Today, I have the honor of sharing a guest post from Debi Smith. I met Debi months ago in the gluten-free blogosphere. She’s one of the warmest, most positive spirits around. She always leaving an uplifting comment here on gfe or on my gfe Facebook page or personal page. I am always so happy to see her. I’ve been inspired by Debi’s story of self-healing and have read some of it on her blog, Hunter’s Lyonesse, but asked her to share more here as a guest post. Today she does. I think you’ll be as moved by her story as I am. She calls it her journey back to healthy living. Just looking at her photo below, you can sense Debi’s amazing spirit, as well as see her current good health.
Here’s a little more about Debi in her own words, and then her guest post below. I send my deepest, heartfelt thanks to Debi for sharing her story with us all.
I have a B.A. in Psychology and spent 12 1/2 years working in the mental health field. I enjoyed my years studying the martial arts (Aikido and Iaijutsu) and look forward to having the time to be able to do so again. I have used aromatherapy for the last 6 1/2 years both for health purposes and for making my own personal care products and soap. I believe in alternative medicine and the benefits it brings to the quality of our lives as patients. In what little free time I have, I enjoy spending time with my husband (a rare thing these days), scrapbooking, writing, reading, cross-stitch, jewelry making, and playing amateur photographer. I have found the keys to maintaining my health other is by maintaining a whole foods and gluten-free diet and keeping my stress down by focusing on positives, accepting change as it comes along, and leaving the grind of a career in my wake.
Shirley asked me a few months ago to write my story as a guest post for her blog. This was after sharing just a bit of my journey back to healthy living in a comment on her Facebook wall. I was very touched that she would ask little ol’ me to do a guest post. So touched there were tears. The part of me that felt compelled to start my blog, Hunter’s Lyonesse, jumped on it and told her, “Yes!” The writer in me keeps coming back to this, re-writing over and over again. There was also a move to Ohio and starting a new job that got in the way, too.
Two years ago I wouldn’t have dreamed of working in retail, let alone be physically able to do it. Here I am in the full throes of working the holiday season in retail. And yes, I survived the dreaded Black Friday. Even as a shopper, I avoided Black Friday shopping. I love a good deal and saving money, but not enough to get up while it’s still dark out to fight over Door Buster Deals.
I was diagnosed with Hypothyroidism in January 2009, after starting to feel extreme fatigue two years ago. My arms felt like they lifted and carried a load of bricks when all I did was fold a t-shirt. My entire Christmas vacation spent doing nothing did not lift the fatigue at all. There were headaches unlike the migraines that plagued me my whole life and the sinus headaches that like to remind me about my acquired allergy to Kentucky. Add in some vertigo, heart palpitations, difficulty breathing, losing the outer third of my eyebrows, losing more hair than usual, IBS flare ups, allergies not responding to medication, and being colder than usual all the time. I had violent mood swings – screaming at my husband over nothing, screaming at customer service people over the phone, and struggled to resist the deep desire to strangle people when I would normally just ignore them. Along with my lifelong migraines, I also had low blood pressure and body temperature, but all the doctors and nurses told me it was “normal” and not to worry.
I would not have lasted on the floor at where I work now with all those symptoms.
The initial blood work that resulted in my diagnosis also found some slight anemia and low iron levels. My doctor gave me a prescription for Synthroid and told me to take an iron supplement. Friends and family with thyroid problems said I would feel better in 4 to 6 weeks after starting Synthroid. I stayed optimistic knowing that medications can take that long to reach therapeutic levels, but after 6 weeks I was feeling worse. I was constantly assessing myself and my energy levels from the time I woke up until I went to bed. I was climbing into bed as soon as I got home from work and stayed there until I fixed dinner, which was usually something frozen from a box (or bag) because I couldn’t stand to be on my feet. Standing or walking longer than 5 minutes caused them to feel like I was on them all day long, shopping until I dropped. I avoided socializing because I felt like crap all the time and I lacked the energy or patience to deal with friends not understanding why I was so sick. The violent mood swings didn’t help with my lack of patience either.
A good friend of mine, who is diagnosed with Lupus, introduced me to The Spoon Theory by Christine Miserandino (Board of Directors member of the Lupus Alliance of America, writer, blogger, speaker, and patient advocate). It is the story of how she used spoons to educate her friend about a day in her life living with lupus. She gave her friend a handful of spoons to represent the limitations she lives with throughout the day. You wake up with a set amount to get through the day and you are always evaluating how many you have left and what you still need to do. Sometimes getting out of bed first thing costs a spoon. Then, taking a shower, getting dressed, making breakfast, driving to work, etc. I was in tears by the time I finished reading. That is me, I thought. I was constantly looking for an extra spoon just to try to make it through the day.
The numbers from my blood work at my first 6 week follow up showed numbers in the normal range for my thyroid. I felt anything but normal. I left thinking, Is THIS what my life will be reduced to? Being in bed all day when I’m not at work?
I went through several months of visits to specialists for more tests. I wanted to know why my ANA (antinuclear antibodies – the proteins in our white blood cells that fight foreign invaders) levels continued to be elevated. They were pretty high 12 years ago when my previous doctor tested them due to daily migraines I was having at the time. The tests for Lupus back then were all negative. The Rheumatologist felt the ANAs would test positive for Hashimoto’s Disease, an autoimmune disorder where the ANAs attack the thyroid. If you knew my entire medical history, the following wouldn’t come as a surprise (my former Podiatrist didn’t lovingly call me The Freak for nothing). I was negative for Hashimoto’s, but positive for Sjögren’s Syndrome, an autoimmune disorder where the ANAs attack the moisture producing glands in the body. The Rheumatologist wasn’t worried since I wasn’t presenting with the 2 main symptoms, dry mouth and dry, gritty eyes. After looking it up online, I discovered fatigue is also a symptom, as well as digestive problems. I wanted to learn more, but I could only deal with one thing at a time with the limited energy I had. At least I had my answer.
I went to see my Naturopath in April of 2009, after my last test, an MRI of my brain, only showed the usual spotting for people who get regular headaches and my last blood work showed Vitamin D levels in the single digits, continued low iron levels and still normal TSH (what the pituitary gland produces to stimulate the thyroid to produce T4 and T3) and T4 (the amount ofthyroxine in the blood that the thyroid produces) levels. I explained everything in detail. My liver was hot, which said to him something was making it not work right. I never once connected that my symptoms worsened after starting the Synthroid and could have beat myself up over missing that with my experience with medications – I was certified by the Kentucky Board of Nursing in Medication Administration for 10 years. We had a discussion of natural supplements to help manage my thyroid and he showed me a kinesiology (the science of human movement) trick to use when choosing a supplement.
I tried several natural supplements before I found the one that really worked for me. I also discovered that any supplement with “thyroid” in it made me feel like Synthroid within hours after taking it. While I felt better overall, I wasn’t 100%. I still thought something was missing. An idea popped in my head one day that God intended our food to be exactly what we needed. It was one of those common sense ideas. People hundreds of years ago lived just fine off the land. There was no such thing as refined or processed foods. I made a mental note to research it more later on because we were flying out to Los Angeles to spend Thanksgiving with my best friend and her family. We got together with some friends from high school. Okay, friends from marching band in high school. That’s where I met my best friend. During the course of multiple conversations, I found out one of our friends also has hypothyroidism. This friend mentioned that Jillian Michaels had a new book out and that Jillian was also diagnosed with hypothyroidism.
I found the book, Master Your Metabolism, after returning home and began reading. I was struck by the detail of how food talks to our body, aka nutrigenomics. I learned my common sense thought was right about the food we were meant to eat that grows from the ground or came from a mother really helps our bodies function optimally. I learned how the processed foods we are used to, disrupt our bodily functions and create the multitude of health problems that plague us today. I was moved by Jillian’s sharing of her personal experience with undiagnosed hypothyroidism. She understood how I was feeling. I began making changes before I was done reading. I started reducing the amount of refined and processed foods I ate. Then I eventually cut out refined foods. The difficult days of cravings I got through by picturing what the food would do to my body if I caved. After a while without refined sugar, I no longer craved sugary foods. The sections in the book on environmental toxins we are exposed to in our daily living reminded me that I really needed to get back to aromatherapy and making my own cleaners and personal care products again.
I put my focus on this change with being healthy, not with losing weight. I shopped on the outskirts of the grocery store with my focus being on fruits and vegetables. I ate brown rice, quinoa, sprouted grain bread, sprouted grain tortillas, and the occasional whole wheat pasta. I explored vegetables I didn’t like before – beets, mushrooms, and peas. I eat them all now. Well, the peas have to be fresh and cooked just right. By the end of Winter, I realized I made it through with no colds, no flu, and no infections. This was unheard of for me since moving to Kentucky 13 years ago and especially since I did not get a flu shot.
In January of this year, another good friend sent me an article written by Dr. Mark Hyman on the role gluten plays in diseases like Hypothyroidism, Lupus, Autism, Fibromyalgia, and many others. It had me intrigued. I was digging up everything I could on the correlation and bought Dr. Hyman’s book, Ultrametabolism. By the end of February, I was ready to get rid of gluten on a trial run. It was a little easier for me to do than most people when they find they have to go gluten-free since I was focusing on whole foods that are already naturally gluten-free. I made mostly everything from scratch with the exception of bread, pasta, and tortillas. I left the bread alone and only used sprouted corn tortillas and whole grains like brown rice and quinoa.
I was confident I would be okay when I added gluten back in. It was a Friday morning. I toasted a piece of sprouted grain bread to go with my breakfast. That was the only gluten I had all day. I felt fine when I went to bed. Waking up the next morning was a different story.
I could not move. I slept more than 8 hours and I felt like I just went to bed. I lied there for at least 15 minutes willing my body to move. It scared me a bit since I did not have this problem in over a year. I knew it was the gluten. I dragged the rest of the day full of unmotivated fatigue.
I admit I was angry and wanted to scream, “THIS SUCKS!” at the top of my lungs. The things I formerly chose not to eat like pizza, hamburgers, etc. were now things I really couldn’t eat anymore. There is a difference between not eating something because you choose not to and not eating something because you can’t or it will make you sick. Eating whole foods was easy since I chose it. Eating whole foods gluten-free was getting depressing. I couldn’t watch a Papa John’s commercial anymore thinking, “I don’t want that.” It was now, “I can’t have that. No fair!” Deep down, I knew it was my body telling me what it wanted. I had one of those “A-ha!” moments after a couple of weeks of my self-pity party. I realized the vertigo, heart palpitations, violent mood swings, and headaches were gone. Even the migraines were fewer and farther between. I had more energy. I felt better, healthier.
My blood pressure and temperature were normal at my last doctor’s visit in September of this year. I don’t ever remember having a “normal” blood pressure temperature except when I’d get sick, which of course doctors would write off because it was “normal.” When he came in to meet with me, he informed me my iron, TSH, and T4 levels were all in the normal range, but my Vitamin D level was still low. I left my doctor that day feeling euphoric as I texted my cousin, a doctor. Sure my Vitamin D is still low, but I still had a major victory. My health.
The hope and faith I had to dig for those days I was wallowing in bed wondering if the rest of my life would be lived there are shining bright for me these days. I try to share my story so people who are just starting off on their journey know without doubt that there will be sunny days, even if the road is different than the one I travel on. If you’re reading this and just beginning your journey, keep that hope in your hand and don’t let go.
See previous posts for 25 Days of Christmas:
Day 1 – Gluten-Free Holiday Giveaway Galore x 10—Giveaway of the new book, Mommy, What is Celiac Disease?, plus gluten-free treats and fun stuff. Open through December 15.
Shirley, thank you so much for giving me the opportunity to share with your readers. I enjoyed every minute of the writing process for this, even if it took a while to finish it. 🙂
Hey, I’m in Kentucky too. I enjoyed hearing your story which is very similar to mine!
Dana, I am now on the other side of the river! Glad to meet someone with a similar story! 🙂
Sharon M. says
What a moving story and thank you very much for sharing. Like so many of us, it reminds me of my own ongoing journey in restoring my health. It is comforting and reassuring to know that there are others in the midst of similar journeys who are having success at achieving good health thru a diet of whole foods and foods that fit the GFE approach.
Thanks, Shirley, for the thoughtful post. I’m looking forward to reading all month!! XX
Sharon, you are welcome. I’m always happy to share my story with people traveling along similar paths. 🙂
Wendy @ Celiacs in the House says
I was exhausted just reading about all the doctors and diagnoses. What a journey and then the happy ending. Thank you for sharing and thanks to Shirley for introducing you to us.
Wendy, it was certainly exhausting going to all those doctors. Not to mention all that blood work. I think I had 3 labs done in a 1 month period. My poor arm! 😀
Heidi @adventuresofaglutenfreemom.com says
I have been wiping away the tears as I read your post, it took me back to the 10 months I spent in severe hypothydroidism (TSH: 151) after my thyroid was ablated for Graves’ Disease (I also have Hashimoto’s). I literally could not get out of bed, all the while having to care for a baby. I missed almost the entire first year of my oldest son’s life, I remember very little and my memories are from what my husband managed to capture on video.
I am so happy you found your answers and are well on the road to full recovery…I am desperately chasing after you with my pursuit to uncover the reasons why I continue to be unwell.
Thank you so much for sharing your story, it will help many people, no doubt!
Thank you Shirley for having Debi on your blog, you’re such an amazing and tireless crusader for the gluten-free community and I am blessed to call you my friend.
Heidi, I know you’ve been to doctor after doctor like I have. That answer is out there somewhere, just keep at it! I’m glad your husband took video. I know there is a lot of time that I spent in that fog that I’ll never remember. So, all my memories I’ve created since then are cherished. 🙂
Thank you, Shirley, for having Debi share her story here. She is indeed an amazing woman and great friend to have. I didn’t know her story before this though, and I think it’s a wonderful story. Perseverance (and not a little desperation, I’m sure) forced her to keep searching when her doctor didn’t have the answer, and I think that’s pretty powerful.
Iris, call it being stubborn! 🙂
Heidi @adventuresofaglutenfreemom.com says
I like stubborn! 😀
Thank you so much for sharing your story– I have hadunexplained severe exhaustion and many similar health issues for years now– and my tests always come back normal. We have been switched to more natural/whole foods/enviro detox for about a year now–and so far I am still sick. it is so encouraging to hear from someone who has been there and been able to overcome! For there are many days I feel discouraged and want to give up and go back to the easier way( my dh and kids are struggling with our new way of life). Thanks also for referencing the books– I am always search for more to read up on and new things to try in my search for health!
Kelley, you are most welcome. Good luck to you! I know it can’t be easy when DH and kids aren’t buying in to the change. Hopefully, once they see change happening in you, they’ll realize how good it is for all of you. My husband doesn’t always buy in, but he does eat what I fix and if he wants junk food, he has to buy it. He has seen the benefits of my change of diet and he’ll keep 1 foot in the bandwagon. 🙂
I really enjoyed reading this guest post! I’m so glad you had the determination and perseverance to seek help from others and from yourself!
Thank you, Peggy. I’m glad you enjoyed it. 🙂
What a great post. And so like the many stories of people sensitive to gluten, and years of health issues.
Musings of a Housewife says
This is an awesome story of recovery and reclaiming your health. Thank you for taking the time to write it!
I have hypothyroidism and low iron, and while I don’t have the awful symptoms you describe, I want to get myself off iron supplements and the Armour Thyroid I take. Can you tell me what, besides eliminating gluten and eating whole foods (I’m already on that train – been gluten free for 2-1/2 weeks now!) you did to get yourself better? Are you off all meds and supplements now? I would love to hear more details, thanks!
When my Naturopath and I discussed supplements, we talked about Brewer’s Yeast, which is high in B Vitamins to help with energy and the amino acids we need, and kelp, which provides the iodine to help our thyroids function better. I started with the Brewer’s Yeast, mixing 2T in with some juice every day. It’s not really the best tasting thing, but I kept it up. I now put a little in my smoothies. After several months, when I got tired of slugging it down, I tried a supplement that had thyroid in it and I had the same reaction as I did to the Synthroid. I then found Thyroid Support by Gaia Herbs. That’s what I took until I was well into my gluten-free eating before going off of it.
If you have a Naturopath in your area, I’d suggest seeing him/her to see what they would recommend for you. Everyone’s body is different and I saw mine for years before this all happened and his recommendations were based on what he knew about me.
I am off iron and thyroid supplements, but I do take a multi-vitamin with a little bit of iron. Once my vili started healing they were better able to absorb the iron and the other nutrients my thyroid needed. I do still take prescription Vitamin-D. OTC Vitamin-D supplements don’t seem to be enough for my body.
I hope that helps!
I guess there are a lot of us out there searching for answers. I’ve been going from doctor to doctor and taking test after test for the last few years. When I was diagnosed with celiac a year ago, I was so relieved, thinking it would be the answer I was searching for. But here I am, a year later, not feeling much better. 3 days ago I cut out dairy in hopes that would make a difference. And like Heidi I have young children and I feel as though I am missing out on so much with them. I guess all I can do is keep searching like so many others out there!
Sharon, don’t give up! It’s not always easy to get to the answer you’re looking for (and this was not my first time going from doctor to doctor looking for answers) and you may not find them the same way I did. I cannot imagine going through this with children to care for like you and Heidi and I commend you for doing all you can to try to get healthy again while raising your children. *big hug to you* 🙂
Valerie @ City|Life|Eats says
This was a wonderful guest post. Thank you for sharing your story (I love your blog incidentally, though I don’t comment on it enough – I do read every post) and thank you to Shirley for having you as a guest poster 🙂
Thank you, Valerie! I love your blog, too, even if I don’t comment enough either. Life has gotten real busy and I try to keep up with all my blog reading!
Shelly Thompson says
Debi’s story is one that needs to be told. So many people are sick and conventional medicine often does not have the answers. Our family and friends usually do not understand so we feel isolated. It is encouraging as we learn from one another while walking our own paths to healing.
Thank you, Shirley!
Thank you so much for sharing your story. And thanks again to Shirley, who seems to be continually pointing us in the right direction.
Sheryl Kurlando says
I wholeheartedly commend you for taking the “bull by the horns” to get to the bottom of your medical challenges and find resolutions. You’re a role model and inspiration for others. Also, I commend you for seeking “alternative” answers. I, too, HAD a personal health challenge for years that no “M.D.” could resolve, even after a myriad of tests. A friend told me about a homeopathic doctor, and I thought , “What have I got to lose at this point?” I went to her (skeptically), and that was three years ago. I got my life back, and rather quickly. I hope your health continues to be well.
Orlando Patient Advocates
Kim - Cook It Allergy Free says
Debi, WOW! Thank you so much for sharing your story. Just reading about that fatigue and how you were feeling put a pit in my stomach. I can only imagine what that part of your journey must have been like for you. You should be so very proud of what you have accomplished. You are an inspiration and a testament to what eating whole natural foods, the way they were intended for us to eat them, can do for us.
And Shirley, thank you so much for sharing Debi and her story with us here!
Thanks again to Debi and everyone who took the time to comment. So many heartfelt comments from you all … I truly appreciate you sharing them. I know that act of sharing can be hard. From my own personal story, I know that for years I blamed myself for my issues and wondered if it was “all in my head,” so I didn’t want to share my issues with others. Debi’s story is very inspiring and gives us all hope that the answers and healing are there for us all! Please be sure to share Debi’s story with others who are going through the same issues. Doing so just might change their lives dramatically.
Many hugs to you all!
I’m recently diagnosed and also have low thyroid and low Vit. D. I’ve done so much research (just like many of you) and all of these issues seem related. After 3 months GF my Vit. D levels jumped from 21 to 53. Now I’m wondering about Armor thyroid. I’m “supposed” to take it because it’s slightly low but does anyone know if GF can solve this problem? Thank you so much for your story. It lets me know how much of this we must resolve by learning our bodies needs on our own. Our body speaks to us and your story is inspiring.
Delise, for me, gf has pretty muMh resolved my thyroid issues, but I’m always cautious because there are numerous other triggers for thyroid issues. Depending on your numbers and what your doctor thinks would depend on whether or not you can or should do a trial run off Armour. I did this with the guidance of my Naturopath and my family doctor. My issues were a little different in that I couldn’t take the medication because it made me sicker. If your doctor won’t listen to you at all it seems he/she is being unreasonable, by all means, get a second opinion. I have no qualms about firing doctors that refuse to listen to me.
If you have any other questions about my experience feel free to email me ([email protected]). Just make sure you put something about thyroids or gf in the subject line because anything that looks like spam gets deleted automatically. 😀
I have been tested but always show to have normal levels for thyroid and no intolerances to gluten. I started losing my hair nine years ago and it has progressively gotten worse. I have been on diuretics for years to help but i really don’t think it does. I am a nutritoinist actually and am always researching any links with gluten free and hair loss.
Has anyone experienced this? I guess it is worth a try, it’s just very hard for me to do. My diet is VERY heavy in gluten products although i’ve recently been able to decrease my candy intake.
I would really appreciate any comments on this.
Hi flylightsly–Welcome to gfe. 🙂 I’m so sorry that you are going through so much, dear. A good number of people who test within normal levels for thyroid and/or don’t test positive for gluten issues do have either or both. Many alternative doctors prescribe action and meds, even if tests are negative. Those would be examples of being conditions that are often treated for symptoms, vs years of waiting for conclusive test results.
Transitioning to gluten free does’t have to be hard, although it often u. One step at a time. Please take a look at my Recipe Index and you’ll see my approach. Try a few recipes. Make a list of foods and recipes of yours that you can eat, and so on.
Ellen (Gluten Free Diva) says
Dear Shirley & Debi,
Debi – what an inspiring and heartfelt story of your journey! Shirley – thank you for introducing Debi to us. She is a dear and I’m glad she’s now in our circle. Others, no doubt, will benefit by reading her story.
Debi – what you shared with us reminds me that we have to continue to be proactive regarding our health and remember, always, that we’re not crazy.
I want to share a tiny bit of my journey – specifically for your reader who is experiencing hair loss. Six months before my official Celiac diagnosis, I was diagnosed (by a dermatologist) with Alopecia, an autoimmune disease that attacks the hair follicles and causes hair loss, the amount and type varies from person to person. There are three kinds of Alopecia. You can google it for more info. In any case, I read everything I could get my hands on, as the dermatologist (to whom I’m grateful) explained that it couldn’t be cured and I was determined to find more information about it. I finally read a book called Dangerous Grains by Dr. Ron Hoggan. PS, I asked my internist for the Celiac blood test. The rest is history. I was diagnosed with Celiac, as my sister had been 8 years before. I immediately went gluten free. It took the better part of three years for the bald spots to have regrowth. Now, six years later, I still have some bald patches, but they’re hidden by my hair, thanks to my wonderful hairdresser. I can’t help but think that the regrowth has been as a result of going strictly gluten free and almost entirely dairy free. I have hope that my hair will grow back completely as I continue to refine (pardon the pun) my diet to be a whole foods, refined-free, plant-based way of eating. I am studying to be a Certified Holistic Health Coach, with a specialty in Gluten Free/Dairy Free. And I certainly can speak to the Alopecia population! I will be taking clients beginning February of this year, if anyone wants to speak with me, please feel free to get in touch at [email protected]. Meanwhile, once again, thank you Debi for sharing and inspiring all of us to continue on our journeys towards health!