As I sit down to write about my “health journey,”, I’m kind of stumped as to where to begin. There are a few layers to this story. From a very young age I had achy feet. My parents loved to visit Colonial Williamsburg and we went at least once a year. I love it too – now – but it involves a lot of walking. I remember, even as an 8 year old, needing to sit down whenever possible because my feet hurt. I’m sure my parents thought I was just being a complainy kid. Fast forward to college and the foot thing is still going on. I saw my primary care physician about it. He tested me. My iron was low. My B12 was low. I got shots for both. Those two problems could cause joint pain, I was told. I did have more energy once I started receiving those injections regularly, but it didn’t help my feet.
Next up, stomach “issues.” Lots of heartburn, reflux, and general pain and bloating. I had some GI studies. The result? I have two spleens. That’s it. This diagnosis meant nothing related to my tummy issues or my foot pain. Nothing that ever came up on blood tests or exams gave any reason for my symptoms. So I was put on proton pump inhibitors, acid reducers, etc. etc. These of course, treated some of the immediate symptoms. And I was oblivious to any long-term effects. Through all of this, no one ever said a word to me about diet. No one. Ever. At the time, I didn’t think anything of it. I had been trained, as have most of us, that doctors are very wise, very learned and we are to trust them. So I did. But I didn’t get better.
As a junior in college, I started waiting tables. It was a good job for a college student, but my feet ached terribly at the end of every shift. I took lots of ibuprofen.
I carried on this way, just dealing with the foot pain and dealing with the GI symptoms, for several years with no real insight into the cause and simply treating the symptoms as best as possible. And you know, the stomach issues, I thought were just normal. You eat, sometimes you feel ok afterward and sometimes you don’t. That’s just the way it is. I didn’t associate what I was eating with how I was feeling. I had been overweight in high school, but when I went to college and started exercising, I lost lots of weight. I was finally a healthy weight for my 5’3″ frame and felt really good in that regard. So I didn’t think there was anything wrong with my diet, the Standard American Diet, otherwise known as the SAD diet. Lots of grains, low fat “foods.” Nothing was organic or grass-fed at the time.
Once in graduate school (I have a masters degree in physiology from North Carolina State University – go Wolfpack!), I had to do my research work on pigs. Now people, us Paleo folks love some bacon. But let me tell you something. Pigs are pretty disgusting animals. They smell really bad. At least these animals did. They were university research animals. They had a nice big barn, and occasionally got to roam the earth, but in general, they were production animals, not your free range, heritage breed, no hormone, no antibiotic animals. My time working with them was pretty miserable. I hated it in fact. There were lots of good things about graduate school, but working with these pigs was not one of them. I couldn’t bring myself to eat an animal after being so up close and personal with those beasts. So I became a vegetarian. I admit that I was a bad vegetarian. I ate a lot of cheese pizza. Carbs, carbs, and more carbs. I was a poor graduate student, so I wasn’t substituting wild caught salmon for the meat I used to consume. Not surprisingly, I developed symptoms of irritable bowel syndrome. Again, I did not associate this with my diet. I had more tests. Nothing conclusive. No one said a word about diet.
Eventually the IBS symptoms went away. Maybe that’s common with that particular condition. I would suffer pretty badly for a few weeks, then be fine for months, then it would come back. I went on this way for a couple years, then things seemed to settle down a bit. I got married to a wonderful guy named Chris. I started eating meat again. Maybe that’s part of why I started feeling better. About a year into our marriage, I was feeling ok. Still suffered from bloating, but nothing serious. Then I got pregnant and I felt great! As I know now, pregnancy often puts autoimmune diseases into remission. I didn’t know I had an autoimmune disease, but I knew that for the first time in a long time, I felt really good. I had a hard time gaining weight (only time in my life that has been the case!), but other than that, had a totally normal, healthy pregnancy, and delivered the most perfect baby boy you have ever seen. Maybe I’m a little biased.
To be completely honest, I don’t remember a lot about my health for the next couple of years. I was in the baby zone. I loved staying home with my little one, then enjoyed a second healthy pregnancy, and then delivered the most perfect baby girl ever seen. Again, maybe a little bias there.
It wasn’t long after my daughter was born in 2006 that the digestive symptoms returned. Bloating, painful gas, and according to my husband, some really weird sounds coming from my digestive system. It was actually pretty embarrassing, but the sounds didn’t bother me like the pain did. My former primary care physician had retired, so I found another one and we began talking gall bladder. An improperly functioning gall bladder could cause these digestive symptoms. So I had the test and sure enough, I failed. My gall bladder was not functioning as it should, so out it came. If your gall bladder is causing your problems, taking it out is supposed to make you feel better. I’m sure you can guess where this is going. That’s right, I did not feel better after my gall bladder came out. The same symptoms continued, but eventually got worse. The bloating, the gas, the loud digesting, got so bad that after dinner each night, I lay on the couch and moaned while my husband put the kids in bed and cleaned up the kitchen. Every night I would say, “I’m going to the doctor in the morning,” but in the morning I would feel fine. I had had every test there was and nothing ever showed anything significant, aside from the gall bladder, and I wasn’t getting any better. Why go through more tests?
Fast forward to the summer of 2009. I’m baking a cake for a fundraiser at church and tasted the batter. Yes, with raw egg. Don’t judge. It didn’t taste quite right and I had made this cake many, many times. I knew what it was supposed to taste like. So what did I do? The most intelligent thing possible, I tasted it again. I decided that one of the eggs must have been bad. So I threw out the batter and started over. Baked my cake. Went on with my day. La-tee-da. Then later that evening, my stomach started rumbling, this extremely violent rumbling. Then the diarrhea began. I have never experienced anything like this in my life. I thought I was dying. It would not stop. Then my grandpa died and we set off on a road trip for the funeral. Driving 500 miles while I am having violent, frequent diarrhea. Horrible. I have no other words. Of course I consulted Dr. Google, who said with food poisoning, likely salmonella, you have to let it keep going to get out of your system. If you use a diarrhea stopping medicine, you will keep those bacteria in your body. So I let it run it’s course. Eventually this ended, but my run of the mill GI symptoms were still present. In short, I’m miserable. I’ve lost weight. I don’t want to eat because when I eat, I’m in pain. We celebrated my son’s birthday in August, he was 5 and my daughter was 3. I made it through the day, just like I did every day, but I was in a lot of pain. By this time, I was starting to think that maybe something I was eating was making me feel this way, but I followed the general nutrition party line – lots of whole grains, low fat dairy, a little lean meat. I couldn’t find a connection. I felt bad after every meal, no matter what it was.
The day after my son’s birthday, the pain was more intense than it had ever been before. I took my standard gas medicine, but it didn’t work at all. I was crying, the pain was so intense. Finally, after the kids were in bed, I told my husband I needed to go to the hospital. My parents came over and off to the emergency room we went. I was embarrassed. I had to tell these people that I had really bad gas. I remember sitting with the triage nurse going through my symptoms and she seemed very unsympathetic and stood up to usher me back to the waiting room. I burst into tears. I guess she could see how miserable I really was. And instead of sending me back to wait, she got me a warm blanket and sent me back to the doctors. I was so, so thankful. I have to stop here and say how much God’s hand was evident in all of this. I so resisted going to the doctor. I had lost my faith in the process. And as I said before, I was embarrassed. Nobody likes to talk about these kinds of things. Especially me. I didn’t even let my mom in the room with me when I was trying on wedding dresses. Super modest!
The ER docs put me on morphine which managed the pain a little bit. I had an x-ray. Apparently, this showed something a little off, but nothing conclusive. Up next was a CT scan. This one showed “free air” in my abdomen. No joke, I thought! I can feel all that free air and it hurts. I thought this was doctor speak for gas. But “free air” actually means air in your abdomen somewhere it should not be, ie. outside of the digestive tract. Meaning something has a hole in it. They called the same surgeon who removed my gall bladder. How I remembered the name of that surgeon while on morphine, in the middle of the night, in excruciating pain, I have no idea. So at 2:00 AM, two days after my sons’ birthday, I had emergency surgery. Three feet of my small intestine were perforated, holes all throughout. You may have heard of “leaky gut.” This was leaky gut! Folks, there are not supposed to be holes in your digestive system – just the mouth and the other end, not in the middle. The tissue was sent to pathology and they confirmed Crohn’s disease. This was a total shock to me. I knew nothing about the disease and what it would mean for my future. I was in the hospital for a few days while my digestive tract healed, but when I got out, I was told I was in remission. The surgery had effectively removed my disease. I felt soooooo good. No pain, no gas, no painful bloating, no weird noises coming from my gut. It was so wonderful. I received such good care in that hospital and I am very, very thankful for it.
Here’s the kicker, when I got out of the hospital and met with a gastroenterologist, we talked about medicines that would hopefully manage my symptoms, we didn’t talk diet. Actually, that’s not entirely true. I was told to eat a bland diet, lots of simple carbs, no raw veggies, no nuts, no seeds. I had enough sense at that point to know that this diet prescription was not healthy and I pretty much disregarded it. I went back to my standard “healthy” American diet. I was never told that Crohn’s is an autoimmune disease. This fact was never mentioned. Even as I write this today, I am completely shocked how misinformed I was.
I began to gain weight and regain my strength. All was well. The medicines were keeping me in remission and according to the doctors, I was in good shape. Just hold the course, hope you don’t get one of the cancers that are commonly caused by these drugs, and you’ll be fine.
Then one day the veil was lifted from my eyes. A friend’s daughter was diagnosed with an autoimmune disease and they refused to put her on these strong drugs. What?! You don’t have to take the drugs? There are other options? They started on the autoimmune paleo diet, saw a functional medicine doctor, recommended some books to me, and started my wheels turning. I read lots of books: Diane Sanfilippo’s Practical Paleo, Sarah Ballantyn’s The Paleo Approach, Robb Wolf’s The Paleo Solution, Loren Cordain’s The Paleo Diet, Mickey Trescott’s Autoimmune Paleo Cookbook, and Chris Kresser’s Your Personal Paleo Code. In short, I began to educate myself to this completely different way of thinking and treating disease.
We went paleo the day after Easter 2014 and haven’t looked back. We started with straight up paleo. I toyed with autoimmune paleo off and on, but it is hard and I never lasted long. Paleo is a walk in the park compared to autoimmune paleo. I didn’t want to do it. I wanted to eat onion rings and cake and potato chips. I love junk food. You can make some junk food substitutes paleo, but not really autoimmune paleo.
After a little over a year of eating paleo, I had a colonoscopy and my GI doc saw no signs of inflammation whatsoever. He endorsed my stopping both of those dangerous drugs. To say he was a sceptic is a gross understatement. I hope I have opened his eyes a little bit to how diet can control digestive disorders. Who knew!
I haven’t forgotten about the foot issues. In the mix of all this digestive upheaval, I had surgery on both of my feet. One in 2009, the other in 2010. I had a tarsal coalition in both feet. Basically, that means that instead of cartilage in one of the big joints in my foot, I had bone. That should not be. The coalitions were removed and I felt really good. I ran, I did triathlons. Then the foot pain came back and really got worse. X-rays show that I now have arthritis in those joints. Cortisone shots helped for a long time, but as of now, fall of 2015, cortisone is no longer helping and actually can start causing problems so I’ve had to stop those treatments.
This brings us back to my begrudging resignation to the autoimmune paleo diet. There is inflammation in my body. Thankfully, my gut feels good. I rarely have any sort of digestive upset. But my body aches. I’m 41 and often feel 81. I’m sore and creaky. Two weeks ago, I did what I thought would be the hardest part of this journey – I gave up coffee. People, this is something I never wanted to do. Said I would never do. So I hope you can feel the desperation here. My foot pain is affecting my quality of life. I can’t play with my kids like I want to. I can’t hike like I want to. I love being active and it’s hard right now. If I could give up gluten, dairy, corn, peanuts (I love peanut butter) and even COFFEE, I can do anything. I can do all things through Christ who gives me strength. Its a great Bible verse, often quoted, a little trite sounding perhaps, but I believe it’s true. I have to repeat that to myself throughout the day.
This brings us to today. Day one of my full on autoimmune paleo journey (early September 2015). You know what, I think giving up sugar is going to be even harder than coffee. I just started seeing a chiropractor and she recommended I eat protein every two hours to help with the sugar cravings. I’m clinging to that. With a bag of homemade beef jerky at my side. Not coincidentally, this is one of the first recipes I’m going to share with you. My goal is to write at least twice a week, sharing recipes and how I’m progressing on my journey. I’m hoping to create recipes for all of us that remind us of our childhood, nourish our bodies, heal our bodies, prevent disease and still taste really, really good!
I told you this was the long version. If you’re still awake and reading this, I hope you’ve found something in it that will help you. My words of encouragement would be to take charge of your own health journey. No matter how wonderful your doctor(s) is/are, they do not have the vested interest in your health that you do. All that time that I was in pain, going to doctors and not getting any relief, I knew something was wrong, but I didn’t fight for myself. I didn’t take the time to educate myself and that’s entirely my fault. So be wise, be honest with yourself, don’t be embarrassed about your symptoms. That’s your body’s way of telling you something is wrong, so listen to it. If you’re a praying person, pray for wisdom and God will give you insight. Please feel free to share your own struggles and questions in the comments. I wish you well.
January 2019: Update
I’ve resisted re-reading this page for a long time because it’s so very personal and raw. It’s hard to talk about symptoms that can be embarrassing, but that’s exactly why I did it. My hope then and now is that sharing my story will help even one other person.
I’m now five years into my Paleo journey, I just turned 45, my kids are 14 and 12 and I’ve been married almost 17 years. I still have the best husband and kids in the universe and we are still following the Paleo diet – and lifestyle. I noticed that in my lengthy report above, I don’t mention any of the lifestyle change I had to make along with diet. I won’t get into that here, but I’ll work on a post all about those other highly important factors. My purpose in writing this update is to hopefully encourage you. Most people managing Crohn’s disease have multiple surgeries and flares fairly regularly. I have never had a flare, I haven’t needed any additional surgery, and I don’t take any dangerous medications to manage my disease. Doctors use different terminology to describe my status: remission, asymptomatic, but I say cured. Healed. I don’t want to live under the banner of Crohn’s disease. The way I cook and eat and live my life keeps me well and I don’t think I need to mention that disease anymore.
I know those of you at the beginning of your healing journey may have a long way to go and I hope that hearing my story encourages you to keep going. It is possible to find health and vitality through lifestyle changes. There is no magic pill, whether you take actual pills or not! There is work involved and it takes time.
Why I am no longer following the autoimmune paleo diet is one of my most read posts so I suppose I should give a little update there. I’ve been living this lifestyle for a long time now. I know how to listen to my body. But it wasn’t always that way. This has taken practice. In my functional medicine coaching training, we talked a lot about mindfulness. This just means taking the time to be aware. So I’m aware of how I feel. I’m aware of how certain foods or beverages affect me. For example, I cannot drink wine. Period. No wine. Ever. But I can drink coffee!!! And I’m ok with that. I love certain nuts and generally eat some everyday, but occasionally, I feel that I’m going overboard and so I pull back. I don’t take a test or see a doctor, I just pay attention to my body.
If you’re at the beginning of your autoimmune journey, you may need to follow the more strict autoimmune paleo diet for a while to get your symptoms under control. But it’s not a life sentence. That way of eating is not meant to be longterm. But you are meant to learn from it. It’s an elimination diet of sorts where you take out a whole bunch of foods and beverages and then add them back in one-by-one and figure out what causes your symptoms.
Know what I’ve found out through doing these elimination diets over the years? Sugar is a huge trigger for me. Bummer, right? So everyday I have to make a choice. Do I want that piece of cake or candy or cookie or do I want to be able to walk without pain? I’ve experienced the freedom of very little foot pain enough to know that it is worth it to me to give up all sugar for a time. And I also know that sometimes it’s worth it for me to eat the cake. But it’s a choice. A conscious choice I make every day.
As usual, I’ve started to ramble a bit so I’ll draw this update to a close now. What I hope you glean from all my many words is that following an anti-inflammatory diet such as Paleo is sustainable for the long term (if you have good recipes to follow, which I am providing for you here) and you have to work at it. You have to put some time and money into good quality ingredients and you have to prepare food at home. There is no easy button. But it’s so very doable! An autoimmune disease diagnosis is not a life sentence. Don’t let it be that for you. If you want help, there is a lot of information available for free here on my website and in those books I listed above. I am also available to be your own personal health coach! If you need additional support beyond what is provided here, head over to my coaching website: Total Wellness Health Coaching.
I don’t want this to come off as an advertisement, so I hope you know that I am very willing to answer your questions and provide my thoughts and opinions through this blog. My goal is to share my story so others will find the level of health and freedom I have found. And then you can share your story as well.