How Nicole Recovered from 40 Years of Undiagnosed Celiac Disease

Nicole M after pic (vibrant and healthy)

Back when I was sick and in pain, I searched Google for months hoping to read about someone just like me that was able to stop their autoimmune disease. Most nights, I found nothing and went to bed scared and afraid.

But once I found a few people that had success with SCD, I was inspired. I thought, “Maybe this could be the thing that changes my life...”

And it was…

But I wouldn’t have tried the diet without reading those 2 success stories…

Which is why we’re committed to continuing to share as many of these stories as people are willing to write. You see, we get emails every day from people who are FINALLY starting to heal – FINALLY starting to stop their symptoms. But not everyone is willing to share it with the world just yet…

Is Leaky Gut Making You Sicker?


So, when we find someone who is, like Nicole, it means the world to me. Because I know there’s more people out there, sick and in pain like I was, just hoping to read a story like hers to FINALLY take action.

I’m honored to share another amazing success story – Resolve to Begin with you, in hopes that it inspires thousands of others to take action.

How to Build Your Custom SCD Diet: If you need more help creating a custom version of the Specific Carbohydrate Diet that works for you, click here to get our step-by-step guide to using this diet to stop your chronic illness.

Table of Contents

It Must Be the Stress
I Woke Up and Half My Face Was Numb
It Must Just Be Allergies
That Was When the Worry Set In…
In the Meantime, My Health Continued to Fall Apart
Two Years Ago, I Wouldn’t Have Believed Any of This
I Continued to Have the Monthly Facial Swelling
We Got on a Plane to Minnesota in the Dead of February
I Was Waiting For What Felt Like a Lifetime
I Finally Reached a Tipping Point
I Immediately Went on the Specific Carbohydrate Diet
Looking for a Silver Lining in All This…

[Enter Nicole]

It Must Be the Stress

“It must be the stress,” I told myself in front of the mirror as I watched my right eye twitch uncontrollably. “How could it not be?” I consoled myself.

For the previous three weeks, I had barely slept: my boyfriend had just been medevacked to Stanford Hospital for emergency spinal surgery and we weren’t sure if he was going to walk again. We were back home in Mendocino County but we were traveling down to Stanford for appointments every week. I was staying up late researching Cauda Equina Syndrome online, organizing doctor notes, battling health insurance, and trying to convert my worry into the confident loving kindness I wanted to give my partner.

Before Nick’s surgery, my late nights were the byproduct of a solo art show that I was preparing for. I was dedicated and excited to share my new body of work; the small encaustic panels displayed together conveyed a relaxed, easy vibe that my higher self would always like to emanate. Images from my surf trips to Mexico, mixed with natural history illustration and splashes of acrylic paint, exhaled a wanderlust that is the baseline running through my life. It felt ironic that such a sun-dappled, salt-sprayed collection could be the product of 2:00am fluorescent-lit art studio perseverance.

Before that, my late nights were due to six months of caring for my dad who had Stage IV lung cancer and was living with us to get the best treatment possible. My dad survived, and we came through the experience even closer than before, but during his illness I was racked with anxiety and the driving need to do my absolute best to provide the salvation he needed.

I Woke Up and Half My Face Was Numb

Nicole's face swollen and numb

After the eye twitch, which quickly took on the life of a nervous tic, the next big symptom was waking up one morning with half of my face puffed up and numb. The left side of my lower lip, my left cheek, and left eye all looked like they had been molded haphazardly from Play-doh. There was a loss of feeling, but also a distinct tingling, like a simultaneous hypersensitive sensation.

“Is this a stroke?” I thought, looking in the mirror, horrified by the kind of Elephant Man face looking back at me. I could still speak, I still knew my middle name, but I did not look like myself.

My mom was staying with us at the time helping me care for Nick and I remember feeling embarrassed to show them that something was wrong.

How was I not able to handle this? How was my own previously healthy, vehemently capable body letting me down?

Looking back on it, it’s no wonder my system was going haywire. But at the time, I remember only feeling incompetent and weak, and that I just needed to buck up more in my role as primary caregiver.

It Must Just Be Allergies

I’ve grown up with allergies, the most severe being my nut and peanut allergies, so my first rational thought was that this was an allergic reaction. I popped a couple Benadryl, drank copious glasses of water, took the dogs for a run: all remedies I’ve used in the past to get the adrenaline pumping and combat the histamines to address any food allergy reactions.

By later that afternoon the puffiness diminished, and I felt comfortable saying that it must have been a one-off reaction to something I ate the night before. I didn’t consider going to the doctor until the same symptoms occurred two days later.

This time, the right side of my upper lip looked like I’d been through a round in the boxing ring. Again, numbness and tingling intermixed for a strange sensation that felt both deadened and activated. Not wanting to consider myself an emergency, I bypassed the ER and started with the walk-in clinic across the street from our local hospital.

“Allergy!” the doctor on duty proclaimed.

“Write down everything you eat. Come back next week for blood tests.”

It was a starting place at least.

With that first visit, I entered through the portal into what my late uncle, Dr. Robert Martensen, dubbed “the medical-industrial complex,” one that can be both maddeningly frustrating and profoundly illuminating, depending on who is assisting us along the way. With those first blood tests, I wish I could have been fitted for a port, because my blood continued to be extracted for the next nine months at a vertiginous volume.

Those first two facial swellings occurred in September 2014. Two days later, I got my period. The next month, the swelling returned, and two days later I got my period. Was this a pattern revealing itself or was it a mere coincidence?

In between the swelling, I was starting to experience other symptoms:

  • I would wake in the night with numb hands and feet
  • My heart would race, then slow to an almost flat line pace
  • I alternated between constipation and diarrhea, with severe abdominal pain after eating anything
  • My stomach was so bloated we started to call it “my alien baby.”
  • My vision was blurry
  • My thinking was muddled
  • I began to lose weight
  • The right side of my face felt fuzzy all the time
  • My lips were incredibly painful
  • And I had absolutely no energy

For me, who normally runs on an allocation of boundless energy, spontaneous fun, and expert planning, this last symptom was probably the most out of all that signified that something was horribly wrong. Not only could I barely care for my wonderful boyfriend who was trying his damnedest to regenerate his spinal nerves, or my two fantastic dogs who need daily walks and toddler-worthy attention, or my self-made graphic design and consulting business, I could barely get up off the couch to make dinner.

Blood test results were unremarkable:

  • I was low in vitamin B and vitamin D
  • I started getting vitamin B shots and taking extra vitamin D3 supplements
  • I wasn’t anemic
  • My blood pressure at the time of my office visits was fine

I started eating only home-cooked meals to better track ingredients in case of a new allergy. I knew I wasn’t ingesting gluten; I was diagnosed with Celiac disease two years earlier and adhere to a strict gluten-free diet.

My GP at the time started to respond to me with the patronizing air that he might use with, heaven forbid, a hypochondriac!

It was a sign that I needed to take matters into my own hands.

That Was When the Worry Set In…

intense searching on laptop with mouse

I was born with a tenacious spirit that at times can be my downfall, and other times be a blessing. Couch or no, I was not going to take this lying down. I was going to get to the bottom of what was happening inside my body.

What resulted was a much longer list of questions than answers:

What about the art supplies I had been using back in August? Maybe I exposed myself to something toxic?

Having survived melanoma, and being in a family with a history of breast cancer, I’m already extremely careful of exposure to toxins and xenoestrogens. I procured the MSDS reports for every art supply I used and they all passed safely.

What about surfing in contaminated water in the summer?

As a Surfrider chapter activist, I have direct access to ocean water quality reports. Cowell’s Beach in Santa Cruz was indeed on the “most polluted” list that summer, and I had surfed the most glorious, peeling wave one morning, unknowingly in fecal sludge. But the beach had never been officially shut down, a sign that no other medical cases were reported.

What if it was agricultural pesticide use?

I live in the first county in the US to ban GMOs, we consistently have the best air and water quality in the state, and I eat at least 80% organic ingredients. It seemed unlikely that my symptoms were because of environmental risk.

What about Lyme disease, that elusive and multi-symptom illness that is so prominent in Mendocino County?

What if it was my dogs kissing my face?

What if it was my face soap?

In the Meantime, My Health Continued to Fall Apart

I was now making frequent visits to the ER because I was having heart palpitations, blood pressure spikes and drops, and passing out. I was down from 120 pounds to 108 pounds in just a few months and I felt like a shadow of myself.

I had to let clients go and continue on just the bare minimum of work.

My mouth hurt too much to use mint toothpaste; I used Tom’s Kids Silly Strawberry.

I didn’t wear any cosmetics for fear of possible allergy.

My parents both stepped in and helped immeasurably with what felt like just surviving.

Netflix became a nightly ritual.

Nick swaddled his numb left foot in a heating pad to soothe the neuropathy. We were both down and out. Only recently my partner confessed that he feared I was dying.

Over the course of two months, I saw nine different doctors, including:

  • a dermatologist
  • an endocrinologist
  • a rheumatologist
  • and an oral surgeon

I came prepared to each appointment with a dossier of my illness: a chronological outline of my symptoms, remedies I had tried, conditions I had researched, and all my test results. It fit inside a metal case my dad brought back from the Army in Germany and it weighed about 20 pounds.

I was met with a spectrum that ranged from intense curiosity to utter befuddlement.

In the best cases, more tests were ordered, which meant at least there might be a lead. In the worst cases, there were shoulder shrugs and innate dismissal. The easiest remedy seemed to be a prescription. At one point I was taking Allegra and Montelukast, overlapped with Benadryl, Prednisone, and Klonopin, all without seeing any positive results.

Two Years Ago, I Wouldn’t Have Believed Any of This

Two years ago, if someone told me they couldn’t walk down the detergent aisle in the grocery store without having a severe allergic reaction, or had to leave a theatre seat because their neighbor’s perfume was making their lips hurt unbearably, I would have thought they were over-reacting, or too self-involved, or maybe even a little crazy.

Playing in the foreground would be my mantra, “Don’t judge, don’t judge,” but in the background I’d be thinking, “Wimp.”

I’m a woman who changes my own spark plugs, dug the foundation to my art studio, and doesn’t think of myself as overly sensitive. Suddenly, I was that highly reactive person who couldn’t order off a menu or stick my nose in a bouquet of flowers. I felt like I was condemned by some Brothers’ Grimm-style curse, one of the really strange ones involving arugula and first-borns.

What I learned was that I needed to loosen up my judgment and expand my definition about what makes us human. We are not invincible — sometimes we falter, sometimes we break. These debilitating times in our lives are not character flaws, and they also don’t need to seduce us into perceiving ourselves as weak.

I Continued to Have the Monthly Facial Swelling

Throughout all this, I continued to have the monthly facial swelling, preempting my period by a few days, and sometimes accompanied by a torso rash.

My lips were gigantic, swollen, bee-stung. This was not a desirable plumping effect. This was duck-billed platypus and Donatella Versace rolled into one. When I had to be out in public I feared being incriminated by poorly-placed Botox.

This was, as I learned from my online investigations, full-blown angioedema. It was a word I barely knew how to pronounce let alone determine what type I had. There is allergic angioedema, but there is also the much more severe and life-threatening hereditary angioedema.

Thousands of patients worldwide struggle with this condition that can occur at any time and needs immediate treatment with a self-administered shot. I found my local rep through the Hereditary Angioedema Association site and she set me up with the preeminent angioedema expert in Northern California, Dr. Joshua Jacobs in Walnut Creek, CA.

His wait list was long, but I felt there would be answers at the end of it.

My visits to Dr. Jacobs’ office were like a life raft in an otherwise turbulent sea of uncertainty. I could list off my seemingly discordant symptoms to my doctor and not have him raise a questioning eyebrow. These were all valid experiences for someone having an autoimmune crisis.

Further testing revealed that I did not have hereditary angioedema, but the diagnosis did not lessen Dr. Jacobs’ concern for me. Somehow I was having an allergic reaction to my own body, and given the monthly pattern, it was a reaction to my own hormones.

I teamed Dr. Jacobs with my gynecologist and we devised a plan that if we temporarily shut down my ovaries we would be able to determine if this was the true phenomenon. If so, after a few months of trial with Lupron shots, I could consider an oophorectomy.

At 43, I was reluctant to instigate a self-imposed menopause, and while I yearned for the hope of anything that would take me out of the misery I was in, when it came down to it I couldn’t follow through with the first Lupron shot. It seemed like such a drastic measure with the potential to further set my body into a tailspin.

Dr. Jacobs was understanding and did what I assume the best physicians do when they reach a brick wall in their specialty and need to preserve their patients’ well-being: he recommended I get myself to the Mayo Clinic pronto.

We Got on a Plane to Minnesota in the Dead of February

Within a few days, Nick and I bolstered what little energy we had, propped each other up and got on a plane to Minnesota in the dead of February.

The Mayo Clinic is indeed a fortress of efficiency, professionalism, and medical curiosity. We shuttled from one department to the next, as I relayed my story over and over.

My strange maladies were now elevated to a “constellation of symptoms” and my undiagnosed condition was no longer of freakshow caliber – I was under the care of physicians whose microscopic passion is finding the system within the system, locating the missing puzzle piece, and fixing the flaw by any means necessary.

My intake physician highly recommended I see the gastroenterology department while I was there.

“I think your gut health could be at the root of many of these symptoms,” Dr. Coelho, the gastroenterologist explained.

Gut? But I was living gluten-free, I was eating organic home-cooked meals, I had tried cutting out dairy and sugar with no positive outcome.

How could my gut cause such a whole-body disruption?

Because my health insurance would not cover me out-of-state, I needed to be frugal and have these questions answered back home in California. Dr. Coelho suspected SIBO and dysbiosis, and she sent me on my way with a list of tests to follow up with at UCSF.

I Was Waiting For What Felt Like a Lifetime

woman watching the clock intensely

Perhaps the worst part about the medical-industrial complex is the waiting: the waiting on a list to get in to see a new doctor, the waiting for test results, the waiting in the waiting room.

There is a silent solidarity that happens in waiting rooms. We are all suffering in some way. We may not be there for the same reasons, but the overriding reason is that there is some pain, or disharmony, or affliction occurring within us. We are compliant to sit and wait together, each in our own isolated hurt.

After two months of waiting to see UCSF Gastroenterology, the waiting room at their Mount Zion campus provided an experience I can only describe as a magical, prodigious sign from the universe.

(Nick accompanied me on the trip down to San Francisco, chauffeuring me to appointments, as I had for him six months before.)

Across from us sat an elderly African-American man in a Bob Marley T-shirt, painting a large cardboard canvas on his lap. With bright yellow paint he was adding a golden halo around the Golden Gate Bridge; it was art naïf in the purest, most heartfelt sense, and you could see by his concentration that he was transmitting a force.

I complimented his work.

“I’m just using the talents that God gave me,” he said. “I feel so fortunate to have this gift. I just have to share it.”

Although I would define myself as a spiritual person, not a religious one, in that moment tears flooded down by cheeks. It was Bob Marley returning to Zion at Mount Zion, it was gratitude for the blessings we have, even when faced with pain and uncertainty, it was feeling the need to share our vision and our joy with the world.

All my many months of delving into my unhealthy, broken, dysregulated body needed to shift now into the lightness of positive energy and my inherent desire to be well. This is the light that fueled my next chapter of many more tests and diagnoses, primarily within the UCSF system.

At one visit, I sat on the edge of the examining table, swinging my cold ankles back and forth as a parade of nine dermatologists crowded into the tiny room rubbing their hands together in excitement to procure such a fine specimen of complex health issues.

The bottom line of my examinations was that I had:

I went on three courses of antibiotics to clear bad bacteria from my gut, which felt like a necessary kickstart, although the longest-lasting takeaway was learning about the Low FODMAP diet, part of which I continue to integrate into the SCD diet.

I Finally Reached a Tipping Point

At some point in my journey through the medical-industrial complex I reached a tipping point. There was only so much pill-pushing, blood-letting, and drafty, open-backed gowns I could take.

I needed to find a gentler way, one that looks at my whole being and how my symptoms might be interrelated. I started seeing a highly respected local acupuncturist, Ross Lake, for weekly treatments.

Ross was the first practitioner to explain the connection between the parasympathetic nervous system and the gut. The acupuncture treatments calmed my system, and the Chinese herbal prescriptions started to restore balance to what had felt so hollow. Lying on the table with needles initiating the work I was able to sink into the deep rest that our foundations yearn for.

After only one month of treatment I made it through my first menstrual cycle without swelling.

With a 5,000 year history, I firmly believe that Chinese Medicine has something to teach us about an holistic approach that treats the whole person as an energy system in which the body and mind are unified. This way of healing feels more in alignment with my new-found confidence that, with the right resources, knowledge, and compassionate care, our bodies have the innate capacity to move beyond suffering and transform pain into healing.

Concurrent with my gravitational pull towards Chinese Medicine I discovered the SCD Lifestyle website. I was on a wild tear to learn everything I could about SIBO, and Jordan and Steve’s site was one of the first resources that popped up.

While my previous medical forays delved into frightening conditions controlled only with heavy medications or surgery, this was stepping into a world where patients were taking their health into their own hands and healing themselves with diet, over-the-counter supplements, and what seems closer to our ancestors’ healing methods.

To cross over from the seduction of big pharma and beeping lights, integrative medicine can seem suspiciously simple, and I remember feeling a little wary as I read the SCD Lifestyle blog posts about how to make my own 24-hour yogurt and how to heal my gut lining, one strand of sauerkraut at a time.

But why would I not trust these guys, as Jordan bopped around his room in his podcasts with buoyant enthusiasm, and Steve eloquently confessed his weaknesses with falling off the wagon and indulging in forbidden foods, only to encourage us that it’s not worth it?

These were people who experienced similar journeys as I had, researched diligently and uncovered a wealth of knowledge about regaining our digestive health, and felt compelled to share it with us.

My ancestors were Danish cheese makers; it made perfect sense to me that I would follow in their footsteps by fermenting dairy in my kitchen.

I Immediately Went on the Specific Carbohydrate Diet

I ordered my Yogourmet. I started taking Betaine HCL and digestive enzymes before meals. I began trying almost every probiotic under the sun to find which one works best with my intestines.

Through Jordan and Steve, I was introduced to a whole community of integrative practitioners (all became bedside reading):

I bought a slow cooker and started making bone broth. I cook every day from Danielle Walker’s fantastic Meals Made Simple. I explore new and inventive ways to use coconut flour.

I spend an enormous amount of time cooking, menu planning, and checking in with my digestive system to try to listen to what it needs (fewer brassicas, more protein, less dairy – it changes weekly).

Slowly, very slowly I began to feel better.

As a little of my strength returned, I started attending weekly Qi Gong classes, which I can feel distilling an inner vitality and facilitating a pervading sense of calm within me.

I continue to have excellent results from acupuncture treatments. I was careful not to jump into my old exercise pattern too enthusiastically, but over time I’ve regained enough strength that I could plan my next surf trip to Mexico in March.

What It Felt Like During The Nightmare…

I can only describe what it felt like during those nine months of intense illness in fragments:

  • Synapses weren’t firing
  • Cells weren’t dividing
  • Tissue wasn’t rebounding

There’s a visceral quality to the pain that inherently embodies scarcity and malfunction. As an artist, I know I see things more as a visionary and less as a scientist than they really are, but either perspective recognizes our bodies as highly mechanized organisms that rely on our interconnected systems.

I still don’t know exactly how all my symptoms tied together. When we feel better we don’t always want to question what was wrong.

My intuitive theory is that after 40 years of undiagnosed Celiac disease I had waged enough damage to my intestines that even a gluten-free diet wasn’t going to heal everything. Dysbiosis and malabsorption declared all-out war on my nervous system sending my allostatic balance into outer space. In turn, my body went into fight-or-flight overdrive where it recognized even my own hormones as alien invaders.

Throw in SIBO, bloating, constipation, diarrhea, and overtaxed adrenals into the mix and it’s no wonder that I was breaking down.

Looking for a Silver Lining in All This…

Nicole M after pic (healthy and happy)

I understand now how embedded in our mammalian survivor instinct there is a primal urge to retreat. Unable to take care of the rest of the world, I needed to turn inward just to focus the energy on taking care of myself. I hermitized, I burrowed, I dug deeper into myself than I ever had before. It was a profound lesson for me that gave me no choice but to stare my own vulnerability in the face.

I was no longer the magnanimous hostess for dinner parties at our house. I had to defer my Surfrider position as bodhisattva of marine life on our fragile coastline. I didn’t even go in the ocean for six months because I knew I didn’t have the stamina, and a brief foray into our gym pool left me shivering and running for the sauna.

Up until now, I’ve always been skeptical of the phrase, “Look for the silver lining.” For me, it denoted an affectation filled with too much striving, not enough realism: A pat, bourgeois sentiment meant to quickly soothe our Western sensibility. In the wake of my illness I’ve begun studying the Tibetan Buddhist Lojong trainings, and I find myself returning to one gem in particular, number 11 out of 59 that advises, “Turn all mishaps into the path.” It is essentially the same precept as the silver lining, but somehow it offers the potential for a broader awakening to me.

Through my illness I learned that sometimes stepping into our core is the most unselfish, generous act we can do. It is in essence “putting on our own oxygen mask before assisting others.”

Allowing myself to retreat and slow down on the path, to care for myself tenderly and lovingly, was one of the most rewarding outcomes of my healing journey, and quite possibly one that I might not have realized during my lifetime without having to transform out of suffering.

-Nicole Paisley Martensen

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Jordan Reasoner

About Jordan Reasoner

Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

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5 thoughts on “How Nicole Recovered from 40 Years of Undiagnosed Celiac Disease

  1. Avatar

    Great to hear about other’s success with SCD. i’m on about month 3 now, and i do feel like it’s helping me. i just found out about mycotoxins and am going to be integrating minimizing those along with detoxing, into the SCD.

    i have high hopes this will be a big jump for me, and hopefully i can get rid of my worst symptom at the moment, which is pretty intense brain fog.

    Anyway good to see it working, it gives me hope 🙂

  2. Avatar

    What an inspiring story Nicole, you battled through all of that much the same as I did ( I was told there was nothing wrong with me !) My friend found SCD so I started on the purred food, even went to the city with a back pack so that I ate right, it nearly broke my back but I did it and now I’m doing the adrenal protocol and all with 3 or more good stools daily most of the time.Endurance pays off doesn’t it Nicole Many thanks.

  3. Avatar

    Wow ! After almost feeling like giving up on everything after just over 6 weeks diagnosis I know it’s early days but I’m having more days days lately mentally ! Something I never suffered before or at least noticed ! The diet in finding my way with help from sources and experts ,reading ur story does give hope !

  4. Avatar

    Thank you for sharing this wonderful story! It is touching and inspiring. I have a very similar story myself, but with a completely different set of symptoms. None of that matters because in the end, we both overcame great suffering in a BETTER way. I agree that there is much personal growth to be gained from this, and I know you will do great things because of your experience.

  5. Avatar

    So similar! A lifetime of eating and drinking whatever felt good and suddenly one day it all caught up and I was celiac, allergic, fatty liver, etc. always had diarrhea after meals but no one connected it for me. Now I have “fat belly” but I am on the road to recovery after reading BTV and doing SCD! Quitting bad foods is a blessing now I am quitting smoking and cut back to just social wine spritzers! New job new diet new me new life! God is there with me in all of this and leading me to my true level of mindfulness! Thanks for sharing! We are not alone – food choices are killing all

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