporosis
- Anxiety, depression or other mood challenges
- Unexplained seizures
- Issues like missed periods, infertility or miscarriage (often multiple)
- Canker sores inside the mouth, rashes, hair loss, brittle nails
…and in severe cases as a result of long-term lack of nutrients, whether symptoms ever show up, it is now understood that Celiacs may have:
- Cancer, especially of the intestine
- Autism & Asperger’s Syndrome
- Thyroid Disease, particularly Hashimotos Disease (which I have)
The symptoms and effects of Celiac Disease are extremely diverse in direct relationship to the amount of damage done to the small intestines. The longer you go before a diagnosis, the more gluten has caused irreparable intestinal damage. I wish I had known that I had this disease, which manifested itself in childhood, for if I did, I probably would not have suffered nearly every single symptom above.
Diagnosing Celiac Disease
Recognizing that you have this disease is often difficult since the symptoms are often similar to other diseases and illnesses. It is often confused with anemia, diverticulitis, infections of the upper and lower GI, chronic fatigue syndrome along with the chronic conditions mentioned above (IBS and Crohns).
Studies show that over 2 million Americans have celiac and among those who have a family member with the disease the odds are much higher for developing this disease.
If you suspect celiac disease and wish to get diagnosed it is crucial that your eating habits remain the same. It is important because eliminating foods with gluten can produce negative test results even if you actually have celiac disease. Without changing your diet, ask your doctor to have your blood tested for celiac. Often the blood tests produce false negative results despite keeping gluten in your diet. The gold standard for diagnosing celiac disease is symptoms of the disease plus an upper endoscopy and/or DNA testing.
Some with Celiac disease also have a symptom called DH (Dermatitis Herpetiformis), which is itchy skin rash with tiny blisters, usually found on the knees, elbows, scalp, back and the buttocks. Many with DH show few or no digestive related symptoms of celiac. In those cases a skin biopsy is generally performed first.
Treatment for Celiac disease consists of a strict gluten free diet. Improvement can be within weeks, or months depending on the severity of the disease when diagnosed. Prepare to spend a copious amount of time reading food labels to ensure there is no gluten in your food. Also, avoid products that may be cross contaminated, such as prepared in a facility that also processes food with wheat.
There are some individuals who see only a little or zero improvement following the elimination of gluten from their diet because the intestinal damage is too severe. This is more common in older people who have gone undiagnosed for several years or decades. (This is a problem for me)
Gluten is everywhere and included in a vast amount of foods products, as well as vitamins, drugs, cosmetics and other items in which we come into contact. It’s also important to be aware that even products that claim to be “gluten-free” can be contaminated with microscopic amounts of gluten from another part of the factory or kitchen.
Cross contamination can happen very quickly and easily in restaurants or grocery stores. Just a tiny bit of gluten on a cutting board, or a knife can wreak havoc on the person with Celiac disease.
Often, just eliminating gluten is not enough. Our bodies are conditioned to processing gluten and withdrawing from gluten can create mental, body and emotional problems that can be as debilitating as the physical symptoms from the disease.