Episode 61: Healing Stories 4

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podcast graphic with photos of 4 guestsReal-Life Stories of Reclaiming Autoimmune Health

If you’re a regular listener of my podcast, you know that I start every year with a Healing Stories episode. It features back-to-back interviews with autoimmune warriors just like you! I ask them to share their journey from rock bottom to reclaiming a vital life. In this episode, we talk about Type 1 diabetes, alopecia, lupus, scleroderma, myositis, Sjogren’s, Raynaud’s, hidradenitis suppurativa, and also autoimmunity in general. Everyone’s story is unique, but we also have so much in common. Whatever your diagnosis, I hope these stories resonate and inspire.

Listen to the Show

Show Notes

  • Intro (0:00)
  • Thank You to our Podcast Sponsor – Paleo on the Go (1:27)
    • A frozen meal delivery service, they have a large menu of items for the paleo autoimmune protocol (AIP).
    • Use the code PHOENIX for 10% off your first order.
  • Cristina’s Healing Story (2:26)
    • Cristina Curp has Hidradenitis Suppurativa. This skin condition causes abscesses and boils in delicate areas, such as under the breasts, armpits, groin, etc – wherever there are folds of skin. It’s very painful to the point that it can limit mobility. Boils vary in size from pea shape to golf balls, and they can take months to heal, weeping fluid that entire time. People tend to feel a lot of shame about the condition and it’s misunderstood by many doctors who treat it like a hygiene problem, when it’s really an autoimmune condition.
    • Cristina’s symptoms began when she was a teenager but they were intermittent and the boils were confined to two places – her inner thighs and armpits. After the birth of her first child, the hormone fluctuations caused the condition to spread beneath her breasts as well, and all three places were constantly erupting and excruciatingly painful.
    • She chose the Whole 30 for her first diet/lifestyle intervention and then added the Paleo Autoimmune Protocol. Her flares reduced in length and intensity, and went from daily to weekly to monthly to eventually stopping altogether.  Simultaneously her overall health and energy improved. Now, she’s in full remission. She’s been able to successfully reintroduce many foods, including eggs, white rice, ghee, nuts and seeds. She learned that nightshades are one of her biggest inflammation triggers, so she avoids those religiously. She also watches the amount of carbs and sugars she eats, because too much can lead to flares.
    • Sleep, stress management and exercise are also important for keeping her HS in remission.
    • Resources: The Hidden Plague by Tara Grant, and Podcast Episode 18: Autoimmune Skin Conditions.
    • Cristina is the blogger behind The Castaway Kitchen.
  • Caroline’s Healing Story (21:53)
    • Caroline Potter has Type 1 Diabetes. Many people don’t realize it’s an autoimmune disease.
    • Caroline was diagnosed at age 20, and she was blindsided. She was quite healthy up until that point, and it turned her life upside down. In fact, she was raised in a family that ate healthfully, which made autoimmune disease even more of a surprise. But it also laid the foundation for her to try dietary healing as complementary medicine.
    • The medical advice she got from doctors shocked her. They told her there was no need to change her diet at all; she just needed to take whatever insulin was necessary to balance any sugar she chose to eat. She gained 20 pounds within 2 weeks of diagnosis, and she was constantly sweaty, lightheaded and close to fainting. Her blood sugar levels fluctuated wildly.
    • 4 months after diagnosis, she read Wheat Belly by Dr. William Davis. She then cut all grains and sugars from her diet. She was able to live insulin-free for 18 months. They call this the honeymoon phase that often happens to newly diagnosed diabetics, but it usually only lasts a couple of weeks. Her doctors had never heard of the phase lasting that long before.
    • Caroline is now back on a small amount of insulin, and finds that combining that with a nutritious, low-carb, primal diet, she is able to keep her blood sugar and her health stable.
    • She also focuses on non-toxic living, stress management, saying no, and prioritizing self-care. Learning that self-care wasn’t selfish was a huge part of her personal healing story. Resource Article: Ways I Emotionally Support My Autoimmune Disease.
    • Caroline is the voice behind the the website, Flourish Living (formerly Colorful Eats). She is also the author of the cookbook, The All-American Paleo Table.
  • Linda’s Healing Story (42:23)
    • Linda Hardin has Sjogren’s Syndrome, Mixed Connective Tissue Disease, and Raynaud’s Phenomenon. Sjogren’s Syndrome attacks moisture producing glands, causing extremely dry eyes and mouth combined with extreme fatigue. Mixed Connective Tissue Disease is a combination disorder. For Linda, it includes elements of Lupus (which attacks her organs), Scleroderma (which hardens the skin and connective tissue), and Myositis (which attacks her muscles). Raynaud’s syndrome is a condition where cold weather and/or stress shuts down blood flow to the extremities.  As you can see, Linda is a battling a lot of autoimmune conditions at once.
    • Sjogren’s was the first diagnosis Linda received, and since her mother has the same condition, she was well prepared to manage it. Raynaud’s came next, and she needed to be constantly prepared with gloves and handwarmers so that she could perform life’s daily tasks. Then, over the course of the next decade, various strange symptoms appeared which limited her abilities more and more. Her hands would stiffen to the point that she couldn’t turn a doorknob. She developed shortness of breath, dizziness, high blood pressure and balance problems which caused her to routinely fall down. Her joints hurt to the point that she couldn’t sleep. Her skin felt like it was on fire. It hurt to hug her son or hold her husband’s hand, so she stopped doing both. And she also developed debilitating brain fog. Her rheumatologist dismissed all of these symptoms as a sign of aging.
    • Finally, fate took a hand. Linda almost fainted at work one day and her coworkers sent her to the doctor across the street. The doctor ran a complete autoimmune blood panel and found the markers for lupus, scleroderma and myositis. Linda finally had answers, but they were scary answers because her aunt had died of scleroderma earlier that year. She found a new rheumatologist who took her condition seriously and put her on Plaquenil. Unfortunately, it had limited benefit to her symptoms and high negative side effects (hair loss, uncontrollable diarrhea, and the immune suppression caused her to experience 2 outbreaks of shingles.) She had to stop working, and her illness  led to feelings of depression, anxiety and shame about being sick.
    • Linda discovered the Paleo Autoimmune Protocol 2-1/2 years ago. The improvements were dramatic. Her emotional state and mental clarity improved within one week, and that made all of the diet and lifestyle changes easier. She now works 30 hours a week. Her stamina, strength and flexibility have all improved. She can sew again, when in the past that was impossible. She can walk her 50 pound dogs, when in the past she couldn’t hold the leash. She can hug and hold hands and is still in awe of how supple her skin is. Her blood pressure has reduced, her Raynaud’s has improved, and she lost 35 pounds. She feels like a different woman. And she no longer takes Plaquenil.
    • Linda isn’t a blogger. I met her on my Facebook page, where she was sharing her story in encouragement of someone newly diagnosed with Sjogren’s syndrome. She was kind enough to share her story on the podcast as well.
  • Amy’s Healing Story (1:03:53)
    • Amy Ma has Alopecia, an autoimmune condition that causes hair loss.
    • She was diagnosed at age 11 when she went completely bald. For the next 17 years, she would have intermittent periods of hair re-growth, but never enough to cover her whole head. So, she wore wigs from a young age. Adolescence is a challenge for most kids, but the emotional trauma of losing all of her hair made it even tougher for Amy.
    • Her parents took her to a series of doctors over the first few years, seeking treatment. Amy received cortisone injections in her scalp which unfortunately had no effect.
    • At age 28, Amy went on a low-carb diet for weight loss, which removed a lot of gluten, and she experienced some hair re-growth simultaneously, but didn’t make the connection. Then a colleague recommended The Whole 30. At first, she thought it sounded impossible, but she couldn’t deny the fact that her colleague looked great and had much more energy than Amy. So, she read The Paleo Solution to understand the research and was sold. She went paleo first and then progressed to the Paleo Autoimmune Protocol and in addition to weight loss and energy gains, she experienced dramatic hair regrowth.
    • Timeline: At age 11, she lost all of the hair on her head, including her eyelashes and eyebrows. Over the next 17 years, she had some patchy regrowth fluctuating from 20-30%. When she went gluten-free, it increased to 50%. With AIP, it increased to 80%. Length also improved. Prior to going paleo, her hair never grew past her ears. Now, it’s down her back. She still wears a hairpiece to add fullness when she’s dressing up, but she has enough regrowth now that she’s comfortable going to the gym and the grocery store with her natural hair.
    • Amy did participate in a clinical trial using the biologic Xeljanz, a drug usually prescribed for rheumatoid arthritis. She experienced even more hair regrowth but it disappeared when she went off the medication, and she decided she wasn’t comfortable with the side effect risks.
    • Amy now follows an AIP diet at home but eats regular paleo at restaurants. Because hair loss is her only symptom and it’s delayed, she hasn’t been successful at figuring out food triggers through the reintroduction process. She’s now working with a functional medicine practitioner to troubleshoot further.
    • Amy is the owner of Paleo Angel, an AIP-friendly protein power ball company. Use the code PHOENIX for 10% off your order.
  • Summary (1:26:49)
    • This is the 4th Healing Stories episode, and you can find the others here. I feature a wide variety of diagnoses, but even if your diagnosis isn’t featured, please know that these stories still apply to you. Autoimmune diseases have much in common, which is why they are treated similarly by conventional medicine, and why the paleo autoimmune protocol benefits so many.
    • Many of my podcast guests I meet through social media. Be sure to follow me on Instagram and Facebook, to join the conversation.
  • Outro (1:28:42)

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17 comments on “Episode 61: Healing Stories 4”

  1. Unfortunately, Linda’s story isn’t rare. Most people with Sjogrens struggle to get diagnosed, and are dismissed or psychologized because the condition is so misunderstood. I’m sure the fact that the typical patient is a middle-aged woman (14:1 female:male ratio in this condition!) doesn’t help given the existing sexism. I’m SO glad that diet was ultimately able to help Linda get function back.

    For anyone who needs to get diagnosed or to learn more about Sjogrens, check out this Sjogrens educator’s website: SjogrensAdvocate.com. This resource was an absolute game-changer for me when I was first diagnosed. I’d been reading PubMed but nothing compares to having an MD gather all the proper medical information in one place so that you can advocate for yourself in the healthcare system. Functional medicine is still the answer, of course, but it’s critical to keep up with and know how to navigate the conventional healthcare system for best results.

    FB and SmartPatients discussion/support groups have really helpful info, too.

  2. Nikiya-Star Conner

    I love your blog and podcast. I’ve learned so much from you.. so thank you. I purchased the simple guide to the autoimmune protocol, but never received the free PDF files. I was wondering how to obtain them. I sent an email with a screen shot of my purchase, but I’m guessing I did something wrong. Any information on how to get these resources would be awesome. peace,

    1. Hi Nikiya. For some reason, your email never came through. I just emailed you the PDFs. They should arrive in your inbox shortly.

  3. Over the weekend I happened upon a TED talk that was posted on Facebook talking about the physiological reasons why some people are gluten sensitive. I was dismayed to see that below the video the most “liked” comment was one that said that gluten intolerance is basically “all in people’s heads.” Something about the way this person said it really bothered me and I thought it was extremely rude to insinuate that someone with an autoimmune disorder was just making up the fact that gluten adversely affects their symptoms. Against my better judgment I responded to the comment with details about how science has shown the biological causes of gluten reactivity in relation to autoimmune problems. Unsurprisingly, this person was not swayed and instead responded by telling me that I clearly haven’t taken enough time to learn about the placebo effect. Listening to this podcast today completely erased the negativity of that experience and then some! It is so nice and refreshing to hear real success stories and quite honestly to get some validation that my problems with gluten are not in fact “made up.” I am so grateful for the AIP community because I have to say that one of the most challenging things about having an autoimmune disorder (Hashimoto’s) is the lack of acceptance or understanding from others. My family basically thinks I’m just a hypochondriac, my friends think this is a quickly passing phase and don’t understand how long it can actually take to heal, and you can see the kind of criticism you even get from strangers on the internet! Thank goodness there are people like you out there Eileen, and the great ladies in this podcast to give me hope that there people out there that understand these experiences and have been able to gain much of their life and happiness back. <3

    1. Ember, thanks so much for writing. Yes, there’s always backlash about gluten sensitivity, because people don’t want to believe it’s true! We’re the canaries in the coalmine, for sure. I’m so grateful there’s a huge community of us who understand, and I’m glad you’re part of this community. Here’s an article that might help your family and friends understand better. It’s a breakdown of the research: http://thedr.com/wp-content/uploads/2014/06/Gluten-Sensitivity-w-o-Celiac-Disease-Is-it-a-Fad-3.pdf . But if they don’t change their minds, know that you’re not crazy, and the AIP community has your back.

      1. Yes, thank you Eileen for your dedication and helping all of us to heal! Ember, those of us changed and healing know the truth. We will never be able to help everyone, but if even one more person is helped, it is worth stepping out of the comfort zone to defend what we know is the truth!

        1. Linda I very much agree with you. The older I get the more I learn how valuable it is to lead through example. I can’t tell you how many of my friends and family members will ask me how I have such clear and glowing skin. They think I use some voodoo skin care regimen haha but I tell them it all comes down to eating a nutrient-dense diet, good sleep, and stress management. They don’t always love that answer (because it requires work and maintenance), but it is the absolute truth ;-).

          1. God saved Egypt with grains, so what is with the grains today. It is called glyphosate. Pharma poisoning our foods. Stay away from pharma poisoned foods and grains are the worst.

      2. Thank you Eileen! This is a wonderful resource and a very interesting read. I love finding commentary from people who are well-versed at reading scientific literature. I am actually in the research field myself and am very aware of how often scientific results are cherry-picked or misconstrued. There have been research articles that suggest that it takes on average 17 years for new medical information to be accepted by the general masses. I think we are just ahead of the curve ;-).

  4. Linda, your story is so much like mine! I have been doing this diet for almost 3 years. Can I ask if you have or had elevated CK?

    Thanks Eileen! Again great information!

    1. Hello Tracy, Sorry, I do not know if I have ever had an elevated CK. I will go back over past labs to check. I do hope you are doing well on AIP also, all the best to you. Linda

      1. Linda,
        Have you ever checked on your CPK levels? I am doing well, but I still have elevated CPK. I so want to communicate with someone with a similar disease who also is healing through diet! I have necrotizing myopathy (polymyositis) (myositis) , systemic scleroderma and raynauds. Would love to talk with you or email. Thank you!

        1. Hello Tracy, I would welcome the opportunity to chat with you! I would rather not post my email here, how can we connect? If you are on Facebook, I just posted a comment on Eileen’s post for this podcast, please feel free to send me a friend request. I look forward to hearing from you. All the best, Linda Sue

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