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How Crohn's Disease Drove this Rational Person to Fringedom and Back

I was diagnosed with Crohn’s disease in my mid-20s. It was a classic presentation: 30+ urgent trips to the bathroom daily, fevers and sheet-soaking night sweats, and an achy-fatigue so deep that I could barely make it to the corner coffee shop and back to the couch. This was no stomach bug--it was an incurable disease.

The first line Crohn’s drugs proved only modestly effective so I quickly found myself careening toward the prospect of steroids that could damage my organs, immunosuppressive drugs with even worse side effects, and as a last resort even surgery to remove my bowels. I was horrified and I was desperate. I did the only thing I could think of: I googled it.

Naturally, the Crohn’s patients of the internet had some ideas of their own, mostly involving food, or lack thereof. I tried them all with a fanatical devotion. I ate nothing but lamb and rice for weeks, went without fruits and vegetable, and subsisted on juice, all to no avail. Then I came across the SCD – the Specific Carbohydrate Diet. And suddenly things started to improve. I threw myself in full force.

So for years I cut all complex carbs, sugar, lactose, and soy. I regularly downed peanut butter as a meal on the go. I fashioned pancakes from almond flour. I made my own yogurt--fermented for 24 hours to increase the bacterial concentration--and ate it daily. I envied the merely gluten intolerant and drove waitresses mad. It was every bit as hard is it sounds.

That’s the story of how I found myself--Human Biology degree in hand and ego predicated on feeling like a smart, rational person--religiously adhering to a dietary regime that dominated my life and came replete with the tell-tale signs of crazy pseudo-science. Dismissed by doctors but popular on the internet. Check. No controlled studies, scientific inconsistencies, and fanatical devotion by followers. Check check check. And the kicker: hypothesized mechanism of action involving invisible organisms. Check.

You see, Crohn’s disease is an autoimmune disease where the body essentially attacks itself. The SCD hypothesizes that Crohn’s is actually triggered by the body’s response to the gut microbiome – the unique bacterial ecosystem that inhabits every human’s intestines. The diet attempts to change the makeup of that microbial community. My GI doctor had never heard of the diet and tolerated it, just barely, only because he saw no harm in doing so. He told me in no uncertain terms that there was zero evidence for the diet or its proposed mechanism. What he actually said, word for word, was, “If you think standing on your head in the corner is making you feel better, then stand on your head in the corner.”

As it turns out, this isn’t just a story about a crazy diet that seemed to work against all scientific explanation. In a matter of a few years, the first medical textbooks described Crohn’s Disease as an abnormal immune response to gut bacteria. The term microbiome was coined and mainstream publications began publishing pieces on its incredible power. Venerable institutions are now studying the efficacy of the SCD. My GI doc actually prescribed me probiotics.

Of course, there’s no way to know whether the diet actually changed my microbiome or helped put me into remission. For those of us who consider ourselves scientifically minded, it’s all too easy to believe every acai-berry-buying, Kombucha-chugging, health-seeker is as foolish as an anti-vaxer. The truth is that medical science is advancing all the time and as a desperate patient, trying something that hasn’t been studied and (and probably? hopefully?) isn’t that harmful, is much more than just appealing. It’s actually rational. To my doctor in 2007, believing I could alter my microbiome and keep my Crohn’s Diease at bay was like believing that the sun revolves around the earth. But medicine is not physics. We are making new discoveries every day.

But this also isn’t a story about a crazy diet that seemed to work against all scientific explanation and then turned out to have a scientific explanation. It’s actually a long, roundabout way of saying that I’m truly, deeply, as happy as you might imagine to have today announced a partnership between PicnicHealth, a company I started to help patients manage their medical records, and uBiome, a company dedicated to advancing research on the microbiome. The partnership gives Crohn’s patients a free PicnicHealth Account and a free uBiome kit. It aims, for the first time ever, to advance research on Crohn’s and the gut microbiome by matching medical record data with microbiome data for Crohn’s patients. That the promise of the microbiome has made uBiome among the hottest, most cutting edge early-stage biotech companies in Silicon Valley is just the cherry on top.

PicnicHealth and uBiome partner to further IBD research.
PicnicHealth and uBiome partner to further IBD research

These days I’ve fallen off the wagon and I’m running to the bathroom a bit more often than I’d like. Still, I think this announcement confirms that at a minimum, I’m no longer standing on my head in the corner. I have to admit that I like it that way. In other words: I told you so.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

25,966

patients onboarded to platform

1,427,368

medical visits processed

56,861

facilities provided medical records

255,101

healthcare providers

95+

research programs

12

published posters and manuscripts

10

partnerships withtop 30 pharma

New Research

Discover how PicnicHealth data powered medical research in 2021

Keeping Patients at the Center

This year, experts from PicnicHealth joined podcasts, webisodes, virtual summits and much more to speak to the importance of patient-centric approaches when building complete, deep real-world datasets.

1

Build a support network.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.

2

Stay organized.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.

3

Plan for the future.

It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.

4

Explore treatments and clinical trials.

It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.

5

Make time for self-care

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one with Alzheimer’s. And don’t forget to keep a sense of humor along the way.

Click here for more caregiver tools and resources

Learn more about PicnicHealth's Research Program

Noga is co-founder and CEO of PicnicHealth. She was inspired to create PicnicHealth while struggling to manage her own health data after a diagnosis of Crohn's Disease. Prior to Picnic, Noga co-founded Lumni USA, where she raised and deployed the first US investment fund to help underserved students access low-risk, equity-style student loan products. Noga studied Human Biology and Economics at Stanford. She can regularly be found spacing out while meditating.

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