S2 E3 Q + A #2 – Undiagnosed, reintroduction issues, and how to make greens interesting

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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 3 is our second Q + A episode where we answer questions submitted by AIPers just like you! Angie and Mickey answer eight reader-submitted questions and, as usual, they pack in a lot of information.

Topics discussed include what to do if you don’t receive a diagnosis, how long to wait before beginning reintroductions, determining what a “bad reaction” looks like, how to keep leafy greens interesting, and how to find a natural doctor. Scroll down for the full episode transcript.

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Full Transcript:

Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and Celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and Celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients, just like you, to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. Onto the podcast!

Topics:

1. Mickey and Angie answer non-AIP related question [2:48]

2. No diagnosis despite blood work [6:38]

3. Continuing AIP without an exact diagnosis [12:00]

4. How long before reintroductions? [14:14]

5. Determining a detrimental reaction after reintroduction [17:31]

6. Mickey and Angie’s personal experience with elimination and reintroduction [20:44]

7. Adding more greens, keeping them interesting [26:49]

8. Getting in calcium [29:56]

9. Resource for finding natural doctors [32:09]

Mickey Trescott: Hey everyone! Mickey here, and welcome back to the Autoimmune Wellness podcast. We’re in the middle of our season two. Today we’ve got a great question and answer episode for you, and we realize that some of you guys might be new to the podcast, or even to AIP in general. So if some of the questions on these podcasts sound a little bit above your head; kind of gibberish to you, we recommend going way back to the beginning of season one where we take you through every step of living well with autoimmune disease, starting with informing yourself. There is a ton of information there; we don’t want you guys to miss it. Right Angie?

Angie Alt: Yeah, we did a podcast episode for every chapter of our book; both one sharing our personal stories on that particular topic; as well as in-depth interviews with various experts for each of the topics. Trust us, there is a ton of information. What was there; like 18 episodes or something, Mickey?

Mickey Trescott: Yeah, it was a very comprehensive and well-produced season. So if you guys are new, don’t be afraid to go back there and start. We cover a lot of information that we’re actually getting questions about that are in those episodes, so we wanted to send you guys a little reminder. Say, hey, start there if you’re kind of new to this. If you guys have been on the road for a while, then you’re in the right place.

1. Mickey and Angie answer non-AIP related question [2:48]

So before we get started with today’s episode, I actually kind of had a little idea. And I think it would be fun, Angie, to ask each other an AIP related question before our reader questions. What do you think?

Angie Alt: Um; well, thanks for springing this on me. {laughs}

Mickey Trescott: {laughs}

Angie Alt: And yeah, I’m into it. Let’s do it.

Mickey Trescott: Ok, cool. So, I want to ask you; what was the most non-AIP you ate or did this week?

Angie Alt: Non-AIP thing I ate or did this week. Well, so my birthday was on Saturday.

Mickey Trescott: Woot, woot!

Angie Alt: Yeah. {laughs} So I went out and had a glass of wine, that was very yummy.

Mickey Trescott: Oh my gosh.

Angie Alt: Yep. And then, yesterday I actually made the fish pie recipe from Russ Crandall’s first cookbook; The Ancestral Table. Russ Crandall goes by The Domestic Man on his blog and social media accounts. And that recipe includes heavy cream, butter, and white potatoes. So I super went into some reintro mode there with that delicious meal.

Mickey Trescott: How did you feel after eating it?

Angie Alt: Pretty good. You know, I’ve been pretty lucky in the dairy department in terms of reintroductions, and I seem to do pretty ok. I don’t eat dairy every single day, by any means. Not even every single week. But if I have it in small amounts; like, the last time I had any dairy was at Christmas time; I seem to do ok.

Mickey Trescott: Yeah, that would probably take it over the edge for me.

Angie Alt: I know; don’t worry, I won’t make it when you’re here. {laughs}

Mickey Trescott: Actually, thinking about it right now is maybe producing a reaction, so let’s move on.

Angie Alt: {laughs} Ok. Don’t start wheezing. Ok, so my question for you; you know, I think folks have the impression that we work a lot; and we do. But we also take breaks, and I’m wondering what kind of vacation plans you have this year.

Mickey Trescott: Yeah, so you know what kind of vacation plans I have this year.

Angie Alt: {laughs}

Mickey Trescott: Because; when we were on book tour in November…

Angie Alt: Oh my god.

Mickey Trescott: I stayed up; well I didn’t stay up. I set my alarm for 1:30 in the morning so that I could get up and buy Radiohead tickets in Europe. Because my husband and I have been trying to see them since I saw them 10 years ago without him, and he’s been kind of hurt and sad {laughs} ever since then that we haven’t been able to get tickets, which are kind of hard to come by. And they were going on a European tour, and I was like; well, if I can get tickets anywhere in Europe, I guess we’ll go there. {laughs}

Angie Alt: Yeah.

Mickey Trescott: So Sweden won; I won tickets in Sweden, so we’re going to go there in June. And I have nothing planned, except for a plane ticket and a Radiohead ticket. So if you guys know any cool things going on in Sweden, send me a message on Instagram or something.

Angie Alt: And I’m like a really cool partner, because even though this craziness was happening at 1:30 in the morning, while we were supposed to be on book tour; I was like, “Yeah, dude, I’m down with live music. Do what you gotta do!” {laughs}

Mickey Trescott: I’m like, I was in the bathroom because I didn’t want my computer screen to wake you up. And then I was trying to type in my credit card number, and the website was all in Swedish. I actually accidentally bought the Norwegian tickets; which I really. The date was wrong; anyways, I’m in the bathroom with my computer, in the dark, and the bright light is blinding me; and I’ve got Google Translate, and my credit card, and I’m like, “Angie is probably thinking I’m a crazy person right now!” {laughs}

Angie Alt: No. No. I was totally behind you.

2. No diagnosis despite blood work [6:38]

Mickey Trescott: Yep. That happened. So that was fun. So, now let’s get onto tackling some of your specific questions about AIP, because we know you guys have got a lot; you always send in a lot when we ask. So let’s start with some questions about diagnosis. Sound good Angie?

Angie Alt: Yeah.

Mickey Trescott: Alright. So, Good Eats Gal has a question about those who are undiagnosed despite heaps of blood work. She says she has a definite positive ANA, and symptoms but no confirmed diagnosis. She is worried about people like her who are put on a “wait and see” track, and that it would be great to hear in-depth about another way of how to find hope without those answers.

Angie Alt: So, the first thing I would say to Good Eats Gal is we actually are going to have an interviewee during this season who doesn’t have a diagnosis, and has been following the AIP for a long time despite that. She’s still working towards her answers, and it’s been a decade’s long process for her. So don’t give up hope, and definitely stay tuned to this series, because there are other folks out there just like you that don’t have confirmed diagnoses. Mickey, what else would you say to her?

Mickey Trescott: I would say a positive ANA; so for those of you who don’t know what that is, that’s anti-nuclear antibodies, and that’s an antibody that by itself is not indicative of an autoimmune disease. So when they test the healthy population, a certain percentage of people have a positive ANA without any symptoms or other autoimmune disease. So that by itself; this is probably why your symptoms might not fall into the category of diseases that go with ANA. Which doesn’t mean you don’t have an autoimmune disease, but it’s part of the reason why it’s unclear. Because ANA isn’t really one of those things that’s very obvious.

Usually, there are more of the mixed connective tissue types of diseases, so things like lupus or Sjogren’s or rheumatoid arthritis, which affect kind of the way connective tissue affects the body. So maybe the joint, and some of the organs, and that kind of thing. So those are usually the diseases that a good rheumatologist will kind of look into.

If you’re one of these people that’s been searching for a long time, you really do feel like you’ve been seeing high level doctors and they’ve been testing you thoroughly and they’re still not coming up with anything, it really is ok to try to work on your own stuff before you get answers; and maybe in the absence of any answers ever.

A lot of people have that experience; I know I had this experience when I was diagnosed with Hashimoto’s and Celiac; I went through a period after my diagnosis where I started developing more symptoms. So I started to develop neurological symptoms; I started to develop some of these connective tissue symptoms. I did not have positive ANA; but I actually had a lot of markers for illnesses like lupus, and I was actually told that I very well could have that, but I needed to wait for 6 more months before I got a formal diagnosis, and in that period of time I discovered the autoimmune protocol, and slowly some of those symptoms started to peel away, so that diagnosis was no longer obvious.

I think for the people who are kind of waiting in that; you know, their body is just starting to kind of express those symptoms, and that’s why we have, in our book, we present autoimmunity as a spectrum and not just black or white. A lot of the people that are kind of in the middle of that spectrum, not really ready for diagnosis yet but experiencing autoimmune symptoms, those are the best people to try and work on your own. Work with diet; maybe see a functional medicine practitioner to try to root out some underlying issues, and then prevent going down that road of being diagnosed with a clear illness because of your symptoms, if that makes sense.

Angie Alt: Right. Yeah, I mean it’s definitely ok to start doing what you can on your own. Many of the principles that are part of the autoimmune protocol are just great principles for living a fuller, healthier life anyway; so even if autoimmune disease doesn’t turn out to be an underlier for you, some of the principles of the process could be positive.

Mickey Trescott: Yeah, they could. You never really know until you try what level of success you’re going to see. So some people have been in that murky; like, how can I get diagnosed, I can’t really figure this out, and then they try the lifestyle and the diet changes, and they’re able to completely reverse whatever they’re symptoms were; and then that’s great. They know exactly what they put in, in order to get healthy, and they know how to avoid it for the future. And for some people, that’s best-case scenario, because then they never really have to deal with that mental part of getting a diagnosis and having to go through all that testing. It’s a lot.

3. Continuing AIP without an exact diagnosis [12:00]

Angie Alt: Right. So, the next question is kind of in this same category; it looks like Sue asked us. “Is it best, or do most people, continue on the autoimmune protocol diet for a long time, even without an exact diagnosis?”

Mickey Trescott: So, I think for people that don’t have a diagnosis, it’s the same. It doesn’t matter if you have a diagnosis or if you don’t. When you go onto the autoimmune protocol, the elimination diet; really the standard recommendation is 30 to 90 days. And that is to see if your body is responding; or basically to really see if there are any underlying issues. So you try the elimination diet for one to three months; and then if you have positive changes, it means that there were some food triggers in your diet that are affecting you. If you don’t have positive changes, then that’s time to go start working with a functional medicine practitioner, or a nutritional therapy practitioner, or someone who can really guide you on looking into those root causes. It doesn’t really matter if you have a diagnosis or not.

Of course, having a diagnosis might give you more information to be looking for clues about improvement. So, for instance. If you have Hashimoto’s disease, over time you might see your thyroid lab markers change. Or if you have Celiac disease, over time you might see your antibodies change. That’s where having a diagnosis, I think, helps you track; but it doesn’t really matter if you have a diagnosis or not when you go into the process, because the protocol is basically about feeling your own body and seeing how food affects you.

And this woman is talking about, “do most people continue it for a long time.” You know, we’ve reiterated this a lot. The autoimmune protocol; the elimination diet is not something that you do for a very long time without guidance. If you’re doing it for a very long time, expecting results and not getting results, that’s really a clear indicator that you need to bring in some outside support and trouble shoot a little bit.

Angie Alt: Right.

4. How long before reintroductions? [14:14]

Mickey Trescott: Alright. So Misha Cooks AIP; or it might be Misha, probably. Misha.

Angie Alt: Yeah, Misha.

Mickey Trescott: So she said she loved podcast season one.

Angie Alt: Thank you!

Mickey Trescott: “How long is it recommended to continue the strict phase of AIP before starting reintroductions after healing the gut. She says she has a program she’ll be starting from her functional medicine doctor.

Angie Alt: Well; there’s a couple of things here. First of all, the basic kind of guidance for everyone is that you need to stay for at least 30 days in the elimination phase of the autoimmune protocol. So, this is just to kind of give you a clean slate from which to be able to gauge reactions as you begin to reintroduce foods. And everybody does a minimum of 30 days there.

The reality is that for most of us with autoimmune diseases or other chronic...