A digestive disease that interferes with the way we get our nutrients from food, celiac damages the small intestines from an immune response to gluten. Those with celiac disease (celiac, for short) can’t tolerate or digest gluten … a protein mostly found in wheat, rye, and barley. While gluten is found mainly in foods, it may also be found in everyday products such as medicines, vitamins, cosmetics, and even things like barbecue charcoal.
When Celiacs eat foods or use products containing gluten, sometimes even the tiniest bit, 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 runs in families, meaning it is genetic. In some people it never becomes active, although their blood test shows the genetic marker. In others it is triggered by stressful things that happen to our bodies like surgery, pregnancy, a bad infection, or severe stress. In many Celiacs 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, emotional illness, or growing pains. Unfortunately most Celiacs don’t know they have it for at least six years after their symptoms are actively showing up.
What are Celiac Symptoms?
Even though celiac is mainly a digestive system disorder, symptoms can show up in many other systems and organs as well. Some of the most common early symptoms of celiacs are:
- abdominal bloating and pain along with diarrhea (sometimes chronic)
- unexplained weight loss (in some cases weight gain)
- 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.
When celiac symptoms show up in adults (after not recognizing or having symptoms as a child) one can imagine what happens to our entire body, mind, and soul from years of not getting the right 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
Why are there are so many variations in the symptoms?
Mainly, it has to do with the amount of damage to the small intestines. The longer you go before knowing you are a Celiac, the more gluten you have consumed therefore the potential for extreme, unrepairable intestinal damage.
Research is ongoing about why celiac affects different people in different ways. Some important early findings suggest that the later in life we start eating food containing gluten along with the amount we eat on a daily basis are two key factors. Some studies suggest that the longer we are breastfed also plays a part on when symptoms show up and how severe they will become. The bottom line is the longer we go undiagnosed and untreated the more likely we are to have a more severe case with a greater number of symptoms and complications.
Understandably one of the main reasons for the creation of Jennifer’s Way, due to so little understanding of celiac, even in the medical community, is to inform and guide others in hopes they do not also go through years of medical misdiagnosis, pain and suffering.
How do I get diagnosed?
Recognizing that you have celiac is really difficult since the symptoms are very similar to so many other diseases and medical conditions. It is often confused with menstrual iron deficiency anemia, diverticulitis, infections of the upper and lower GI, chronic fatigue syndrome along with the chronic conditions mentioned above (IBS and Crohns).
It is now estimated that over 2 million Americans (1 in 122) have celiac and among those who have a family member with the disease it could be as high as 1 in 22. Celiac also tends to show up more in people with other genetic problems like Downs Syndrome and Turner Syndrome, a chromosomal condition in females. The good news is that reliable blood tests are now available and the medical community is becoming more aware of the seriousness.
If you think you have celiac disease and intend to get diagnosed it is imperative that you do not change your eating habits. It is important in this case as it is thought that 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.
Next, if your blood test suggests a high level of antibodies called tissue transglutaminase and you are experiencing other symptoms (mentioned above), your doctor should then perform a biopsy of the small intestine to see if the villi are being damaged. In a biopsy a tiny sample of tissue is removed from the small intestine with a tube called an endoscope. Some Celiacs (from 15 to 25%) also have a symptom called DH (Dermatitis Herpetiformis), which is a blistery and really itchy skin rash usually on the knees, elbows, scalp, back and the buttocks. Amazingly, those with DH show very few if any of the digestion related symptoms of celiac. In those cases a skin biopsy is usually taken before the intestinal biopsy.
How is Celiac treated?
Celiacs MUST maintain a gluten free diet. Depending on the degree of damage to the body, some people show immediate improvement in symptoms after removal of any food or products that contain gluten. Reading the ingredients for everything you put in or on your body is very important and key to finding relief.
Some people, unfortunately, show little or no improvement even after total 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.
Gluten is everywhere and in an astonishingly high number of foods, 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 at markets (organic or not). Fresh meals are being prepared with the intent of being gluten-free but are contaminated during preparation with a knife or cutting board that was exposed to gluten.
What can I do beyond eliminating gluten?
After years of damaging our bodies internally, we Celiacs are learning that eliminating gluten is not the only answer to finding relief. Our systems are used to eating in a certain way so a dramatic change in diet can affect us in ways we do not expect. In other words “withdrawal” from gluten based foods can create mind, body and soul symptoms that can be as debilitating as the physical symptoms from the disease.
The creation of Jennifer’s Way was motivated by so many aspects of having celiac disease. The journey to being diagnosed, the search for useful information, and the motivation to learn to live again . Did you know certain herbs and spices in foods and beverages have calming, anti-inflammatory, energy increasing, soothing and/or other beneficial effects? This site will be rich with suggestions, ideas, recipes, resources, and thoughts that promote better, healthy and wholesome living. It will also include some of the positive results I found myself in my quest for a wholesome life.
Ever Onward ~ Jennifer