I was so blessed to have my mom diagnosed with celiac disease at the same time I was. Once diagnosed, my husband also became on of my biggest advocates so I have always had an amazing support system. Both have given me the confidence to start the Celiac Disease Foundation Arizona East Valley Chapter support group and my websites. Since then I have vowed to help others the same way they and so many others have helped me. I never, EVER want anyone to feel alone on this journey…so know that you can email me anytime with any questions you have.
I want to start by emphasizing that living gluten-free is not for everyone. It is so important that if people suspect they have celiac disease or issues with gluten, that they consult a GI doctor right away. Find one who is knowledgeable in the field of celiac disease and gluten sensitivity. Accurate results for celiac disease (sadly) only come while an individual is eating gluten regularly in fairly large amounts. A celiac diagnosis can provide so much confidence and closure for those likely to “quit” the diet after being discouraged by it. Celiac disease is such a serious disease and one that cannot even be cheated on in the smallest degree so I recommend getting that test first then going from there with your doctors assistance. For those who have done all of that and still can find no conclusive results but know they feel better living gluten-free, I would say listen to your body at that point. I want to remind you that I am not a doctor and the things listed below are my opinions and compilation of what has worked for myself and many others that I have met over the years.
Here are the steps I recommend once you are diagnosed with celiac disease:
1. Find a support system. There are so many resources both online and in person. There are multiple support groups around the nation that have monthly meetings and events. The Celiac Disease Foundation is my favorite but I am partial. 😉 Gluten Intolerance Group and Celiac Sprue Association are great ones as well. NFCA is a fantastic online support and resource that I just adore and consider another favorite! They often have webinars, chats and events. Delight Gluten Free and Gluten Free Living Magazines are excellent print and digital resources as well as many others. Bloggers are fun and often provide the much needed humor, recipes and reviews you are looking for. GFF’s or gluten-free friends can make the difference between an enjoyable gluten-free life and one that is constantly plaqued by burden and despair. I have been so blessed to have the greatest gluten-free friends that make my journey not only one that is doable, but one that is fun! We celebrate this lifestyle together and know that come what may, we will always be here for each other and will continue to give it our all, 100% of the time because when you have celiac disease, eating gluten-free 99% of the time just doesn’t cut it.
2. Decontaminate your kitchen and bathrooms. As you know, you will need to avoid cross-contamination in every aspect. This will require you either have a 100% dedicated gluten-free kitchen (which most cannot and don’t have) or to lay some serious ground rules for your “new” kitchen. Gluten-free toaster, colander, utensils, sponges, cutting board and so on are going to be required to keep you from getting sick. If you must have gluten in your house, have a dedicated cupboard and preparation area for it. Glutenfreelabels.com ROCKS and makes it easier for a family to know which peanut butter jar is and isn’t gluten-free for example. For your bathroom, makeup, haircare products, lotions, toothpaste and medications can all contain gluten and quite often do. Switch all products out with gluten-free versions. Cross-contamination comes in many forms and that includes kissing, yes kissing. Have your spouse or significant other be mindful of what they eat and when they kiss you. Either they will prefer to just eat gluten-free or will be brushing with safe toothpaste a lot! 😉
3. Take charge when you are out of your home environment. You MUST be your own advocate. Those who allow a little gluten here and there make it so tough for those of us who try to explain over and over that even a crumb is harmful. It is tough when friends have heard, “Yeah, I have celiac disease but I can cheat every once in a while.” NO, we cannot and we must change that mindset. When you are grocery shopping, be meticulous about reading labels. When in doubt, don’t buy it. The Is that gluten-free? app sure makes grocery shopping easier as does the print grocery guide by Triumph Dining. It is best to stick to clean, whole foods as many are naturally gluten-free for one and number two they will be the best thing to help your damaged gut to heal. We are so lucky to have recently had the FDA pass the 20 ppm gluten-free labeling law. This is a GIANT step for those of us living gluten-free for medical reasons.
When dining out, be sure to do your very best to call ahead and speak to the chef. Ask every question you can about preparation, cross-contamination and the gluten-free menu offerings. Apps like Find Me Gluten Free and Can I Eat Here are great for helping you locate a safe place to eat. Since the whole staff is part of your dining experience it is important that you are comfortable with everyone from the server to the chef to the managers knowledge of preparations for those with celiac disease or serious food allergies. It may be dramatic but I always let the server, chef and manager know that if I get even cross-contaminated, I will be violently ill before even leaving their restaurant as well as for weeks to follow with delayed symptoms that for me include extreme nerve damage including nueropathy and emotional stress of depression which I don’t ever have otherwise. They seem to be more on their game when I make them a little scared of my reactions. 😉
4. Be prepared. Always carry safe snacks that you can dive into when you are out if all else fails. It is better to be safe than sorry. Enzymes and Redmond Clay help if you have been glutened despite your best efforts.
**Some things to remember:
- Celiac and gluten-sensitive folks often have other food allergies and intolerances including those to dairy, corn, sugar and fatty foods. If you are still not feeling better after following the above steps, talk to your doctor about if the elimination diet is right for you.
- Surround yourself with people who are willing to support you. Don’t allow anyone to bully you into eating gluten. It is not worth it!
- This is a complete life change. Be patient with yourself as you find new ways of navigating your gluten-free life. You are strong and can do this!
I apologize now for the quality of the video below. Our recorder wasn’t working but this has waited long enough to get put up on my site so here goes…