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 is a close cousin of dermatomyositis 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 (update to this post: 2020 will be nine 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:
- 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).
- 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
- 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.
- 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.
- 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.
- 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.
- So do you have dermatomyositis?
I do not believe I have dermatomyositis. 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 so many 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 had a dermatomyositis diagnosis have healed from a gluten-free diet, just email me and I’ll send it over!
Thank you so much for reading!
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
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!
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
I sent it to your email Sarah, let me know if you don’t receive it for some reason… thanks!
Hi jenn I have dermato and doctor said to me it is on initial step ,do you think if remove gluten and use rice replace with bread ,it is good for me
Thanks for your comment, Reza! I’m so sorry about your dermatomyositis diagnosis. I can’t say for sure whether or not removing gluten will help you, but dermatomyositis is an autoimmune disease, and it’s likely that your body is reacting to something. If you can, I would get a test done for food intolerances. If you aren’t able to do this, removing gluten could help. Just remember that rice is a grain, and some people who have sensitive immune systems do better on a grain-free diet as well as a gluten-free one. If it were me, I’d try not to focus on “replacing” gluten but instead focus on whole foods such as vegetables, fruits, fish, meat, etc. Let me know if you have any questions, and best of luck to you!
Rice is one of my daughter’s probelms. So we have had to remove every grain except for Quinoa.
Corn, Rice, Wheat, Barley, Rye, etc.
The list is extensive but she feels better. We are now down to 1 mg Prednisone.
I’m so happy to hear your daughter feels better, Elena! And 1 mg of prednisone is amazing! Yes, everyone is different and I’m not surprised that so many grains are problematic for her. I do really well with quinoa myself but can also tolerate rice and corn, but not any gluten. I hope your daughter continues to feel better with all the positive changes you are making!
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?
I responded to your comment in an email, Maya!
My husband had a similar problem with gluten, though he did not have the muscle involvement. He had a full body rash, mechanics hands, and what I’ve come to know are Grotton’s Papules. I was recently diagnosed with IBM and in learning about that, have learned a lot about DM. He accidentally discovered the gluten connection after going on a lo carb diet and not consuming any bread, and the rash went away. Tried bread again, it came back. While it may not be classic DM he certainly has many of the symptoms.
Thanks for sharing, Kathryn! Definitely sounds like similar symptoms for sure. Some people are fortunate enough to catch the illness before all the muscles become involved. I am sorry to hear about your recent diagnosis. It’s possible going gluten-free may help your symptoms as well–or at the very least getting tested for food intolerances that could point to leaky gut. I wish you both the best of luck!
Hi, my name is Jimella Phillips. Its not true that there is no test to diagnosed (Juvenile)Dermatomyositis, its called a muscle biopsy. So, are you in remission or do your believe the disease is gone? I’m confused because you stated,”Yes, but they’re minor. When I get really stressed out, my face gets red and my legs hurt:” This discriprion sounds like the dermatomyositis is still mildly active in your sysem.
With that beind said, I only eat foods that are gluten free….for a few years things seem to be improving, then the Juvenile Dermatomyositis came back with a vengeance. I known some that share my experience. Why do you think the JDMS flared-up so severely??
Hi Jimella, thanks for your comment! From what I’m reading, a muscle biopsy to test for dermatomyositis would be similar to getting a blood test done; it would not be a definitive marker that the disease is present, merely that the symptom of muscular dystrophy or defects in metabolism are present.
To answer your question, I believe that I never had dermatomyositis in the first place, merely that my immune system was reacting to what is perceived as a threat (gluten). I do not believe dermatomyositis is still active in my body. Everyone’s body will respond to stress. For me, the symptoms you mentioned are only during periods of intense stress which rarely happen (maybe once or twice a year) and always go away in a few hours. It’s just how my body responds to intense stress now after experiencing my illness. It’s been seven years but I believe my body is still recovering from such a harsh episode of illness and drugs. This is just my personal opinion.
I can’t say why your DM flared up again after being gluten-free, what I can say is that I know that if it were me and I began having symptoms of DM again, my first step would be to visit my integrative health doctor and get blood testing done for food intolerances and allergies. It’s possible that you’re suffering from leaky gut, which some medical professionals believe is the root of all autoimmune disease. In case you’re interested, I’ve written about leaky gut here and here.
I wish you the best of luck!
If you will please share your research essay with me. My husband last year 2018 was in and out of the hospital for what they thought was pneumonia double pneumonia turns out that they did long biopsy to determine that his immune system was fighting his own body later being treated for dermatomyositis. Long story with a lot of details. He’s been on high dosages of prednisone, methotrexate another drugs. He is a 55 year old guy who has always been so healthy and all of a sudden… this. It started with swollen eye lids and then pneumonia like symptoms . I really enjoyed reading your entire. It has given me hope. It’s late and My sweet husband is asleep. I can hardly wait to read your article to him tomorrow. So glad that you are well. That is my prayer for my strong man…complete wellness.
Thanks so much for your comment, Leasa! I’m so sorry about your husband’s recent diagnosis. As I know you read, I, too, was totally healthy before being diagnosed. I emailed you all the documents, let me know if you don’t get it. My best wishes to you both during this difficult time.
lCould you please send me your research essay on gluten and DM? I have a daughter who has been dealing with “DM” for 3-4 years now. Want so much a natural approach to her symptoms instead of meds. She does too!!!! Any info you have on leaky gut too would be wonderful.
I sent you an email, Lori!
Hello, My husband was diagnosed by a Dr at Hopkins five years ago. He was put on high dose of Prednisone which helped him feel better…4 years later he is still on it and because of that he has developed many other issues. He tried many times to come off of the prednisone but always had bad results. We read the book Faster way to fat loss and decided the follow the plan of gluten free and diary free. My husband weaned himself off of the prednisone and has not had any symptoms. I do blame the doctors for at least suggesting a food allergy test prior to jumping into Prednisone. I tell everyone who will listen my husbands story.
Thank you for your comment, Laura! Your husband’s situation sounds very similar to mine! I agree that doctors need to be more mindful of how food can affect our bodies and recommending testing for food allergies/intolerances before jumping to drugs as the answer. Unfortunately, that’s not the way our Western medical system is set up. Hopefully things will begin to change! I’m so happy to hear your husband has had positive results with the diet, and wish you both the best of luck!
Hi Jenn,
I would appreciate it if you could email me your research essay about Dermatomyositis and gluten. I was diagnosed with it in January 2015 at age 55 when I broke out with a rash mostly on neck, chest hands and arms. I had no muscle involvement at that time. I was prescribed 400mg of Plaquenil per day which cleared it up after a few months. My dermatologist kept me on it until July 2017, at which time she said I could stop taking it because the DM was in remission. I was thrilled and hoped I had dodged a bullet, until the rash came back 7 months later in February 2018. My dermatologist put me back on the Plaquenil, which did not help right away. Then to make matters worse, in April, 2018 my arms started aching and it was confirmed through an Electromyography that now my muscles were involved. I went on Prednisone for a couple weeks and then I was prescribed Mycophenolate Mofetil (Cellcept) 2000mg per day in June 2018 to take in addition to the Plaquenil. It took til late August 2018, but my rash and muscle soreness did finally go away, and I have been on those 2 meds ever since and feeling pretty good in these last 16 months. Until 5 days ago when my scalp and back of my neck started developing sores and itchy bumps, and I am thinking back to the last few weeks where I recall my muscles have been somewhat achy 🙁 I am really bummed out about this because even with taking these 2 heavy duty meds, it appears my DM symptoms have returned. Sorry to say, I have not really watched my diet during these years – but searched for info today and came across your blog. I need to give a shot to going gluten free – it certainly cannot hurt… I have an appt to see my dermatologist in 2 days when I will bring up the gluten issue. I’m really worried about what she will have to say or prescribe –ugh. Sorry for such a lengthy comment! Its fantastic that you are doing great – best wishes to you! Thank you for sharing your story, and I really enjoyed reading your other writing samples
Thanks for your comment, Patty! I sent you an email 🙂
I was diagnosed with dm three years ago. I spent 5 months in different hospitals finally being diagnosed at University of Washington. At one point my whole body was so swollen that the skin would just rip, I couldn’t swallow, bring my hands to my mouth or walk. After 5 months I was finally off all medication but still the skin rashes, ear pain, the itching, feeling extremely fatigued and unable to sleep all night It took me almost three years to be able to get out of a chair. Then a blessing occurred I got food poisoning. Three days into lemon water only, my face started to heal, the flaking skin, redness, itching, swollen eyes started to disappear. I’m only into my second week of gluten detox and I don’t feel completely better yet but my skin is responding. I can only imagine the healing that is happening internally. I’m excited at the prospect of being pain free. I had never been told about a gluten connection by any of the many doctors I saw. I don’t know if just stopping gluten would have been as obvious as the fasting. I am so very thankful and I hope others who are suffering can benefit from removing gluten ❤
I’m so sorry about your diagnosis Connie. What an awful experience with DM; you have really had a time of it! How crazy that you felt better without food for 3 days–it’s so weird how things happen. It sounds like your symptoms were really severe so I wouldn’t be surprised if they took some time to go away. And remember, you could be responding to something else besides gluten, or something else in addition to gluten. I’d really recommend a blood test for food allergens and intolerances if you can afford it! In my experience, my body always seems to do better with plain, simple foods: no dairy, no grains, no gluten, no GMOs, just yummy organic fruits, veggies, healthy fats, and grass-fed, humanely-raised meat. My best wishes to you in your journey of healing, and thank you so much for sharing!
Thank you for your comments. I appreciate validation of the symptoms it’s so difficult to find information to heal. ❤
Thank you for sharing! I was diagnosed in Nov 2018 and haven’t thought about gluten being an issue.
I would love to read your research essay and see if cutting gluten will help me as well! Thank you!!
Thank you for sharing your story. Does you research show any links with gluten and Polymyositis?
I believe there’s one link that mentions polymyositis in my research, but I’ve gone ahead and sent you an email with some other helpful peer-reviewed links that show people living with polymyositis who have improved on a gluten-free diet. Hope this helps, and best of luck!
I have been diagnosed with amyopathic dermatomyositis. do you mind sending me your research?
thank you!
Yes, I sent you an email, Kay!
Hi thank you so much for your transparency and what a great read. I was diagnosed with DM years ago..have been in remission with recently signs of flair ups. Please send me your other article of gluten and leaky gut.
I sent you an email, Darla! You can find articles I have written on leaky gut here and here 🙂
Loved your article! Please send me your paper you wrote while at Penn State. I was dc with DM in 1996 at the age of 28. This was following the birth of my second child (who at age 11 was diagnosed with celiac disease). I was on prednisone for too many years. I did have a muscle biopsy that was ‘conclusive’ for DM… later used antibiotic therapy and was able to wean off all meds and achieve remission. I had a relapse of DM after baby number 3. I again used antibiotic therapy and again achieved remission. I have been symptom-free and off all meds for 17/18 years. I went gluten-free / keto about 2 years ago and feel so much better not eating gluten – lost weight, less discomfort. I’m currently reading Wheat Belly. So glad to hear your story… I follow some groups online about DM and seriously think wheat and gluten is very bad!
Thank you so much for sharing, Li! Per our email I’m sharing the website and book you recommended with readers: The work of Dr. Thomas McPherson Brown – http://www.roadback.org and the book The New Arthritis Breakthrough.
My 12 year old daughter was diagnosed with JDM last 15 months ago. I would love to receive your Essay at my email address. We have also reduced dairy to almost nothing and gluten quite a bit with remarkable amounts of fatigue and brain fog disappearing. Thank you.
I sent you an email, Elena!
Hi. Your article on DM was very interesting. I was diagnosed with DM in 2013, at one point I was so ill that I felt hopeless. It’s been 7 years since my diagnosis and still unable to walk or raise my arms above shoulder level. Please email me your research— maybe I can to find some answers. Thank you.
I sent you an email, Sharon!
Thanks for sharing your story and this article! I would love to see any other research you have available. Thanks!
Thanks Maggie, I sent you an email!
Could you please send me your research essay on gluten and DM? I loved your article and thanks for sharing!
Yes, I sent you an email, Laura! Thank you!
I am 70 and was recently diagnosed with DM. I have undergone a large number of follow-up tests, etc. checking for underlying causes and nothing so far. I believe it was caused by chemo medication cream prescribed for pre cancerous spots on my face and chest as there were no symptoms prior & and developed during the cream process. I have just read tonight before finding you that a gluten free diet helped some others. Please sent me your research paper. I am sorry you had such a long journey but very happy you found your answer and are reaching out to others.
Thank you so much Sandy, and I’m so sorry to hear about your DM diagnosis. I sent the paper to your email!
Hi Jenn,
I am so glad that I found your article! I have been struggling with DM for 11 years now. I have been on numerous medications and none of them are working. I am definitely interested in learning more. Please send me your research paper and any other information you can share. Thank you so much!! I am hopeful that this is the answer I have been searching for.
I sent the documents to your email, Sarah! I’m so sorry about your 11-year struggle. I can’t imagine! I’m always here if you have any questions or want to chat. Best of luck!
I was looking for information on DM and I ran across this. I was told by a rheumatologist that I have DM. It started with a rash on my face that the dermatologist could not get rid of A blood test showed an autoimmune disease. The rheumatologist said I have DM. She gave me an anti-inflammatory diet, and it says nothing about gluten. For about a year I had nothing but the skin redness in areas and the red around my fingernails. Now I am experiencing pain in my hips and upper thighs. The rheumatologist said it is probably arthritis. The pain reminds me of having done a huge workout after being inactive for a long time. I am glad I found your site. I am going to try the non-gluten idea. Than ks for sharing your information.
Hi Lois, thanks so much for your comment! It almost sounds like the DM is progressing with your hip and thigh pain? How you describe your pain–like doing a huge workout after not doing one for a long time–is exactly how my DM felt when it first came on. I hope going GF provides you some relief! I would totally recommend food intolerance testing if you can afford it to see if your body is reacting to something. Rashes can be telltale signs of a food reaction, especially an intolerance. I wish you the best of luck and I’m always here to chat if you have any questions or need support!
Could you please send me your research essay on gluten and DM?
I sent you an email Ann, let me know if you didn’t receive it!
Hi all
I was diagnosed with DM at the age of 54 in 2018. I was an endurance athlete at the time, running 10 k’s during my lunch breaks at work. I first got a red/violet rash in face, chest, neck and hands areas. Two weeks later strong but always symmetrical muscle aches started; a feeling like having weights attached to arms and legs. Another two weeks later I couldn’t run anymore and had to stop after 2-3 km. I was feeling tired like after a marathon.
My blood values were through the roof with CK being in the thousands (90-220 is normal). I was immediately diagnosed with DM and put on Prednisone and MTX (Methotrexate). MTX did not kick in and Azathioprine was tried. I got stomach issues days after starting and we stopped again to stay with Prednisone/MTX. After one year on Prednisone and MTX I was on constant stomach pain & cramps and ended up in hospital. There they operated and found the blood supply to my small bowl had stooped. Large parts were pale & leaky and had to be removed. I got more complications with ulcers, more pale areas, more surgeries. During this time I was fed intravenous and on high dose of Prednisone (up to 1 g/day) and whatever other drugs. I was deteriorating every day and down to about 40 kg (I’m not exactly small with 184 cm or 6+ ft). I had lost all my muscles and was unable to move myself in bed.
As a last idea the doctors tried IVIG (Immunoglobin therapy). That kicked in immediately. After days I started to move legs and arms. Three weeks later I could stand up again with support. Four weeks later I started to walk again on a frame. Eight weeks later I left the hospital to go home. My doctor wanted to put me back on drugs but I could convince him to try an exit strategy. We reduced Prednisone by 1 mg per month watching blood values, feeling and visual markers. I’m now drug free for a number of months without any flares.
About one year ago I had my last surgery (reversal of the ileostomy). I had to learn to walk again and found a gym with trainers that had a background in rehabilitation and physiotherapy. I train in the gym 3-4 times a week since last August. I started running again. My weight is now back to 66 kg. I’m still skinny but I’m all I muscles. I’m also back to work but in a different position.
What caused it in my case and what else happened? As for most of us I only have suspicions. Number one factor in my case was surely stress. At the time I spent six month per year in the air making about 400-500 thousand flight km per year. Number two of my candidates was heavy metal toxification (amalgam fillings). Six months before the outbreak I had a tooth with an amalgam filling cracking. I’m certain I swallowed parts of the filling. This all happened two days before another four weeks trip to Europe and the dentist recommended to wait until return with the removal of the tooth. So another four weeks exposed to whatever leftovers of the filling were still there. By the way, I later had all my amalgam fillings removed.
When I got diagnosed I immediately changed my diet. I excluded gluten, dairy, red meat but this had zero effect in my case. As with most autoimmune diseases there is often more than one trigger. There can be many causes from deficiencies (vitamins, minerals), toxification of any kind, stress, genetic issues and any combination of those. It will need an integral medical approach to find the root causes and it often takes years. To find the triggers you need to search first. And it’s not like finding an allergy. Typically, there is no allergic reaction. Assuming one trigger is coming from deficiencies or toxification than it is more likely a build-up process over many years until your system reaches an overflow point. Now you need to remove the problem by e.g changing your diet and/or life style. In case of toxification the process of detoxing itself can take years. You could say I’ve done a hardcore detox by losing all my fat and muscles but it was almost killing me not recommended. And once your system is clear the last part comes. You need to re-train/re-configure your immune system so it stops attacking you. This quiet likely will also take many years. I’m still on this road myself. The best way to do this is probably via IVIG therapy. Here you get healthy antibodies taken from the blood plasma of healthy donors. Their task is it to re-configure, train and boost your own immune system instead of suppressing it. Unfortunately this is very expensive and therefore rarely offered. I’m lucky to live in New Zealand where health care is largely cost free and IVIG is covered by the system.
Summary:
Don’t accept the diagnosis to be sick for the rest of your life! Autoimmune diseases like DM have one or multiple root causes and you need to find and correct them. Check for vitamin/mineral deficiencies, check for toxification. Try a controlled fastening period as this usually triggers food/diet issues. Search for AIP (autoimmune protocol). Autoimmune diseases in most cases have more than one trigger! Change your life style. Stress is very often a main trigger. My body today reacts immediately to stress and this long before my brain or consciousness recognizes this as stress!. I still get stomach cramping, pain periods, diarrhea immediately. I have to exercise regularly and need to stretch daily (wouldn’t call it yoga)! Today I can assign my muscle aches to the exercise I did earlier. Recovery and muscle rebuilding feels extremely slow but the progress is constantly there.
Gluten wasn’t the problem in my case. I’m eating gluten again and most other foods. But as of today I eat almost 100 % organic. As a matter of fact I grow most of my own vegetables and fruits. I stopped drinking alcohol (not that I ever drunk much) and reduced heavily on meat. Processed meat/food is reduced to the absolute minimum. And I started cooking and baking, very much welcomed and encouraged by the rest of the family.
Holger, I can’t thank you enough for sharing your story, which I know will help others who come across it here. I’m so sorry for everything you’ve been through, and I’m so happy to hear how much better you’re doing now. I 100% agree that there are often multiple triggers in an autoimmune diagnosis, and they won’t be the same for everyone. For many of us, it can take years to uncover what these triggers are or may be, and in some cases, there’s never a definitive answer. Thank you again for sharing and giving others hope, and I wish you continued healing and strength!
I was diagnosed with DM in 1983. I still had young children and was determined to live to take care of them. I took high doses of prednisone and followed a diet in a book by Edgar Cayce. Vegetables, fruit, protein such as chicken, beef, eggs and low fat. No alcohol or sugar or coffee.
The inflammation subsided and I have been able to live a normal life. I hike and exercise. I would love to see your research. Now in my 70s, I am careful with my diet. I eat little bread but perhaps it would be best to let it go. Thank you for your post. There is so little research or understanding of DM. It is wonderful to hear your story. I have always believed the diet helped me, and according to your experience, it probably did.
Thanks so much for sharing your experience, Philipa. I sent you an email with my research. I’m so glad you’ve been able to live a normal life even with a DM diagnosis–I don’t doubt that it’s thanks in part to your awesome diet! Any herbalists I have talked to have advocated for consuming more healthy fats in my diet, so that’s the only thing that contradicts with your diet. Sugar is a big one for inflammation. I have to be careful about my caffeine intake too, and I don’t consume alcohol at all, which can also cause inflammation. I hope you continue to do well!
You are welcome Jenn. I realize there is one thing I did not mention. This is my use of a “castor oil pack” also recommended by Edgar Cayce. This is castor oil on a piece of flannel which is placed on the abdomen, covered with a towel and along with that, a heating pad placed on top of the towel. Instructions for this pack are on the Cayce website. After I was well again for many years, I did not follow the diet. However, I am back on it (except I like you also eat oils). I think this very strict diet was good during the time when the inflation was so high.
Always keep looking for solutions. My best wishes to you,
Philipa
Very interestng… I have had a couple herbalists recommend castor oil packs, but not for autoimmune stuff, for menstrual cramps 🙂 Thanks so much for sharing this information and your story, Philipa!
These pack are used for scleroderma in the Caye readings> Here is info from their website: The Cayce readings recommend castor oil packs in general to improve assimilations, eliminations, and circulation (especially of the lymphatic system) and in particular to breakup adhesions of the lacteal glands. Although this therapy may seem unusual, it is one of the best documented. It was recommended, as part of a holistic approach, for epilepsy, gallstones, scleroderma, constipation (and other intestinal conditions)—just to name a few.
I would like to learn more about
Gluten free diet. 74, have had Dermatomyositis since 2011. I am only taking Methotrexate, but
am having swelling under eyes and just happen to see your article and would be willing to give a try. My ophthalmologist
says it’s Fat 😧. Thanks for sharing.
I’ve had poly myositis since 2016. I’m so interested in learning the connection between gluten and DM/PM can you send me the information on you and those with poly myositis and DM that had improvement with gluten free so far 5 days GF and praying for success. So glad this helped you and I’m excited it could help me. Thank you
I sent you an email, Liz!