This article was originally published on my Linkedin Account on 1/26/17.
I was officially diagnosed with Celiac Disease today. You would think I would be upset. But in fact, it’s a relief. I have known that I had Celiac Disease for over a year. Yes, I self-diagnosed, but I will post that in a different article. Celiac is not an illness that you would wish upon anyone. It’s life altering. And it’s completely misunderstood by almost everyone I know. Even most physicians that I have seen over the past year are not educated in it. Granted please understand I reside in Louisiana. But also understand that the average length of time to get an accurate diagnosis in the US with Celiac Disease is between 6-10 years (Celiac Disease Facts, Beyond Celiac). Which is quite concerning as the prevalence of Celiac Disease is 1 in 133 Americans (Celiac Disease Facts and Figures, The University of Chicago Medicine). If left undiagnosed and untreated, the consequences can ultimately result in death. So why is this disease so misunderstood and underdiagnosed? I am going to just state it. Because there is no pharmaceutical medicine on the market to treat it. And the US thrives on the pharmaceutical industry.
“Celiac Disease is an inherited autoimmune disorder that affects the digestive process of the small intestine,” (Celiac Disease Facts and Figures, The University of Chicago Medicine). Autoimmune disorders typically affect multiple areas of the body. Because in these disorders, one’s body attacks itself. If Celiac Disease is not diagnosed and treated, then it will result in severe damage to the villi in the small intestine. These villi absorb important vitamins and minerals that are required for the human body to function. Thus undiagnosed and untreated Celiac can trigger other autoimmune disorders, Osteoporosis, Infertility and Cancer (The University of Chicago Medicine). There are hundreds of documented symptoms, but the most common are significant gastrointestinal issues, fatigue, joint pain, migraine headaches, weight changes, vitamin deficiencies, skin rashes, hair loss, and neurological issues. There is no current medication to treat Celiac Disease. No cure. The only known treatment is to live a gluten free lifestyle. And even if you are able to manage this difficult task, you will still have the illness and some symptoms.
Living gluten free sounds easy. But it’s actually very difficult. Because gluten is in almost everything; including prescription medications, vitamins, bread, pasta, prepackaged food, ice cream, candy, hair dye, make up, shampoo, soap, toothpaste, cleaning products, soft drinks, juice, and alcohol. Gluten is a protein that is typically used as a binder in products. And for someone with Celiac disease it only takes 1/164th of a slice of white bread to cause significant damage to the small intestines (11 Common Celiac Disease Myths, Gluten Intolerance School). The problem with gluten being a protein is just because you can’t see it, doesn’t mean it’s not there. For example, if someone makes a sandwich with typical white wheat bread on a plate and leaves it on the counter. And a Celiac patient isn’t aware of this and uses that same plate, then that person will likely become ill. When a Celiac patient ingests gluten the symptoms are flu like in nature and can last for several days. The symptoms may include severe stomach pain, diarrhea, nausea, dizziness, joint pain, distention of the abdomen, migraine headaches, brain fog, irritable mood, and fatigue (among many others). Thus someone who has Celiac Disease is not typically able to eat at restaurants, the movie theater, at Holiday parties, or family dinners. It changes your social life. It changes how you shop. It changes how much money you have to spend on food and products. The ingredients on everything have to be analyzed. And currently there is no US law that requires pharmaceutical companies to report gluten as an ingredient (Gluten in Medication, Celiac Disease Foundation). Nor does the FDA require that gluten is listed as an ingredient in Food or Skincare products, it is currently considered “optional” (Questions and Answers, Gluten Free final rule, FDA 2014). Bizarrely enough the FDA passed in 1994, The Dietary Supplement and Educational Act, which is quite strict on vitamins and supplements (Dietary Supplements and Ingredients, FDA). Which to a Celiac patient means that typically Vitamins and Supplements are more “trustworthy” on reporting gluten. Thankfully many food companies have recently jumped onto the “gluten free” bandwagon, and have begun to label their products as “gluten free.” For Celiacs this is both a blessing and a curse. Because many people have decided to “go gluten free” as a form of dieting or as part of a lifestyle (for example, Paleo). And thus people, who work in the food industry, are aware of this. And can become complacent with ensuring that something is truly gluten free. But eating gluten free is not an option or diet fad for Celiac patients. It’s not a food allergy. Anything placed in or on the body has to be questioned. In regards to makeup, soap, cleaning products, skin care, and toothpaste…Amazon becomes your best friend. Thankfully it is not difficult to find appropriate products online, but they are obviously more expensive.
Many people are beginning to understand that if you say Celiac, that you cannot eat gluten. Which is obviously significant progress. What people do not understand is what gluten actually is. How serious the illness really is. And that unfortunately an autoimmune disease is your body attacking itself. Thus living a gluten free lifestyle is not a cure. Because your body may decide that soy is an “enemy.” And thus Celiacs often find that they have similar “gluten” reactions to other foods or ingredients. These are commonly corn, soy, milk, shellfish, tree nuts, processed sugar, night shades, quinoa, and additional preservatives. This is not a true food allergy. But a food intolerance. Thus someone with Celiac Disease may become very limited in what they are able to eat. Typically Celiac patients with these symptoms have to go to an Autoimmune Paleo Lifestyle or a similar diet. Which is very restrictive but significantly decreases the symptoms of Celiac Disease.
I understand that our society views the gluten fad as comical. Who can forget Jimmy Kimmel handing out Peanut Butter and Jelly sandwiches at the Emmys in 2016, reporting a warning to those with peanut and gluten allergies. He also reported that he had gluten free options available, and one epi pen. Not to pick on him, but he also had a skit called “Glutenfreecouples.com” during which he stated, “Introducing the most annoying couples in America.” Wow. Sorry if those who have Celiac Disease are annoying, but we are trying to remain healthy and alive. Gluten is essentially poison to those with Celiac Disease. Just because an illness is invisible does not make it any less real. And before you roll your eyes, you should ask yourself, “Why would anyone want to live like this?”
If you are concerned about having Celiac Disease and would like to be tested, speak to your PCP. A simple blood test can assist in detecting the illness. However the diagnosis from the blood test is only around 50%. Thus I suggest also having an upper GI endoscopy performed by a Gastroenterologist to see if there is harm to your villi. And last, a genetic test should be performed to rule out Celiac Disease. This is also a blood test and fairly effective. Reminder to not go gluten free until you have had these tests performed. Once you eat gluten free, the only test that will be effective is the genetic testing. Consider joining a Celiac Support Group online if you suspect that you have the illness. They provide a wealth of information.
Great Resources for Celiac Disease:
My personal thoughts on why gluten should be removed from hair and skin products: First, I believe that we have to listen to our body. I understand that everyone is different and some people are more “sensitive” than others. But I like to use the analogy of taking an epsom salt bath. When we do this, it relaxes our muscles. This is because the salt absorbs through our skin and gives it a strong dose of Magnesium. And Magnesium is a natural muscle relaxer. Most people can relate to this. So if we use that concept, it’s quite understandable that gluten can also be absorbed into our skin. Another issue to consider is that makeup and skin care eventually ends up in our mouth. Like digesting lipstick when you eat or drink. Obviously each person will live how they want. But I will say that I noticed a significant improvement in my health when I eliminated all sources of gluten.
My hope is that this provides education to those who are seeking answers, recently diagnosed, family members, friends, coworkers, and the medical community. Thank you.
Angie Simonton, LCSW-BACS