Why celiac disease is so confusing.
A childhood friend sent me a message, describing symptoms, and asked me about my history with a “gluten allergy” and asked if I thought she might have a gluten allergy as well. My response to her ended up being quite long… and I thought that it might serve well as a blog post, though I have surely talked about these things before:
OK… I will do my best to answer without confusing the issue even more!
First… I don’t have a gluten allergy. I have celiac disease (as do two of my five kids), which is an autoimmune disorder — like rheumatoid arthritis, multiple sclerosis, lupus — but unlike most autoimmune disorders, the trigger (the thing that starts symptoms) is known. It is gluten. A small portion of the gluten (protein) molecule, called a peptide, does two things: It triggers a self-destruct response in the villi of the small intestine. And, it bonds to neurons in the brain, causing an opiate effect.
Thus, the two biggest symptoms with celiac disease is digestive problems (often diarrhea) and neurological problems (from as “innocuous” as depression to as severe as schizophrenia).
Here’s where it gets weird, though. There are three additional problems:
1) Since the villi in the small intestine are destroyed, many nutrients that should get in the body are not absorbed. This leads to a host of increasing health problems/symptoms that are actually secondary to celiac disease, as they are started from malnourishment of one (or usually more than one) nutrient. For instance, premature osteoporosis from malabsorption of calcium. Lack of calcium can also lead to heart problems — weird palpitations and electrical problems in the heart, because the body need calcium in order for its nervous/electrical system to work properly. There are many, many, many other secondary symptoms of celiac, which makes it particularly hard to diagnose, since the symptoms are actually spokes, and celiac disease is the hub. Often, these secondary symptoms will compound, increase, “develop” as a person ages, because the body has gone longer and longer w/o certain nutrients, and at some point it reaches a critical stage, and causes an illness in the body. Also… since CD is an autoimmune disorder, oftentimes, the body will just start spitting out antibodies to just about everything, in a “last ditch” effort to rid the body of invaders. (Often, when a person with severe, multiple allergies starts a gluten-free diet, secondary allergies and many other secondary health problems, including chronic illnesses, start healing or disappearing.)
2) Usually, even though celiac disease is not an allergy, someone with celiac disease ALSO develops T-cell antibodies to gluten, because the body recognizes gluten as a cause of the problem. IOW, if a blood draw is done, a person with celiac disease will, a vast majority of the time, show an “allergy” to gluten. So, a person can show a gluten allergy, when in reality, the *root* of the problem is celiac disease. Compounding this difficulty, although this a matter of hot debate among scientists and doctors, some people do seem to have “just” a gluten allergy, and not full-blown celiac disease. This is under debate, though, because the body’s response to having the gene that causes celiac disease is so widely varied, and many doctors think that if a person has a gluten allergy, whether or not other celiac symptoms are present, that person likely has latent celiac disease.
3) Adding even more to the confusion is the fact that some people with celiac disease are symptomatic from birth, and some people’s symptoms are triggered by a physically or emotionally difficult situation — like pregnancy, or a death in the family, or divorce, etc. Additionally, some people show symptoms in early childhood, then go into symptomatic remission (for reasons that are not at all understood) during the teen years. Then, symptoms come back later in the teen years, or even much later in life. So, it can appear that a person “develops” celiac disease at a later point in life, when in actuality, that person had CD all along, but for unknown reasons, was asymptomatic.
That was probably more than you care to know.
Suffice it to say, it’s a very confusing disease. Until recently (about five years ago), doctors used to think it was incredibly rare. It was thought that about 1 in 10,000 people have celiac disease. Then, a major, major medical study came out (Dr. Alessio Fasano, at U. of Maryland, if you care to look into it) that showed that on average, about 1 in 130 people in America test positive for CD.
Even diagnosis can be difficult, though… Some people who have the gene do not have symptoms. Genetic testing is expensive, and it is generally not done. However, the blood tests for CD often show false negatives, partly because they look (among other things) for antibodies to gluten, and not every celiac develops antibodies.
HOWEVER…. if you already have allergies, it may be wise to ask your doctor for a celiac panel blood test.
Though this is by no means exhaustive, below is a list of potential celiac symptoms.
I am MORE THAN HAPPY to answer any questions you may have, to the very best of my ability.