Part 4: Your Voice!

It’s that time again (this is the last one)! I asked and you answered! In honor of May being Celiac Awareness Month, rather than me just share my experiences living with the disease… this year I want to hear from YOU!

Each week last month I asked a different question about living with celiac disease and the responses I got were incredible! It makes me so proud to be a part of such a strong community and really helps me believe that I’m not alone in this struggle!

If you missed the previous posts, be sure to read everyone’s responses to:

• “The Challenges Living with Celiac”
• “Tips for When You get Glutened”
• “Something positive that came out of my celiac diagnosis is …” 

The next (and last) topic of discussion was:

“The best advice for someone newly diagnosed with celiac is _______.”

I wrote a post on this a while ago that I called “Gluten Free… Now What?!”. 

Six years post-diagnosis I’ve learned a lot and sometimes I’ve learned the hard way. Knowing what I know now and everything I’ve experienced, I would say the best advice I could give someone newly diagnosed with celiac is to relax, learn everything you can on cross-contamination and stay positive!

Now on to your responses!

(I’m keeping all answers anonymous to respect everyone’s privacy)

• I was diagnosed several years ago and didn’t know anyone else who had celiac disease and it all seemed so overwhelming and taxing. Once I sat down and got my thoughts together I realized that I was pretty much eating gluten free most of the time anyway because I was doing it unconsciously. So my advice would be that it will seem overwhelming but it is totally doable. And labels are so much better than they used to be. And it’s ok to be sad, to mourn the loss of those gluten filled foods. It can be a grieving process. But know there are alternatives and you will feel so much better and be eating healthier. Watch out for the overly processed, nutrient lacking, gluten free foods. Especially if you battle type 1 diabetes. Those processes gluten free foods have a lot of carbs in them, sometimes more than their gluten free counterparts and probably because they are now made with rice flour etc. learn to read your labels and listen to your body. You can be gluten free and feel good and be happy.
• I was diagnosed last August, so I’m still learning .
• Buy a new toaster. Don’t “google” too much. Focus on the foods you CAN eat. Find your support system. Count your blessings and be so grateful your “disease” is treated with healthy food.
• … is relax. Its way more easy than it sounds. We can eat delicious food. Really. Learn all the rules and don’t break them. It’s not worth it. Search for bloggers and people with gluten free diet. Breath. You’ll be just fine. 😉
• Most gas stations have string cheese if you need an emergency dinner.
• Never trust someone that something is gluten free of they don’t know what celiac is. When I was first diagnosed I was sick a lot going out and going to friends and parties people assumed it was a fad or diet choice. Though many are aware of what celiac is some still don’t completely understand. I always carry nuts and gluten free snacks just in case. And I would also tell them this isn’t the end of the world good still tastes good intact I think a lot of it is better
• I was at first it’s a little easier now getting use to reading labels but basically eating lots of veggies went through a period early on where I missed certain foods and sort of was in denial but actually I feel better than I ever have pain free belly is good 😊
• It’s overwhelming but try to focus on being grateful that celiac is a disease that can be managed with food instead of medicine.
• Cross contamination at restaurants is REAL!! even if u think u are ordering GF.
• Be your kids biggest ally. Advocate for them so they can learn to advocate for themselves…this will be a lifelong battle
• Educate yourself! I read as much as I could about my diagnosis. I found that not only did I need to worry about gluten in my food, I needed to beware of it in my medications as well. Many OTC and prescription medications contain gluten as a filler. Also, items such as shampoo, deodorant, and make up can contain gluten as well. I was thankful that there were so many ways to find useful information for a situation that seemed so overwhelming at the time, but knowledge is power. The more you know, the better you can advocate for yourself!
• To this day I still research things about celiac/gluten. The best way to take care of yourself is to become knowledgeable do your research! Gluten is EVERYWHERE and the best way to take care of yourself is to learn as much as you can. Its an ongoing process
• Don’t be tempted to cheat on the diet!
• Do not search the internet-you will find conflicting information or people’s personal comments that may not be accurate. Ask your physician for trusted sites. If not, it will add to the craziness of navigating this new way of life!
• What would I tell a newly diagnosed celiac? Your doctor’s ability to help you probably ended with the diagnosis, unless he/she or a family member has celiac. It is hard enough to get that diagnosis in the first place. You are one of the lucky ones if you were diagnosed in under two or three years. Learn to read labels, subscribe to a site like this one, buy books, educate yourself, and get into the kitchen. There are tons of recipes online. There are lots of companies making gluten free products. My personal favorite is King Arthur. Their mixes are fabulous when you don’t have the time or the ingredients to bake something at the last minute. Glutino is also a great company. Read reviews of products at Amazon. If something is good or bad, they will tell you! Be prepared to spend more money, because gluten free products cost more. Make your own food. Meat, vegetables, fish, and fruits are naturally gluten free. Processed food often is not, and it doesn’t taste as good as homemade. It might even be worth the effort to find a gluten free support group in your area. Educating yourself is extremely important, and a top priority. A support group or an online site can tell you what you need to know. In some ways, being gluten free is like keeping kosher must be! You may need your own utensils, condiments, pots and pans, small appliances etc. When I was living with my daughter, I had to replace my waffle iron because she used it to make regular waffles. Unless everyone is gluten free, you need a separate toaster, Most importantly, it’s okay to be grumpy and feel sorry for yourself because your life is changing. It’s a lot to take in and none of us learned everything we know overnight. What isn’t okay is giving up and eating what you can’t eat. It isn’t okay to cheat because it will affect you and the more you cheat, the more damage there is to your intestines. The way I look at it is that I am serving a life sentence, I am not on a diet. Diets end, celiac doesn’t. I probably eat more healthily than people who don’t have celiac. I make better food for my family than if I relied on frozen foods and takeout. It is a lot to get used to, but you can do it. It takes time, patience, and effort, but you can do it, and you’re not alone. We are always here for you. There are so many resources and products that weren’t available thirty five years ago. That was truly the dark ages! Read the archives on this site. There are lists of different products that you can and can’t eat. I consult them frequently, and find them very helpful.
• Learn about cross contamination. In the beginning I hadn’t even heard of this & my whole first year I kept getting sick & wasn’t understanding why. It’s also the biggest thing friend’s & family members need to be educated on. And food service people as well.
• Relax! It’s not a death sentence, it’s a life sentence. It’s an adventure. You will learn a lot about food, and different ways of making it. There are so many amazing products and flours, and there is always something new happening. A lot of those products and flours are expensive, so if you can, make your own. Gluten free products tend to be higher in carbs than their gluten filled counterparts, so if you find something delicious, eat it in moderation. Find a support group locally or online. People that have been living with Celiac Disease are your best resources. Subscribe to web sites like this one. You will get great advice, like what you can and can’t eat, and what to be wary of. Cross-contamination is something I can’t stress enough. Even those of us who are vigilant can sometimes be exposed. Like the time I was at Red Robin happily eating a burger and thinking how amazing the bun was. It tasted just like I imagined a regular bun would have. It has been 30 plus years since I have knowingly eaten gluten. Fortunately I only had one bite. The server came over and apologized that they had given me a regular bun, and whisked it away. They replaced it, but it shocked me that a place I had eaten at for ten years, was now a place I had to be wary of. Knowing what to do when you get glutened is important. Scroll back and find the post on that. I rely on Alka Seltzer Gold and lots of water, and hiding out from my family, lest they be caught in the mood swings and temper flare ups that accompany the diarrhea and nausea. Gluten free store products can be just as good as the name brands, and in some cases they are better, Aldi and Trader Joe’s have great gluten free products that are much less expensive, as does Wegmans, where I shop every week. Their products are marked with a G to denote if something is gluten free. They also mark lactose free products. I am lucky to live near Baltimore, and have family members near Philly and D.C. All of these cities have gluten free restaurants, bakeries and cafes. In a pinch, many vegan and vegetarian places have gluten free options, or are gluten free. Amazon is a great last resort, but they tend to be very high on grocery and gluten free pricing. Whether I buy something from them or not, I check the reviews. They are honest and unfiltered, and I trust them. We have a Chinese restaurant near our house that has. gluten free options, and I have had good luck with them. Five Guys and Outback take it seriously too. They are the only chain restaurants I trust, although I will buy the specialty coffees at McDonalds. I used to go to Sonics for coffee, when my husband and son went there for dinner or a late lunch, but the last few times we went, we all had massive diarrhea. How can coffee give someone diarrhea?! I suspect the problem there is cleanliness or lack thereof, but the point is the same. If some place makes you sick, for whatever reason don’t go back again. Let the manager know why you aren’t coming back, and the ball is in their court.
• First, be thankful that you finally know what is causing your symptoms and now you can be in control and eliminate them. Don’t think about all the things you can’t have, explore the new options available to you. At first I resisted buying the expensive flours, etc. as a matter of principle. But, that made me feel deprived. If you can manage it, buy them and continue to make your treats, etc. but gluten free. You will be surprised at how good they can taste. Don’t fall prey to the pre-packaged gluten free food items on grocer’s shelves that are outrageously expensive and contain way too many ingredients (that are unrecognizable and unnecessary). Who needs bread with a 6 month shelf like? Make it yourself. Not only will it taste better, it will be better for you. Call restaurants before you go and quiz them on their real ability to be gluten free. When you find one that works for you, go back. There is an expression about life that goes something like this “You can’t change the course of the wind, but you can adjust the sails.” Most of all – DON’T be influenced by well meaning folks who say things like “have a bite, it won’t hurt you.” You CANNOT have a bite of gluten containing food, it will hurt you.
  I don’t know if it is ok for me to recommend baking books here, but I have found that Annalise Roberts books are perfect for me. Also, the King Arthur Flour website has lots of gluten free recipes (the flourless chocolate cake is addicting). Best of luck.
• You will not starve! There are plenty of gluten free foods.
• Live life, don’t let it get you down. Gluten free doesn’t have to ruin your social life, just learn to do it differently.
• I’ve been diagnosed since 2002. I worked with a Doctor of Nutrition to help me understand the nuances of Celiac. When dining out DO NOT LET ANYONE MAKE YOU FEEL BAD for asking questions (sorry for the yell but it’s a sore spot). I always want to know if my server knows and understands about Celiac and if they dedicated fryers and prep areas. Cross contamination stinks!!!!
• It sometimes takes longer than a few weeks of being gluten free to feel better. Give it some time.
• It’s pretty much the hardest thing you’ll do but life doesn’t end. Don’t let others dictate how you should react. No one else, even others with celiac, experiences the exact same things you do. Be positive some days if you want to be and feel sorry for yourself others. I happened to be in counseling at the time of diagnosis and my counselor very much identified it as a grieving process.
• That it’s a bit like a grieving process. It comes with ups and some downs but hopefully more ups though than downs! Especially as you slowly start feeling better. And of course that It affects more than just the physical (stomach) such as anxiety, etc.
• It’s hard but you can get through this! Thank goodness that more people are becoming more aware of what Celiac is so there is more yummy options out there! And don’t be afraid to ask questions about anything when you go out to eat.
• Find a good naturopath that knows about autoimmune.
• Be your own advocate and don’t be afraid to speak up. A lot of people will say a lot of dumb things, but always remember, it’s your body and you are in complete control of your own health. It’s the hardest transition to make but it does get easier. I promise. You’ve got this. Here’s to a healthier you.
• Eat whole, natural foods and skip the processed foods until your gut heals.
• Have your bone density tested.
• Being your own advocate (especially with doctors!) is one of the hardest and most important and difficult parts.
• Learn about cross contamination, what you need to replace in your kitchen, & buy a Nima Sensor!!!
• Don’t panic! Celiac is very overwhelming to deal with at first. It gets easier everyday and in no time staying gluten free becomes habit!
• I don’t have Celiac, but I’m crazy reactive with rosacea flaring and terrible abdominal pain. My advice is eat out less. Cook more. Protect yourself.
• Read labels always!
• As someone newly diagnosed myself, I’d tell anyone in my shoes to listen to your body. It takes some time to heal from the havoc that this disease has been wreaking, but be patient. In time, you start to realize the symptoms you have been going through are not normal and you begin to feel better than you ever thought you could.
• My best advice is.. make other coeliac friends whether that be in person or online. I get far more help and support from my coeliac friends than I do my doctor!
• Educate yourself and others! Also remember, gluten hides in items such as shampoo, make up, and medication.
• Read every ingredient of everything that you put in your mouth. Gluten pops up in unexpected places.
• Wash your hands after shaking hands with someone at a buffet. I’m sure I got gluten poisoning at Christmas by shaking hands with someone who’d eaten a breadstick and then eating my own food without cleaning my hands first.
• Don’t be afraid to ask for allergy information, and equally don’t be afraid to refuse to eat somewhere if you’re not entirely comfortable. Protect yourself.
• It gets better!

There are so many great tips here and words of wisdom from people living with celiac disease. As we round out celiac awareness month, I want to thank everyone that participated in these posts and shared insight on living with this disease!