Patient Turmoil: Trusting the Health Care System

Those that live with a chronic disease are often credited with surviving through symptoms, side effects of medications, and other health issues that come along with their illness. However, people rarely think of the stress that comes along with gaining the healthcare necessary to treat their disease and live a relatively normal life.

Many systems interact in a patient's treatment - the health care team who helps determine the best way to manage a disease, the pharmacy to fill prescriptions, and the insurance who will supposedly make all of this affordable. Even if a patient stays with the same businesses, this can get incredibly complicated if anything changes within these businesses or in the person's life.

In the past two weeks, I intimately learned the danger of systems that do not share information and may not always communicate enough to truly benefit the patient. Although I thought everything remained the same, several small changes almost necessitated hospitalization and brought forth the prospect of surgery.

Two weeks ago, I told Walgreens to refill my prescription for Ustekinumab as I always do prior to my injections (completed once every eight weeks). This started the beginning of my realization over the stress that comes from needing to trust that everyone in your team will do what's right. First, the pharmacy sent my prescription to the wrong pharmacy, but a phone call two days later fixed that. With my normal time-frame, this would not have been a problem. Three days passed; normally it takes two or less to fill my prescription through their specialty pharmacy. My husband and I spent over an hour on the phone on a Saturday to determine what was happening with my prescription.

By the end of our phone calls, we had no idea who had been paying for my medication for the last 9 months. The nurse on call at my new clinic said they could only help if my symptoms worsened to the point of needing hospitalization.

One week after I started the process, I had five days left to receive my prescription on time. I started again calling the pharmacy to determine why my prescription was rejected and asking the physician who wrote the script to talk with the insurance. At that point, we learned the insurance company required another prior authorization, although never told me I would need another so soon. We figured it could not take long since the insurance approved it at the beginning of the year. However, I learned the clinic was working with an insurance I told them to take off file in January. 

Throughout the rest of the week, my husband and I spent many hours on the phone trying to figure out what blocked me from receiving the treatment that has been the only medication to ever bring me into remission. From the clinic using my maiden name, to the pharmacy using my wrong insurance, to the insurance company saying they would pay for $1500 and leave the other $21,000 for me to pay, I thought my only option would be going to the hospital and potentially needing surgery depending on how bad my disease would become in the process.

Through all of this, I could tell certain people in each system were tired of my micromanagement. However, seeing all the mistakes made by each establishment, I no longer trusted that anyone knew what I needed or how to help me get what I needed. Every time I learned of a new mistake, my stress levels skyrocketed because I needed to contact the other systems to make sure they were not impacted by that mistake.

Thankfully, I found one person in each business who became my trusted advocate. I would only speak to that person and they kept me updated on their progress and dealt with my situation personally. They understood my distrust of the system and left messages while I attended class so I knew my situation was being handled appropriately. Without these people, I cannot imagine how my symptoms would have continued to progress and where I would even be today.

This situation exceptionally highlighted to me the trust that the health care system imposes on patients. Without a way to truly connect clinic, pharmacy, and insurance, and without a way for the patient to easily check on updates, the patient is at the mercy of people who are not personally connected to their case and may make small mistakes that have immeasurable consequences. Unfortunately, I see none of this changing until someone in power needs to deal with a situation similar to this, or until healthy people become cognizant of the constant struggles of those of us living with a chronic disease.

Until then, I implore those in any part of health care to have patience. Try to understand the constant worry and stress we have in trying to treat our disease. If we make a mistake or forget to tell you something, please remember that we have to work with everyone in our team which can include many places we need to update with insurance, medication, or personal changes. Beyond all of that, we are trying to lead normal lives while managing a chronic disease which probably causes daily strife that we must overcome. After a fight with one of my past physicians, he told me something I will never forget - he must try to remember that when he sees me, it's a normal workday for him; when I see him, I may be experiencing one of my worst days due to sickness. You may be stressed during your workday, but imagine needed to live with this every day and needing to interact with this health care system while trying to stay healthy.

The Chronic-ness of Disease

It's been way too long since I last posted; as such, you all get to hear about all of the fun musings I've had.

Lately, I have been struck by the chronic-ness of my disease (now you all understand the title of my post!). After 10.5 years, Crohn's should just be a part of my normal. Yet it continuously throws me out of balance.

Some of you may remember my excitement at the end of 2013. For the first, I achieved remission without surgery. I was exercising, eating well, and it seemed like nothing could stop me.

Then Crohn's left me with the reality check. My family and I were so excited about me going to Jamaica. For once, my disease wasn't dictating my life. We made these plans almost a year in advance and stuck to them. It was a great feeling knowing that I didn't have to give something up later on just because my Crohn's decided to be a little shit.

During Jamaica, Crohn's decided I was forgetting what it was like to be sick and I ended up taking way more vicodin in Jamaica than I had in the last 6 months. But that was nothing to what this first month home has been like. I'm starting to get used to pain again. I can ignore the stabbing pains and found out today that I can even give a pretty good speech when all I want to do is curl in a ball while the doctors push all the pain medications into an IV.

Crohn's is not a disease. It is a way of life.

For the last months of 2013, I forgot that. Crohn's was seeming like a disease I just happened to have, but not something that actually affected my life. Now, I'm needing to remember how to deal with having a chronic illness. I need to cancel plans because the pain is too great, I need to watch what I eat, I need to be careful when I exercise to not push myself too hard.

Time to get out of my pity party. Crohn's is going to be a part of my life forever and there will be better times. I need to just remind myself when times are tough that eventually they will be good again.

Crohn's and Colitis Awareness Week

Considering it's Crohn's and Colitis Awareness Week, I thought it'd be appropriate to finally write another post.

Things are going really well for me - my last colonoscopy showed only mild-moderate ulceration in my neo-terminal ileum and some moderate ulceration at my anastomosis. It was probably my best colonoscopy discluding the one performed shortly after my surgery three years ago.

I know I should be very grateful to have such a good colonoscopy, but the only reason I had one was because I was having 10-12 loose stools a day. My doctor ruled that as caused by some bug, but we said that it was sketchy that I have such up and down periods of symptoms.

Now that I know my intestines look well, I'd like to make it my goal to reduce symptoms. I want to stop running fevers and having diarrhea and having pain. Maybe that means finding the right amount of exercise and diet.

I think maintenance is extremely difficult. On one hand, doing certain exercises and eating completely healthy would probably mean a lessening of symptoms, but I was miserable eating only rabbit food. As well, I like to push myself - even though that means some workouts will end early because I'm in pain.

A patient advocate told me about a woman who was diagnosed with Crohn's disease in the '60's. She said that if she avoided everything that ever caused her pain, there would be nothing to eat or do. Sometimes, she eats things that she knows is going to cause her pain, but that's because she wants to live.

That's about where I am. It's time to start figuring out how many symptoms I am willing to live with and what kind of lifestyle that keeps me happy will put me there. Although being symptom-free would be my ultimate goal, it looks like we're not quite there.

Happy Awareness Week everyone! Hopefully we all can find the happy medium of living our lives with minimal symptoms.

A Decade of Crohn's

It is officially ten years since I was diagnosed with Crohn's disease; this is an anniversary that marks the day my life was changed irrevocably. As this day approached, I couldn't help but think about how different I am now compared to this day, ten years ago. For all of my family, friends, and even strangers, I would really like to recap my story.

 

~9 months prior - diagnosis

At first, I had no idea what hit me. I was walking upstairs to my room when I had to stop and sit because I started having such terrible abdominal pain. At 9 years old, I figured it was a tummy ache from something I ate. I kept on my business and didn't think about it again.

Fast forward a couple months and this pain was happening every day. I remember lying awake at night, crying because the pain was too intense for me to sleep. I would try to curl up as best as I could in my desk to minimize it. As well, I was starting to throw up and have more frequent, loose poops.

I didn't understand what was going on. Before this, I had never been sick with the flu, or even a cold. In my now 10 year old mind, I was convinced I was dying. My parents found out what was going either because I had had my first accident, or they saw one of the times that I couldn't make it up the stairs any longer without having pain. Sometime in the late winter/early spring, I was having the worst pain of my life, and it wasn't going away. My parents finally had enough and took me to some clinic (the urgent care or emergency room). After not finding anything through some basic tests, they figured I was either making it up, having a very stressful time in the 4th grade, or bulimic.

This continued on until I was no longer able to make it to school on time in the morning. Our routine was: wake up and all eat together, I go to the bathroom to the bathroom to throw up while my brother went to school, and then I went to school once I finally stopped.

The month or two prior to my diagnosis consisted of me no longer being able to walk because I had no energy. I then slept on our couch downstairs with all of the fans on and a cold rag because I was always running a low fever. One of my parents would always wake up and comfort me while I was either crying out in pain or throwing up.

 

Diagnosis (July 18, 2003)

Finally! I was diagnosed with Crohn's disease (unofficially). Although I had just had my first colonoscopy at the age of 10, the doctors were finally telling me that they knew what I had. In my mind, this meant that everything would be fixed. They started me on 18 pills a day and sent me on my merry way.

 

Elementary - middle school

During this time I was never as sick as I had been, but I was never close to feeling like I had before diagnosis. My doctor at the time believed that I should be able to go a couple weeks without pain or diarrhea, so I was switching my medication every 2-4 weeks in the search of the magical combination that would make me better. During this time, most IBD treatment was just guessing. It was still a bottom-up approach in smaller towns, so pills were the only treatment available to me.

Prednisone became my worst nightmare. Whenever I look back at pictures, I see a huge moon face staring back at me. I remember getting terrible mood swings that would have me laughing one second, angry the next, and then bawling my eyes out. Self-esteem hit rock bottom as people would tell me what a cute chipmunk I made (what every 13 year old girl wants to hear). Kids would call me fat and they teased me about my Crohn's, saying that I was going to explode because I couldn't poop. This so-called "miracle" drug is the reason for the worst depression I have ever experienced. As well, my joints always ached and it made me very tired.

At this point I learned the mantra that I should never push myself because I have Crohn's. I had to have a routine down that I didn't deter from, otherwise, I would get sick. I would have to wake up at a certain time and eat at just the right time or I start throwing up and I would be sick all day. Later on in life people would laugh at my routines and think I was weird, but it was learned during this time in which I had to stick to a routine or I would miss out on the day.

 

Freshman - junior year

At this point I refused to ever go on prednisone ever again (and I am proud to say I have stood by that rule). During this time of my life, I was never super sick, but I was never well either. I would always have some sort of sickness because of my suppressed immune system. I would miss a lot of odd times at school because of the flu, having operations from abscesses that would form, or because I was "Crohn's sick." I would have a couple loose poops every few days and have constant pain. I still never really pushed myself, but I wonder now if I could have risen to the challenge had I tried.

My life was based around my Crohn's. I would only do things if I felt it was safe for my Crohn's. Plans stopped being made because I never knew if Crohn's would make it impossible to follow through.

Around my sophomore year I started Remicade, an IV drug. I was doing slightly better than before, but in a couple months I felt as though the effect was wearing off. My doctor kept ignoring my complaints, saying that my blood work was fine. He kept saying that I was just going to keep doing what I was doing. Finally, he allowed me to have a colonoscopy, where we found lots of polyps, inflammation, and a stricture. My doctor said that there weren't really any other options, so we just had to stick with the same treatment.

 

Senior year

At a swim practice, I collapsed in mind-numbing agony. I couldn't believe the pain that was ripping through my abdomen. We went to the emergency room and were hopeful that this was what it would take for my doctor to finally do something.

We were wrong.

This was when I switched to Mayo clinic. Over 3 days I had a lot of tests done and it was decided that I would go on a clinical trial. It was really cool seeing how a clinical trial worked, but I was considered a non-responder to the medication, which the doctor figured would happen. He thought there was a good chance my stricture had scarred, which means that no medication could help it.

I finally had the surgery that would change my life and put me in my first ever remission. It was the best decision we ever made. Although it meant that I was still recovering over Christmas, my abdomen was a lot happier.

After fighting with insurance, I started Humira after my 18th birthday. We soon found out that I was allergic to it after I broke out in a full body, medicinally-induced psoriasis rash. After about 2 months of injections, I went off, and it took about the same amount of time for me to recover from the reaction.

I then stayed off medication since I was in remission. For a couple months, I was Crohn's free and medicine free. Although I was finally free to break away from my mantra that Crohn's came first, there was always that scared voice in the back of my mind that wondered how far away my disease really had gone. I may have not had many symptoms, but I was living my life as though I still did.

 

Freshman year - college

The stress awoke my Crohn's from its hibernation, and it sure was cranky after its long nap. I went onto Cimzia (the clinical trial I was on my senior year, although it was no longer a clinical trial since I had turned 18) and methotrexate. The medications were alright, but I had to do them on Friday because they would make me feel sick and I would need a day or two to start feeling better.

My freshman year of college was built around trying to adjust to college just like everyone else, and trying to deal with my first ever flare up after a remission. It was so frustrating and depressing to have everything pile onto me. Fortunately, St. Olaf is such an amazing school for accommodations and I was able to get special meals, get my own room, have a car, etc.

A lot of my professors either knew someone with IBD, or they were very willing to talk about my disease so they would understand what I was battling. My second semester, I even found a professor that also had Crohn's disease.

My friends were really amazing. Whenever I was sick, they would get things for me so I could stay in my room. One night I was having the terrifying pain in my abdomen, and one girl carried me down from the 4th floor (no elevators!) while two others drove and stayed with me at the emergency room. It was great to know that I could really rely on people. Over the summer, I had to go to the emergency room again, and it was decided that we would have to do something different.

 

Sophomore year - college

Another clinical trial was decided upon. I was in a very low state-of-mind after I was continuing to have all of these issues even though I was at Mayo. After the introductory phase, I was considered a non-responder, which was actually nice because now I know I am actually getting the medication.

Although Crohn's seemed to be tearing me down, it really brought me right back up. My professor with Crohn's suggested that I start a support group on campus. It ended up that about 15 people joined throughout the year, and it was really great getting to have Crohnies on campus.

I then joined a national council for people with IBD in college. Through that, I have met some very strong leaders who are having many of the same issues as me. I have met some important people in our country and within the CCFA community. I have been able to get more involved with CCFA and help out with the Minnesota chapter, which has been a blast.

This was the year that I decided to throw out the Crohn's-first attitude. I started to go to the gym and work on getting in shape. I also started eating better. It sucked terribly at first, but eventually I started feeling a lot better.

Although I went to the emergency room a couple times in the spring, I had a much better outlook on life.

 

Here and now

Right now my life consists of camp, camp, and more camp. However, on my two hours off a day I have been running and trying to prove to myself that I really can push myself. Now, I can regularly run 6 miles, a feat that I had not thought would ever be possible. I have my sights set on a half marathon, a full marathon, and maybe even farther.

Sure, my Crohn's isn't perfect. Until this week I had had three weeks of non-stop diarrhea. I have had several accidents in the last month and I have needed to take pain medication.

But I will not take any of this without a fight.

I have realized that one symptom, or even a week of symptoms, does not mean that I have to stop being active. I didn't stop running after my accidents, and eventually I have formed stool again. Some days I can only make it through 2.5 miles (which to say that is the only amount I can run on a bad day is fantastic), but other days I can do more. Now that I have given up my mantra that I shouldn't push myself because I have Crohn's, I have been able to go so far. I hope that I can reach my dreams and inspire other people that they can as well.



My wish

Hey everyone - it's been a hectic time so I haven't had time to post lately. I originally started the blog to give advice to others, but lately it has become my place to vent about my feelings about IBD. I've gotten a lot of e-mails from people saying that they feel the same way, so I want everyone to know I really appreciate that you read this and care enough to reach out to me.

I really wanted to write about something happier - that I'm finally out of my rut and enjoying the life of a Crohnie again. As involved as I'm getting in the IBD community (through the council and MN Chapter), I feel like the past me would be super excited about everything I'm doing and happy that I have Crohn's because of all of these opportunities.

Lately, however, it's been so much more difficult. St. Olaf is always questioning, "What do you want to do with your life?" I've always replied that I want to be a doctor in a small town and just live a quiet life. I've realized that I've been lying to myself.

My dreams are to travel the world. I want to go to third world countries and hand out medical supplies. I want to see the wonders of the world. I want to swim in all of the oceans and seas (except for the really cold ones... maybe them as well). These are what I dream about all the time, and St. Olaf says these dreams are possible.

My Crohn's tells me otherwise.

My Crohn's says that I'm going to have pain after I eat, that I'm going to be tired all the time, and that I'm going to spend a good portion of my day in the bathroom. I know I should be grateful; I don't go to the emergency room as often and I don't absolutely need surgery. Doctors are always saying that people with IBD are not going to feel as well as they did before, even when they are in "remission."

I'm supposed to be okay that my disease doesn't allow me to travel? I'm supposed to be okay that I have to drive to Mayo every other week so I can help this big pharmaceutical company get their medication out on the market? Which they'll charge probably more than $10,000 an injection. I want to know why having a disease means that I have to accept these limitations as though it's a part of life.

I absolutely love camp and my Crohnies, but it is so so hard to know that I will probably never be able to fulfill my dreams because it just isn't practical, that I will have to always live near enough to a large clinic that will have all of the latest drugs for me to be on. I know there are tons of people that have it worse than me, but seeing my friends doing a semester abroad or doing research in another country is so hard. Several of the chemistry professors told me that they would be more than happy to give me letters of recommendation for any program that I want to apply to, but I had to tell them that I can't because of my Crohn's.
I know someday this will all work out, but it's so hard being at this point in my life.



Mentality

I'm really trying to write one post a week, but we'll see how this goes!

One thing that has been really difficult for me lately is trying to figure out what kind of mentality I'm supposed to have regarding Crohn's disease. My "growing up" with this disease revolved around a doctor who believed I should feel as though I didn't have a disease. She always wanted me to call her if I was sick for more than a few days and had ruled out a cold or the flu. Then, we would switch around doses and hope that that was enough to make me feel better. My first couple years, I was constantly fiddling around with medication because my doctor believed that a remission meant I could go weeks without a single symptom.

Over time, I've realized that I may never become symptom-free. I'm so tired of constantly switching medications and trying out new things. However, I now wonder at what point I'm supposed to become satisfied. I realize that most Crohnies live with an almost everyday, symptomatic disease, but how many symptoms are too much?

Unfortunately, I still want to be completely healthy. I want to wake up and not be nauseous, or have formed stool when I poop. I don't know if I'm supposed to accept the fact that I'm going to always have pain and run the risk of accidents occurring, or if I'm supposed to fight to feel better. We're all hoping that this diet tips me into the realm of feeling better all the time, but it's hard to imagine what that's like after ten years of constant pain and diarrhea.

I know I can take pain and I can deal with all of the symptoms, but I really don't want to. It seems like there may be no other choice, but that doesn't seem like any real way to live.

All I can say is that I hope this diet works, and I hope that I stop craving ice cream.

Being an Advocate

What a busy January! I'm finally back into the swing of things after the council trip to Philadelphia. So far, being on the National Youth Leadership Council - or whatever it's now or will be called - has been a great experience. All two weeks of it. I'm learning a lot about what's going on in IBD in the other parts of the U.S., especially with research. Hopefully in the next few years we'll be treated more specifically on the pathways that are being blocked by the mutant genes we have. The Children's Hospital of Philadelphia is also going to be looking into what is the "perfect" bacterial state of a healthy gut, and hopefully determine what kind of diet would help a Crohnie reach the same levels of bacteria.

Although it's scary thinking that I'll be working with entirely new branches of CCFA, it's really exciting. If all works well, I'll be able to work with Crohnies from the University of Minnesota to reach an even wider audience than St. Olaf and the Northfield community.

The rate of IBD is increasing - probably a mix of better diagnosis and whatever environmental cause. However, people still aren't understanding our disease. One of the leaders of the council explained how her professor wouldn't allow her to take a test later even though she had spent the night in the hospital. Things will only get better if we go out and educate people about our disease. I know poop isn't the most glamorous thing, but we all do it. If you don't spread the word, how can you expect others to understand what your needs are?

For more advice/information on living with IBD in college, you can like Campus Connection on facebook, or go to the National Youth Leadership Council webpage on CCFA. If you type those in google search bar, it should pop up. In the next year we'll be revamping the webpage to have more information and better access to all the links/templates provided on the CCFA webpage. Also, we'll hopefully have programs that will help you spread the word about IBD on your campus. The next couple years should bring about a new understanding of this disease, and I'm very excited that we all get to be a part of this.

New Year's Resolutions

This year, I decided that my health would be top priority when picking out a New Year's Resolution.

When I went home, there was many Christmas cookies and family parties filled with forbidden foods. It was incredibly difficult, but I stayed away from foods I shouldn't eat during my families' Christmas parties; however, I cheated a lot at home by eating most of our Christmas cookies. I realized that it was a lot easier to stick to my diet when I was being held accountable by other people. I'm not always going to be around people, so my first New Year's resolution is to stick to the diet! I will allow myself to eat one piece of my dove dark chocolate (what girl can honestly give up chocolate??) now and again, but that is going to be the extent of my cheating. As great as some of the no-no foods taste, I've realized that I enjoy being healthy so much more.

My second resolution is a bit more ambiguous. I just want to live a healthier lifestyle. I'm going to go to the gym, do yoga, sleep more... and feel good about myself! This is going to be the year that I finally achieve remission status; I can feel it.

I want to challenge other people out there - not just Crohnies - to really evaluate your health. I'm not going to go all health nut on you because I always hated when people did that to me, but there's so many bad things in the food we eat today, and we put all that junk into our bodies. You don't have to have such a strict diet, but anything processed is bound to be really hard on your system. Instead of popping a tums or something to stop diarrhea, figure out what food is causing you problems, and stop eating it.

Eating healthy can be easy, even at college. Yesterday I e-mailed the guy in charge of our kitchen and told him what's going on. He had me meet with the head chefs and I now have all their numbers and text them what I want to eat a half hour before I go to eat. Today I got sauteed spinach and fish. It was so delicious. I won't be using it all the time, but it's nice to have variety. Plus, they said they have shrimp; I know which girl will be asking for that every week (haha).

To end this post, I want everyone to think about one thing they can change about their lifestyle (eating, exercise, etc.) that would make a positive impact on their life, and go for it!

Following the Diet

After receiving e-mails about the diet, I figured I should share what I'm doing and how it's been working for me.

I knew that completely cutting out processed foods and carbs was going to be extremely difficult. I don't eat poorly, but I was never a super healthy eater. I did some research about diets and found out that sugar can actually mess with our brains the exact same way as drugs do. If you take it out cold turkey, you will most likely have withdrawal symptoms and crave it so much that you have to eat sugar again. I decided to start the diet slowly.

I always (unless there weren't any good options) took a dessert after lunch and supper. First off, I cut that out. At first, I really wanted a peanut butter cookie or a piece of chocolate cake, but after a week, I decided to have one, and I didn't even want one. I no longer think about taking a dessert because I just don't want it anymore.

Then, I realized that I ate a lot of bread. When I didn't know what I wanted, I would make a sandwich. Instead of doing that, I would make a quesadilla. It still has grain, but not as much. Once I stopped craving sandwiches, I started making sure I took a salad, piece of meat, and possibly fruit (which isn't on the diet, but I wanted to get into eating healthy).

Throughout this time, I'd stopped drinking milk for every meal. I made sure I drank a glass of water in line for the drinks and then got a second; this is based on other diet articles I read. Water helps clear out our intestines. I stopped putting cheese on my quesadillas and salads and no longer took cottage cheese.

Now, when I crave potato chips or something salty and unhealthy, I eat almonds. I've been doing this long enough that I actually crave almonds over chips. I make sure I eat a small salad with every meal.

I've made myself the goal that by the new year, I will be 100% on this diet. It will have taken me about a month to make the transition, but I don't mind that it took a long time. Having the goal has allowed me to eat a cookie when I want one without feeling guilty, but I'm also working on only eating these foods. It's not difficult, and I feel so much healthier.

 

I will keep you all updated on how the diet is going and whether I feel better. I never believed a diet would work, but we'll see!

 

Merry Christmas!

A Cure/Cause of IBD?

Finals are finally done! Which means I have time to write another post. Today, I had the fantastic opportunity to talk with Dr. Steven Gundry from California. He's done some really amazing research, and I'm hoping to summarize his explanation of his theories about the cause of IBD.

Dr. Gundry first was a transplant surgeon, and apparently one of the best. He first began with the joke about how most people stop an elevator from closing with their hands, but surgeons stop it with their heads, because it's the least important part of their body. Joking aside, he took me throughout the timeline of his research. Dr. Gundry and his partner would do heart transplants, and several times it happened that the patients would develop coronary heart disease. They attributed it to the fact that those patients did not have healthy hearts before the transplant, so the same occurred with the new heart. However, the same thing began to happen when they did heart transplants on otherwise healthy kids.

Down the road, Dr. Gundry met a man who cleared his arteries in six months, with diet and supplements alone. This is a crucial part of his journey. He told me that you cannot see anything unless you go in with your eyes open, and without preconceived notions. Many researchers tend to already have theories about what should work, and that's what they end up seeing. Dr. Gundry saw that this man was clearly better, so for a year he tested this diet on himself and other humans. He thought that it worked, but wasn't sure how.

Dr. Gundry began to suggest this diet to his heart patients. His patients had amazing results. What couldn't be completely helped through medication was gone with this diet. Patients with other diseases said that they were even feeling no symptoms from the diet, which made sense because it was anti-inflammatory. People's arthritis was no longer bothering them, and Crohn's patients, who could never get rid of some symptoms no matter what treatment they tried, were symptom free.

At this point, Dr. Gundry looked at what exactly the diet was doing, whether it had more to do with what patients were eating, or what they weren't. What he realized, was that all the foods he had taken out of their diets included the protein lectin. This is a protein similar to gluten, but he has found that it plays a bigger role in autoimmune diseases. When on a gluten free diet, people tend to eat foods that are made from rice or corn, but corn contains 40 proteins that are very similar to gluten, so that explains why a gluten free diet may help, but it usually doesn't completely take away the symptoms of the disease. Lectin is contained within the seeds of certain plants and the genes of American cows (which is why people shouldn't eat cheese or drink milk from the United States).

This is how he explained how lectin is the problem. Plants are smart, a lot smarter than we give them credit. They can make matter from sunlight, which we have not been able to do yet. However, animals are their predators. In order to keep from being eaten, plants will put proteins (which act as poisons) within their seeds (or babies), in order to keep reproducing. Most animals, once they become sick from eating this plant, will stop eating it. He says that humans are pretty dumb; we think that we can overcome these poisons and take tums or immodium instead of not eating the foods that sicken us.

Lectin is contained in plants that were not originally eaten by our ancestors (if you are from European descent, possibly others as well), such as corn, potatoes, and seeds of fruits. At the beginning of human life (about 30 million or billion years ago), we only ate plants with two leaves. Although they also contain a poison, we had a long time to adapt and be able to digest them. Up until we were introduced to different foods (roughly 10,000 years ago), there is no evidence of arthritis in the skeletal remains of humans. As well, before that time period, most humans averaged to be over 6 feet tall. After then, humans shrunk to an average of about 4 feet, 10 inches (roughly 8,000 years ago). It took only 2,000 years to feel the damaging effect of eating poisons their bodies weren't used to. As he said, 10,000 years is merely a blink of time compared to the 30 (million/billion) years that we've had to evolve to be able to eat green, leafy vegetables.

The Kitavan society from the South Pacific eats no grains, and its only starch is from the taro root. They live well into their 90's with no modern medical care; they have no strokes, heart disease, or many other diseases of the modern world. And they smoke.

Italians refused to eat tomatoes until about 300 years ago because they believed the seeds to be poisoned. Irish people refused to eat potatoes until they had a famine 150 years ago because they believed them to be poisonous.

People with autoimmune diseases have a hyper-sensitive immune system. Dr. Gundry explained that when our immune system sees these toxins in our body, they attack more heavily than they do in a normal person's body.

Dr. Gundry also said that most people with IBD can relate the start of their symptoms to a certain event in their life, one that is usually related to stress or taking antibiotics. This is because our body relies heavily on the bacteria within our gut. There's about 5 pounds of bacteria in our gut, but they contain more genetic information than the rest of our cells combined. If these are messed up, such as by antibiotics or stress, it can start the onset of IBD if we are genetically predisposed to it.

 

I know this post isn't super well organized, but I'm still processing all of this as well. I was never a big believer in diets; throughout my 10 years I've been on tons of different diets, and none (except for liquid) have made me feel any better. However, I've been trying this diet (cheating a little bit now and again) for about 2-3 weeks now, and I had my first day of no loose bowel movements in months, if not over a year. I've gone through years of no remission, but I'm finally hopeful.

 

If you're interested in the diet here's what you can't eat:

Fruits

Corn

Grains

Dairy products from the U.S.

Sugar

 

What you can eat:

Nuts

Green, leafy vegetables

Meats (preferably organic)

French cheese or milk

Sheep and goat milk/cheese

 

If you have questions, feel free to message me!