Today I want to share with you my gluten free story and the hell I went through getting a diagnosis to my bizarre symtpoms. When I started Skinny Fitalicious in 2014, I shared every detail of my journey in daily blog posts.
Now, four years later, there's a lot of new people here constantly asking how I discovered I needed to remove gluten from my diet. After 2 years of searching for answers, this is how I was diagnosed with an my autoimmune disease. This is my gluten free story. Here we go!
Before we jump right to the diagnosis, it's important for you to know that in 2010 I lost 80 pounds walking. It was an extremely low point in my life. I battled my weight since I was a teenager and I hated myself from the inside out. At that point in my life, I was desperate for change. Truthfully, I just wanted to like myself.
So, I started walking every day and little by little I was walking more and more. After awhile, I started paying attention to what I was eating, counting calories and adding vegetables to my meals. The healthy habit of walking every day inspired me to eat better and learn how to cook real food meals.
Coming from someone who ate pizza and chips regularly, this was huge. And, over the course of a year I lost 80 pounds almost effortlessly. Shortly after I lost weight, I started Skinny Fitalicious.
Friends and co-workers kept asking me how I lost weight and always wanted me recipes that I decided it would be easier to start a blog to direct everyone to.
Wow! I really had no idea how much MORE work starting a blog would be, but that's a story for another day! 😉
In 2014, I suffered from a series of stress fractures. As a result, doctors ran multiple tests on me to figure out why they kept happening only to find I had no estrogen, osteopenia, amenorrhea, iron deficiency anemia, B12 deficiency and I kept losing weight despite eating 2000+ calories daily.
I also suffered a number of other bizarre symptoms - night sweats, brain fog, bloating and constipation, and extreme fatigue. It got to the point that going to work every day took every ounce of energy.
I knew something was wrong and I saw doctor after doctor after doctor, but no one knew what was wrong with me.
Doctors would diagnose me with various things like iron deficiency anemia and prescribe iron, but no matter what I said or did they could ever tell me what the root cause was. This went on for two years. It got so bad I thought I was going crazy.
During one particular stress fracture, I saw an orthopedic who took an x-ray of my ankle and declared I did not have a stress fracture. I explained to him that none of my previous stress fractures ever showed on x-rays, only MRI's. He told me an MRI was an "unnecessary" medical expense for my insurance that he would have to explain.
I pleaded with him to do so. I could barely walk, but he refused. He told me the pain was in my head and that I was crazy. He dismissed me and I left the office limping and sobbing. Not a single person in that medical office stopped and asked me if I was ok.
The next day I drove to Mayo Clinic emergency room. I could hardly walk and the pain was beyond belief. I couldn't get in with another orthopedic for weeks so the emergency room was my last hope.
They put me on a stretcher in a hallway for 4 hours. I sobbed until a doctor finally saw me. He noted my ankle was extremely hot, but said my x-ray was clear and released me. I asked the nurse how they could release someone in so much pain who couldn't walk. She told me I was not an "emergency."
Later that night I couldn't sleep. The pain was unbearable. At 3 in the morning, I drove back to Mayo Clinic ER. They did another x-ray and once again sent me home. This time the doctor listened to me and agreed something was wrong.
In fact, he scheduled an appointment with a pain management specialist and rheumatologist stating I had some rare disease that people get after having multiple stress fractures.
That night, I went home and looked at a bottle of pills and thought this is it. Doctors won't listen to me and I can't live in this much pain. But something inside me told me not to take the bottle of pills. The next morning a Mayo Clinic x-ray tech called me stating they compared all my x-rays and saw bone degeneration and believed I had a stress fracture. They ordered a stat MRI which confirmed I had a stress fracture.
I was right. That moment they told me it was a stress fracture was a relief, but it also felt like a horror movie. Because no one could tell me why I was experiencing this over and over.
Shortly after, I saw an OBGYN at Mayo Clinic who prescribed estrogen to jump start my periods. If I knew what I know now about my autoimmune disease, I never would have agreed to taking estrogen. But she was a doctor, and I always believed doctors knew best.
So I took the estrogen, got my period back, gained 15 pounds overnight and felt even worse than I did before.
Yet I knew something was horribly run with my body. I could barely function. Was exhausted all the time, constantly hungry, bloated and couldn't focus.
I saw over 20 doctors during 2 years and none of them diagnosed me with anything meaningful. Meanwhile, I felt my body slowly deteriorating.
At a funeral, I broke down and told my best friend what had been happening with me and she recommended I see a naturopath. I didn't know what a naturopath was, but I knew it was my last resort to getting real answers.
The naturopath I saw ran blood work and within a few days diagnosed me with Hashimoto's disease (an auto-immune disease where your immune system attacks your thyroid). My anti-bodies were the highest she said she ever saw in someone. She immediately removed gluten from my diet and with 6 weeks, I started to feel better. After 3 months of eating gluten free, my symptoms went away. No more stress fractures.
Looking back, I'm disappointed in the medical community for not treating me like a human. Everyone is so caught up in insurance that the care in health care is no longer there or about what's best for the patient. The experience made me lose all confidence in doctors.
To this day, I keep high tabs on the labs they order and diagnoses they give me. I'm probably a doctor's worse nightmare, but can you blame me?
Case in point, I was at the doctor recently and he ordered standard blood work to check for anemia. I corrected him to order a full iron panel because my anemia only shows in ferritin (iron storage), and ferritin is only measured on a full iron panel. Exactly why you need to be your own health advocate!
While this was the worse experience of my life, it turned out to be the best experience of my life. It made me realize the importance of nutrition. How it can not only heal you, help you lose weight and look good in a bikini, but also hurt you if it's not the right nutrition for you.
Had it not been for this horrific ordeal, I never would have become a nutrition practitioner and began my journey to helping women all over the world find answers to their health. The right answers that are right for them.
And that's my gluten free story!
Hi! How long did it take for your period to come back? I hate to admit it, but your story is identical to mine, except, I still haven’t gotten my period back. I was diagnosed with sub-clinical hypothyroidism after a miscarriage, got on thyroid meds, and went gluten free- waiting for my period, curious if it will come back. It’s been gone for 6+ months.
Like I mentioned in the blog post a Mayo Clinic doctor put me on a high estrogen birth control pill and that brought my period back with a vengeance.
Thank You!!!!!!!!!! I was simply looking for a granola recipe and came across yours. You stated autoimmune disorder , I was curious so I clicked!!! I was just diagnosed with Hashimotos as well, our journey is about the same, dr after Dr test after test. My doctor never mentioned anything about gluten, now after one week of gluten free, I feel amazing, I didn’t think I could ever feel this good! I now have some of the issues resolved. Thanks for changing my life!
Hi I have been coming of abdo pain for many years! Eventually I insisted that my GP help me. In tears I demanded that they help. A locum diagnosed Coeliac. I am inspired by your story.Im a few weeks into being gluten free and all over the place both mentally and physically.
Hi Megan, I’m so glad you finally arrived at gluten free and were able to start on the path to the real you. What a horrible ordeal! Question - when you say gluten free, what else does that mean besides wheat free? Barley free as well? I did not go through what you did health-wise, but I also suffered extreme fatigue, sinus headaches, skin disorders, brain fog, bowel issues, until I gave up wheat. I never ate much barley, so I don’t know if that’s a problem. But the difference in how I feel without wheat is wonderful. I would always sneak it back gradually into my diet but this summer I finally just got sick of feeling lousy and gave it up completely. I then went Paleo, but realize now I threw the baby out with the bath water by giving up ALL grain and dairy too. Then I started your meal plans at the end of November and am feeling great. But I’m curious about if gluten free just means wheat free? Is there a difference?
Hi Linda! Gluten is the protein found in wheat, rye, barley, etc. People who are celiac or non-celiac gluten sensitive have issues with the protein gluten which is stretchy substance. It holds food together which is why it's hidden in condiments, oils, dressings, breads, chips, etc. A wheat allergy means you are allergic to wheat but can tolerate rye, barley etc. An IgE test can confirm a wheat allergy but not a gluten sensitivity. Only a biopsy can confirm for celiac disease and it's only about 75% accurate with 3 test samples. If you are allergic to wheat, you would have allergy symptoms. Sneezing, coughing, itching, swelling, etc. Gluten symptoms can be more difficult to detect. Extreme fatigue, bowl issues, brain fog like you described could be from a number of things. Nutritional deficiencies, working out too much, chronic stress, anemia, leaky gut, not enough fiber in the diet or not eating enough vegetables and healthy carbs. There is always MORE going on than 1 thing. Gluten + wheat are just one piece of the complex puzzle.
I have had Grave's Disease since 2003 currently in remission. A year ago due to a full blood panel I discovered that my ferritin was almost depleted. The doctor said this was an issue if I ever became seriously ill. I have taken iron supplements but ferritin is still low. How did you correct your low ferritin? (I currently eat glutten free and feel so much better)
I corrected my ferritin by eating gluten free and taking iron supplements. Although, I shouldn't say corrected. I still have to take iron supplements on and off to keep it in a healthy range. I also take it with Vitamin C for optimal absorption and not with any caffeine 2 hrs before or after. I saw a hematologist for years about this and never got answers as to why I have to take iron or why my ferritin depletes.
Wow Megan! I am so sorry you had to go through all of that. But I am happy you made it out on the other side. I share a similar story with you... I had stomach issues for all of my life and over 20 doctors could not figure out what was wrong with me.... they just kept diagnosing me with IBS...I finally took matters into my own hands, cut out gluten and like you, my symptoms completely disappeared. I hadn't felt that good in my entire life. Thanks for sharing your story.
Thank you so much Taylor! It's so frustrating with doctors sometimes. I'm glad gluten free worked for you!