Beating Dermatomyositis and IBS with a Paleo Diet

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By: Paul Hile & Grace Osborne

 

Months after my fiancée (Grace) and I had begun dating, a large deer, not much of a high jumper, leapt through our windshield on the way to her folk’s house in west Illinois. The accident was a bloody mess, and the blood wasn’t ours, thankfully. Or… err…not so thankfully. Well, needless to say, there were several days of bitter soreness and dozens of showers dedicated to removing the glass from our hair. But, as time passed, the few cuts we had began to heal and as I continued to feel better with each passing day, Grace was getting progressively worse. In and out of ten different doctor’s offices, she was pricked, poked and prodded until she was finally diagnosed with a rare autoimmune disease: Dermatomyositis. She was 19.

For over a year, she lived day-to-day, coping as one does with a muscle degenerative condition. As I watched my young, athletic girlfriend loose her body and spirit to a cocktail of toxic medication, including prednisone and methotrexate, and an illness that weakened her by the minute, I too let my own health deteriorate, though, without any coherent reason.

At its worst, Grace’s autoimmune disease took her from being a triathlete, swimmer and life-long yoga practitioner to stationary, nearly immobile on her couch. By the end of summer, 2009, Grace could no longer walk up the stairs by herself, wash her own hair, get off the couch without help, or even stand for longer than a few minutes. On one occasion, as she and I stood on the bank of the Mississippi River, only five minutes from her house, enjoying a sunset, her legs gave out from underneath her and she fell hard. But, this didn’t stop her; she kept on chugging.

As the prednisone, methotrexate and azathioprine worked their magic, Grace gained nearly thirty pounds, and so did I. I stopped working out, stopped caring what I ate, slept far too little and was altogether too stressed. In a matter of months, I went from 155 pounds to 185 pounds. Around the same time, I was also ‘diagnosed’ with IBS, something I had dealt with for a lifetime.

To combat all of this (rapid weight gain, IBS, horrible blood levels) Grace and I tried to live a “healthy” life style. We both tried a vegetarian method of eating, and within weeks, we felt worse than we ever had before. Something desperately needed to change, but we couldn’t figure it out, so we kept walking uphill.

Eventually, we stumbled across the Zone diet and did our best to weigh and measure our food, though, with some confusion. We didn’t cut out wheat completely, but we did limit it. With a lower carb intake and a steady, high dose of medication, Grace’s muscle pain started to go away, as did the rashes on her hands, and her doctor proclaimed her in remission. I took up running and soon registered for the 2011 Kentucky Derby Marathon, intent on raising money and awareness for Juvenile Myositis. On one particular day, Grace even managed to run an incredible 2 miles with me. All seemed to be going well, but looking back, it was just the calm before the storm. While I was running more and leaning out, I still wasn’t feeling well. By race time I had raised over $2,500 but I wasn’t able to run the entire race. I did finish, but with a time I don’t care to mention. The next week my body was sore, tired and angry. Frustrated, I ditched Zone and ate what I cared to eat. Both our diets faltered, actually, and that summer Grace’s Dermatomyositis relapsed and we were back to square one. Again, we needed a change. We were going in the wrong direction.

In the summer of 2011, Grace and I were introduced to the Paleo lifestyle thanks to her brother, Luke. Grace—a trained biochemist and pre-med student now conducting research at the CDC in Atlanta—was immediately convinced by the overwhelming scientific evidence contributed to Paleo, and began to follow the diet fairly religiously. Though I was originally skeptical, and all too fond of far too many baked goods (which Zone had still permitted me to eat, in moderation) I too took the Paleo vow, and ate a strict Paleo diet for thirty days.  On the drive from her house in Illinois to our college in Michigan, she read aloud Robb Wolf’s book, The Paleo Solution, rereading pages of the more scientific parts so I could understand them (God bless her).

Two weeks into eating a strict Paleo diet, Grace’s doctor called to inform her that her blood work was once again normal. By the end of the thirty days, we had both lost over ten pounds each, and were feeling better than ever. My stomach problems, once diagnosed as IBS, no longer existed. Grace felt like moving, she smiled, which was a true sign that things were getting better.

Now, Grace is doing physical therapy to regain muscle strength and flexibility. She still can only lift around 5 pounds, climb only a few steps before feeling tired, and is pretty exhausted at the end of the day, but the fire is back in her eyes. She is continually researching autoimmunity and Paleo, and has developed a menu for her own needs, including bone broth, zero dairy, no nightshades or eggs, mineral water, high protein and massive amounts of veggies.  We both sleep in the pitch black and try to get around 9 hours of sleep a night.

I’ve been Crossfitting at home and local gyms (not yet able to get into a CrossFit box) and have felt better than I did when I trained for the marathon. Each of us is down nearly 30 pounds, and have completely adopted and welcomed the Paleo lifestyle into our lives. We swear by it, even to our family and friends who think we’re either crazy or wrong for eating the way we do.

There’s much speculation over how Grace contracted her autoimmune problem, but it is what it is: speculation. The reality is the cards have been dealt and we’re playing with what we got. Grace hopes to receive her medical degree in the next several years and register herself as a Paleo physician. I hope to join a CrossFit box when I move to Atlanta and compete in the 2012 season. One day we will certainly be able to look back at all of this as our medical history, and that makes us truly happy. For now, we take comfort in sharing Paleo meals when we’re together, working on our new website (thepaleopair.tumblr.com) and living happily, one day at a time.

Dermatomyositis

Before (Grace on high doses of Prednisone)

After

 

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  1. Gavin Morrice
    March 19, 2012 at 1:37 am

    Wow! The girls in these pictures look like two different people!

    Best wishes and good health to you both

  2. Lindy
    March 19, 2012 at 2:30 am

    I’m also a paleo autoimmuner in Georgia (Athens)–condition is ankylosing spondylitis. With paleo, I’ve gotten off TNF drugs, methotrexate, prednisone and NSAIDs (along with other crap that was killing me). Amazingly, I’m now back on the trapeze as an aerialist, and my rheumatologist is in disbelief (just shook his head and laughed for 5 minutes after saying, “You’re doing WHAT?!”). You CAN do this! I have a lot of setbacks, but paleo and Crossfit-like exercise gives you a toehold to climbing out of the pit. Way to go! Praying your progress continues!

    • Amy B.
      March 21, 2012 at 6:37 am

      “Amazingly, I’m now back on the trapeze as an aerialist, and my rheumatologist is in disbelief (just shook his head and laughed for 5 minutes after saying, “You’re doing WHAT?!”).”

      This makes my blood boil.
      Instead of *laughing* at you, this doctor should have peppered you with questions about EXACTLY WHAT you were doing that had gotten you off all those meds and back doing something fun and physically demanding. He should have been stunningly curious – if not for his own knowledge, then maybe…*gasp*…to actually, oh, I dunno, HELP some of his other patients!?

      Seriously…some of these docs want repeat business so badly that they’ll stick their heads as deep as they can into the sand and pretend like they never heard of anything non-pharmaceutical actually making a huge difference in these debilitating conditions.

      Please don’t keep quiet, Lindy. If you come across others with autoimmune joint and degenerative conditions, SPEAK UP about your experience. A lot of people will probably laugh, just like your doctor did, but you may also very well get one or two people curious enough to actually look into this, give it a try, and RESTORE their quality of life!

  3. Kevin Cann
    March 19, 2012 at 2:33 am

    Before and after pictures are amazing! Looks like 2 different people. Keep up the great work it is definitely inspirational!

  4. Rich Walkden
    March 19, 2012 at 6:49 am

    I see the word “Dermatomyocitis” and you get my full attention. As a middle schooler I was diagnosed with Dermatomyocitis and it is strange to hear that methods of treatment and knowledge on the subject has not changed much in almost 30 years. Being at the age where kids are developing socially, it was extremely difficult to maneuver through school with my bloated body from the prednisone and other meds. In my adult years since discovering “The Zone” which led me to the paleo lifestyle I have speculated about the effects of gluten and other ingested system irritants and what role they played on the Dermatomyocitis. Not being a scientist, I stopped at speculation. In the article, it sounded like the pros are still speculating as well. Are there studies that have made a link to such things?

    I have been in remission from the Dermatomyocitis since High School. It took me another 20 years to finally settle into my own paleo lifestyle. I gotta say, never felt better.

  5. graywhale
    March 19, 2012 at 6:53 am

    Inspirational! Awesome story and best of luck in the future.

    I am wondering if any helpful readers out there could point me to some more discussion about the autoimmune protocol. There’s not much talk I can find about *why* to cut out those foods. I have Crohn’s and began Paleo, not the auto-immune protocol though, when I was *not* in a flare. I feel great and have no symptoms right now, but wonder if I am playing with fire by not being more strict.

    IIRC Robb’s book just has a little blurb that says ‘if you are autoimmune, follow this protocol’, but doesn’t really get too deeply into it.

    Apologies in advance if I’ve missed an obvious article or something in the FAQ. Thanks!

    • Robb Wolf
      March 19, 2012 at 8:00 am

      It’s in the FAQ for sure. If you are doing well however, you are likely fine.

    • Dana
      March 19, 2012 at 11:59 am

      Gluten seems to be the culprit for many autoimmune diseases. Humans are not supposed to be eating grains, especially in the amounts that we are eating them. Grains are bird food not people food. The Paleo diet eliminates grains, therefore this diet is beneficial to people already suffering from autoimmune diseases.

      Here is a link that touches on the subject.

      http://joanneunleashed.com/1766/gluten-in-grains-central-to-autoimmune-diseases/

      • graywhale
        March 20, 2012 at 6:51 am

        Thanks guys.

        Definite believer on the gluten, am a worshipper of Fasano, etc. I am just mostly curious about the science behind the nightshades and the eggs. Not trying to be selfish or a hijacker — I think there are at least a few others out there wondering more about the autoimmune protocol.

        Robb, you say in the FAQ “Some of these otherwise Paleo-friendly foods have been shown to be problematic in individuals with autoimmune issues”. All I’m looking for is a link or some slightly deeper explanation of the statement. I am about halfway thru the Cordain lecture on youtube, had to take a break cuz of that god-awful doomsday shock-top beer commercial!

        Thanks in advance. I know everyone is busy and please know that I am deeply and eternally grateful for the amazing work that you have done.

        • Robb Wolf
          March 20, 2012 at 8:33 am

          When my PSS lecture comes out in app form (soon) that will talk about these mechanisms. but it’s all the same stuff: gut permeability, bacterial overgrowth, molecular mimicry

          • sara
            March 20, 2012 at 3:52 pm

            Hi
            I am also autoimmune (Lupus SLE) and have been following Paleo (not autoimmune protocol) for almost 3 months now, my body feels lighter but still have joint pains. I was hoping Paleo will help with that too. I tried to do the protocol but it is really seems to be impossible, no eggs? how much meat can a person have during the day? eggs are my option for dinner :)
            If ny one here managed to do that i’d be happy to hear how..and what they ate.

            any way good luck to everyone, Robb loved your book and website and thank you for the information, you are probably a real life saver :)

            Sara

        • Sean
          April 16, 2012 at 6:18 am

          Hi Greywhale

          It’s so great to see so many people being strong with their diet lifestyle / self healing choice on this website. I am strict wheat / corn free and mostly dairy too. I have done a lot of independent study in to the mechanism – and I am sure that Rob’s presentation will be of interest to us all that are trying to understand the causes.

          As I understand it is not just diet and food allergies that is the solution for some people – with Molecular Mimicry regular bacteria and exotoxin from these bacteria in our gut leach through our gut linings damaged by Western diet and then food allergy. (For why we get gut damage look at Breaking the Vicious Cycle “SCD diet” it is similar to Paleo). The mechanism then is that the protein sequence of these “invaders” is the the same as some of our body tissue – the genetics of which vary from person to person.

          The bacteria involved in the Molecular Mimicry reaction vary from illness to illness – the ones I am aware of that bought me to this website are Klebsiella for Ankylosing Spondylitis, Proteus M implicated for Rheumatoid Arthritis and a Streptococcus strain for Psoriasis, Rheumatic Fever and Psoratic Arthritis Arthritis.

          So the bottom line is that diet changes also eliminate food allergens that people may have developed but they also regulate these bacteria in the gut. I read that some can even hide in kidney stones.

          There is an incredible amount of potential for research for many diseases because of these relatively recent findings and I wish you well in your own studies.

  6. Jennifer
    March 19, 2012 at 7:23 am

    I think this is absolutely awesome! I am so happy for Grace! I’m still trying to find what foods work for me, but for the most part my symptoms (undiagnosed, can’t find a doctor who will listen to me) aren’t too bad.

  7. Tuck
    March 19, 2012 at 8:11 am

    It’s a pity Grace’s doctor can’t (or won’t) use google…

    “Dermatomyositis associated with celiac disease: Response to a gluten-free diet.”

    “The association between dermatomyositis and celiac disease in children has been well documented….”

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659927/

    I guess we’ll have to figure it out one patient at a time. Our doctors won’t tell us…

  8. Carlos Morales
    March 19, 2012 at 8:37 am

    That’s a really inspiring story. Congrats

  9. Dr. Mike Tremba
    March 19, 2012 at 11:14 am

    This is a great (and inspirational) story that so many people need to hear.

    Tuck–oh how true–great comment as well :)

    Thanks for sharing Paul and Grace, and wishing you continued health.

  10. Crunchy Pickle
    March 19, 2012 at 12:45 pm

    So happy for you both! Hoping that many more with autoimmune conditions find answers and symptom relief! :)

  11. Charlie
    March 19, 2012 at 1:36 pm

    Thats awesome. Well done.

    • Allison B.
      March 19, 2012 at 5:50 pm

      I wonder if anyone has had any results with healing psoriasis with paleo? How quickly? Any special diet tweaks? Also currently dealing with a guttate flare.

      Have been doing 90% paleo for a two weeks. Otherwise, healthy, 34 year-old. 5’8″ 150 pounds.

      Would love any advice, encouragement, shared experience?

      • Robb Wolf
        March 19, 2012 at 5:52 pm

        Yes, it’ll help.Hake sure to get your vit-d up in the 60 range. That may require pretty agressive suplementation (10K IU/day for a week or two, 5K thereafter). Kick that up to 100% for 30 day. Be amazed.

        • Allison B.
          March 19, 2012 at 6:57 pm

          Thank you! I’ll try that. I just bought some “liquid sunshine”vit. D. on Saturday. 1000 IU per drop. The lady at the health food store said to put it under my tongue but the bottle doesn’t say to do that. Does that matter? Just want to make sure I’m getting the best benefit. Thanks again – I’m enjoying learning from your site!

  12. Rachel Hoyle
    March 20, 2012 at 4:45 am

    This is great stuff. I have one main observation about the Paleo diet discussion here, there is no mention of including offal in the whole scheme of things. The branch of research I am involved in includes foods studies that indicates that modern diets are lacking in the conditionally essential nucleotides (pyrimidine and purine). These are the building blocks of RNA and DNA, and cells of the gut lining and immune response require dietary sources of these nutrients.

    On the food front, the best sources of all 5 nucleotides required are found in offal, such as liver, tripe and kidney.

    If anyone is interested I can share more of this ‘offal’ research.

  13. Merryish
    March 20, 2012 at 5:26 am

    Thanks for the dose of hope. :) The headline got my full attention. I’m also struggling with dermatomyositis (though I’ve got the atypical kind that only affects skin, not muscle). The connection between adult dermatomyositis and celiac/gluten is far more tenuous than juvenile in the literature I’ve found, but I’m hoping that I’ll see an improvement on Paleo. I’ve been totally gluten free and 95% paleo for about two months now, and already my joint pain (unrelated to DM) is hugely improved, I’m off NSAIDS and antihistamines, and down 25 lbs. But I’m really dying to get off the prednisone, methotrexate and plaquenil. My prednisone dose is pretty low, all things considered, but given everything I’ve read here about cortisol, I hate to think what it’s doing to my body after two years… *cringe*

  14. Kirsten
    March 20, 2012 at 8:07 pm

    I wish that they could figure out the connection between trauma and immune problems. My mom got a bad flu and got MS soon after. I had a car accident one November (70 mph, but no bad injuries), and then back-to-back illness early the next year, and ended up with immune reactions to 34 foods, IBS and fibromyalgia which had me in muscle pain and severe fatigue (not able to stand for more than 5 minutes), nausea, near-fainting, sore throat, etc.) I am doing much better without the allergenic foods, and am pretty much paleo (since having that many allergies throws processed foods out the window, as well as gluten, dairy, nightshades, etc.). My family is using a medication called low-dose naltrexone to some good effect. It is used mainly for auto-immune disease right now in the lower doses, although it is not a mainstream medication at this point… And we’re looking the possibility of a sleep disorder… Recovery is such a slow process, but I hope that you and Grace find the healing that you are looking for. Watching my mom bounce back from MS again and again — over 30 years and still walking and gardening — has shown me that it is possible to fight this stuff and live a good life… It’s been a slow climb, but I’ve gotten quite a lot better over time (though I still have to be really meticulous about “self-care”)… It sounds like you are both doing some good things to find recovery… Keep going! Thanks for telling your story :-)

  15. Mark Washburn
    March 24, 2012 at 1:49 pm

    Wow…you two look terrific! Of all the before and after shots I think I’ve looked at over the last year, this one really struck me…you can see such a huge difference, not just in the weight but just the overall health and vitality…well done you guys and best wishes going forward!

  16. PK
    April 16, 2012 at 10:16 am

    Recently diagnosed with AI disease I finally read Paleo (which my son and daughter-in-law have been using for over a year).
    Today, my birthday, I have decided to follow Paleo (autoimmune).
    I do have many questions chief among them is about eggs (yolks/whites or no egg at all)?.
    Is there a site which can be relied on to give factual answers pertaining to the AI version of Paleo?

    • Robb Wolf
      April 16, 2012 at 10:41 am

      I mention the nuts and bolts in my FAQ, also check out Chris kresser’s Personal paleo Code.

    • Paul Hile
      April 17, 2012 at 2:51 pm

      Glad to hear that you’ve made the switch! Paleo works wonders. And like Robb said, there’s info. to help you on his FAQ, on Kresser’s page (and his Paleo code), and all over the Paleo web. Of course, feel free to shoot us an email (paleopair@gmail.com) if you’ve any more questions on Grace’s diet, and the menu she’s developed for her needs.

  17. yogaflo
    September 30, 2012 at 5:38 pm

    What a cute couple. I’m so happy for you!

  18. Michael
    August 24, 2013 at 9:23 pm

    How is she doing now? Is she symptom free? Does she take in meds?

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