The Silent Truth: AIP, Restrictive Diets, Disordered Eating and Orthorexia

 

 

Five years ago, while talking with a distraught client, I had a moment of clarity that began to alter my view of health, nutrition, and well-being: Autoimmune Paleo (AIP) and other restrictive diets were causing Disordered Eating and Orthorexia. Not in all people and not in all cases; but, the relationship – and all its trauma, pain, and suffering – were far too real, for far too many.

It’s only now, though – with the Autoimmune Paleo and restrictive diet communities continuing to trivialize the significance and prevalence of Disordered Eating within their own movements – that I fully recognize and appreciate the weight of my revelation that day. And, today I’m officially calling BS on the industry’s relative silence on the topic. 

This article, then, is giving voice to the many thousands of people suffering as a result of their journey – to those who hear, “It’s you, not the diet,” in their experiences – because a token article or brief mention within the volume of discussions, forums, groups, chats, blogs, and books, has marginalized their reality for too long. 

But… back to my story. 

My client that day had started AIP one month prior and was feeling worse, not better. She really wanted to “do AIP right” and thought that if she followed it exactly, she would put her Lupus into remission. Getting worse, then, triggered waves of confusion, apprehension, shame, and guilt. 

She had read AIP blogs and books and many encouraging recovery stories. She had cleaned out her kitchen and spent weeks making meal plans. She was doing everything she was guided to do and she was doing it as perfectly as she could.

But, because she was moving backward not forward, she was absolutely convinced that she wasn’t doing enough or was doing it “wrong.” So, she did what so many others in her shoes do: Look online for AIP support.

The messages and feedback she got from various thought leaders and group forums made it all sound so simple:

  • Give it more time;
  • Be careful not to cross-contaminate food;
  • Start a diet journal;
  • Surround yourself with other AIP-ers;
  • Switch your mindset to how much you can eat on AIP instead of how little;
  • Do an AIP Reset Program if you get off track;
  • Only trust those approved by the AIP badge.

Believing there had to be more still to eliminate, she reached out to me to walk her through her plan and find where she “might be messing up.” 

When we started our appointment, she was visibly nervous and had a notepad and pen to catch every word we discussed. The following is my best recollection of our conversation.

“I know I’m not doing enough or doing something wrong,” she said at the outset, “because I feel worse. And, I know I need to cut out even more foods, but I really don’t want to.” 

After walking me through everything she’d done up to this point, I looked straight into her eyes and said, “Listen to me. You are doing enough. You are. You’ve achieved perfect AIP-status. You’re what I call a ‘Perfect Performer.’” 

Then she started crying – faintly at first, and then a bit more heavily. 

“What are you experiencing right now?” I asked. 

“Relief,” she said through her tears. “I am relieved. I don’t eat organ meat. I can’t stand the taste of it. I actually gag when I eat it. It’s the only thing I haven’t done to be ‘perfect AIP.’ And, I thought you were going to tell me I couldn’t truly be AIP until I ate organ meat. So, I’m just relieved.” 

Slightly confused, I told her, “Of course you don’t have to eat organ meat. There’s no AIP police!” 

“But, in my AIP Facebook group,” she retorted, “I was told that eating organ meat and bone broth was essential to doing AIP correctly. And, when I challenged the view, I was shut down and told that if I questioned the diet, I’d be kicked out of the group.”

“Listen,” I said, “You don’t have to drink bone broth and you don’t need to eat organ meat. You can do anything and everything you want. This is your journey and you get to do it however you want. I stand behind you 100%.” 

With that, her tears began to flow as freely as she suddenly felt, and we had the opportunity to spend the rest of our time together focused on what mattered most: Customizing AIP in a way that felt attainable to her, including the help of functional medicine doctors and a focus on gut restoration. No more guilt. No more confusion. No more fear.

This was a pivotal moment for me as a practitioner, as my eyes were first opened to the emotional and psychological toll restrictive diets frequently have on individuals. 

Unfortunately, though, she was just the tip of the iceberg. I’ve since seen hundreds of hurting and confused clients in different states of generalized stress, many of whom felt abandoned by, and estranged from, AIP groups for publicly questioning and challenging the diet. 

As heartbreaking as it is, the phrases below – in all of their variations – are some of the most common I’ve heard in recent years:

  • “I’m not disciplined enough to restrict my food to put myself into remission, so I feel like a failure.”
  • “I was full-blown Orthorexia after one year of AIP and now I’m working with a therapist.”
  • “I sought you out because I heard you won’t make me ‘AIP-harder.’” 
  • “My functional medicine doctor told me I needed to be AIP for at least six months, and I cry every day because I don’t know if I can do it.”
  • “I’m terrified of food since going AIP.”
  • “I refuse to come off AIP, because I may flare again. I feel trapped and scared.” 
  • “I’m down to 10 foods after being AIP for 2 years.”
  • “When I read AIP blogs, they say the loss of oral tolerance is not real. I don’t know what or who to believe anymore.” 
  • “This diet is so restrictive that I can’t control my AIP-treat binges. I don’t know how to stop.”
  • “I’ve lost friends and my social life being on AIP.”

Today, having heard thousands of references like those above from clients, colleagues, and community members, it’s obvious to me that there’s a direct connection between restrictive diets (including AIP) and Disordered Eating and Orthorexia. 

Equally important, I think the problem is much more pervasive within the AIP and restrictive diet communities than its participants and leaders are willing to admit. 

The scientific and medical communities are hesitant to say that diets themselves cause disordered eating. If you dig into the research, you’ll find wordisms like “precursor” or “significant risk factor” or “potential trigger.”

This grey area has, in turn, allowed those leading the restrictive diet communities – like AIP, Keto, Low Fodmap, etc. – to frequently deny and hide from their responsibility in the anguish suffered by so many. It’s also granted tacit permission to authors, Facebook group admins, bloggers, and other specialists to willfully ignore and/or shut down discussion around this devastating reality faced by so many. 

Make no mistake, though, the pass/fail construct of restrictive diets is itself driving an unwell condition that I’ve come to term, “Healing Diet Orthorexia.” HDO is characterized by a pronounced obsession with restrictive eating, such that individuals believe their dietary choices are matters of disease remission, life, and/or death. Rather than being generic forms of Disordered Eating or Orthorexia, HDO is a mental, emotional, and psychological condition brought on, and exacerbated, by a diet meant to heal disease.

Here’s an example of what I now see as Healing Diet Orthorexia, pulled together from threads of numerous clients and colleagues with whom I’ve talked. It isn’t just about a “healthy diet;” instead, it comes to be about an individual’s power to be restrictive enough with food and strong enough of mind to heal themselves at all costs.

Meet Linda, a 48-year old with Multiple Sclerosis who’s been experiencing more frequent and severe MS flares in the last two years. 

Stage 1: Motivation

Highly motivated to change her circumstances, Linda decides to “take her health into her own hands.” Like so many others before her, she quickly finds her way online to the AIP diet. Inspired, but nervous, she leaps into the world of restrictive eating, ready to heal herself and lessen the frequency of flares. 

Stage 2: Frustration

After eight months of diligence and vigilance to the ways of AIP, she’s made progress but is still regularly experiencing symptoms. Linda had expectations that she would have made more progress by this point, after having read volumes of online stories about the successes of others. She feels like she’s done something wrong and assumes that she hasn’t been strict enough or hasn’t eaten enough of the right vegetables and nutrient-dense foods. 

Stage 3: Recommitment

Linda tries coming off AIP and just being Paleo, by reintroducing a few foods (after all, AIP is supposed to be a temporary diet). But, she flares and feels numbness in her right leg, even though she followed all the reintroduction instructions presented on various AIP web sites. So, she decides that she needs to go full AIP again and even decides to remove additional foods like sweet potatoes and plantain chips that she had previously used as “treats.” 

Stage 4: Depression

Three months later, with incremental improvement in her latest full AIP try,  she reintroduces the same sweet potatoes she used to love. Now, however, she feels numbness in her left leg that she hadn’t felt just three months before. She’s psychologically crushed and begins to fall into a mild depression, wondering how and why her body continues failing her.

Stage 5: Obsession

As her low-level depression builds, Linda becomes more and more fixated on her restrictions, fearing that even one food “mess up” could ruin the small increments of progress she’s made. As a result, she starts:

  • Eating only foods she’s prepared because she’s worried that she’ll accidentally eat something “off-limits;”
  • Purchasing organic food only from stores she knows and trusts;
  • Spending hours each day thinking about her food, meal plans, and what she may be doing wrong to cause her progress to stall;
  • Waking up in the middle of the night afraid that any new food may cause her to lose her ability to walk;
  • Withdrawing from social situations; and, lastly,
  • Convincing herself that God and the Universe are punishing her with this disease.

Stage 6: Relief

After 18 months, Linda gets the help she really needs, finding support outside the closed world of AIP. Working with a therapist, coach, and nutritionist, she comes to recognize the inflammatory drivers unique to her that are contributing to MS; discovers ways she can work with her fear around food and her diagnosis (rather than against them); and builds a new tool kit to heal the part of herself that believes the only way to manage her fear of flaring is by restriction.

If this sounds too familiar to you – if you’ve been on AIP or on any kind of restrictive diet and are feeling the symptoms of Healing Diet Orthorexia or Disordered Eating – you are not alone. There are thousands of others experiencing this with you. Silently.

I’m so sorry this is happening, and I believe you. I believe your story, your experience, and your feelings. I believe you 100%.

I encourage you to take your inner-voice to heart and find a professional that can help you sort through your experiences on AIP, understand what’s happening, and work with you to address the challenges. 

Your story is still being written, and you have the opportunity to heal and find profound meaning in your struggles. 

On a final note, I recognize that some may view this entire discussion as self-serving, given my professional practice. Those naysayers and deniers would be wrong, pure and simple.

This perspective is the culmination of my own learnings and experiences as a practitioner and my own recognition of what my clients have been telling me and struggling with for years. My only real concern, therefore, is reaching those for whom these thoughts and words ring true; and, sadly, there are far too many of you.

That said, I do acknowledge my part in the AIP/restrictive diet movement, as well as my evolution. When I began focusing my practice on the field almost seven years ago, I jumped into the deep end of the pool head-first. My twin sister had recently been diagnosed with an autoimmune disease and was running out of treatment options. I truly believed AIP was the answer to her problems and to the prevention of ones for me.  

However, beginning with my revelatory client discussion five years ago and continuing on through my work with, and observations of, so many, I began adjusting my practice and approach to clients, while shifting my perspective about restriction and seeking other options available to those with illness.

Make no mistake, I continue to believe that removing inflammatory foods can be useful in healing inflammatory disease and that customized restriction can have a multitude of benefits under the right circumstances.

However, I patently reject the one-size-fits-all approach to wellness so prevalent in today’s communities, which unfairly stigmatizes and rejects those who “fail” or cast doubt. Because for too many, AIP and other restrictive diets are the start of a painful, emotional journey they didn’t see coming. Instead of finding the magic bullet they felt was promised to them by the “nutrient density” and “focus on what you can have instead of what you can’t” jargon, they’re struggling and confused and don’t know where to turn. 

It’s not about the food; it’s about each person’s relationship to healing. When we focus on that, healing happens. 

I would love to hear from you. If you would like to share your story, please do. You can comment here (scroll to the very bottom of this page) or message me directly: transformationaleating@gmail.com

Footnote: 

Here are links to the labs I regularly use and suggest to my clients. These resources help uncover the real root of inflammation associated with autoimmune disease.
Diagnostic Solutions/Gi-Map, Vibrant America, Cyrex Labs, Thryve, Viome, Max Gen Labs, Nutrition Genome, Precision Analytical. 

My website and IG aren’t AIP Lifestyle anymore. I run the Beyond AIP FB group which is a safe and supportive place for those growing out of AIP. And, while I still have Autoimmune Protocol Diet FB page, I do so because I want the emerging autoimmune science to be shared in a thoughtful way and give resources beyond restrictive dieting.

29 Comments

  1. Avatar Arya September 26, 2019 at 9:43 am

    Hello Jessica , I am so happy to see this post . I am one of those people who developed binge eating disorder during AIP. I have multiple sclerosis , though I am in remission for two years but I was suffering from joint pain and all the rhomatology tests were negative and then I was just taking NSAIDS every day. When I knew from AIP, I thought i would give it a try then after one month i would know what are problematic foods to me and bring back the rest but I can say I couldn’t reintroduce any thing successfully. Actually I was doing so fine on AIP and my joint pain vanished , and I was so happy of it so I was not even having any sweets or treats and may be my major problem started when I started to add inttermittant fasting with AIP like wahls paleo plus . Then i started to crave sweets , i started to eat so large amount of dried fruits ,bananas, sweet potatos. And I was in so much physical pain in my stomach eating all that large amount of food in so short time and this was continuing and compeletly out of my control and I was sure that this is more distructive that being on a normal diet so I dicided to come out of AIP for some time to stop the binging but it was aweful because I lost oral tolerence to all food I was eating before the diet , so I had diahrea all the time and vominting and I was still binging with more variety of forbidden foods and the joint pain came back after one week . I am working on recovery from binging and I am back on AIP ,trying not to restrict myself this time .

    Reply
    1. Avatar Jessica October 2, 2019 at 4:27 pm

      Hi Arya! So glad to read your message. I am so sorry you are going through this. However, it seems that you are finding some healing in regards to the sugar cravings? What recovery are you using? Others who read your comment may find it super helpful if you share what is working for you. Thank you again for the comment. xo jessica

      Reply
  2. Avatar Kim September 27, 2019 at 9:38 pm

    It’s serendipitous timing that I found this post. I started AIP (again) two weeks ago. And while I feel better and stronger, I see some disordered eating patterns emerging that weren’t there before. Like I’d rather skip a meal than cook sometimes. I don’t eat lunch at work because I have a sensitive stomach that easily gets put off by leftovers (some foods just aren’t good reheated). I’ve been relying on AIP treats more. I eat a bag of plantain chips, a can of pineapple, and an epic bar for breakfast. And there’s is underlying guilt for not eating enough veggies or bone broth or organ meat. Part of AIP makes me feel so empowered, like I’m taking control of my health and preventing disease. But another part feels isolating and a sense of not being enough. I fear of deviating from it because then I’ll get worse. And anytime I’m not doing AIP, I tell myself I’m going to get another illness or that I’m causing disease because I use food to cope with stressful times in life. Again, i feel great on AIP, but I don’t think it’s healthy to avoid eating for the sake of compliance on a daily basis.

    Reply
    1. Avatar Jessica October 2, 2019 at 4:23 pm

      Hi Kim!! Gosh, I totally resonate with every single word you shared here. Isn’t it odd that both things are true and both things are happening at the same time? That is what makes this situation so confusing and tricky. I am starting a 6-week online support group Nov 1st. You may be interested in it! It is a very small group and support for the exact situation you are experiencing. Thank you for sharing your comment. xojessica

      Reply

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