Your doctor broke the news: Celiac disease. Lucky you! Great. Now what? Your doctor probably told you to follow a gluten-free diet, maybe they recommended a vitamin or two, and sent you on your way, right? If that’s the case, check the list below for 9 things to do after being diagnosed with Celiac Disease.
1. Search the Internet for Gluten. Search the web for gluten and find out everything that contains gluten so you know what to avoid. You need to know what to avoid so you can choose the right foods. Make a list, it will help. This list will be long and it will probably intimidate you and may possibly cause a minor (or major) panic attack. Realize this ahead of time and tell yourself to chill when your heart starts racing or everything starts to close in – all will be ok.
2. Tell your Family and Friends. Tell your friends and family that you have Celiac disease. Let them know that the next few months are going to be very difficult for you as you figure out how to handle gluten and your new gluten-free diet. Be prepared with what you’ve learned about your disease. They will ask questions, and you will want to know how to answer them. Burying your head in your hands and crying “I don’t know what I’m gonna do!” should be reserved for your best and closest friend and only said once. Trust me, it won’t get you sympathy from anyone else. The Internet exists and your life depends on you figuring out what to do – see step 1.
3. Reminisce. Think back on all the times you had to ditch your family and friends and didn’t know why. Think about past sicknesses or health-related issues you’ve had in your life including bone breaks, anxiety, thyroid issues, surgeries, unexplained illnesses, etc. All of these things may very well be linked to your Celiac disease. In me, it’s shown in bone breaks, stress fractures, thyroid issues, anxiety, teeth problems & surgeries, restless legs, inflammation, dry mouth, adrenal issues and chronic pain. In my grandmother, it caused Parkinson’s, Restless Leg Syndrome, fractures, stumbling and fainting. Malnutrition from Celiac disease can cause many, many ailments, syndromes and other diseases of bodily functions and organs. It can even cause cancer.
4. Join Online Forums and Message Boards. Where you can share your symptoms and stories and talk to others who can relate to your celiac disease. I found so much help in reading through the forums. Search for celiac and gluten-free blogs, read and comment. Your family and friends won’t understand like they can, it’s a tough subject to grasp. The Celiac community wants to help you in your journey to understanding your disease and how to heal.
5. Now You’re Educated. Accept the Change. Acceptance is the key to your health. Until you accept that this disease and gluten has caused all these issues for you, you will never be able to fully move on from gluten and remove it from your life. Accept that you are special and unique. You are the 1%. Somewhere along the way your genes were modified to not tolerate gluten – maybe it’s bad for everyone and your body just evolved quicker than others. We don’t know yet, but for the sake of your long-term health, the gluten’s gotta go.
6. Time to Implement Change. Get regular tests to monitor your healing process. Try to get tests for vitamin and mineral deficiencies and food allergies. Learn about the intestines, a leaky gut, the damage that’s been done by Celiac disease and what you need to do to heal your intestinal lining so your body can repair the damage that’s been done.
7. Change your Diet. Implement a specific diet tailored to your needs. Remove any and all gluten, barley, rye and malt from your kitchen, bathroom and laundry room. Check soaps, shampoo, conditioner, lotions, creams, serums, detergents, etc. for gluten and replace with gluten-free versions. Check your medication ingredients for gluten. Buy new pots, pans, utensils, and bowls that will be designated gluten-free. To be on the safe side, replace everything if possible. This may be hard for those in your family who don’t have to change. Ask them to be supportive of you and this new diet as you get used to it, and maybe have them only eat gluten when out of the house until you get your gluten-free cooking mastered. I keep a separate pot, bowl, spoon, etc to make my husband his gluten, but most of our meals are gluten-free. Cook everything separately and be careful not to cross-contaminate. You will think you aren’t that sensitive, but trust me, you are. The Celiac body cannot handle any amount of gluten. Think about the body’s reaction to gluten this way – if you eat gluten, a fire erupts in your gut and slowly spreads around your body. It will not go out, no matter what you do to tame it. This fire spreads through your body for months, frying nerve endings and villi, causing inflammation and destruction everywhere it goes. Whether you feel it or not, this is what gluten does to your body and why it’s imperative to avoid gluten at all costs.
8. Keep a Food Journal. Write down new eating habits and how they make you feel. As a celiac, you have a tendency to forget things, like what a certain food did to you two months ago, or whether or not that restaurant you went to really understood your dietary needs. It’s important to write down what you eat and how it makes you feel so you can avoid the foods that cause you problems. Beginning on the celiac diet, you’ll need to remove a lot of foods as many will cause you sensitivities and impede on your healing process. The main ones are dairy (lactose), eggs, corn, and nuts. In the beginning this list may seem really long, but as you remove things and heal your stomach, you should be able to add those foods back in moderation, though it will take years for this to happen.
9. Don’t Worry, Be Happy. Your life will change. Eating out will not be as fun as it used to be, it can become a stressful situation. I recommend not eating out until you understand your disease and learn how to eat again. Please don’t let this get you down to the point that you can’t get up again. When I was diagnosed there weren’t many options available and I recall coming to tears in the grocery aisle as I searched for something I could eat, and that was only 2 years ago. I can’t imagine what people went through 10 years ago. Today, there are so many more options available and more restaurants are accepting the gluten allergy and being conscious of cross-contamination that it’s becoming easier, and tastier, to handle celiac disease. Things will get better and you will heal if you stay focused on your health.