The Autoimmune Wellness Podcast Episode #2: Step 1 – Inform, Our Stories

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Welcome to The Autoimmune Wellness Podcast Season 1! We’ve created this podcast as a free resource to accompany our upcoming book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Episode #2: Step 1: Inform – Our Stories is focused on the process we went through in getting diagnosis and then educating ourselves about testing, treatment, and prognosis. This episode is very personal, but we felt that revealing to our listeners what our early struggles were like was a valuable way to demonstrate that you can “figure it all out” and achieve wellness. We explain how informing ourselves, though daunting, was crucial to facing autoimmune disease with far less fear.

If you’d like to go more in-depth on Step 1: Inform, check out the “Where Are You On The Spectrum – Autoimmune Status Self-Test” or the “Practicing Resilience” section in Chapter 1 of our book. The self-test can help inform you on the next logical steps to take with chronic illness you might be facing and the resilience guide offers positive ways to cope with diagnosis (something that can be a low point emotionally).

How to listen:

If you’d like to have our podcasts sent directly to your device, subscribe in iTunes or Stitcher!

If you’d like to download the .mp3, you can do so by following this link.

If you’d like to play the episode right now in your browser, use the player below!

Show Notes:

  • 0:00 Introduction
  • 1:45 What is Inform?
  • 3:34 How information results in less fear
  • 3:30 Taking responsibility for getting informed
  • 4:18 When Angie knew it was time to “get informed”
  • 5:06 When Mickey knew it was time to “get informed”
  • 6:14 Mickey’s diagnosis story
    • Hashimoto’s and celiac disease
    • Also see her blog series on the topic here, here, here, here, and here.
  • 10:24 Angie’s diagnosis story
    • Lichen sclerosis, endometriosis, and celiac disease
  • 14:00 Misdiagnosis setbacks
  • 16:10 The power in the correct “label”
  • 17:26 How Mickey coped with her diagnosis
  • 21:40 How Angie coped with her diagnosis
  • 23:40 The value of having a diagnosis vs. not being able to get one
  • 24:50 Angie’s experience with testing and treatment for her autoimmune diseases
  • 27:30 Mickey’s method of gathering and storing medical information
  • 30:00 Angie’s method of gathering and storing medical information
  • 31:40 Your homework for step 1, Inform!
    • Take a look at the “Autoimmune Status Self-Test” on p. 9 of The Autoimmune Wellness Handbook to inform you about where to move next in terms of diagnosis, treatment, and lifestyle changes to manage your autoimmune disease.
  • 33:55 Outro

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The Autoimmune Wellness Podcast is a complimentary resource to our forthcoming book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness. Support us in our mission to revolutionize how autoimmune disease is viewed and treated by pre-ordering your copy today, using the links provided below!

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Check out the previous episode, Episode #1: What is the Autoimmune Wellness Journey?, and the next episode, Episode #3: Sarah Ballantyne, PhD on Getting Informed. For the full podcast archive, click here.

About Angie Alt

Angie Alt is part of the blogging duo behind Autoimmune Paleo. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

23 comments

  • Melly says

    Hi Mickey and Angie, I just wanted to say a big thank you for covering this topic and with such openness. I was diagnosed with MS 9 years ago, but in the past few years it’s become apparent to me that there is more going on after gaining more and more symptoms that just don’t fit. After 4 years of being told there’s nothing else wrong with me and that I ‘just’ have IBS, and going through countless doctors just to get my iron and thyroid levels checked (?!), I have finally been diagnosed with ME symptoms and potential SIBO. I am in for the long-haul to search for, or at least rule out, the cause of my ME. But it’s been incredibly tough psychologically and there have been times I too have doubted my sanity. Your experiences resonated with me so much and has given me the motivation to keep going, to stand tall. Knowing this journey is not unusual is powerfully reassuring and gives me so much hope. Thank you! I look forward to your next podcast (love them).

    • Mickey Trescott says

      Melly,
      I am so sorry to hear about your continued struggles, and hope the pieces start falling together for you soon. The easy task would be to give up hope and succumb to the “crazy”, but you may never know what feeling better feels like until you try, even if it is just one step at a time. Sending you good vibes!

      • Anil Punjabi says

        I have been constantly faced with Bloating / Gas issues after every meal , So just recently after seeing a Functional Medicine Dr – Diagnosis came to be affected with Severe Infection of H-Pylori & In Advanced Adrenal Stress Profiles where my DHEA being very Low . In Addition – i have high amount of Anti-Gliadin , Does this mean it points to being having Celiac Disesas . Struggling this for Past 8 years . What is your suggestions on the Recovery if i need to follow AIP Diet Protocol & What is best way to get startted

        • Mickey Trescott says

          Hi Anil! So sorry to hear. Unfortunately I can’t advise on your lab results as I am not a medical practitioner. I’m hoping your functional doctor is able to help you with treatment for these issues and that you get on the road to recovery soon! If you decide in conjunction with them that an elimination diet would be good to try, I suggest signing up for our newsletter, which has a quick start guide with lots of resources.

    • Sascha Alexander says

      Melly – have you looked into Lyme? From a Lyme sufferer, your situation sounds very Lyme suspicious to me. My Lyme diagnosis has changed my life! I really relate to what you’re going through. Don’t stop looking for answers.

  • Michelle says

    Hello! Thank you for the podcast! I look forward to your new book as well. I have it on pre-order. While I struggled for the last six years with a variety of diseases, I never thought once that I have an autoimmune disorder until I finally read up on a few of my diagnoses, (eczema, asthma and allergies.) Do you have any tips for opening up a dialog with your doctors about symptoms that seem unrelated but are? How do you push for your cause when you already been diagnosed with a mental illness and so many doctors just dismiss your symptoms as “all in your head”? Particularly when test after test comes back as “normal”. I’ve already lost so much faith in doctors but I want to be healthy and thrive. Thank you!

    • Mickey Trescott says

      Hi Michelle!
      I’m so sorry to hear about your experience with your doctors – the mental illness component definitely further complicates things and makes it difficult to get action from your medical team. I would ask yourself what you stand to gain from the information – are you still seeking diagnosis, or do you feel you need treatment? Those are situations where it may be good to continue pushing, gathering information, and potentially opening up new options for treatment. If you don’t think that more testing is going to move you into that territory however, you might be better off working on your diet, lifestyle, and see if that puts a dent in anything. If not, working with a functional medicine practitioner might help pinpoint some root causes. Wishing you luck as you navigate this!

  • Betty says

    Hi Mickey and Angie! Thank you so much for doing these free podcasts! I really appreciate the high quality of information that you are providing, and your personal experiences are such a comfort to me. I would really love to do the homework as we go along, but the book is not available until Nov 1, 2016. Is there any other way to get the homework assignments?

    • Mickey Trescott says

      Hi Betty! Unfortunately you will have to wait for the book. We designed the podcast series to be relevant even after the book release. Good luck!

  • Stephanie says

    In this episode and electrolyte imbalance was mentioned. What did you do to combat that problem? Thanks!

    • Mickey Trescott says

      Hi Stephanie! There is no one-size-fits-all approach to this issue – I was actually hospitalized at one point and had to take a prescription medication for a little while. I would work with your doctor to make sure you get the treatment you need, as it can be pretty serious.

  • Paula says

    Just poking around the site for hte first time. Haven’t listened to the podcast but it looks like you’re talking about being informed. I think your readers should be informed about this:

    I followed the link to the Integrative Nutrition website and was about to sign up to receive the Curriculum Guide when I spotted this in the fine print:

    “I understand that my consent is not required for enrollment and may be withdrawn.”

    This is one of hte shadiest things I’ve ever seen, anywhere, at all, ever. They’re going to enroll you in their school without your consent and if you don’t want the multi-thousands-of-dollars bill you have to opt out.

    Utterly disgusting. Clearly I need look no further into “health coaching” to see that it is a scam to trick people out of what little money they have. Shameful!

    • Mickey Trescott says

      Hi Paula!
      I’m not sure where you found a link to IIN, but we don’t promote them. We recommend the Nutritional Therapy Association, as you will see from the link in our sidebar. Both Angie and I went through their program and highly recommend it.

      I agree with you on the shady marketing schemes of IIN. This is why we are not an affiliate of theirs.

  • Alexandra Masi says

    Hi ladies! Thank you so much for all you are doing. This is life changing and deeply appreciated. I am a life-long vegetarian and am shifting to consuming bone broth. I’m not at a place where I feel comfortable making it on my own yet but am getting there. Do you have an opinion on which bone broth powder I could buy for the time being?
    With gratitude,
    Alex

    • Mickey Trescott says

      Hi Alexandra!
      As a former 10-year vegan, I totally know how it feels to make that transition! Unfortunately I haven’t personally tried any bone broth powders out there, so I don’t have a recommendation (that doesn’t mean there isn’t a good one!). I would look for something using grass-fed cows and produced in a gluten-free facility, at the minimum. Wishing you a smooth transition!

  • Ashley says

    I just wanted to say how amazing you guys are. It took me a couple of tries over 2 weeks to listen to this episode all the way through, because I kept getting too emotional at work. My own struggle for a diagnosis has taken over 20 years, with multiple wrong turns and a lot of medications that have left me with lasting side effects. It’s so powerful to know that I am not the only one.
    I cannot wait for the book to come out. Bless you both!

    • Angie Alt says

      Ashley, thanks for sharing! We are a mission, that in part, includes ending the autoimmune loneliness.

    • Mickey Trescott says

      Thanks for listening Ashley!

  • […] out the next episode, Episode #2: Step 1: Inform – Our Stories. For the full podcast archive, click […]

  • maxine says

    This podcast series is totally inspiring some grownup transformation for me (at 52)…I have been dealing with mystery(ahem) digestive related issues, that I am now certain are AI related. I really detest traditional medicine and went theough 4 years of GI appts several times a week to no resolution or improvement. Then I went through 3 years of accupuncture to moderate improvement after just 3 weeks. I got to a point where I considered myself stable and at a new normal. Now, about 4 years since treatment, I have had a major relapse of sorts recently. Your book and these podcasts have come at just the right moment for me.

    I do have a new doc that I trust and like, but it is still challenging to follow through. The book has been teaching me that I can work through in steps so I am starting on the 6 week plan toward full elimination. This episode has pushed me toward wanting a diagnosis so an appointment has been made. I am bringing the book with me to help me be a better advocate, and if my doc isn’t already familiar, she will get her own copy at the following appointment. Thanks for making this all a little more accessible.

    • Mickey Trescott says

      Hey Maxine! Thanks for the feedback, we are happy you are here and wish you well on your journey!

      • maxine says

        I am doing the weekly stepdown and in week one, no grains, no alcohol. This is pretty easy for me, though I do find myself wanting some sort of cracker or tortilla or bread substitute…

        My alcohol challenge will come next week when we have our office holiday dinner at a nice restaurant. I will want a glass of wine with dinner. How much of a dis-service am I doing myself if I have one?

        • Angie Alt says

          Maxine-
          If you are committed & ready to do this, that glass of wine is going to do you a huge disservice. Mainly, it will make it tough for you to truly see the results of this process w/ a clean slate. I’d recommend having a glass of sparkling water or cider instead. What is one glass of wine compared to potentially discovering a whole new way to feel your best? Wishing you luck!

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