Eileen’s Story

Posted on by

photoe of feet on the beach

“I’m sitting on a beach…staring at the sky and letting the tidal pull of my own future wash over me and draw me forward.”
~ Roseanne Cash

Onset
One morning, one year ago, I put on my shoes and noticed the side of my foot hurt, right at the base of my pinky toe, and I thought, ‘Well, that’s weird,’ and went to work. Then a few mornings later, I got out of bed and it hurt to stand on that foot; the whole ball of my foot was tender. So, I went to work and gave myself a detailed foot and calf massage (sometimes it helps to be a massage therapist; sadly this time it didn’t diminish the pain).

A few days later, the pain spread to my other foot, and I tried all sorts of things over the coming weeks – icing my feet, Epsom salt baths, orthotic supports, stretching, chiropractic adjustments, acupuncture, getting worked on by other bodyworkers. Nothing helped, and soon I was taking ibuprofen to get through the workday, and I simply hoped the pain would go away with time. Shoes became uncomfortable because they felt small on my feet, so I switched to sandals.

Then the pain moved to my hands – one finger at a time would stiffen up; I couldn’t bend it, and any pressure hurt; it would stay swollen for a few days, fade away, and another finger would swell and take its place. As soon as it hit my hands, I knew what was happening, but denial’s a powerful thing. I took more ibuprofen and kept working, creatively avoiding using whichever finger was swollen that day. Then one night, my shoulder seized up, with such excruciating pain that I couldn’t sleep and I couldn’t move without gasping and crying. Denial was over. It didn’t take much research to learn that I was a textbook example of rheumatoid arthritis.

Over the next few months, the joint flares ricocheted around my body unpredictably, putting a wrist into a splint one day, a shoulder into a sling another; freezing my knee so that I couldn’t walk one night, freezing my jaw so that I couldn’t eat on another. On top of that, there was a growing stiffness in my body, especially in the mornings, where it hurt to move at all. Some stiffness would last the entire day; I felt like I was 90 years old, instead of 43. I became more and more tired, and also developed severe dry mouth, which is a symptom of another autoimmune disease: Sjögren’s syndrome; that’s when I learned that autoimmune disease sometimes comes in pairs. I cried every day, as my husband held me and kissed my tears away.

I had two choices: (1) take the conventional medication of steroids and immunosuppressant drugs, with all the side effects that come with them, and the knowledge that I would be on medication for the rest of my life, or (2) seek an alternative. I chose the latter.

Dietary Healing
I spent hours on the internet, researching alternative solutions and every website led me to a discussion of leaky gut syndrome, and healing through diet. This didn’t come as a surprise to me. I had digestive pain on and off my whole life, and it had gotten worse in the prior year. The notion that we are what we eat makes sense to me; food is the one medicine we all take every day to survive. Although I ate a relatively healthy diet, it was far from perfect, and included all the big culprits: wheat, sugar, and packaged foods (the fact that they were bought at the health food store notwithstanding.)

So, I began my experiments. First, I gave up sugar and wheat, and I felt better for a few days, but the pain returned. Then I tried a rotation diet, which had no impact whatsoever. So, I tried an elimination diet, removing foods one at a time. I always got better for just a few days, before the pain returned again. It seemed my body reacted to everything I ate, and I started to fear food. That’s when I learned of the GAPS Diet by Dr. Natasha Campbell-McBride. She says this about food allergies and intolerances:

“Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if one had enough resources to test twice a day for two weeks, they would find that they are “allergic” to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever removing different foods and never get anywhere.”

That seemed to summarize my experience completely. The GAPS Diet is a temporary diet, designed to heal your gut, and therefore your body, with the expectation that you can transition off the diet once your body has healed. It’s a very restricted diet, so the fact that it was temporary appealed to me, and when I compared a lifetime with an autoimmune disease to two years on this diet (the average time it takes an adult to heal), that seemed like a very fair trade.

Results:

  • Within a week of starting the diet, the flares began to diminish in number and intensity, and my shoes fit again.
  • Within a few weeks, the severe dry mouth went away, my bodywide stiffness lessened, my energy increased, and I returned to work part-time. (Caveat: I didn’t have the strength for massage therapy, but I specialize in lymph drainage and craniosacral therapies, which are light touch healing modalities. I returned to work in that capacity.)
  • Within a few months, flares became rare, and when they did come, they were moderate. My bodywide stiffness became intermittent, usually worse on days when storm fronts moved through town. My energy levels returned to normal and I went back to working full days.
  • My health improved in other ways as well. For the past 3 years, I had been experiencing perimenopausal symptoms: menstrual irregularity, water retention, mood swings, headaches, and cramps. They all went away with this diet. I also had chronic styes around my eyelids for the past decade, and they cleared. People began to compliment me on my skin, telling me it glowed. And all digestive pain dissolved.
  • 5 months later, what remained was a low-grade inflammation in my joints, preventing their full strength and flexibility, but with improved range of motion and significantly less pain than prior to the diet.
  • I was 99% compliant on the diet, the only exceptions being when we traveled and I couldn’t control all of the ingredients in my food. Pain is a strong motivator; I wanted relief too much to cheat.

Complementary Treatment
You’ll notice that my website talks about healing through diet…and more. This is because the authors of the healing diets all recommend complementary practices to support the healing process. It might be exercise, detoxification, supplements, or sunshine. I’ll talk about their recommendations more when I contrast and compare the diets in my next blog post. For now, I’ll tell you what I have done (and continue to do) to support my dietary healing:

  • Over the summer, I sunbathed for 30 minutes daily whenever possible, to obtain Vitamin D. Over the winter, I take fermented cod liver oil for the same purpose. There is a link between Vitamin D deficiency and autoimmune disease.
  • I take the following anti-inflammatory supplements: black currant oil, curcumin and cat’s claw. Combined with my diet, these supplements have allowed me to drop to just one aleve tablet twice daily.
  • Magnesium is very hard to get through food, so I take this supplement to boost my levels and prevent the leg cramps that are common with autoimmune conditions.
  • The GAPS Diet does recommend probiotics and digestive enzymes, but gives you the option of getting them through food or supplements. I chose food: raw unpasteurized sauerkraut doubles as both.
  • I meditate daily. When I was in the most pain physically, it was the hardest to bear emotionally. Meditation was the one thing that made me feel better. It wouldn’t alleviate my physical pain, but it replaced emotional turmoil with a feeling of peace. I’ve come to love that feeling, so even though I don’t need it for the same reasons now, I continue to meditate every night.
  • I’m part of a wonderful community of bodyworkers, and they, along with my clients, family and friends, have been beautifully supportive of me during this process. My body is too sensitive at this point to enjoy receiving massage, but I found I wanted the comfort of turning my hurting body over to someone else for an hour, to be nurtured and cared for by another professional. I chose the gentleness of energy work. These sessions weren’t curative, but they were supportive and always left me feeling lighter and loved.
  • I try to do something detoxifying at least a few times per week: juicing, detox baths, lymphatic self-care, coffee enemas, etc.
  • Exercise has been a challenge. When the rheumatoid flares were at their peak, almost any activity would set them off. Now, I find that I enjoy exercise, so long as its moderate. My favorite routine is the exercise bike, followed by gentle yoga. As someone who used to love strenuous hiking, kayaking and strength training, I hope to get back to those activities someday. In the meantime, I’ve learned to accept what my body needs now, which is gentleness, not strain.

Next Steps
5 months into the GAPS Diet, I hit a healing plateau. I felt much better than I had before, but was no longer moving forward. In my research into alternative healing, I learned about a drug called Low-Dose Naltrexone (LDN). It’s a very mild medication rarely used by rheumatologists, but recommended by alternative health practitioners such as Dr. Joseph Mercola and Dr. Thomas Cowan, and they recommend its use in combination with dietary healing. A 50mg dose of Naltrexone was originally created to help heroin addicts through withdrawal. Suprisingly, they learned that a low dose of this medication (1.5 – 4.5mg) helped regulate the immune response in people with autoimmune disorders. At such a low dose, there are no side effects. Some people even go into remission on this drug. That didn’t happen for me, but I would say the LDN reduced my daily pain one full level, from medium-low to mild. It’s enough of an effect that I’ll keep taking it, but I need to do something else to relieve the inflammation altogether.

So, what’s next? At the peak of my rheumatoid pain, I felt like huge waves were rocking through my body and knocking me onto a rocky shore. Now, I can still feel the waves, but they’re growing smaller and smaller. My goal is to reach “still waters”. I’m going to continue with the GAPS Diet, but I am adding the Paleo Autoimmune Protocol. My hope is that I will be able to identify the remaining foods that are causing the last of the low-grade inflammation.

Simultaneously, I’m starting this blog. I want to join the growing testimonials of people with autoimmune conditions who are healing through diet. This journey has been life changing, and I want to share what I’ve learned (and continue to learn) along the way. In pharmaceutical trials, a medication is considered effective if it reduces symptoms even by 25%. Dietary healing has reduced mine by about 80%. I went from living with an excruciating level of pain, to a manageably low level, and more healing will come.

Tom & The Turtle
I realize this post is long, but I want to end it with two photos. The first is my favorite picture of me and my husband, Tom. This is the man who kisses my tears away, and far more often, makes me cry with laughter:

photo of author and her husband

And this is a photo of us scuba diving this summer, one month into the GAPS Diet. We had planned the trip a year in advance and chose not to cancel. We drove from NC to FL, carrying a cooler of food with us, and renting a condo with a kitchen, so that I could stay on the diet. Although the healing had begun, I was still experiencing flares, and the road trip was difficult. At the same time, we both needed to experience something beyond my illness. Scuba diving with sea turtles was on our “life list”, and it was worth the struggle, to experience this wonder and joy:

author scuba diving with sea turtle

Advice from a Sea Turtle:

Swim with the current
Be a good navigator
Stay calm under pressure
Be well traveled
Think long term
Age gracefully
Spend time at the beach

(quote from a magnet we bought in Florida)

~~~
This post is linked to the following blog carnivals:

Natural Living Monday, Fat Tuesday, Traditional Tuesday, Family Table Tuesday, Healthy Tuesday, Allergy-Free Wednesday, Healthy 2Day Wednesday, Party Wave Wednesday, Real Food Wednesday, Wheat-Free Wednesday, Whole Foods Wednesday, Wildcrafting Wednesday, Tasty Traditions, Keep It Real Thursday, Simple Lives Thursday, Gaps-Legal Thursday, Fresh Bites Friday, Fight Back Friday, Weekend Whatever Link-up, Sunday School,

20 thoughts on “Eileen’s Story”

  1. Congrats on your success thus far, looks like you’ve come a long way. My husband is dealing with chronic allergy/sinus problems and arthritis. I’m already primal/paleo and he’s been resistant til now, hoping he’ll get some relief after removing the sugar and wheat.

    Reply ↓

    • Thanks Sandy. Everyone has their own timing for when they’re ready to make a dietary change. It took RA to make me switch. My husband has been very supportive of my process, but didn’t join me in eating this way until the past month. He doesn’t have an autoimmune condition, but he does have health issues he’s hoping to resolve. (Don’t we all?) Congratulations to you for making the shift yourself, and I wish you and your husband both, health and happiness!

      Reply ↓

  2. Thanks for sharing your testimony. I’ve been treating an autoimmune disease with a strict anti-inflammatory diet and LDN for 3 years. I believe that those two things have helped me more than all the other things combined. Just in the last few months I’ve added kefir and homemade fermented kraut to my diet and they seem to be making a positive impact on my digestive system. I’m also a LMT :) Blessings!

    Reply ↓

  3. Eileen,

    OH how I can relate to what you describe! I had RA so bad, I expected to be in a wheel chair soon. One of the worst things was being very sleep deprived all the time due to pain.
    I wanted to make you aware of something I used in addition to GAPS. I saw a practitioner who works with herbs. She gave me Myristin, which heals the t-cells. I needed 6 bottles of it, but now I am completely off all pain medication, no morning stiffness and I just recently biked 28 miles and did a very steep hike with no after effects the next day. I also do T-Tap which has exercises tailored to people with autoimmune diseases that are anti inflammatory and help drain the lymph system.
    All the best to you,
    Marietta

    Reply ↓

  4. My daughter’s experience mirrors yours. RA had her bedridden for almost 8 months. She went on a Weston A. Price diet with fclo, high vitamin butter oil, 5 gallons/week raw milk from grassfed A2 cows; lots of seafood, raw liver (4 oz. per week), meat on bone, GAPS style. What she did not do was eliminate any food groups except vegetable oils (which are more like eating plastic than like eating food), no white sugar, and minimal processed grains (but not total avoidance). I had read glowing reports of elimination diets a la GAPS intro, and auto-immune paleo, but was wary because these diets seem too extreme possibly triggering nutritional deficiencies. My daughter healed slowly on this protocol – taking 10 months before she could return to school. She has been on this diet for 25 months now and just made a milestone of finishing her third semester back since her illness without missing a single day of class. She is looking forward to life instead of agonizing daily pain.

    From reading cheeseslave.com and Matt Stone 180 degree health, many people report problems on restrictive diets. After initial improvements, continued food restrictions cause hypothyroid and metabolism problems, making healing difficult and causing additional symptoms.

    My daughter used LDN briefly but had side effect, which is unusual, so she was unwilling to continue. The one strategy for RA that seems promising is bee venom therapy. I have been communicating with several people using bee stings (30-40 stings per day) who have experienced tremendous improvement with their health, including joints straightening.

    Reply ↓

    • Thanks for sharing your daughter’s story with us. She’s lucky to have you! One aspect to the Gaps Diet is that it is designed to be temporary rather than lifelong, which is one of the reasons CheeseSlave recommends it. It’s also a nutrient-dense diet, so there’s no concern of nutrient deficiencies, providing you choose your foods well (lots of high quality meats and vegetables). The Full Gaps Diet doesn’t actually feel restrictive to me at all. I agree, however, that the Gaps Intro & Paleo Autoimmune protocols are very restrictive, and my feeling is that they are best followed only for a few months, to discern personal food triggers. I understand your reluctance, but done safely, these diets often provide people with the “missing piece” that takes them to their next stage of healing. I wish your daughter wellness in every way. I had heard of bee sting therapy for regular arthritis but not RA. The world is a fascinating place, and it’s such a gift to be able to hear each others’ stories.

      Reply ↓

  5. I just started the GAPS intro diet yesterday because I am sure I have RA that began about 2 months ago. It started in just one finger knuckle, which is still swollen and somewhat painful, and spread to other fingers, wrists, and near my elbow joints. I’m so happy hearing how others have had such success on GAPS with RA! This makes me feel like I am going in the right direction, and I’m seeing improvements already. I’ll be going to my first guided meditation next week because I knew I needed the peace of mind to reduce my anxiety, stress, and outright terror about having an incurable disease. I look forward to more posts about your recovery, and hope you make it to your goal!! You are an inspiration to me. THANK YOU!

    Reply ↓

  7. Pingback: Weekend Whatever Link-up (2/7)

  9. Howdy!!!! This gives me hope! As a mother and for my daughters future! I/ we struggle with Diet, supplements, restrictions, etc. my daughter was diagnosed with Poly JRA at the age of 9. She will be 13 this Sept. With her being so young I fear/ question how to fully heal her. For her age she is an amazingly strong and well educated with diet etc. she is GF, EF, DF …. We eat Organic and mostly non GMO. Still, she is young and she has her days. This way of eating would not be her choice. Granted, I know she knows the difference between this way & what drugs such as enbrel and methotrexate make her feel. She also takes LDN. I know that lDN has allowed her the time to heal slowly and change diet and be off all Ned’s for the last 2 years. Still, she suffers from small flares , headaches and fatigue. I know there is more I can do for her …… But it’s timing and age. She is so thin. Any help or suggestions would be much appreciated! Xo. Thank u. Your story is amazing! Shelsea

    Reply ↓

    • First of all, you’re doing a lot already. You’re an amazing Mama, and you should feel proud! Thanks so much for sharing your daughter’s story. Here are a few suggestions: (1) Subscribe by email to this blog, so that you’ll receive notice of the articles I post. Since my focus is autoimmune disease, all topics should apply to your situation. There’s a little box in the right-hand column where you can sign up. (2) Here’s a link to some weight gain shakes. If you scroll down the page, you’ll see one called Paleo Autoimmune. That should meet your daughter’s food restrictions. If it’s not sweet enough for your daughter, feel free to add some raw honey or organic juice. (3) When you say GF, is that gluten-free or grain-free? For many people gluten-free isn’t enough. (4) Regarding the eggs and dairy, have you ever done a food challenge, to see how she tolerates these foods? Some people can eat them, so I wouldn’t leave them out of the diet unless you know for sure she has an inflammatory response. (5) Is she still eating nightshades? (Tomatoes, Peppers, Potatoes, Eggplant and Pepper Spices (paprika, cayenne, chili powder, etc.) For me and many others with RA, those cause a lot of joint pain. (5) Lastly, if your daughter wants to talk to someone who is also on some food restrictions, get in touch with this blogger. Her daughter recently wrote an article about her experience, and she’s 12 years old.

      Reply ↓

      • Perfect! Thanks! Signed up! I will look into the weight gain shakes! Great stuff! We have done IgG and IgE allergy testing & several food logs! She seems to have a reaction to eggs, DAIRY, rye, spelt, wheat, gluten etc. The tests showed mild to soy, corn, yeast. When we talk about further elimination, she gets very angry! I am 100% positive this stems from the gut…… as her little brother “had” (he just ended up on the same diet as Madi) psoriasis/eczema, along with loose stool for almost the first 3 years of his life. He is good now. They eat the same. We eat quinoa, organic rice. Organic NON GMO corn & limited soy. She is currently being treated for leaky gut, Strep (I noticed at the same time each year, she would get very sick with strep and flare for months after) and was positive for 2 strands of lyme. In the past blood work she showed Hpylori and Epstein bar. Funny thing is the rest of her blood work pertaining to RA has always been good. SED, -ANA, -RH, CRP’s …… even at her worst – which almost put her in a wheelchair.  In the beginning she had lost all ROM and was so swollen in her lower extremities that a podiatrist scheduled and diagnosed her with sub-tarsal coalition. We have come along way! She has gone from tossing herself out of bed and crawling on all fours to an active pre teen. She does year round swim team and is a trooper! She has ONLY temporary pain/swelling in fingers and one wrist that at one point developed a large palpable bump on the top! She has some limited ROM that I think is perm in her wrist. She does not have daily pain. She does however have some sensitivity when I massage deep etc. I fear & obsess over possible damage and question and pray that I am doing the right thing for her.

        Oh as for the nightshades. Yes. I should look into that. Organic potato. Peppers for sure (as I am half Hispanic). Salsa too! Eekkks!

        Reply ↓

  10. So great to hear your story. It really gives me hope that one day I can maybe make this dietary change. I am 18 years old and I was diagnosed with RA when I was 16. It has been a hard road since my pain was so high Ive tried all types of medicine including methotrexate and enbrel just so I can find some sort of relief, doctors have also had be on prednisone for years now its only thing that calms my joints. I am desperate for making some dietary changes since steroids are making me gain weight and thinking about a diet my mom proposed which is basically aiming to eat alkaline foods. I want to try different diets but its very hard being away at college and the limited cafeteria food available to me. Any suggestions?

    Reply ↓

    • Chloe, thanks so much for writing. I would recommend taking it in baby steps. Go gluten-free first. Gluten has become a problem for so many that your college likely has a gluten-free menu (ask if it’s not posted). For many people, they notice pain reduction just removing that one ingredient. Then, if you decide to take the next step and go paleo, here are two resources for you: (1) A good article about how to maintain a paleo diet on campus, and (2) An entire blog written by college students who are paleo. They know the tricks on how to make it work. It’s awesome that you’re considering a dietary change. I know it’s hard, but the rewards are so worth it – you deserve to NOT be in pain. Gentle hugs to you, my fellow RA warrior.

      Reply ↓

Leave a Reply

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

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>