One of the biggest frustrations about life with a chronic illness is that for many people their condition is invisible. Pain and fatigue can’t be seen from the outside. Because it can’t be seen it’s very easy for family, friends, and coworkers to misunderstand the daily impact it has on our lives.
I’m introducing a new series titled Invisible where I will bring some awareness to a multitude of chronic conditions that people live with in silence everyday. Taking 15 minutes to learn a little bit about a condition your loved one or friend is dealing with can help you to provide support while strengthening your relationship. I’ve written about the invisible nature of chronic illness before when I discussed the process of letting go once a doctor finally ‘saw’ me for the first time. It is something that is near and dear to my heart. I’m looking forward to learning more about the obstacles and incredible resilience that invisible illness warriors face everyday.
If you have any suggestions for conditions that you would like to see or learn more about, or if you would like to share your own personal health journey, please comment below or email me at email@example.com.
You’ve seen it on commercials, on cereal boxes, on menus, and probably even know someone who follows the diet. But do you know what gluten actually is and why it is a central part of many people’s lives?
Celiac Disease. Four years ago this meant absolutely nothing to me. Little did I know that those two words would completely change my life.
The What: The Rundown on Celiac Disease
Celiac disease is an autoimmune disorder, which in really simple terms means that the body gets confused and starts attacking itself. For individuals with celiac disease eating something with gluten causes the body to create antibodies in the blood. These antibodies attack the small fingerlike projections called villi that line the small intestines. Villi are responsible for promoting the absorption of nutrients into the body. When villi are damaged they no longer have the ability to absorb nutrients. In a person with celiac disease the autoimmune attack flattens and shrinks the villi leading to malnutrition. Beyond the internal war, people with Celiac disease experience a wide range of symptoms including but not limited to diarrhea, vomiting, severe stomach & intestinal pain, headaches, brain fog, and skin rashes.
The Gluten Dude surveyed individuals with Celiac disease and created this graphic highlighting the most common symptoms reported. You will notice that the list is quite large with symptoms affecting multiple parts of the body. That is because our body is not just compartments – all of our systems work together to form one badass piece of machinery. Because we are so badass if one system isn’t working top-notch, we might not notice right away. We keep on chugging along, but this eventually wears out.
Think of a balding car tire. It’s still totally drivable, but it’s getting to the end. It doesn’t hold air quite as well, so the gas mileage reduces. Control isn’t as good either, you can feel it pull a little as you cruise around turns. Eventually it can’t handle the pressure of the road and bursts, blowing out and bringing the entire vehicle to halt until it can be repaired. At first the tire really only impacted itself, then it slowly began affecting the car as a whole. This is an example of what happens in autoimmune disease. At first the disease only impacts the direct area of the attack, but over time the inflammation and damage begin to affect other systems and processes. Eventually it’s had enough and entire systems start to shut down, presenting as outward symptoms or complications.
Left untreated Celiac disease can ravage the body leading to an increased risk of cancer and serious health problems. Celiac disease is often misdiagnosed. Estimates suggest as many as 2.5 million American’s live everyday undiagnosed putting them at risk for complications. With every autoimmune disease a person develops, their risk of developing another increases, especially the longer one goes untreated. Celiac disease has been linked to other autoimmune conditions including Type I diabetes, multiple sclerosis, dermatitis herpetiformis, hashimoto’s thyroidtis, crohn’s disease, and lupus. Other associated illnesses and complications also include infertility, early onset osteoporosis, anemia, gall bladder malfunction, ataxia, and epileptic seizures.
Who Does Celiac Affect?
It is estimated that Celiac Disease affects 1 in 100 people world-wide. Celiac disease is hereditary, running in families. In individuals diagnosed with celiac disease their first-degree relatives have a 1 in 10 risk of also developing the condition. Some studies have demonstrated rates as high as 50% for a diagnosed person to have at least one family member test positive upon screening. Anyone with the genetic predisposition can develop celiac but it is triggered by some type of stressful event, including injury, illness, or trauma. Emerging science is beginning to indicate the possibility of celiac disease in individuals without the genetic pre-disposition. There is still a lot to be learned.
Who should get screened?
- Immediate family members of a person diagnosed with celiac disease
- Individuals experiencing symptoms of celiac disease
- Individuals with related autoimmune disorders
If you think you or someone you may know has Celiac disease please review the symptoms and request to be tested.
Diagnosis continues to be a topic of some controversy in the celiac and gluten-free communities as it is not a perfect science. It takes on average 5-6 years to be diagnosed with Celiac Disease dropping from the previous average of 9-11 years. Complicating diagnosis is the fact that many people have no outward gastrointestinal symptoms of the disease. Some individuals experience the internal damage central to celiac disease, but never experience GI related symptoms. Some people do not test positive on blood screening despite presence of the disease (research is demonstrating limits in testing) as IGA deficiency is more common in celiac disease. Medical education on the disease is also limited and outdated so for many physicians it simply isn’t on their radar. Some doctor’s outright refuse to test for it when asked, leaving patients to order labs on their own.
The ‘gold standard’ diagnosis begins with a Celiac disease blood panel followed by a biopsy of the intestine. Make sure your doctor runs the entire Celiac blood panel as often they will only run one or two of the tests and the disease can easily be missed.
Celiac Screening Blood Panel
- tTg – IgA
- tTg – IgG
- Total Serum IgA
- DGP IgA and IgG
Celiac Genetic Blood Tests
You must be consuming generous amounts of gluten daily for 4-6 weeks for accurate testing. You must continue this consumption until your biopsy. Many people choose to eliminate gluten immediately after blood testing, skipping the biopsy. Before doing this it is important to take into consideration one’s commitment to the diet, family history (genetic tests available), and symptom relief when removing gluten. This approach has both pros and cons and should be carefully decided.
If you do not test positive with celiac disease but still suspect a reaction a non-celiac reaction to gluten you may want to pursue further diagnostics with an integrative or functional medicine doctor. You can also try an elimination/provocation diet to see if you have symptoms when removing and adding gluten back in to your diet.
How is Celiac Treated?
The only treatment for celiac disease is adherence to a lifelong 100% gluten-free diet. Gluten is a protein in wheat, barley, and rye. This means breads, pastas, donuts, bagels, beer, and most processed foods are off limits. Gluten can also be hidden in medications, vitamins, supplements, and beauty products.
Even microscopic size crumbs of gluten can trigger a response so it is important to be very careful of cross contamination from shared food prep areas like cutting boards and toasters. Early on in our gluten-free journey I didn’t yet realize how serious cross contamination could be. My husband was still eating gluten and we tried to just segregate an area in the kitchen for me. While cooking my food I moved his loaf of bread from the counter to the cabinet, not paying any mind to the fact that the bag was ‘breathable’ with a million little holes. Touching that bag of bread and then my food kept me out of work and in the bathroom for an entire week. Not everyone will have such a severe response like myself, but the intensity of symptoms does not indicate the amount of damage happening to the intestines. Everyone with celiac disease needs to be mindful of cross contamination, especially those that do not experience symptoms when exposed. If you are a family member or friend of a person with celiac disease take some time to educate yourself on this risk. It will mean a lot to your loved one!
Beyond the Book: The Emotional and Social Aspects of Celiac Disease
The impact of any disease extends far beyond the textbook explanation. We are humans. We hurt, we feel, we throw tantrums, we process, we grieve, we grow.
Imagine that you are diagnosed with celiac disease or a food allergy and your entire way of eating is completely yanked out from under you in one instant. Every work lunch, fancy dinner, and family holiday changed forever. For a person with celiac disease this is a very real scenario.
The doctor tells you to just eat gluten-free. You have no idea what that means so you consult google who tells you that your favorite food, second favorite food, and 3rd, 4th, 5th, and 6th favorite foods are now classified as poison. You try to read labels, but gluten isn’t labelled gluten and you keep forgetting to bookmark that list on your phone. You aren’t sure if caramel color is gluten-free or not, and that food starch, oh man you are pretty sure you remember something about starch. Your husband tries to be extra sweet during this hard transition by cooking you gluten-free mac and cheese, but didn’t realize that he grabbed the Amy’s Organic instead of Amy’s GF pasta until after you started eating it. He feels horrible for making you sick (and for having to deal with the wrath you let loose on him), but geez this transition is getting to him too. You get mad at yourself for yelling at him, but gluten makes you so foggy and irritable. Three weeks after your diagnosis you have to travel for work, being away from a kitchen for a full week. You can’t afford to get sick while on business so you don’t want to risk eating out. You barely have a grasp on your new diet, how on earth could you describe it to someone else and eat safely? Instead you eat all week from a mini fridge and a tiny microwave; mostly gluten-free protein bars and salads because you’re in the middle of nowhere and they have no gluten-free options at the store. Your last night of the trip you can’t take anymore throw a mini adult tantrum and sob while eating straight from a can of tuna on the hotel floor. The weekend you get back from your business trip your best friend is getting married and you wonder how you will ever participate in a normal social event ever again. You feel so isolated. Your friends and coworkers try to be there for you, but they really don’t understand anything about it and keep encouraging you to just have ‘a little bit.’ Or they are so excited that they made you gluten-free brownies, only to have cut them with the same knife that cut the gluten filled batch. You have to awkwardly decline. You finally muster up the courage to eat out only to find a crouton at the bottom of the salad you just devoured. Now you have to explain to your boss why you need another 4 days off of work.
The transition to a gluten-free diet can be completely overwhelming. It is in no way easy. A lot of people have difficulty eliminating gluten and feel incredibly guilty when they trip up. You are reminded at least three times a day of your disease as you will never have a meal again where gluten doesn’t cross your mind. It’s really easy to get caught up in the negative impacts disease has on our day-to-day lives, but for true healing it is important to focus on the mind just as much as the body. Despite how much it sucks, it doesn’t have to be such a horrible thing. And for me, celiac disease wasn’t life ending, it was life beginning.
Keeping a Positive Perspective
There is a coping skill in Dialectical Behavioral Therapy called radical acceptance and I find it really useful when applied to chronic illness. When someone is diagnosed with celiac disease it is perfectly normal to get angry and want to fight the fact that this has happened. But staying in that mindset is non-productive and a risk to both mental and physical health. When we refuse to accept our pain it turns to suffering. Instead, choose to flip how you think about it. Accept that it is part of life now. When you can fully and radically accept something that is painful it does not mean that you agree with it, only that you are no longer fighting the reality of it. This gives you much better resources to adjust to the day-to-day realities and helps you to thrive physically and mentally.
While it took time and commitment, this shift in thinking completely 150% changed my life. Celiac disease quickly became something positive to me. I had been sick for so long – years. I often wondered if it was all in my head like so many doctors implied. But now I didn’t have to be. It was my answer. It was the key to my toolbox. Radically accepting the reality of my disease and viewing it as a positive helped me to focus on all the great things I was doing to adjust to my new way of life. I still had my moments. Fits when things just didn’t go my way and I desperately wanted to sick my teeth into a loaf of Italian bread and a plate of ravioli. But when I had a set back I let myself have it and then focused on my comeback by doing more of what was working. I didn’t beat myself up over the mess ups. Sure a lot of things take more time now, especially in the kitchen, but I adjusted my priorities. I tested things until I figured out what worked for me. I consciously made an effort to develop a relationship with food that was as healthy as the health I was striving for physically. I focused on all the incredible foods I could eat, and not the ones that I couldn’t. The more I learned about the healing properties of real food and the value of nutrition the easier and easier it all became. The more positive changes I made the more things just fell into place. Doors open. When you choose to focus on the strengths of a situation you begin to change the meaning of the event. You also begin to open up paths and possibilities that you wouldn’t have seen otherwise. Positivity works like that. It builds success.
Share the Knowledge
Please help spread awareness and share this post! You never know who it might help.
If you have any suggestions for conditions that you would like to learn more about, or if you would like to share your own personal health journey in a future Invisible spotlight please comment below or email me at firstname.lastname@example.org.
I’m also more than happy to answer any questions about celiac disease, transitioning to a gluten-free diet, or coping with invisible illness!