Treating Chronic Illness #3: Making Dietary Changes took 10 Years

As I described in 11 Under-utilized Tools for Treating Chronic Illness, dietary changes can be an important component for working with chronic disease. Changing how we eat tends to be underestimated and can also feel daunting and unclear. The process that lead me to make a drastic and proactive change in my own diet took 10 years.

It would have been nice to have made this change from a farseeing conscious place, but ultimately it was fear and a sense of urgency that drove me to making dietary changes. Even then, it was not my gradually progressive experience of chronic fatigue but a set of seemingly much smaller symptoms that got me motivated. These symptoms started with a dry mouth and evolved over a number of years to include painful hemorrhoids. Fear of pain and symptoms and where they might lead, finally outweighed my fears of deprivation and overwhelm that I expected with making a major dietary change.

In short, I started the GAPS (Gut and Psychology Syndrome) diet a year ago ⁽¹⁾described briefly in this post on working with food with additional links below. My hemorrhoids have since all but resolved for the first time in 4 years and I am making gains with some of the other symptoms of dryness. Having a big picture with a clear context for a dietary approach has turned out to be unexpectedly empowering and a source of relief, both emotionally and physically. For now, I seem to be buying time while I continue to explore underlying causes of these symptoms.

There is a group of additional symptoms, including hemorrhoids, that I never knew to be related to dryness but that are aggravated by the same triggers, which I’ll introduce below. In future posts I’ll theorize about causes of these symptoms and what may link them together. I’ll also present more detailed lists of foods that were helpful to add as well as avoid, and tell you more about the GAPS diet.

Gradual Onset of Symptoms and Dryness

My first symptoms of dry mouth started about 10 years ago. The onset was so gradual that I thought it was part of living at high altitude in Colorado. I’ve had a lifelong pattern of dry skin and dry lips and this seemed to just be a continuation of normal. In retrospect the first symptom was probably thirst, which I developed after moving to Colorado in 1999. What caught my attention around 2005 was a mild burning sensation on my tongue. Over a few years the symptoms came and went but I eventually started to experience mouth dryness as the most predominant symptom.

Common Causes of Dry Mouth

Common causes of dry mouth symptoms include medications, radiation, chemotherapy  and some diseases such as Sjogren’s, diabetes and HIV/AIDS. Sjogren’s is an autoimmune disease whose hallmark symptoms include dry mouth, dry eyes, and fatigue. Although I’ve had two positive tests for the antinuclear antibody (ANA), which is seen in 70% of people with Sjogren’s, it is also found in chronic fatigue and in up to 20% of the healthy population. Other testing has not supported this diagnosis for me ⁽²⁾There is no single test that confirms diagnosis of Sjogren’s. My ESR, which is a marker of inflammation seen in many diseases, has been well within normal; my rheumatoid factor, which is found in 70% of patients with Sjogren’s has been negative; I eventually got tested for SS-A (or Ro) and SS-B (or La) antibodies, which occur in 40 to 70% of people with Sjogren’s and were negative for me. I have not done any testing of salivary or tear flow or had a biopsy. In working with symptoms of dryness I’ve found very little helpful information on the web so it’s been a process of trial and error to understand, work with and treat my symptoms.

A Group of Symptoms linked to Dryness?

Over a number of years I realized that foods were a key trigger for my symptoms of dryness. When I ate desserts and vinegared foods ⁽³⁾such as vinegar in salad dressings and in a favorite Quebec tradition of fruit ketchup that accompanies most meals, my symptoms expanded from mouth dryness to include dry and cracking lips; as well as dryness in my nose and sinuses, which made it harder to breathe, especially at night. Symptoms of dryness could progress to throat dryness that triggered choking spells, usually in the early morning hours. Over time symptoms evolved and I sometimes experienced dry eyes, dandruff, restless legs, waking between 3:30 and 5:30, and eventually, hemorrhoids.

A medical intuitive helped me recognize that the common factor with the food triggers I was identifying was that they were acidic ⁽⁴⁾For me these foods include sugars and carbs, from desserts, breads and pastas to starchy vegetables; fruit, including lemon and limes; legumes and grains; and red meat, which is the most acidic of animal proteins. The process of identifying problem foods had a mindful curiosity to it, but it was also reactive and associated with increasing fear as my symptoms persisted and my food options continued to diminish.

Onset of Hemorrhoids

Although symptoms were reduced when I avoided certain foods, they gradually evolved and I developed thrombosed hemorrhoids in 2010, which was excrutiating and new for me ⁽⁵⁾see wiki for more on hemorrhoids.

I learned from an acupuncturist that the foods I’d been eliminating were appropriate and that there were more I needed to avoid for treatment ⁽⁶⁾these included nightshades: eggplant, chillies, green peppers, tomatoes, and potatoes; nuts and shellfish; and spices (I’ll discuss these in more detail in a future post on hemorrhoids). My symptoms improved over 3 months with acupuncture and diet but underlying symptoms of gut inflammation continued. For 3 years they remained easily exacerbated and I had a new symptom of burning in the area anytime I sat for more than a few minutes at a time.

The Turning Point

The decision to make a radical change in diet came after a final, unexpected series of exacerbations in the fall of 2013. The first was a flare in my hemorrhoids following a plane trip to see my in-laws, which continued through Thanksgiving 6 weeks later. Instead of the fun, connecting low stress holiday we usually had with our friends, I experienced a night of intense pain from feeling an urge to have a bowel movement but being unable to do so. It was one of the longer, and more stressful, nights of my life. I’d experienced this symptom, referred to as fecal impaction, less intensely a couple times in the preceding year or two, and the progression and pain unnerved me. I was distressed from not knowing how to manage it or prevent worsening. My level of stress scared the friends we were with too.

Our friend, who I’ll call Wendy, pulled a diet book off her shelf the next day and gave it to me to read.

Wendy’s timing was serendipitous. It was the third time in 6 months I’d heard about making big changes in the way I ate. A close friend who has a chronic illness had mentioned GAPS earlier in the summer. I’d been curious, but not captivated. I’d also been enthralled by a New York Times article describing a journalist’s difficult and unconventional journey to treat her son’s juvenile rheumatoid arthritis. He’d recovered on a diet similar to GAPS. I’d been inspired by her story but somehow never really thought that it could apply to me. Perhaps this was because I have a different illness, or because I hadn’t noticed changes with my fatigue despite being on a very healthy diet for years. It was also partly that I couldn’t bear the idea of further narrowing a diet that was highly restrictive, frustrating and ultimately, ineffective in preventing the evolution of symptoms.

The GAPS Diet

The GAPS protocol ⁽⁷⁾Campbell-McBride, N. (2010). Gut and psychology syndrome: Natural treatment for autism, ADHD, ADD, dyslexia, dyspraxia, depression and schizophrenia. Cambridge, Medinform Publishing. Here’s the GAPS book and the website was the first comprehensive approach to eating that felt like a fit for my symptoms and needs. It not only accommodated all of the food intolerances I’d developed over the years but it also provided explanations, backed by research, for these sensitivities. The theory also explained many of my symptoms ⁽⁸⁾Gut inflammation decreases the ability to effectively break food down and simultaneously increases gut wall permeability. This leads to inappropriate substances entering the blood stream and causing many kinds of symptoms, including many that I’d had since the onset of my chronic fatigue. This is increasingly referred to as Leaky Gut. I was profoundly excited by what I read and started the GAPS diet in early December 2013.

Reading about GAPS was motivating and made it feel doable. It felt encouraging to have a plan that not only eliminated foods, as I’d been doing unsuccessfully for nearly a decade, but that also educated me with a comprehensive philosophy and plan for restoring health. It was a relief to finally be able to shift from being fearful and reactive to feeling proactive. The change in my attitude was a huge boon and made me feel optimistic in a way I hadn’t known for years.

Since starting GAPS I’ve read about people who have recovered or improved using similar diets, such as from multiple sclerosis ⁽⁹⁾Boroch, A. Healing Multiple Sclerosis: Diet, Detox & Nutrit​ional Makeover for Total Recovery; her website, ⁽¹⁰⁾Wahls, T. and E. with Adamson (2014). The Wahls Protocol: A radical new way to treat all chronic autoimmune conditions using Paleo principles, Avery Trade and Penguin Publishing Group, her website, and rheumatoid arthritis ⁽¹¹⁾testimonial on the GAPS website of a full recovery from RA, which took 5 years; a blog post of a woman slowly recovering from RA on the “Paleo Autoimmune Protocol“; a blog post about a woman whose RA has improved greatly since starting GAPS. This approach is being used to treat autoimmune diseases of all kinds, including chronic fatigue and fibromyalgia ⁽¹²⁾Naomi Campbell-McBride, author and founder of GAPS, describes CFS as one of the most difficult illnesses to treat. You can search her GAPS FAQ for these and other diseases and symptoms; Here’s a blogger describing her improvements with Fibromyalgia. The author is currently working on a second book, which is called the Gut and Physiology Syndrome (GAPS). It follows the same philosophy and dietary changes but may reach people with chronic physical illness more effectively with a title that doesn’t infer a psychological cause.

Improvements on GAPS

I’ve been excited about the GAPS diet since day 1 and continue to feel deeply appreciative of it. It has given me a comprehensive new tool for working with inflammation and signs of autoimmunity. It offers hope that recovery is possible, including examples of others who have improved or recovered from chronic diseases. Having a philosophy and a context for understanding my symptoms has helped me stay true to my diet, which I couldn’t do in the past.

When I go grocery shopping now, choosing fresh vegetables and high fat meats is an enjoyable process rather than a limitation. I no longer feel frustrated, depressed or deprived as I increasingly did with my only plan that involved avoidance of an increasing number of foods. Rather than testing things out with a little dessert or carbs every few weeks, as I did for years, I have clear reasons for staying away from unhelpful foods. Other than a handful of small cheats (such as eating an apple from the Cortland apple tree in our front yard last fall, which was worth every brief symptom exacerbation!), it’s been easier to stay on track.

Evidence of progress has been slow to emerge and I felt discouraged when I saw no changes after two months on GAPS, but the gentle and spacious nature of this approach has been helpful and calming to my sensitive system. It’s also understood that these types of changes often take time and that I may need to be on a GAPS diet for 2 or 3 years as a minimum. I started experiencing improvements after about 7 months, which I’ll describe in a future post.

I don’t think that there is a one-diet-fits-all. Rather, I’m coming to think that it’s a process of finding the right fit for each one of us. I’m also beginning to think that major dietary changes, and not just the ones of eating in a more healthy – or limited – way, may be appropriate and perhaps even necessary when working with health problems as deep and as pervasive as chronic illness and persistent physical symptoms.

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Related posts:

December 2020 Update How I Overcame Severe Food Intolerances

11 Under-utilized Tools for Treating Chronic Illness: building on lessons from brain plasticity, epigenetics, and trauma

Working with food, diet, and survival patterns