For nearly 2 decades, I searched fruitlessly for answers on what was wrong with me. I struggled with migraines, fatigue, joint pain, brain fog, nutritional deficiencies, and infertility. I knew what I was experiencing wasn’t normal for a person my age but was unable to land on a diagnosis. As a nurse, I am an advocate for my patients and through this blog I hope to be an educator and advocate for all of you. Celiac Disease can be scary. Sometimes knowing there’s someone available to help navigate the unknown is all we need to brave the journey.
What is Celiac Disease?
Celiac Disease is an autoimmune condition where the body “attacks” itself in the presence of gluten. Gluten is the protein found in wheat, barley, rye, and triticale (a wheat/rye hybrid). When gluten is consumed, the body reacts by mounting an immune response against the cells in the small intestine, as if it were a foreign invader. Currently, the only treatment for Celiac Disease is consuming a gluten free diet and living a gluten free lifestyle.
Celiac Disease is not an allergy. While the immune system is activated, it is a different type of response. Allergens are benign/nonthreatening substances (think pollen, food) that some people respond to with a hypersensitive reaction. When our bodies respond to an allergen, the white blood cells create antibodies that then attack that foreign invader. To put it very simply, an allergic response attacks an outside invader while an autoimmune response attacks our own body.
How to Get Started Living Gluten Free
Going gluten free can be daunting at first. However, it’s totally doable if you break it down into smaller tasks. Here’s my suggestion, go room by room in your house. You’ll want to look at any products that you eat, wear, or use on your body or in your environment, that have a potential to be ingested. Obviously, the kitchen will be your biggest challenge, but it is important to examine your entire environment.
Gluten is super sticky and will get stuck down in the grooves of cutting boards and scratched/marred cookware or utensils, so you’ll want to replace anything that has come in contact with gluten to prevent cross-contamination.
Kitchen
Read all food labels and remove (trash or donate) any products that are not naturally gluten free or labeled as gluten free.
Get rid of any food that has been potentially contaminated by gluten. (For example, storing a gluten free flour in a container that previously held wheat flour.)
Replace cookware, bakeware, cutting boards, colanders, utensils, storage containers (i.e. cookie jar, Tupperware-type containers, etc.).
Replace additional cooking devices like crockpots, instapots, deep fryers, Foreman-style grills, waffle makers, electric skillets, etc. I even recommend replacing your coffee maker, because even coffee can contain gluten or be cross-contaminated with it.
Buy a new toaster!
Deep clean your kitchen! Clean out your refrigerator, pantry shelves, cabinets, drawers, oven, stove, and microwave.
I recommend vacuuming out your fridge, pantry, cabinets, and drawers then wiping them down with disposable wipes or using a spray cleaner with paper towels. This may seem excessive or wasteful, but you don’t want to clean with a reusable rag, as the gluten may get caught in the fibers and you’ll basically be wiping it all over your kitchen. Yikes!
Bathroom/Medicine Cabinet
Check your toothpaste! Gluten likes to hide in the oddest places. Make sure your toothpaste is labeled as gluten free. If it’s not, replace it with one that is.
Check your medications. You may not see anything in the ingredients that suggests it contains gluten, but medications can be held together with binders that are made from wheat and therefore contain gluten. You will probably only see “excipients” listed on the medications’ ingredients. To be safe, buy only medications that are labeled as gluten free.
Look at your beauty and personal care products: shampoo, conditioner, bodywash, soap, lip balm/Chapstick, lipstick, makeup, lotions, etc. If it’s going on your face, skin, or hair, there’s a good chance it could inadvertently end up in your mouth and be ingested.
Living Room/ Remaining Rooms
For the most part, all the other rooms in your home should be good. If you and your family eat in any other room besides the kitchen and/or dining room, then you should thoroughly clean those areas as well.
Tips to Successfully Live Gluten Free
The most important part of living gluten free is having the desire to do so. If you don’t accept this new lifestyle within yourself, then you will not be successful. You must change the way you look at food. Eating is no longer just about satiation, it is about healing your body and not causing further harm. Food is now your medicine and it will heal you, if taken as directed. Changing health habits is difficult. As with changing any other habit, you must work at it every day. Educate yourself and ask for help! This isn’t easy, but you are not alone.
Common Questions/FAQ About Celiac Disease
What are the symptoms of Celiac Disease?
GI upset including s\diarrhea, nausea, vomiting, bloating, gas, constipation, and abdominal pain
Fatigue
Malabsorption, unexpected weight loss
Loss of bone density or softening of bones
Iron deficiency anemia, Vitamin deficiencies
Joint Pain
Skin rash (dermatitis herpetiformis)
Headaches
Nervous system damage indicated by tingling in hands and feet (Peripheral Neuropathy)
Infertility, Low birth weight babies
Damaged enamel on teeth, mouth ulcers
Acid reflux/ heartburn
How is Celiac Disease diagnosed?
Typically a blood test is done first. Your doctor will be testing for specific antibodies in your blood or genetic testing looking for specific antigens. The serology test for antibody tTg-IgA is the preferred test. However, the “gold standard” for diagnosing Celiac Disease is an endoscopic biopsy of the small intestine.
What is the treatment for Celiac Disease?
Currently, the only treatment for Celiac Disease is a strict gluten free diet.
What are the long-term effects if Celiac Disease is left untreated?
If left untreated, a person with Celiac Disease can have severe vitamin and mineral deficiencies and malnutrition due to malabsorption. They are at increased risk for developing other autoimmune conditions, nervous system problems, osteopenia, osteoporosis, lymphoma, and other intestinal cancers.
How do I talk to my friends and family about Celiac Disease?
Being diagnosed with Celiac Disease is a life-changer. You probably feel like your entire world has been turned on it’s head. Once you wrap your head around your new diagnosis, it’s time to talk to your people. Remember, this is a life changing event for them too. Especially if you share a home with them. My best advice is to be patient. In most cases, your friends and family are not being insensitive, they simply don’t understand what Celiac Disease is. I have found the majority of the population has no idea what CD really is and how serious it can become. Take your time, educate, and re-educate those in your life.
In Closing
You will most likely experience an array of emotions coming to terms with your new diagnosis. Learning you have a chronic disease is scary, overwhelming, and at times, very lonely. Reach out to those of us who understand if it all becomes too much. You may not realize it now, but you are now apart of a community of people who want you to do well and be your best self. So please be kind and patient with yourself and remember that you are not alone.
I would love to hear from you and be part of your journey. Please tell me about yourself in the comments below.
You can also send me a private message by visiting the “Contact Me” page.
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