Part 3: Your Voice!

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…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!
• The best thing for me is that I know if not eating something makes me feel better, I won’t eat it. I know I am in charge, and not my stomach. Since going gluten free, I’ve had to give up dairy. That was harder, but not impossible. When something doesn’t make you feel well, why would you want to eat it? I have been listening to my body more and lately there have been a few foods that I’ve always eaten, that no longer appeal to me, and in fact, the idea of eating them was unappetizing. I’m not sure what that’s about, but I no longer use pickles, olives, or anything with a lot of vinegar. I have had to make my own mayo and things, which is fine, and I enjoy it. If you know you have to make it, you tend to eat smaller portions, so double win! I have recently made it through a nearly two year battle with gastroparesis, which entails eating five very small, limited meals a day, and cutting way back on fiber, and even having to eliminate certain foods. It is finally showing major signs of improvement. My next endoscopy should confirm it. I am one of the lucky ones. This has all combined to make me more aware of what I eat, and to make more informed and thoughtful choices. Having gone gluten free made it easier to go dairy free and to be realistic about the gastroparesis. I knew that would be a short term sentence compared to celiac disease and casein intolerance. It has all made me realize that nothing is impossible, and that I am strong and determined enough to overcome some major challenges. I don’t consider being gluten free a negative, but a positive.
• Of course, feeling better is the #1 reason. But, I have met interesting people and received helpful information from the people and nutritionist at the Celiac Support group I attend. After eating pretty much what I wanted for 65 years, it was difficult to change my eating habits. But, having Celiac has opened the door to new recipes, grains, and in general a wider variety of foods. I think the most important thing I have learned is how our microbiome affects our health. Trying to learn as much about this as possible has influenced the way I eat and the attention I pay to the effect, even gluten free foods have on my intestines, which results in how I feel.
• Peace. Of. Mind! For years I wrestled with so much pain without understanding why. Every time the doctors thought it was one thing, treated me, and it failed, I became more and more disheartened. By the time I got diagnosed with Celiacs I was set that it would be my final visit to the doctor and I would just live with the unknown. As hard as living with Celiac is, I am forever thankful to finally know what harms me and how to take care of myself. I don’t have to live with so much fear anymore and nothing can replace that peace of mind.
• Getting glutened when one has CD is not just about feeling miserable for a day, it is a cascading effect of new autoimmune diseases. Celiacs add a new autoimmune illness to the mix every so often. Having a diagnosis alterts a celiac to what we have to do to try to prevent future problems.
• Just being aware of what I eat. And of course feeling better.
• I definitely like the way I eat now.
• Besides feeling better (and feeling like I’m not going crazy) – I’m hoping that when I share my story/symptoms with family/friends – that it may help someone else out. (I’m also happy that my family has been getting screened now too!)
• Being more thoughtful about my food choices – so much more than just getting rid of gluten!!
• Eating so much healthier and having so much fun recreating things we liked but can’t get anymore.
• It made my whole family healthier and more aware of what they put in their mouth!
• I stopped feeling sick all of the time once I knew what the problem was and took measures to make my life better.
• I have tried new amazing restaurants that are of course extremely knowledgeable about gluten free. Im not sure if I would have found these places otherwise.
• I’ve tried new foods I never thought I would. I actually liked a few of them too….lol! Quinoa is one example. Quite honestly, I had not even heard of it until I started researching safe foods for Celiac’s to eat. If I was never diagnosised, I may never have branched out.
• Totally transformed my life, from healthier, more whole foods to slowly trading chemical household cleaners to healthier options that I can make with essential oils. Also, it revitalized my yoga practice that I had all but given up on. I still fall away sometimes, but my body reminds me how healing movement is.
• Being aware of how to eat healthier. I’ve always been a great cook, but never paid too much attention to choosing the healthiest options. I’m more thoughtful of what goes into my body now.
• I wasn’t properly diagnosed until age 40, after being sick since childhood. I was pretty angry that I had to suffer so long & incur so much damage to my body BUT at least my son was then diagnosed, just before his 3rd birthday so he doesn’t have to suffer like I did.
• My son and brother were diagnosed within a year of me. Largely due to my diagnosis cluing the doctors in.
• Weight loss.
• Just before I was diagnosed, I was misdiagnosed and put on totally inappropriate medication which caused anxiety and panic attacks. That experience was horrendous but I now have a much better understanding of and sympathy for others suffering from those things.
• I was only recently diagnosed with CD about 2 months ago. Prior to the diagnosis, I had been placed on an elimination diet and I had been adhering to that very strictly. Within a month of being diagnosed, it occurred to me that I no longer had ANY pain in my lower back or knees! Apparently the wheat that used to be a mainstay in my diet was the source of the inflammation! So, while I am still new to this lifestyle and I am still processing the emotional part of living with CD, I am so grateful to not be living with the inflammation that I used to have!

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 next week!