My Experience with Dermatomyositis: How Gluten Was Behind It All

I’ve previously written about my misdiagnosis of dermatomyositis (which was 11 years ago now!) on HuffPost and Natural News. Today, I want to share more about what happened to me all those years ago here on my personal site.

In an effort to not to let what happened define me, I’ve mostly shied away from talking about my diagnosis of dermatomyositis at the age of 16, although I did write about it briefly when I first started my business on The Green Writing Desk.

But here we are, and I realize that part of my work is helping others and sharing something that I used to consider monumental about myself—that I was diagnosed with dermatomyositis and almost five years later, discovered all my symptoms were being caused by a gluten intolerance.

Yes, it’s that simple.

Here’s what happened and how I came to realize a devastating, life-changing illness called dermatomyositis was being caused by one of the world’s most common foods.

Disclaimer: I am not a doctor. This article is not meant to diagnose or treat any illness or provide medical advice. Please view the following story from my personal experience only. If you have any more questions about my personal experience with dermatomyositis, please feel free to contact me.

The Beginning: Muscle Weakness and Rash

I graduated high school one year early at the age of 16. As many people can testify, I was a punk-ass teenager who had dreadlocks from not brushing her hair and wore men’s clothes to school. I didn’t care about much, and I certainly didn’t care about going to college, which was why I was starting a job as a nanny for a four-year-old boy with autism a week after graduating.

A week after I started my job, about two weeks post-graduation, I was at work one Monday morning when I found I had trouble getting off the toilet. There was a vague muscle ache in my thighs. It was odd, but it wasn’t painful, and I didn’t pay it any attention.

Just days later at the end of that week, a Friday, I was in so much pain and my muscles so affected I couldn’t walk up a set of stairs. I remember going to Starbucks with my friend Kat that night to get passion iced tea, and my legs were in so much pain that I had trouble getting out of the car. I remember crying while trying to walk up the set of curved stairs to my room—I was literally pulling myself up the stairs on the railing. My muscles were giving up.

My disease quickly escalated to the point that I couldn’t work, couldn’t sleep, and couldn’t really do much at all. I first went to an urgent care doctor with my mom and was misdiagnosed with Lyme’s disease, then placed on antibiotics, which made me even sicker.

When the antibiotics didn’t help, we saw another doctor, who admitted he had no clue what was going on, even after I started developing a mild red rash all over my body. This was our family doctor who we’d trusted to care for us for years. I tried to explain to the doctors what it felt like: “It feels like I worked out A LOT, but I haven’t worked out,” and “Everything hurts.”

I had pain medication from my Lyme’s diagnosis and still couldn’t sleep. I was in pain all the time. I felt like I was going to die. This went on for three weeks before I woke up one morning and my legs—my thighs, the initial part of my body that hurt—were extremely swollen. We saw the family doctor once more, who sent us straight over to the hospital, where a bed was waiting for me.

After taking vials of blood and examining my rash, which had come on my face, back, arms, and legs, I was allowed to rest there for a few hours before being woken up in the middle of the night. Turns out I had an irregular heartbeat, and the hospital couldn’t treat me. I was being transferred, to Johns Hopkins in Baltimore, at about 4 a.m. The doctors said all my muscles had become involved and were essentially breaking down.

The Middle: Diagnosis and Treatment

I really hated being at Johns Hopkins. It was a crowded, noisy, inner-city hospital in Baltimore, about an hour away from our house, somewhere a farm girl like me had no business being. My roommate was a girl who couldn’t speak and had swollen lips; I got a glimpse of her once through the curtain.

After being at Hopkins for a day or so and running more tests, I was finally diagnosed. A team of doctors stood in front of me and told me that I would be sick for the rest of my life with a disease called dermatomyositis. It did not have a cause, it just happened. It had a treatment, but was incurable. I would need to be on medication. I might not ever feel better.

This was devastating news. I remember sobbing while they told me, and my mom standing next to my hospital bed, telling me to get it together. I couldn’t. It felt like someone telling me that I wasn’t actually going to get better. How was I supposed to feel about that, at 16 years old?

The main doctor on my team, one who was standing there that day, a rheumatologist whose name I will not disclose here, treated me for the next three years. I was treated with high doses of prednisone intravenously, Methotrexate (a chemotherapy drug) via injection, among other anti-inflammatory meds such as Naproxen. After four days, my parents and I finally convinced the hospital to let me go home with all my medicine.

At home, things were different. I couldn’t walk by myself, couldn’t shower by myself, couldn’t really do anything by myself. My family had to help me do all these things. I felt different. It felt like I had been branded with something, and what I felt now had a name I could identify it by: dermatomyositis.

I got out of the hospital a few days before my seventeenth birthday, in the middle of July. For the rest of the summer and into early fall, my parents and I drove to Johns Hopkins twice a week so that I could get intravenous steroid treatments. At home, I did my injection of Methotrexate once a week. Very slowly, I started getting better from dermatomyositis, although I understood it was a chronic disease. Once my dermatomyositis was more or less under control through lots of medication, eventually, I went back to work and had a relatively “normal” life.

Not Quite the End: Relapsing

Three years after my diagnosis of dermatomyositis, I relapsed. I was weaned off most of my medication by this point, and for a couple years, I felt healthier and happier than I had in a long time.

I had lost the 30 pounds I gained from all the prednisone and then some, weighing in at about 125 pounds when I was about 140 when I’d graduated high school. I started college over a year after I was diagnosed, in the fall of 2008, just going part-time to better manage my stress. I even had a few flings with guys I’d met in college. I felt more like a person and less like a patient, until the fall of 2010, when the first relapse happened.

After experiencing an intense period of stress, my legs started hurting again and I felt fatigued. I was afraid. My bloodwork didn’t show any muscle inflammation; my CK levels were normal. My rheumatologist from Hopkins put me back on my medication—lower doses than before—but it helped me get better.

I didn’t want to be on the medication for any longer than I had to. I’d met a guy in my phlebotomy summer program in 2009 who had gotten me into eating healthy. For the first time, I was paying attention to what I ate, buying my own food, and trying to be better about taking care of myself and more conscious of what I put into my body. The medication made me gain weight, feel gross, break out, and the Methotrexate made me feel nauseous.

So, about eight months after relapsing, in 2011, after going off nearly all my medication, I relapsed again just a few months later. At this point, my Hopkins doctor suggested I find another doctor, given that I was well over the age to be treated by a pediatric rheumatologist.

After asking around, I went to see a doctor in Annapolis who was highly recommended by some women in my lupus group. Lupus was a close cousin of my disease and these were the closest people I could find to relate to. I’d never met anyone else with dermatomyositis. The group was a helpful support to me during this time of believing I had dermatomyositis.

After seeing this doctor, she told me I would most likely be on chemotherapy for the rest of my life to manage my dermatomyositis. I walked out of the office that day and felt completely and utterly hopeless. The sky was gray and overcast, and as I walked to my car, I tried not to cry. I had just turned 21 a few months earlier. I felt like I was going to die.

The End: Discovering the Root Cause of my Dermatomyositis

It didn’t take me long to realize that I couldn’t accept this fate for my life. I needed someone else who could help me. This doctor was not it. I tentatively felt hope. Maybe this wasn’t the end.

I’m not sure where I got it in my head to find an herbalist, but within a week, I began researching online and placed countless phone calls, trying to find someone who could help me. I spoke to a woman who was moving, so she said she couldn’t help me, but to not give up. Eventually, I found Barbara. I began seeing Barbara in November 2011.

During my second meeting with Barbara, she looked at me and said, “I think gluten is causing your illness.” I was confused. I’d heard about gluten, but only in passing. “Doesn’t that cause stomach problems?” I asked. “It can cause many symptoms,” she told me. In my mind, there was no way it was causing my dermatomyositis.

I thought she was crazy. I even told her so. “I was diagnosed at one of the best hospitals in the country,” I told her. “If they couldn’t figure out what was causing my illness, you won’t be able to.” Barbara maintained that once we’d built my immune system back up a little bit, that she wanted me to go gluten-free.

Ideas are strange things. They grow in our minds. And as I left our meeting that day, her words stuck with me. I did more research and even talked to a friend about it. She had celiac disease, and when I told her what my herbalist said, she didn’t think the idea sounded that crazy. She even gave me a book to read, The Gluten Connection by Shari Lieberman.

By the time I got a couple of chapters into the book, I was convinced that gluten was causing my illness. This is what’s happening to me! I remember thinking. I felt a stirring in my soul that can only be described as a gut feeling that this was it.

Although Barbara didn’t want me to go gluten-free yet, I couldn’t stop myself. I immediately stopped eating gluten. Gluten is mostly in bread products, but it can also be in other weird food products such as soy sauce and beer. I didn’t care. I wasn’t eating any of it.

A few days into my gluten-free diet, my family remarked that I looked weak and pale. It was probably my body detoxing from the gluten; I didn’t know. They were worried about me and weren’t exactly supportive of my decision. Of course, I was still taking medication for my dermatomyositis.

A couple more days into my gluten-free diet, almost one week in, I had an extremely long day. I went to school, then work, then to a friend’s house to hang out. My legs, which were almost always in pain, especially after a long day, didn’t hurt. I remember telling my friend: “My legs don’t hurt. This is amazing!”

My dermatomyositis symptoms disappeared about a week after going gluten-free. A couple weeks later, I weaned myself off all my medication for dermatomyositis, dug my feet in for the long haul of being gluten-free, and I haven’t looked back since.

Now: I’ve Never Felt Better

It’s been almost seven years since I went gluten-free, and to this day, I have experienced no symptoms of dermatomyositis and have taken no medication for the illness.

After reviewing my medical history paperwork from both hospitals, I realized that I had never been tested for gluten intolerance. The doctors truly had no idea what was wrong with me. They made their best guess based on their training, treated me, and I got better. But my immune system couldn’t sustain itself without the medication, because the root cause of my disease went unchecked: gluten.

Once I removed gluten from my diet, my body got better. I got stronger, healthier, and gained a little bit of weight back from my skinny frame in my late teens. Today, I work out several times a week (running, yoga, weights, walking) and come in right around 130. I feel healthier than I ever have.

I don’t necessarily blame the doctors. They are only required to take one nutrition class throughout their entire medical education. How could they have possibly known that food was making me sick? How could they have known that my illness wasn’t some cosmic mystery, that it had a cause, a name, and that name was gluten?

I don’t blame my parents either. Should they have taken me to the hospital earlier, rather than waiting three weeks to get me the help I needed? Of course. But, like any other parents, they did the best they could with what they had. I was a child, I didn’t know better, and I was out-of-my-mind sick; I couldn’t advocate for myself. I trusted them to get me help. Although that “help” came much too late, I don’t think it was entirely their fault. I saw the doctor three times during those three weeks I was sick in the beginning, yet only on the third and final time was I sent to the hospital.

I don’t blame myself either. There was a period of time when I did, but the truth is that I didn’t know. I grew up eating Oreos and Hot Pockets. I didn’t know that food could make me sick. I ate what my parents bought and that was it. I didn’t know what gluten was when I was sixteen, didn’t realize that I was making myself sick. So I’ve had to let that go. I know better now, and that’s what matters.

So What Really Happened?

What happened is that my body, for whatever reason, decided to start reacting to gluten and create such a severe immune response that I was diagnosed with dermatomyositis at the age of 16.

If I had caught my disease earlier, it’s likely that it wouldn’t have gotten so bad, although we still wouldn’t have figured out that gluten was the problem. I would have still been on those terrible drugs.

Gluten is a protein. When we eat food, our body is responsible for breaking that food down into digestible particles that the body can use for nutrients. My body decided to start treating gluten like an invader, and since my body was using gluten to nourish itself, my body was attacking pretty much every part of itself.

It sounds weird, yes, but the body can all the sudden decide it doesn’t like something and start reacting to it, quite literally overnight.

I have a couple of theories for why my body all the sudden decided to start reacting to gluten which landed me with a dermatomyositis diagnosis:

  1. I had just graduated high school a year early, had literally no idea what I wanted to do with my life, and was all the sudden expected to figure it out (read: stress).
  2. My family and I had just finished adding an addition onto our house (of which we did much of the work ourselves), and I was exposed to untold numbers of chemicals through paint, insulation, polyurethane, new carpeting, etc. These materials have highly toxic chemicals in them and I was exposed to them every day for several months.

Do I know for sure what caused my body to feel that gluten was the enemy? No. Do I care? Not really. This is my life now, and I’m so grateful that instead of being on chemo, steroids, and other anti-inflammatory drugs, that I just get to skip bread and feel better than I ever have in my entire life.

FAQs

  1. Do you have celiac disease?

I do not believe so, I believe I have a gluten intolerance. Gluten sensitivity, gluten intolerance, and celiac disease are all slightly different versions of each other. It’s also important to remember that an intolerance is different from an allergy. I am not allergic to gluten, my body simply doesn’t tolerate it.

  1. Do you have any lasting effects from your disease?

Yes, but they’re minor. When I get really stressed out, my face gets red and my legs hurt. These symptoms are always temporary and fade within a few hours (provided I deal with my stress!).

I also have to pee frequently thanks to all the prednisone I was on. My weight gain from the prednisone also gave me mad stretch marks. I’m also having minor symptoms of a benign tumor on my pituitary gland; whether this is the result of my illness and all those drugs, I don’t know.

  1. Do you still see a doctor?

I have a deep distrust of conventional doctors, of course. I do see an integrative doctor when I need to and I work with an herbalist to address any other health problems I have.

  1. Did you contact your doctors after you found out?

I did contact my Hopkins rheumatologist to let her know, about two years after going gluten-free. Her response was very nice:

It is great to hear from you. I am very glad to hear that you are doing so well now. You are right—there is still a lot to learn about autoimmune diseases and the interaction between diet and inflammation. I am so happy that a gluten-free diet is working for you. It sounds like you have a bright future planned—please keep in touch and let me know how you are doing. I am sure you will be very successful.

  1. So do you have dermatomyositis?

I do not believe I have dermatomyositis. Dermatomyositis isn’t like other illnesses such as HIV or Lyme’s disease: there is no definitive marker in your blood or tissues that proves that you have the disease. Doctors make their best guess based on your symptoms and bloodwork. I believe my immune system was simply responding to a threat, and when the threat wasn’t removed, my symptoms got so severe that they warranted a diagnosis of dermatomyositis. After seven years of not eating gluten and having no symptoms of dermatomyositis without taking medication, I can only assume gluten was the culprit the whole time. 

I’m looking forward to having a bright future without gluten in it, and feel so fortunate that all these years later, I’m still alive, disease-free, and loving life. A huge thank you to everyone who was part of this journey, even if it wasn’t in the way I wanted or imagined. Would I have preferred to not have been diagnosed with dermatomyositis? Of course. But this is my journey, and I can’t be sorry for any of it.

Also, I wrote a research essay on gluten and dermatomyositis while I was at Penn State. If you’re interested in reading more about dermatomyositis and proof that other people like me who have dermatomyositis have healed from a gluten-free diet, just email me and I’ll send it over!

Thanks for reading!

6 thoughts on “My Experience with Dermatomyositis: How Gluten Was Behind It All

  1. Dianne says:

    I have been diagnosed as you were and read with interest your article. I went to a naturopath, quit grains, went on Omega 3’s and high Vitamin C – 7-9000/daily, turmeric & black pepper capsules, lowered dairy and trying to completely quit sugar. My rash is disappearing after almost 3 years. I am desperate to reduce the Prednisone and am down to 12 mg/day.

    The naturopath has had me add other vitamins and I think I am finally on the road to recovery. I loved your article and it sounded so much like myself. At least I’m not alone on this journey, thank you

    • Jenn says:

      Hi Dianne! Thanks so much for your comment, and so happy to hear that you are on the road to recovery. I too take omega-3s and turmeric daily! I also do not eat dairy, as I found out I’m intolerant to that as well. People who are sensitive to one food are likely to be sensitive to another, as we know from leaky gut. The prednisone has terrible side effects, I know. I hope that you’ll be able to find out the right combination of foods, vitamins, and herbs that work for you. My best wishes for your journey and optimal health!

  2. Sarah Lockhat says:

    Hi there.. My 9 year old granddaughter has been diagnosed with DM. My daughter wants to put her on gluten free diet but her husband and mum in law are sceptical and totally unsupportive. Please can you email me details of your research.
    Thank you
    I’m from South Africa, and not much is available here in the form of support

    • Jenn says:

      I sent it to your email Sarah, let me know if you don’t receive it for some reason… thanks!

  3. Maya says:

    Sara, your testimony was God-sent to me. I am the mother of a 7-year old who was diagnosed with Juvenile DM about 6 months ago. I have been frantically trying to find natural solutions to at least suppress her symptoms and grabbing on to whatever information I can get. The only symptoms she currently have are a rash on her knuckles, toes and elbows and that’s initially how she was diagnosed; along with blood test that showed a little inflammation and a MRI of the lower extremities with no myositis shown. She hasn’t really shown signs of muscle pain and I want to keep it that way. I’ve recently started her on a Gluten-Free diet in hopes that here next set of labs show progress without the Metrotrexate and Plaquenil the rheumatologist is prescribing. Can you email me ANYTHING/ info that ca help?

Leave a Reply

Your email address will not be published. Required fields are marked *