It’s that time again! 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?!”. 

Five 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.

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

It’s that time again! 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” here! And “Tips for when you get glutened” here! 

The next topic of discussion was:

“Something positive that came out of my celiac diagnosis is _____ .”

Getting diagnosed with an autoimmune disease is not something you typically would be grateful for. However, I believe strongly in the power of positivity and taking a bad situation and finding the good in it. I wrote a post a while ago where I shared 10 reasons I’m grateful for celiac. You can read my thoughts here!

Now on to your responses!

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

• My overall mental health, and my body doesn’t ache anymore and I truly feel better inside and out.
• Definitely a healthy diet. I consider what I put into my body so much more!
• I sleep better and have lots more energy.
• I am healthier than I’ve ever been, eat a really balanced diet, and feel more sociable as I can be included more readily in food-related outings. I’d love to say I’m feeling 100%, and I’m certainly no longer ill, but I feel because I was born with it and undiagnosed for so long, my digestive system is still super sensitive. My hair has thinned over the years, which I am told is because of nutritional deficiency, and I am still prone to swelling and cramps when I am totally gluten free. I sticking to the diet for 14 years but I’m not there yet! Sorry there is still some negativity from me!
• So I’m going to be honest. I didn’t think having my diagnosis would have changed my life as much as it had. Prior to my diagnosis, I was always sick. Whether it was a migraine, stomach issues, or just not feeling right. Because of all of this, I was almost always miserable. I had mood swings, joint pain and I just was not happy overall. After my diagnosis and being consistently gluten free, I noticed a change in my personality. Nothing major, it was just that I was feeling healthy and good which made me happier. It really was the best thing to happen to me. Yes, having to be gluten free and missing out on some of your favorite foods really sucks. But I would never trade a batch of grandma’s brownies for my overall health and happiness. I hope to see improvements for a long time! It’s only been about three years for me. Thanks for making me think about this! I don’t think I realized all of the positivity that came out of my diagnosis. It’s nice to have focused on that for this post!
• A diagnosis takes you out of the limbo of pain and suffering and wondering what is going on, and into a place of awareness. I would rather have answers and be able to address an issue than just have to keep suffering and trying everything and anything to feel well again. For so many of us, it’s not just the Celiac Disease, and we don’t feel better until all the root causes are uncovered. It’s frustrating to hear “you’ll feel so much better in a few months after cutting out gluten and healing”, and then still struggle because of additional autoimmune diseases that are caused by Celiac, the effects of living undiagnosed for years, and the havoc it wreaks on the body. I’m still trying to find the right doctors and plan for wellness that helps me get back to a place where I can thrive. It gets better with each health mystery that gets solved, and I am thankful for the medical journals, research, doctors and people in my life that listen and care, and the increased awareness that there is for food allergies and autoimmune diseases. Knowledge is power, and education is how we empower each other and create a climate of understanding.
• My diagnosis did change the way I eat obviously, but it changed the way I grocery shop, the way I cook, the way I feel, the way I sleep, the way my brain even works! My diagnosis came later in life when I was 43. I don’t like bringing attention to my disease, especially when out with a group because there is always someone who has a few comments to make or does the  eye roll when I say I’m gluten free.
• Because of my diagnosis of celiac disease, I have learned so much more about my body and why I have to take better care of it. I make informed decisions about my overall health not just nutritionally but concerning physical fitness, sleep, mental health and also my spirituality. I will always miss the spontaneity of being free to eat anything and anywhere, but I feel blessed that I have a chance to have my next 50 years be healthier because of celiac disease.
• Because of my diagnosis, my daughter was diagnosed. She was not growing and no signs of puberty at 15, with all the social issues that go with that . Soon as I diagnosed, I did research and realized that her delayed growth was a symptom. We took her off Gluten and she began to develop in 3 months. It was amazing. Today she is normal in all ways.
• Something positive that came out of my celiac diagnosis was learning to take care of my body and to promote awareness to others who don’t know much about it! And to receive amazing support from family and friends!!
• something positive that came out of my celiac diagnosis was meeting other girls my age that also have celiacs and being able to automatically connect and become close friends. i also feel i have grown to take care of my body and really focus on what i eat to keep myself healthy.
• Because of my diagnosis my mom and brother were diagnosed, I am no longer depressed, my hair is not falling out, and I feel like myself. I always told people that I didn’t feel like myself, that I was somehow possessed or felt just… off. It’s a strange thing to try to describe, but now I know what it means to feel normal & whole, and that is the best part of all.
• This has been the most challenging time in my life – it has impacted every area of my life. One positive thing is learning about what is actually in every single bite of food I put into my mouth.
• Well, since starting this account I’ve met a great community of other celiacs and gluten sensitive folk who share their safe places and recipes with one another! It’s really quite an amazing thing
• I have two gorgeous little girls. I’m off all prescription drugs and live a way better life than I did before!
• Before my celiac diagnosis I struggled with infertility and miscarriages. I now have a miracle baby that I never thought I would have. Thanks to learning about my celiac and healing my body.
• I used to suffer from anxiety and depression. Ever since going gluten free and getting my health back on track, that all went away!
• Before my diagnosis I was on sleeping pills and still never felt rested. Now I sleep through the night practically every night without any medication.
• I was tested for and learned I already had osteoporosis At 47. Therefore, I was able to start getting treatment to avoid serious breaks.
• After my diagnosis and sharing my experience with others, 3 people I know then got diagnosed. Without my diagnosis I think they all would still be struggling with their health.
• I listen more to what my body is trying to tell me. If I eat something that disagrees with me, I don’t eat it again. Not being able to eat gluten has also made it easier not to ingest other things that I can’t have. Starches and most grains are hard on my system so I don’t eat them very often anymore.
• The biggest positive for me is that as soon as I was diagnosed (& I wasn’t properly diagnosed until age 40) I knew what was wrong with my son. He’d had digestive issues since infanthood & had stopped growing & doctors continued to brush us off. Thankfully my son won’t have to suffer & endure the same fate I did.
• I was diagnosed with Celiac at 18, a few months before leaving home for college. After living with the pain and discomfort of Celiac for almost two years at that point, I was honestly just not in a good place. I felt sick all the time, so I ate whatever I wanted to try and feel better (mostly ice cream, if we’re being honest). I was gaining weight and losing the motivation to fix my issues. I was always in a bad mood, and had lost friends, my boyfriend, and myself along the way. I didn’t even care about going to college anymore.
• Finding out I had Celiac forced me to focus on myself without guilt. I found a passion for cooking gluten free meals, and spent the last few months before college eating well and enjoying this new hobby. When I left for school, I was in a much better place. I lost weight and was happy with my body, I’d found motivation again to improve my circumstances, and I’d had the opportunity to listen to myself and love myself. It’s hard to explain, but there is something so therapeutic about just knowing yourself, and I think that Celiac facilitated my own journey of self-love. It’s an annoying disease, but in the end I’m actually glad that I have it. I’m not me without Celiac!

After reading through all your responses, it made me realize that we really do have a lot to be grateful for! Thank you again to everyone who opened up (I know it can be scary) and shared your thoughts!

Stay tuned for part 4 later this month!