Today I’m going to cover a topic that has confused many as they embark on of transitioning to the Autoimmune Protocol–how do those who suffer from seemingly subjective and nebulous symptoms gauge which dietary and lifestyle interventions are working for them, and if they are on the right track with their healing journey?
Having Hashimoto’s thyroiditis myself, I am no stranger to feeling lost when trying to make connections between the dietary and lifestyle choices I’ve made and how I’m feeling. Often reactions to foods or other input can be quite subtle and easy to ignore before everything seems to come crashing down all at once.
If you find yourself in a similar situation with your autoimmune symptoms, this article will both help you identify what you should be on the lookout for as well as give you some tools to make that identification that much easier.
The healing process isn’t linear
I want to start by acknowledging something I’ve said over and over in my articles, podcasts, and books, but it bears repeating… the healing process rarely looks like an even, predictable upward trajectory where a person gradually feels better and better until they reach the pinnacle of health (I mean… wouldn’t that be nice?).
Most of us who have experienced great healing and have learned to manage and live well with our autoimmune disease(s) know that the healing process is often longer than anticipated, can happen equally as often both in quick bursts and long, drawn-out plateaus, and that setbacks are to be expected.
Whenever I’m interviewed on podcasts or other media I’m asked to tell my story in roughly 3-5 minutes. Those soundbites can’t accurately reflect the sheer amount of time and every disappointment I’ve experienced along the way. (If you are interested in listening to a version closer to the whole story, I’ve got a 2-hour version in this Deep Dive Podcast Episode.)
Now that you have a more realistic expectation of the healing process, I’ve got some big tips for you!
Follow your gut
I can’t tell you how many clients I’ve worked with that tell me “nothing is working; I am experiencing no changes” after a month or two on The Autoimmune Protocol. Only to find after interviewing them and reviewing their journals that A LOT has changed for them in the area of digestion and elimination! In fact, I think these two areas of digestion and elimination are where people with harder-to-pin-down illnesses often see the first, sometimes slow signs of progress when transitioning their diet and lifestyle.
Here are some changes that might indicate digestion is on the right track:
- Less acid reflux or GERD
- Less indigestion
- Less gas and bloating
- A resolution or lessening of constipation or diarrhea
- Daily, optimal, complete eliminations (or closer to the mark than before)
We know one of the reasons why the Autoimmune Protocol is so effective at helping people manage autoimmune disease is because of its massively positive impact on both digestion and the health of the microbiome. Since 70% of our immune system resides in our guts, by choosing what is on our plate and how we eat we have a powerful opportunity to influence our body’s healing process.
If you’ve transitioned to the Autoimmune Protocol and are disappointed that the “only” changes you are seeing so far relate to your digestion and elimination, don’t fret! This is exactly what you are looking for, and a sign that good things may be yet to come. (If you want to read more about how the digestive process sets you up for future healing, read our article Understanding Digestion to Own Your Healing to learn more!).
If you are like me, trying to rely on memory to track how you feel is going to be confusing when you have a disease that can present with symptoms like fatigue, cold hands and feet, hair loss, irritability, and gut changes. While the day you are experiencing them you might feel as though they will never be forgotten, but in reality if they abate you are likely to forget you were experiencing them at all (and when, or how intensely!) a week or two later.
My first recommendation around tracking is to do it in the first place, and do it consistently. Find a method that works for you–pen and paper (my favorite!), an excel spreadsheet, or an app on your smartphone. Tie the habit of tracking once or twice a day to another habit you have no problem forgetting–like eating breakfast or brushing your teeth.
As the symptoms of your disease come, go, or vary in intensity, you won’t have to rely on your memory to place them. By tracking consistently, you will end up with a history of your healing journey that can be an important tool for making connections and deciding where to go next.
Track the things that matter
When you start tracking it can be tempting to start by tracking as much as possible–symptoms, food intake, weight, and mood. Over-tracking can quickly cause overwhelm and anxiety though, not to mention take a big chunk out of your day that could otherwise be spent doing something else.
My second tracking recommendation is to start by focusing on just a few of the metrics that matter the most to your healing journey. For instance, when I’m trying to track my Hashimoto’s symptoms I like to start by noting my energy levels, bowel movements, any unusual symptoms that crop up on a given day (like cold hands and feet), and then some very basic food, exercise, and supplement notes (not down to the calorie or ingredient level, but just to get a general sense of what I ate that day).
Here is a list of some metrics you can consider tracking:
- Energy levels
- Pain levels
- Bowel movements
- Food or beverage intake
- Notable symptoms
- Body measurements
- Stress management techniques
Once you build in a habit to track some of the basics and find it an easy part of your day, you can start adding more metrics as long as it doesn’t feel obsessive or overwhelming to you. Remember, the goal of this process is to expand the healing process and enable you to make connections and correlations, not to overwhelm you to the point where you give up.
Use a numbered scale
My third tracking recommendation is to use a numbered scale to track symptoms like energy, pain, stress level, and mood. For each metric, create a scale of 1-10 and what each number might correlate to for you (for instance, an energy level of 2 might mean I can’t leave my bed that day; a 4 might mean I could get up, but had a lot of fatigue and needed 2 naps; a 6 might mean I felt fatigued throughout the day but got through without breaks; an 8 might mean I hardly noticed fatigue at all). Then when you fill out your daily symptom journal, note “energy–7” instead of “I had good energy today.”
By comparing your experience day to day using a numbered scale, it will be easier (and faster!) to accurately track the progression of your energy levels. Over the course of weeks or months, changes that may have been less noticeable can appear when we have a more concrete marker like a number to look at.
It is human nature to experience something good and then automatically discount it, expecting and hoping for more. This is something I’ve both experienced myself in my own healing journey, and countless times working with clients. Often, we’ve gone decades choosing patterns that bring our bodies into disarray, only to be disappointed when we don’t see changes as quickly as we wanted or expected. I’ve found that tracking with numbers helps me to be honest with any positive changes, even if they aren’t as quick or massive as I had hoped for.
There are no guarantees
Now, I’m going to say something that might not be very popular: there are no guarantees that even if you do all of the “right” things, you see progress in your healing journey. You might see big changes in some areas, but little to none in others. Controlling all of the inputs doesn’t guarantee a specific outcome, and this may be one of the most frustrating aspects of learning how to live with a chronic illness or autoimmune disease. While we know that the Autoimmune Protocol has transformed countless lives through both anecdotal experience and now two medical studies, this is far from a guarantee.
Personally, I’ve been frustrated in the past that my outer eyebrow regrowth (a common Hashimoto’s symptom) has not matched my great progress in energy and hormone levels. While there are still a few things like this that I experience, I’m still working on gratitude for the things that have changed, acceptance for those that haven’t yet, and being open to the reality that things could very well shift in either direction in the future for me.
What do you do when you really aren’t seeing progress? OK, so there are some situations where you might need to move on to the troubleshooting phase, and I wrote a great article called Troubleshooting the Autoimmune Protocol – A Guide to talk about all the areas you could consider looking into if you really don’t find yourself experiencing any success on your healing journey (or, in the rare case that dietary and lifestyle modifications have you feeling worse than you started). I also recommend considering hiring an AIP Certified Coach to help guide you through this process–we have trained over 350 coaches that work in a varieties of modalities, both locally in-person and virtually around the world.
Although tracking can make this process seem more grounded and scientific, living well with autoimmune disease is more of an intuitive art than an exacting science. Many of us have gone many years (sometimes decades!) learning how to dismiss, work through, or hide our symptoms, and when we make the leap to opening up and assessing how we actually feel we can be overwhelmed with the emotions that come with tuning in at that level.
While symptoms can be uncomfortable, they are our bodies giving us feedback. Although often we’d like to make them go away as quickly as possible, without this feedback we’d most likely be unable to discover what needs to be changed in order to achieve balance again.
If you are someone who experiences less-obvious or nebulous autoimmune symptoms, I hope this article has given you some tips to use tracking to your advantage and to know what to expect on the healing journey.
Have you found any of the tips above to be helpful to you? I’d love to know more in the comments!
I really enjoy reading your wisdom. Two comments. First, people sometimes in life forget that autoimmunity can cause permanent damage/scarring. AIP reduces ongoing inflammation, but a person is still left with the damage before. An example of this is Hashimoto’s where antibodies damage the thyroid. One may never get off thyroid replacement medication totally because the thyroid was permanently damaged. One can stop ongoing damage and feel better. I say this about choice of goals and because this point really confuses people, it seems.
Second comment. I think this is a recent posting/article, but Mickey Trescott, your bio at the end is kind of old. Update. This community is proud of The Nutrient Dense Kitchen and Autoimmune Wellness Handbook. When people read wisdom, they like to know sources for further wisdom.
I’m so happy this article resonated with you. 100% agree on the point about prior damage–this is a huge reason why so many people need thyroid replacement hormone in addition to a healing diet. Preventing further progression, or even slowing it, seems to be really possible with diet and lifestyle change. Reversing years (and sometimes decades!) of damage done by an out-of-control autoimmune disease is less likely. It is so important to be realistic about this!
And thanks for the bio update reminder! Sigh. It should be on that yearly list. 😉
This hits the nail on the head (that it’s hard to hit a nail on the head with autoimmunity)! It’s a real “Eureka” moment when you identify with any clarity what’s causing what. Once you figure it out, rather than feeling restricted, it’s empowering!
Susan, 100% agree. Empowerment is feeling like you now have a choice because you have information. Glad it resonated with you!
I’ve been AIP since January 2017, and my progress has been slow, even though my initial symptoms and onset came on fast and furious. The progress I’ve made hasn’t been something that I could measure daily or weekly, but looking at my progress in three or four month increments was what made me realize it was working, albeit slowly. And now, I can look back and see how much better I feel this summer, compared to last summer, and exponentially better than the summer before that. Honestly, I’m almost back to my normal self (and I really hope I’ll see even more improvement in the future). I just tried to my first reintroduction which went well, but I’m hesitant to overindulge for fear of undoing the progress I’ve made. We’ll see how it goes. It’s one day at a time. Two steps forward, one back, and all that.
Gina – congrats on your progress, and thank you for sharing some of your story here. I know it can be frustrating for people who have had slow, but steady progress (like you and I) to hear the success stories that came in a matter of weeks. Wishing you luck!
I have been in AIP for 1 year. Started reintroductiona at 9 months. I second the advice is tracking.
In addition to the list given on this article here is what I did and found helpful:
1- measured TSH / T3-T4 every 45 days for thyroxine dose adjustment
2- bought a Fitbit which automatically tracked: sleep, exercise and most importantly resting heart rate. When my body is “fighting back/ inflamed” my resting heart rate goes up and the the amount of time I spend on deep sleep vs light sleep increases. This has been very helpful for reintroduction phase.
Za – thanks for sharing what has helped you in the tracking department! I also like wearable trackers, as they make it easy to just go about your day and check out the data later.
There is also a terrific tracker I have called Whoop. It does more than Fitbit because it also tracks HRV, RHR, daily strain loads, REM and deep sleep and sleep efficiency and much more. Professional coaches use it to assess their atheletes’ performances. Super helpful data that allows me to understand the relationship between a low recovery day and if that correlates with foods or a detox protocol.
Roxanne, thanks for sharing!
Of equal importance with the AIP diet is seeing a Functional MD, Holistic MD or other Functional Practitioner that specializes in autoimmune and gut issues and who know exactly what to test. Hospital doctors are 15 years behind these holistic and functional doctors. Heavy metal testing, cortisol levels, adrenals, hormones, Vitamin D levels, TSH, T3, T4, Antibodies, and so much more. And heavy metals must be removed from the body. And it’s good to get the latter 4 tested about every 8 months or so. And following instructions and following through with appointments. (You can’t just go for one visit and think that’s going to fix everything. The body changes constantly with healing, and protocol has to be tweaked when flare-ups or other changes arise.) So developing a long-term relationship with a functional doctor and seeing that doctor a couple times a year (or more, as needed).
Hi Loretta! I agree that having a practitioner available for guidance is a great piece. I don’t want people to think that the only way they can heal is by using functional medicine, however – many of us (myself included) did not have access to functional doctors and had to make the best we could with conventional or other covered natural practitioners (like naturopaths). I think dietary and lifestyle changes are a great first step for people, and once they get 1-3 months in, that is a perfect time to clarify the big issues to bring to a functional (or collaborative allopathic or naturopathic) provider.
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Thanks for a comprehensive and pragmatic write up on AIP. I’ve been on AIP for 45 days now. First 30 days were great, I almost felt normal. Then I attempted reintroduction with brazilnuts thinking they’re essential source for selenium for my Hashimoto’s. But it backfired spectacularly. Symptoms came back in full force. Almost 10 days of flare up. Now I’m back to strict elimination again. But two issues- 1. I’m breastfeeding and I don’t eat meats. So AIP leaves me often exhausted. 2. I’m experiencing a lot of bloating and noisy burps with starchy AIP staples like sweet potato, jackfruit, pumpkin. It has become worse now..I can’t decipher why. Is this SIBO or something? How to rest for it? How to modify AIP for reducing the bloating? Thanks for any suggestions.
Hi Sara! I am sorry to hear you are having some issues. To be honest, it is not advisable to do AIP without eating meat, since there are not enough non-meat protein sources in the diet. To add that, your nutritional needs as a breastfeeding mom are higher. My advice would be to find a nutritionist who can take your needs for an elimination diet and tailor it to your situation, as it can be dangerous for you to restrict without eating meat and while breastfeeding – good luck!