If this is your first time reading, I recommend you start with my 6-month challenge, week #1 choosing an idea and market validation and week #2 talking to others, building an MVP and focusing on value vs. growth and monetization.
tl;dr This week has been all about narrowing my focus even further to just gluten free, learning more about gluten free and those who are gluten intolerant and have celiac disease, as well as a couple social shopping and eating experiments. Big news: I actually recently realized I am gluten intolerant myself. I hadn’t really eaten my own “dog food” before, as I did not know I was sensitive to gluten, and it was interesting to put myself in the the shoes of my targeted user. Overall, this week has solidified my focus on this idea and gluten free audience in hopes of finding an elegant solution. Next week will solely focus on outreach to restaurants.
Week #3 is finished and the major milestone here is further narrowing my focus on those who are gluten free (and to a lesser extent, those with food allergies). This was a gradual process that involved interacting with healthcare professionals and to my (painful) realization this week that I myself am actually gluten intolerant. FDA also announced formal definitions for “gluten free,” which is a major step forward for those who are gluten intolerant or have celiac disease and couldn’t have come at a better time.
Admittedly, this week has been light on actual “building” things but heavy on being consumer-facing and living the life of a user who is gluten free. It reminds me of a story of a YC founder who sought to build a startup to help make ordering in restaurants easier; to do so, he himself took up a job as a waiter in a restaurant for several months in order to really live the day-to-day life of working in a restaurant to better understand the problems they face and gain deeper insights into potential solutions and gaps he could fill.
Note: this post is heavily context-oriented and talks a lot about gluten, celiac disease and gluten sensitivity. As Cusoy targets gluten free users, it is fundamental for me to really understand what is celiac disease and gluten sensitivity as a way of having customer empathy.
I. Healthcare professionals and lectures
II. Introduction to gluten free (gluten intolerance/sensitivity and celiac disease)
III. Interesting statistics about gluten free
IV. Discovering my own gluten intolerance
V. Social shopping and eating experiments
VI. FDA recent announcement
VII. Next week and key lessons
I. HEALTHCARE PROFESSIONALS AND LECTURES
Talking to a nutritionist
Some user feedback I’ve received recommended that I talk to healthcare professionals as another avenue of feedback, and something I had planned to do anyways. I cold-emailed several healthcare professionals and nutritionists who were certified gluten free and spoke with one on the phone for almost an hour – pitching my idea, talking about user feedback, getting her thoughts and advice on how to best approach Cusoy.
Remember the week when I decided not to target vegetarians and vegans? This one conversation with the nutritionist was the tipping point for me to extremely focus on gluten free and further eliminate Paleo. Paleo, admittedly, is a lifestyle choice. It’s a broad spectrum that is versatile and flexible to your individual tastes — when I decided to become Paleo, I wanted to focus solely on proteins and vegetables, and went dairy free, soy free and even foregone fruits. Someone else who is Paleo may still eat dairy and fruits. And that’s still Paleo and perfectly OK. My point is that it’s so flexible that there’s no standardization on what is really Paleo (my definition could be different than yours) and there’s no good, elegant way to solve that with an app. That’s probably why if you go to the App Store, nothing really turns up if you type in “Paleo restaurants.” It’s also fairly easy to modify what you’re eating when on Paleo, just some minor inconvenience but again, nothing as urgent and mandatory as gluten for people with celiac disease.
Whereas, on the other hand, someone who has celiac disease has to eat gluten free out of lifestyle necessity. It is a big pain point, and can negatively affect your lifestyle in that you have to be super careful of everything you eat and potential cross-contamination issues in restaurants. I’ll go more about celiac disease and those who are gluten intolerant in the next sections, but it’s the best long-term view and strategy to take, given that it’s here to stay and is a growing problem (also a growing market size and industry as well) — and Paleo, as much as I hate to say it, will probably be a “come and go” fad, not much unlike the Atkins diet. You’ll never really hear doctors recommend you go on Paleo, but many will tell you to go gluten free. You have no idea how many problems eating gluten can cause (I certainly didn’t) — but more specifically, how many health issues can clear up once you stop eating gluten — more on that later.
She also gave me excellent feedback on things to focus on concerning restaurants. I will definitely keep in touch with her and seek her advice as Cusoy progresses.
Attending a free lecture on what’s new with gluten?
As a member of some Bay Area Meetup groups, I receive announcements about upcoming events and one of them was a free lecture on the topic of what’s new with gluten, hosted by the HealthNOW Medical Center in Sunnyvale, CA.
The event description was as such:
Let Dr. Rick Petersen present the latest research and information on how gluten can cause health problems to the tune of over 300 different diseases. This lecture is for those who are wondering if they have a gluten sensitivity, or those who simply want to learn cutting-edge information about it.
Dr. Rick Petersen has co-authored “The Gluten Effect”, and as a Doctor of Chiropractic and Certified Clinical Nutritionist, he has successfully treated thousands of patients, changing their lives for the better.
At the event, I received very helpful information including basic introduction to gluten intolerance/celiac disease and exciting new research that he shared with the audience regarding gluten intolerance/sensitivity and celiac disease. I don’t want to jump the gun here, as you may not know what gluten free means (will be covered in the next section), but I’ll include very interesting insights I learned in the section following it.
Talking to those with industry expertise
Talking with a nutritionist and hearing a lecture by one of the leading experts on gluten has proved very helpful and beneficial in my own understanding of gluten free and those who are gluten intolerant and have celiac disease. Of course, ideally I would continue soliciting different professional opinions, but it was great to interface with two of them in a single week.
One of the takeaways and lessons of this section is that, depending on your particular idea and product, you should always seek feedback from different important stakeholders, especially those who have professional expertise in your area. In my case, it was imperative I speak with and listen to healthcare professionals and nutritionists who are much more knowledgeable than me to give me additional insights and feedback on Cusoy’s premise and direction.
II. INTRODUCTION TO GLUTEN FREE (GLUTEN INTOLERANCE/SENSITIVITY AND CELIAC DISEASE)
What is this gluten free madness, you ask? Is it just a fad? Why does it seem like it’s coming out of nowhere? Why is it important and why should you care? Or perhaps, why do I care about it?
Let’s do a quick Gluten Free 101.
What is gluten?
Gluten is a mixture of proteins in wheat, rye and barley.
What kinds of foods have gluten?
Lots of delicious (and not so delicious, depending on who you ask) foods: bagels, beer, bread, cookies, cakes, most other baked goods, crackers, pasta, pizza, pretzels, most cereals, natural flavorings, and many more… you have to pay attention to the ingredients list whenever looking at a particular product. Does it contain wheat, rye and/or barley?
What is celiac disease? What is gluten intolerance/sensitivity? What’s the difference?
From Gluten Free for Dummies: Celiac disease is a common (yet often misdiagnosed) genetic intolerance to gluten. Triggered by eating gluten, the immune system responds by attacking the gluten molecule. In doing so, it also attacks your body cells. This is called an autoimmune response. The disease can develop at any age, in people of any ethnicity. It results in damage to the small intestine, which can cause poor absorption of nutrients. Although the damage occurs in the gastrointestinal tract, not all symptoms are gastrointestinal in nature. In fact, symptoms are vast and varied, and they sometimes come and go, which makes diagnosis difficult.
Celiac disease is unique among autoimmune diseases, in that its trigger has something to do with nutrition.
What’s interesting is that gluten sensitivity is much more common than celiac disease (and many who are gluten sensitive may not know it) – for every person with celiac disease, 5-7 others are gluten sensitive.
Some key differences:
- Celiac disease is genetic and triggered by environmental factors, while gluten sensitivity does not involve an autoimmune response and therefore does not damage the intestine.
- Celiac disease is a lifelong disease, whereas gluten sensitivity is not necessarily a lifelong condition.
- Celiac disease requires 100% compliance with a gluten free diet, which is not necessarily true for gluten sensitivity.
- Celiac disease will cause immediate and long-term consequences if one eats gluten (even a small trace), whereas those who are gluten sensitive only suffer from immediate symptoms.
How many people have celiac disease? How common is it?
Until very recently, celiac disease was thought to be mostly in Europe. Now, studies have suggested that it is a global and worldwide phenomenon, affecting roughly one percent of the world population.
In the U.S., an estimated 3 million Americans are affected by celiac disease, with only about 120,000 diagnosed so far. Many more are affected by gluten sensitivity, but most don’t know it.
What triggers celiac disease and gluten intolerance/sensitivity?
Eating gluten! Gluten is very common and in many countries, unlabeled, presenting a big challenge for those who are gluten intolerant/sensitive and have celiac disease. Gluten free products are now becoming more widely available, but they’re still difficult to find and certainly more expensive than their gluten-containing counterparts.
What are some symptoms of gluten intolerance/sensitivity and celiac disease?
There are hundreds of symptoms. I won’t go through all of them here.
What’s important to remember is that most people with celiac disease do not have gastrointestinal symptoms (even though damage is being done to their gastrointestinal tract) — but these are some of the “classic” though not the most common gastrointestinal symptoms of celiac disease:
- abdominal pain and dissension,
- acid reflux,
- diarrhea and more.
Most people’s symptoms are not gastrointestinal in nature. People more commonly have what are called extra intestinal symptoms, of which here is a brief list:
- fatigue and weakness (due to iron-deficiency anemia)
- vitamin and/or mineral deficiencies
- headaches (including migraines)
- joint/bone pain
- depression, irritability, listlessness, and mood disorders
- “fuzzy brain” or an inability to concentrate
- muscle cramping
- …and many more! (over 250 symptoms)
If you’re really interested, please consult additional resources. The list above is by no means comprehensive, and it may be worth looking into if you’ve been having symptoms but haven’t figured out the root cause of them — it may be due to eating gluten!
What are other associated diseases, misdiagnoses and missed diagnoses, and associated conditions?
Are you shocked yet? OK, maybe not. But this section may be a little surprising to you — I had no idea that eating gluten could cause this many detrimental effects on your body and health.
Associated diseases include autism, thyroid disease, infertility and schizophrenia. There are actually studies out there that show correlations between gluten sensitivity and celiac disease and people who have autism and schizophrenia, for instance.
Symptoms present in children include inability to concentrate, irritability, ADD/ADHD or autistic-type behaviors, short stature or delayed growth and more.
Misdiagnoses and missed diagnoses include:
- Irritable bowel syndrom (IBS) or spastic colon
- Chronic fatigue syndrome (CFS) or fibromyalgia
- Lupus (an autoimmune disease)
- Unexplained anemia
- Migraines or unexplained headaches
- Unexplained infertility
- Psychological issues (hypochondria, depression, anxiety, or neurosis)
- Inflammatory bowel disease (IBD),such as Crohn’s disease and colitis
- …and many more!
Associated conditions run the gamut:
- autoimmune diseases (Addison’s disease, Crohn’s disease, thyroid disease, etc),
- mood disorders (ADD/ADHD, depression and bipolar disease, autism, schizophrenia, etc),
- nutritional deficiencies (anemia, osteoporosis, etc),
- neurological conditions (epilepsy, seizures, infant brain and spinal cord defects, etc) and
- other conditions (cancer, Down syndrome, cystic fibrosis, etc).
Again, I’m trying to keep this section as brief as possible. This is by no means comprehensive at all. Please consult additional resources if you are interested in learning more.
What are common problems for people with gluten intolerance/sensitivity and celiac disease?
The three big problems are a lack of information, poor awareness among healthcare professionals and major confusion in what foods are gluten free safe and what are not.
Can you give me an idea of what kind of psychological pain points they face in a day-to-day life?
Grocery shopping for gluten free products is incredibly daunting; you could spend hours of shopping just to get two or three items in your cart. Now imagine a lifetime of this, a lifelong diet of gluten free, and it’s quickly overwhelming with a heavy sense of deprivation and powerlessness in what is a huge lifestyle change. Every single event has to be meticulously planned in advance and you have to be extremely mindful of shopping, cooking, avoiding cross contamination, etc… lest you face some of the unsavory symptoms above of ingesting gluten.
III. INTERESTING FACTS AND STATS ABOUT GLUTEN FREE
Interesting facts and stats
Three things make celiac disease extremely interesting:
- Celiac disease is extremely common but remarkably under-diagnosed.
- If undiagnosed, it can severely hurt your health (evidenced by the lengthy list of symptoms and associated diseases above)
- It is fully treatable by diet and nutrition alone.
Other interesting tidbits:
- Celiac disease is not necessarily present at birth, it can be “triggered” at any point in life and usually appears later in life.
- Most of the symptoms and problems people with celiac disease face are actually not gastrointestinal in nature, even though that’s where the damage hits the most.
OK, now what about market size?
- It is one of the most common genetic diseases – affects nearly 1% of the world population. Gluten sensitivity is thought to be even more common and some experts say the majority of people have some form of gluten sensitivity.
- It affects about 3 million Americans or 1 in 133 estimated number of people in the U.S. affected by celiac disease, the majority of whom remain undiagnosed. To put this in perspective, celiac disease is more common than Crohn’s disease, ulcerative colitis, multiple sclerosis, Parkinson’s disease and cystic fibrosis… combined.
- 6-7% of the U.S. population is thought to be gluten sensitive.
- 17% growth of the gluten-free foods market as it boomed in 2012. Conventional grocery grew less than 1% during the same period.
- The gluten free foods market in in 2010 was $2.6 billion, in 2012 was $4 billion and is expected to reach $6 billion in sales by 2015.
- According to the NPD Group, 30% of Americans are trying to avoid gluten in order to eat healthier.
- “Gluten-free” was listed as #2 in Time magazine’s Top 10 Food Trends of 2012.
So the market and opportunity is definitely there, and the timing is extremely prescient now.
HealthNOW medical lecture
Some interesting things I learned from the medical lecture I mentioned earlier:
Did you know the vast majority of your immune system cells are located in your intestine? I didn’t.
The three primary effects that occur as a result of eating gluten:
- It beats up the lining of your digestive tract. Gluten causes breakdown of your membrane, leading to “leaky gut” syndrome. If you block leaky gut, you can block autoimmune diseases.
- It causes autoimmune disorder. If you have celiac disease and gluten sensitivity, you are 10x more likely to have an autoimmune disease than the average person.
- It dramatically increases inflammation in the body because of gluten crossing through your intestine to your blood stream. Did you now that the #1 area in the body that is inflamed the most? Your brain and nervous system!
Some exciting new research:
- Autoimmune diseases are actually NOT self-perpetuating, as many thought before — a recent study on rats showed that if you changed their diet to be gluten free –> you stopped the offending originator –> stopped the entrance of gluten –> stopped the overproduction of antibodies associated with autoimmune disorders.
He also mentioned an interesting study on bread shortages during World War II. Due to bread shortages, there was a significant decrease in schizophrenia (“bread madness”), 27% of the population had antibodies against gluten (gluten sensitivity) and 57% of people with brain problems had gluten sensitivity. Wow.
Some helpful context
There were more things, but I don’t want to bore you with more details if these aren’t very interesting to you — trying to keep this short and sweet! But I just wanted to provide some context for my readers so they have somewhat of an understanding of problems I face and consequences of eating gluten, not to mention gain a fuller understanding of the user profile I’m targeting of people who are gluten sensitive and/or have celiac disease.
Now you have somewhat put yourselves in their shoes (sort of).
IV. DISCOVERING MY OWN GLUTEN INTOLERANCE
So this is really interesting. I actually discovered that I am gluten intolerant myself. It wasn’t an overnight thing — but a couple events in particular stuck out to me.
I remember eating pretzels in the office a couple months ago and immediately felt sick afterwards. Which was really strange, as I’ve eaten gluten all my life growing up — bread, cakes, cookies, pretzels, pasta, etc, you name it — and it spurred such a strong negative gut reaction (literally and figuratively) that it was rather shocking and surprising. In order to make sure this wasn’t a one-time occurrence, I repeated eating pretzels several more times and felt very sick each time.
I had a craving for pancakes the other day and hopped into my car to drive to IHOP, conveniently a couple minutes away. I ordered original buttermilk pancakes, no butter and sugar-free syrup. It was great and fulfilled my cravings. Yes, I knowingly knew they were not gluten free but I was willing to take that risk because it was such a huge craving and I was starving. But ten minutes after I left the restaurant… the gluten just hit me like a train. I immediately experienced brain fog — my mind just basically shut down and I couldn’t think straight, I felt fatigue and my body ached all over and I had to go lie down and take a nap for a couple hours. My body was just so indisposed that I couldn’t do anything, basically. It was an incredibly terrible experience.
Now, why am I saying I’m suddenly “gluten intolerant” based on two very anecdotal data points? I also talked to a friend and she mentioned that me being on Paleo for a long time (2-3 years) probably contributed to my growing gluten intolerance, so that this wasn’t something that happened overnight. Her friend also had similar experiences of becoming gluten sensitive after being Paleo for a long time. This is still anecdotal and I haven’t gotten tested for celiac disease or gluten sensitivity (there are tests out there but they also have some drawbacks and inaccuracies) but I am self-diagnosing myself to be gluten intolerant. I highly doubt I have celiac disease, per se.
When I was Paleo, I would almost always avoid any carbs and manufactured, processed and baked foods (which happen to be the gluten mothership of all foods) and on my cheat “meals” and “days,” I would gorge on pho or Thai food, which are my go-to favorite foods 🙂 Of course, I thought to myself — well, I didn’t have any adverse effects eating out there. No brain fog. No body aches. Then I realized — most Asian places don’t have gluten in them in the first place (unless it’s soy sauce, you have to avoid that) because it’s heavily rice-oriented (one of the few grains that is not wheat, rye or barley) and so their noodles are rice-based, not flour-based. Duh, Melissa! Oops.
During college, I would also have problems with fatigue — I would have days when I just couldn’t get out of bed because my head hurt or my body ached, for whatever reason. It was all very strange, because I was a pretty healthy person without any diseases or illnesses and I would just get so fatigued that I was rendered indisposed for almost whole days. I wonder if it was related to gluten (this period also included times when I was not explicitly on Paleo). This problem hasn’t gone away either, I still have it from time to time. It has definitely adversely affected my productivity.
I actually may have had more “glutened” experiences than the ones I touched upon above, but probably thought it was “normal” (normal for me) because of my historical fatigue problems. It may also be just me being extremely hyperaware of gluten now that I’m working on this idea and everything.
Regardless… due to my recent experiences, I don’t want to “experiment” eating gluten foods anymore and am self-diagnosing myself as gluten sensitive. I am now becoming the very user I am trying to target. Hah!
V. SOCIAL SHOPPING AND EATING EXPERIMENTS
Social shopping experiment
So now that I recently learned I’m gluten intolerant (OK, self-diagnosis but I have had some painful experiences of getting “glutened”) — I decided to try shopping for myself as a newly gluten free person.
I went to Whole Foods and Trader Joe’s to try to see what they had to offer. You have no idea how hard it is to find gluten-free products that are dairy and soy free, and don’t taste overly processed. The gluten free sections were not very expansive, understandably and the foods they offered were typically foods I wouldn’t really eat anyways — cereals, cookies, chips, crackers… haha, does this sound familiar to you? They were all slapped with gluten free labels, and some were dairy free and soy free, etc.
I went back home and decided to taste some of them. Ugh — they tasted like cardboard! It was pretty disgusting and disheartening. I don’t understand how the gluten free foods market was $4 billion last year if the foods being produced taste simply awful… but I guess people will buy it since it’s labeled gluten free.
My social shopping experiment convinced me to buy naturally gluten free foods/products and not explicitly labeled ones. I’m going to still be Paleo in this regard — sticking to my chicken and vegetables, fish, etc. The thing here is that things that are naturally gluten free like chicken aren’t going to have a giant sticker saying it’s gluten free, since it’s pretty obvious and implied. It’s only those processed foods that normally are glutinous that you’ll need to look out for gluten free labels — and since I normally don’t eat those foods, I shouldn’t start eating them now.
Social eating experiment
I then did another experiment as a gluten free person of eating out. Sure, I can easily start with the big chain restaurants that have public nutritional information available, but that’s mostly calories (I never counted calories when on Paleo, to be honest) and I normally don’t go to big chain restaurants to eat.
I did some research/experimental eating and realized some traditionally gluten free friendly cuisine types:
- Mexican: most of the tortillas are corn-based, not flour-based. If not, you can simply ask for them to use corn rather than flour tortillas.
- Japanese: Seaweed and rice! Sushi. Need I say more? Just need to avoid soy sauce, which contains wheat.
- Thai: Rice noodles, all day, every day. Again, just need to avoid soy sauce and can ask for fish sauce to be used instead.
- Indian: Lots of proteins and vegetables over a bed of rice. Avoid naan bread and make sure the sauces do not contain wheat or flour.
And some traditionally non-gluten free friendly cuisine types:
- Greek: So many bread-based foods and pastries. No bueno. Unless you really like Greek salad.
- Italian: Omg — pizzas, pastas, calzones — gluten everywhere! You have to watch out for the sauces as well.
However, there are still issues of potential cross-contamination in the kitchens, miscommunication and poor awareness of what actually has gluten and what does not. It is a big reason why it is so hard to eat out when you’re gluten intolerant or have celiac disease.
Putting yourself in their shoes
In hindsight this seems obvious, but due to my recent decision to narrow my focus to just gluten free and finding I’m gluten intolerant, I’m glad I also spent some time in my users’ shoes in terms of grocery shopping and eating out in restaurants.
VI. FDA RECENT ANNOUNCEMENT
The Food and Drug Administration (FDA) finally announced their definition of gluten-free last week and detailed the requirements manufacturers must meet before labeling their foods “gluten-free” — that it must be less than 20 parts per million of gluten. The FDA’s decision aims to bring peace of mind for millions of Americans who suffer from celiac disease and to set a standard for the rapidly growing industry in gluten-free foods.
You can read their official announcement here, as well as use a quick Google search of the extensive news coverage in all the major media outlets and online publications.
This is a really big deal and I’m really happy that they are finally setting the standards to help people who are gluten sensitive or have celiac disease make their lives easier than trying to figure out which foods contain gluten or not. Even a tiny trace of gluten in a supposedly gluten-free food is enough to trigger a reaction.
VII. NEXT WEEK AND KEY LESSONS
Next week will be spent talking to restaurants as well as continuing to build an advisory board. Once I talk to restaurants, I hope to have enough feedback and potentially data to finish building my MVP, of which I will finally try to set up in-person meetings with users to see how they interact with the prototype.
Something exciting I’d like to mention is that I was fortunate enough to get an opportunity to have a meeting with Greylock Partners later next week as a pitch practice, so to speak. I’ve formally never pitched something before – other than pitch my idea to friends, users and a string of temporary cofounders in the past – that is, to investors directly, so it should be interesting and hopefully very educational, in the least. My office hours with Rock Health last time was with one of their advisors, but not an investor himself or directly involved in reviewing potential startups and founders/teams.
Key lessons learned in week 3:
- Talk to people with industry expertise and get their feedback.
- Learn as much as possible about the problems your user faces and the problems they deal with — but especially, the context of their problems and scientific processes of celiac disease and gluten intolerance, in my case.
- Try to live the life of your users, mimic their problems and walk in their shoes. I tried shopping for myself gluten free and eating in restaurants gluten free myself. Get out of the building not to just talk to your users, but mimic their use cases and flows as well.
P.S. I’d love to meet you on Twitter here.
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