In honor of Celiac Awareness Day The Celiac Disease Advocacy Team conducted a “question and answer” from individuals who had little to medium exposure about the disease.
The Q. is the volunteer’s paraphrased question/dialogue.
The A. is the Celiac A- Team's response and paraphrased dialogue. (From Individuals who have experience Celiac Disease, not medical professionals)
The volunteers (Q.) were take from a sample of the population in South Florida and more specifically:
A retired grandparent
A private business owner/investor
A restaurant manager
Q: Celiac is just wheat intolerance, right?
A: No. Celiac disease is classified as an autoimmune disease. The immune response is triggered by gluten (not merely wheat). It derives from wheat, rye, and barley and is found in more ingredients than most realize. Dairy, coffee, and certain grains are thought to have the same response for certain individuals as well.
Q: So you don’t go into anaphylactic shock or swell up if you eat the wrong foods?
A: No that would be an allergic reaction. A person with Celiac disease experiences an unhealthy immunological response.
Q: Well what does autoimmune mean?
A: To put it very simply: The body mistakes a certain trigger and in this case gluten, as a pathogen (a bad intruder for the body). The body then sends antigens (you’re body’s defense) to destroy this “pathogen”. There is nothing to be destroyed and therefore your body ends up attacking itself. In celiac disease your villi become inflamed and are wiped out.
Q: That sounds annoying. What are villi?
A: Villi are in charge of absorbing nutrients. They remind me of little sea anemones that sway along the lining of the small intestines. The autoimmune response elicits an attack and flattens the villi rendering them useless.
Q: So people with celiac can’t absorb nutrients?
A: Not if that person continues to eat gluten. The villi can grow back over a period of time by following a strict diet. This applies to medications supplements, cosmetics, and other items as well that gluten hides in. In my case I can’t have coffee, dairy, and certain grains either even if they’re labeled gluten-free.
Q. Wait…No dairy?? Or COFFEE?? But they’re gluten-free?
Yes and yes. Many people with Celiac disease are capable of eating dairy and coffee and are fine. But coffee is highly acidic and poisonous to the already inflamed digestive system (you’ll need potty breaks aaaall day if you get what I mean). 50% of people with celiac disease cannot have dairy. Dairy’s chromosomes are almost identical to that of gluten’s and body can mistake it for gluten. The same goes for certain grains like quinoa, rice, oats, and many others.
Q: Oh, at least the small intestine’s is the only part you have to worry about.
A: Actually there are numerous complications that correlate with the disease. It’s actually so severe it’s considered a disability.
Q: Geeze. Complications? What, like stomachaches?
A: You could say that…Yes, severe stomach aches along with a slew of complications. To put it shortly and simply it’s like having the stomach flu 90% of the time (among other things. I’ll spare you details). It will manifest in other illness as well. E.g. Anemia, osteoporosis, allergies, severe mouth sores, chronic fatigue, IBS, hair loss, eczema…many more…
Q: Handicapped? How so?
A: Each symptom/complication varies with each person. I’ve heard some describe their experience as; “I just never felt well and didn’t know what was wrong with me. I’ve been miserable my entire life.” Then others are bed ridden, essentially handicapped, and may even pass away.
The body is malnourished and unable to thrive. The immune system is constantly in defense mode and therefore cannot defend against common colds or illnesses. There is a component of physical pain that comes along with the disease as well. At times there is an overwhelming sense of “I can’t go on.” What happens microscopically has the power to unwind the very being of person. This includes their physiology as well as mental and emotional states that are at risk.
Q. Will you ever get better?
A. Yes of course but there is not treatment for it besides diet and exercise. The disease is chronic meaning I’ll have it forever. I do have the ability to manage the disease and improve though.
Q. So you actually feel the affect of the disease? Is it only when you eat something you’re not supposed to?
A. It has been 6 years since diagnosis and only began to feel improvement s in the last year. Granted, I was doing a lot of things wrong and my case is severe. The disease manifests into emotional, social, and mental consequences as well that are ever-present unless resolved.
It does get better.
Q. I don’t fully understand how your mind and emotions are at stake if the problem is with your digestion.
A: I realize this concept is hard to understand. It’s even more complicated to explain because there is limited research on the topic. The hindrance of a person’s cognition (thinking) and mental/emotional state due to the disease is often overlooked. However, the limited research does show the link between the two. People with Celiac disease suffer from what I like to call “brain fog.” The person is wiped out, in a fog, inattentive and struggles to remember and re-call information. Before I knew about brain fog I described my a feeling like my brain was tied in a knot. Not only is this extremely frustrating but it’s nearly impossible to excel in school, work, or most anything that requires much thought. This may potentially result in insecurity, anger, problematic behaviors, and so on.
Q. Brain fog accounts for hindering cognition and mental states?
A. Yes but along with many other causal factors. When the body is constantly under attack the person cannot function properly. Have you ever been jet lagged? Now imagine that while trying to read the paper, hang out with friends, make important decisions, or excel at work and school. Celiac disease may feel similar to that.
Q. So if my child has celiac disease they’ll have trouble in school and have behavior problems?
A. I’m not saying this is a telltale sign of celiac disease and that every person is affected in the same manner. The ability to learn and one’s moral compass are still present. One of my dearest friend's has celiac disease and was also the valedictorian in her graduating class. But consider how difficult the growing pains of life can be for teenagers and throw in the variable of an autoimmune disease (especially one that is undiagnosed). You’ll see things become much more complicated especially for a child or teenager that does not know any better. I've spoken with individuals that accounted their cognitive celiac disease symptoms as their own fault or shortcomings. They believed that they fell short and simply could not keep up with everyone else. After they became diagnosed I've seen these individuals turn their lives around: Excel in school, make wiser decisions, gain confidence, have and maintain healthier relationships...
Q. I don’t mean to be blunt but since the diet has to be so strict…how come some people with celiac are still over weight or not insanely skinny like others who eat so minimally?
A. Great question and I’m glad you asked. Some individuals tend to be turned off by eating gluten free when first diagnosed with celiac because they gain 5-10lbs. This is for many reasons. 1. You’re able to keep things in your body now. You’re not losing everything from constantly going to the bathroom. 2. Some mistake food items to be healthy simply because they containt a gluten-free label. 3. The problem with Celiac is that your body is not absorbing the nutrients but you continue to keep the calories. 4. Your intestines are immensely inflamed and your body creates insulin to protect itself against the inflammation. Inflammation = weight gain and retention. But it all evens out in the end- the diet is about being the best you can be and reaching optimum health- not becoming skinny.
As always, we welcome any questions or comments you may have