“Be your own advocate and be healthy! Nobody knows our bodies like we do. We have to take that knowledge, speak up when problems arise, and keep pushing for answers.
Several years ago, I felt like I was dying. I had no idea what was wrong with me and neither did the doctors. I had nausea that never ended, stomach pain that felt like I had been punched in the gut, reflux that woke me up every night – choking on the acid that crept up my throat, sleeping only 1-2 hours per night, hair loss, extreme lethargy, and weight loss that I couldn’t seem to control.
One doctor treated me for heartburn and reflux. Another doctor suggested that I start a low dose of depression medication; I’ve never had an issue with depression. I do have a history of Celiac disease in my family – a highly genetic disease where the ingestion of gluten causes damage to the small intestine. I requested to have a Tissue Transglutaminase Antibodies test done, a test that is known to be inaccurate. The doctor agreed, but the test came back negative. I asked if perhaps I should have an endoscopy done to see if I had small intestinal damage from Celiac. “Oh no, that is not needed.” said my doctor.
It was time to take my health into my own hands.
After three years of researching my symptoms, talking to family members diagnosed with Celiac disease, and documenting my symptoms, I decided that I needed to find a company who would perform a genetic test for me. Within a week, the lab sent my test results back. My lab results said “Highest Elevated Risk.” My doctor finally gave me a diagnosis – Celiac disease.
Almost two years after my diagnosis, I have gained almost 30lbs., my energy is back, my hair has thickened again, and I’m finally beginning to feel like myself. The biggest lesson I have learned is that I need to be my own advocate. I listened to my body, pushed for answers, and didn’t back down until I found what I was looking for.
Some day I hope researchers come up with a better way of testing for Celiac disease – a more fool-proof test. Celiac disease is highly genetic. If you have family members with Celiac disease, please get tested. Ask your mother, father, sisters, brothers, and children to get tested. Do the simple genetic test (a cheek swab) to see if it is even possible to have Celiac disease. If so, further invasive testing may be warranted.
Be your own advocate and be healthy!”
My favorite quote is by Dr. Maya Angelou “I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”
From Heidi Love, Admin: Please join the conversation. If you have questions or comments for Erin, inspiration for others, or you’d just like to let us know we aren’t writing alone, we hope you will comment below. You never know whom you might inspire or where it might lead.
For more about Erin, and to read her blog, please click here.
For More about Celiac Disease, please click here. Also Christina McGrath from verywell.com was kind enough to provide a Guide to Celiac disease. Thanks Christina and welcome to the tribe. https://www.verywellhealth.com/celiac-disease-4014748lso
For more about other Gutsy Goddesses please click here.
Thanks so much for featuring my story on your wonderful website. Also, thank you for helping to bring awareness to a hidden epidemic. I pray that awareness can be spread far and wide, and that diagnosis periods can be significantly shortened. Long periods of unnecessary suffering need to stop. Thanks again for everything!
Heartfelt thank Erin for your participation and courage. I truly believe by using our voices and speaking our truth we can connect in ways that will support others. We never know whom we might inspire or where it might lead. Thank you for bringing this important connection to light. And, best of luck with your blog. It already has such a positive and healing vibe!
Thank you Erin for sharing your experience. There was a time when doctors appeared as god’s. The good news is that we are responsible for our own health. Doctors are like the federal government, They are there to oversee our health, not to control us.
I am so happy you found your way back to good health, keep sharing your story.
I’ve been fortunate to have had physicians that were knowledgeable and willing to answer my questions. I’ve also gone with loved ones on physician visits to be their advocate. If you aren’t able to be your own advocate it helps to find someone you trust to accompany you. Like you Mary, I was happy to read that Erin found her way past numerous challenges and is returning to good health. Thanks for your comment.
Mary, thanks so very much for your kind words! I feel like myself again, thankfully. Yes, doctors do not know everything, so it is imperative that we continue to be advocates for ourselves and others we love (just as Heidi mentioned). Thank you for reading and taking the time to comment!
I hate how much you had to take this into your own hands 🙁 I had a similar situation as I was always told as a child that my constant leg pain was just because I was growing. It took years of physiotherapy and pestering the doctors until it was revealed I had Achilles Tendonopathy, an ankle condition. Loved this post, very powerful!
Wow, Jas! Like Erin’s blog I’ve been reading yours, and again, had no idea of your challenges. Your blog, like hers, is filled with positive thinking. It just shows that you never know what someone might be going through. Having leg pain as a child must be particularly difficult, especially when you want to run and/or play with others and you don’t know what’s wrong. I’m glad to read that you were able finally able to understand your condition. Have you been able to reduce the pain and/or heal? Thanks for sharing your story. I’m glad you found it powerful as did I and I hope you too are recovering.
Thanks so much for your kind and thoughtful comment, Jas. I’m so sorry that you also had years of suffering. It’s tough when pain is constant and there is no help. I’m so glad you found the answer you were looking for. Way to be an advocate for yourself. Thank you for sharing your story!
Thanks Erin for sharing our experience and letting everyone know of this very rare ailment, and Heidi for featuring this post. This will indeed raise awareness and help many to know and take proper steps whenever necessary.
So true Anindya. When we speak our truth and tell our stories it can help others, and also perhaps connect one another, around the world, with our humanness. Thank you again for sharing your thoughts.
Thanks so much for your thoughtful comment, Anindya. I hope this post does reach someone who is going through what I went through. I would love to find a way to shorten the symptomatic time people suffer through before they are given a diagnosis (4-years, on average, before a diagnosis is given). Thanks again for your kind words, and for taking the time to read!
Lovely to hear more about you Erin, sorry to hear about having Celiac disease. I can’t get over how many people are diagnosed with this disease. A few family members also have this. So glad to hear you are managing it. Great questions Heidi!
Thanks so much Suz. I’ve been reading more and more about this disease. I hope your family members are coping. I can’t speak for Erin, but if there is anything I can help with please let me know. Erin did send me a link to a pdf if there is anyone out there who might benefit.
Hi, Suz! Thanks so much for reading, and for your kind words. Celiac is not a rare condition, well, rare because so many don’t know they have it, but not so rare because 1 in 100 people are estimated to have Celiac disease. Did it take your family members awhile to receive a diagnosis? I’ve read that it takes, on average, 4-years to reach a diagnosis. Too long. I hope you and your family members are doing well. Thanks again, Suz, for your lovely comment.
Great advice! I often am frustrated when my doc downplays a concern I might have.Next time I’ll insist. Thanks for sharing this valuable life lesson.
I hope you do Phil! Doctors may not have all the answers we need at hand, yet it is so important to not feel they are downplaying what any of us are feeling. Thanks so much for your comment and—welcome to our community.
I love your comment, Phil. Yes! Be persistent with your doctor – after all, they are dealing with your life. Thanks so much for reading and taking the time to comment.
I love how you worded this Erin, “Be persistent…after all they are dealing with your life.”
Coeliac disease is such a common problem, you are right to hope for a better way to get it diagnosed!
Erin, you are a real inspiration!
As are you Rita! Thanks for the comment. I’m glad you were inspired by Erin’s post.
It sure is, Ritu. Here in the U.S., it is estimated that over 3 million people have Celiac, but 97% are unaware. The doctors in the U.S. have a lot to learn, but so do the people. Thank you so very much for your kind words; I appreciate you!
well done for staying strong and getting the tests done. I do think sometimes we know our own bodies best.
I agree with you on that Fiona. We may not always have all of the education or tools at our disposal for every malady, yet I believe that trusting our intuition is a crucial part of being our own advocate.
Absolutely, Fiona! Afterall, we are the ones who are living in our own bodies. 🙂 Advocating for ourselves is so important. Thanks so much for your comment and taking the time to read.
Thanks for sharing that Erin. Having no firm diagnosis is a terrible mental angst in itself. I know that one when my mother was in and out of hospitals for tests over the best part of 8 months before her diagnosis. Not this condition, but the process of not knowing what’s causing the issues probably wasn’t too different. Lovely to hear the journey is looking brighter now and your health is improving.
Great guest post to have Heidi!
Sorry to read about your mother’s challenges; I hope her diagnosis eased her path. It is so true that not knowing what is wrong makes your condition so much harder. Even the tests themselves can make you feel worse. If there are additional aspects of your mother’s journey you are willing to share please know, like Erin’s journey, it may inspire others. Either way, Gary, thank you for your comment and welcome to our community.
Gary, I always love hearing from you, and reading your thoughtful comments. Thank you so very much. I’m so sorry your mother suffered for so long. It’s not fun when you’re miserable and you don’t know how to make yourself feel better. Yes, I’m finally feeling like myself again, and I hope it is the same case for your mother. Thanks again!
I love the message. We are responsible for our own health, and we need to advocate for ourselves.
Thanks Cherie and welcome to our community. I’m glad you loved the message. Me too. We can’t always control diseases but it’s true we can be responsible for preventative wellness and doing our best to move towards solutions.
Thank you, Cherie! And, yes, you have it correct – being our own advocate is very important. Thanks for reading and taking the time to comment.
I sit here as someone who has had 2 failed colonoscopies in the last 10 days….and I keep telling them that the failed bowel prep is down to my very slow gut due to my connective tissue disorder….not that I didn’t take it properly. This is a fab post to highlight Coeliacs and gluten free diets – my tests for Coeliacs were negative but I have been gluten & lactose free for my Ehlers Danlos & GI probs for the last year and it has helped my gut. I firmly believe that we know our own bodies best, and the last few years since I have had more probs, I tend to find I know more about my condition than the different medics – I have been very lucky to have been received positively by most! It did take until I was 42 to be diagnosed formerly though!! Great article which I will def share in my chronic illness community x
Oh how difficult Claire. I’m sorry to hear of the challenges you are facing, not just over the years but also at this particular time. Like you, I do believe you are the one who truly knows your body and kudos to you for your strength and efforts to be healthy. It seems a huge step that you have finally been correctly diagnosed. I’m glad you found this post to be fabulous and more so that you will share it with your chronic illness community. Thanks so much and know that you are always welcome here. If you have more to share from your community that may help readers please do let us know. Best of luck Claire.
Oh goodness, Claire. Your first sentence had me cringing. Going through just one colonoscopy prep is difficult, but two or more in short time is torture. I think doctors need to find a more friendly way to explore the colon and large intestines. Also, I knew that you have suffered for some time as I read your blog often, but I didn’t know exactly what you suffered from. I’m so sorry it’s been such an on-going struggle for you. I do believe that you probably do know more about your disease than any doctor out there – especially when you’re the one going through the actual experience.
Thank you so very much for reading, for your kind comment, and for sharing a bit about your story. Also, thank you for sharing this post with your chronic illness community. All is much appreciated. x
Erin and I are friends in real life, and I knew she was gluten-free, but I didn’t know this story. Erin’s persistence, her clarity of thought, and commitment to doing what’s right inspires me all the time. I’ve seen Erin, through her blogs, and through her life choices, consider what the “experts” tell her and ask, “But is this right for ME?” I think that’s the question we should all be asking ourselves. We can and should listen to those who have knowledge, but we can’t stop there. Erin is a bright shining example of this. I’m SO glad you featured her today. She’s a gem.
Angela, welcome back. I’m so glad to hear from you again and I’m sure Erin will be too. Like Erin you are an inspiration, with your positive messages and the way you write about, and look at, life. I like your question: “Is it right for ME?” I think you both have a beautiful way of asking important questions, working to be healthy and happy, and then spreading those positive vibes and messages to others. I have a favorite saying, what you focus on expands—so thanks. I remember reading one of your posts recently with The Astonishing Kyle Jackson, where the question was: “Are you inspiring others.” If more of us can do this, more frequently…if I can do this more frequently, that’s a good thing.
Oh goodness, I don’t know what to say – I just adore both of you. Angela, I learn more through your thoughts – even about myself – every time I talk to you or read your amazing words. Your comment means everything to me and just made my entire day – no, weekend. I’m so lucky to have you as a friend. And, Heidi, you are so very inspiring. Like Angela, your writing and your blog empowers, educates, and inspires people to be their best. I’m so very happy I’ve had a chance to know you, and experience the good you bring to others. Thank you, Angela and Heidi, for being positive friends, mentors, and role models. And, thank you for your support – it is appreciated and coveted more than you know.
totally agree we have to be our own advocates especially in health care. We don’t have enough family doctors here so lots of people without which makes it hard to get testing done and Emergency often overloaded.
Welcome to our community Brenda. I love your Namaste Gravatar; my husband and I used those words in our marriage vows.
It’s hard enough when your Dr. can’t find a proper diagnosis; I can’t imagine not being able to see one, have tests, or having to wait for extended periods, yet this is true for many in the world. I too agree with the idea of being our own advocates.
Brenda, I’m so sorry to hear about the lack of doctors in your area. I can see where it would lead to less testing and more emergencies in your area. I hope that that changes for you in the very near future. It’s almost like you have to assert your advocacy just to see a doctor. Thanks so much for taking the time to read this post and share your comments.
Celiac disease is one of those things that people simply don’t take seriously. They assume someone is jumping on a “no-gluten” bandwagon because it’s trendy, and give no consideration to the fact that the wrong foods can actually be lethal to some. I’m so glad Erin took matters into her own hands and got the diagnosis she should have gotten in the first place.
We dealt with all kinds of self-advocacy issues when our youngest son was constantly in and out of hospitals because of complications from Trisomy 13. I remember one of our therapists really pushing us, saying, “If you are not your child’s strongest advocate, no one else will be. Don’t be afraid of the system.” It was great advice, and some that I’ve passed along to countless people.
Heartfelt thanks for sharing your thoughts and experiences Lynda. I have no doubt that you are your children’s strongest advocate. I too am glad that Erin finally got the diagnosis she needed and has seen incredible results after understanding what she is dealing with. Good advice for all.
Linda, your comment gave me chills. I love that your therapist urged you to be a strong advocate for your son – though, I’m sure you would have figured that out on your own. Things change when we are needed by our young children – advocacy is a must. My son started having digestion issues the year before I got my diagnosis, so I sprang into action. He received his diagnosis in less than a year. It broke my heart to see him in paint, so I pushed hard. We were both diagnosed at almost the same time. Thanks so much for sharing your own story.
Also, thank you for sharing your thoughts on gluten-free living. You are correct, ‘trendy’ foods often cause Celiac disease to be overlooked – this is dangerous. Ever little gluten protein causes damage when digested by someone with Celiac disease. I had a grandfather and uncle who died early due to Celiac disease. They had irreversible damage that ultimately cost them their lives (this is to your point of people not taking the disease seriously). Unfortunately, this is what it took for some people in my family to start getting tested. Since then, we’ve had five diagnoses.
Linda, thank you for taking the time to comment and share your thoughts and story.
I loved reading this Erin because the underlying message is so positive, which is the general aura from your blog. Finding the best from the worst is a gift to cherish x am so glad that you got your answers.
Orla, what a wonderful compliment – thank you so very much. Very wise words you share too: “Finding the best from the worst is a gift to cherish.” I do believe that everything happens for a reason, and some of the toughest challenges result in the greatest benefits. For me, it was being able to shorten my son’s diagnosis by years because of my experience. I’m so glad he didn’t have to suffer for long. Orla, thanks so much for reading and taking the time to comment. x
Erin, her words are true. I hope others will enter your blog and get the same positive energy that I felt through your photos and writing. I’m glad to read that you were able to shorten you son’s diagnosis, plus to be able to support his needs. I love the photos of your kids at the farm—precious!
Thank you, Heidi! You are so kind, and your comment means A LOT! Plus, your words in response to Orla are so sweet. I’m so very happy that you both sense a happiness or peace when you read my writing. My mother has said this to me a couple of times, but she was the only one – until now. So, the comments from you and Orla make my heart happy – thank you.
Fancy, I’ve been searching for the right words to express to Erin about how I felt invited into her blog and it felt healthy to be there. I even said to my husband it was like going to my favorite health food store in Vermont where I feel uplifted in some intriguing way. Now you’ve given me the words; it had a positive aura, it spreads healing energy doesn’t it? Thank you for your post.
Incredible. Yes, we have to be self-advocates. We know our bodies best. But I am sorry you had such a tough time.
Amy, welcome to our community! I’m grateful that you joined us, especially because of the inspiration you bring.
Thank you for your kind words, Amy! Yes, being sick was tough, but I wouldn’t trade it for the world. Because of my experience, I was able to get my son the same diagnosis in less than a year. I have also spoken with several family members who were symptomatic, and were able to get a diagnosis without getting too sick. Amy, thank you for reading and taking the time to comment!
I’ve found you here in the Gutsy Goddess blog. It really is gutsy to take on the medical systems and it’s protocols and be your own advocate. When you aren’t feeling well it takes So Much! energy to do all your own research and pushing for your own best interests. You and your family can thrive with your new path to health and wellness.
Kerry, Knowing your own role as an advocate in health makes your words and participation in this conversation all the more powerful. I fully agree with the notion that it takes such energy, and often at a time when your energy may not be high. Thank you for joining, for your advocacy, and for your wisdom.
Thank you, Kerry! I appreciate your kind words. Yes, it does take a lot of energy, and can be really frustrating when no answers are found. But, everything came together in the end. Never give up!
Erin, thank you for sharing your story. I became my own health advocate a year ago when doctors denied I claimed I had lyme disease. Which indeed I did and also a co infection. I am back to health and glad to hear you are too.
Janet, thank you for sharing your story too! Lyme’s disease can be such a debilitating thing. I’m so happy you’re feeling better! I had a coworker that had to retire early due to years of complications with Lyme’s. My family very much enjoys hiking, and I’m always very careful about tick checks, but those little buggers are really hard to find sometimes, especially when they get into hair. It’s a scary thing!
Hi Janet, It’s refreshing to see your comment on the blog and even more so to hear of your struggles and to see your recovery. Not everyone is able to “get back on the horse” yet it is so inspiring when someone tries and is successful. May your health and life continue to thrive. Thanks for joining the conversation.
Christina McGrath from verywell.com was kind enough to provide a Guide to Celiac Disease. Please check out her link above. Thanks for the good work you do Christina. Welcome to the tribe. We hope to hear more from you!
Sorry have only just seen this post. Erin, I hope you are still ok. I guess now it is just eating what you know you can and not eating gluten. But wow it should have been easier to be diagnosed. Heidi thanks for sharing Erins story.
Hi Marian, Thanks for finding the post and commenting. Whenever I see current posts she always looks the picture healthy. Erin—how are you?
Hi Marian! Thank you for your comment, and your concern. And, Heidi, I appreciate you thinking of me. As far as my health goes, I’m doing great! I feel normal (which I was afraid I may never feel again) 99% of the time, my weight is still very healthy, and I’m happy – mainly because I feel good all the time. 🙂 Marian, eating a strict gluten-free diet was the trick to healing, and yes, the U.S. has a long way to go as far as celiac diagnosis is concerned. I’ve heard that European countries are much more “on top of” screening for celiac disease. Here in the U.S., 73% of celiac cases go undiagnosed. We have a lot of work to do!
So great to hear from you Erin and to know your health is 99% strong! Whenever I read your blog I feel healthy just going there; I especially like the heart post and your art. Kudos again for having the courage, strength, and wisdom to become your own advocate for health.
Heidi, thanks so much for your kind comment! I’m so glad my blog is a happy place for you; I couldn’t ask for anything more. My art has really taken over my blog lately, and well, my life in general. But, I’m enjoying it immensely. Hope all is well with you! Anything new going on in your life?
Hi Erin, Glad you’re enjoying your art. It’s beautiful. I especially like your snowy egret and wild spirits.
New in my life? Thanks for asking. I’m so grateful to get a free couple of weeks in Provence. Long story but—oh la la. J’taime France. Plus I have an artist friend visiting in a few days and I feel so creative being with artists. I was also able to spend some time last year working with refugees in Greece with a group called Lighthouse Relief. The need is so great and I hope to be able to do more. Thanks for stopping by. I hope the art in your life continues to blossom and bring you joy!
You have such a kind heart, Heidi! I do hope our paths cross some day. I’d love to hear all about your journeys, and thank you for the well wishes! xx