My journey: A new view of food

My journey: A new view of food

A few months ago, I started writing my story from the past year. I didn’t know if I would ever publish it on my blog, but I felt like it was important for me to have a record of what I’ve experienced. Since I started writing about my journey in bits and pieces, I’ve been amazed how many people have contacted me to share a similar experience or ask for advice. I finally decided to go back to last spring and tell my story in more detail. I hope it doesn’t come across as overly dramatic or too much info, but I’m taking the risk of being vulnerable because it might help someone else. 

I broke it up into several parts, so I hope you will come back in future days to read more. To get things started, I need to talk about my relationship with food. They say, “You are what you eat,” but I didn’t realize how true that was until a year ago. It’s not only true physically, but it’s also part of who I am emotionally and mentally. For me, it wasn’t just about eating food, but showing love through food, celebrating through food, making other people feel special with food… Food is part of my identity. It’s part of who I am.

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If someone had told me five years ago or two years ago or even a few months ago what my life would look like now, I don’t think I could have believed them. Even now, I sometimes wonder if I’m still really me. I can’t believe who I am becoming.

And it’s all because of food.

Five years ago, I was the woman my kids called, “Sweet Mama.” I was the person who never worried about what she ate.

“I’m on a high sugar diet,” I would joke to friends, as I chugged my Coca-Cola and ate a bag of M&Ms. I spent decades trying to perfect my chocolate chip cookie recipe. I loved to spoil my kids with a Hershey’s chocolate cake “just because.” I surprised them after school with an ice cream sundae bar, complete with four types of ice cream to choose from.

So much of my joy, family celebrations and the reward system I had created for myself and my kids revolved around indulging in food. I turned to food in times of happiness. I went to food in times of stress. Food was a fun activity on a Friday night. Food was my friend when I was sad.

Food is at the center of most social activities. It’s a reason to get together with friends. It’s the center of holiday gatherings. It’s how we celebrate!

**

Throughout the first 47 years of my life (I just turned 48), I thought thin equaled healthy. I struggled with feeling a bit overweight growing up because I wasn’t as skinny as some of my friends. I achieved my perfect goal weight toward the end of college. From then on, I was pretty successful at staying within a range that felt good to me. If I sensed I was gaining, I could skip meals or stop eating in the evenings to get back to where I wanted to be.

I would skip lunch so I could have a chocolate milk shake. I would use soda or diet soda to keep from eating snacks. I’ve always led an active lifestyle that included walking, biking, jogging or just playing with my kids. My diet seemed to be working for me, and I enjoyed it!

A New View of Food: My journey from gluten free to Whole 30 to Paleo AIP after being diagnosed with Celiac Disease.

 

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I became more aware of some of my bad food choices about three years ago when I was convicted to reduce my sugar intake. Each spring, I went for a month or six weeks without any sugar in my diet. Each time, it felt like a marathon of deprivation that would help me get back to my goal weight.

I didn’t know enough about food to know how to create a long-term diet that would allow me to squelch my sugar craving for much longer than that though. I would slip back into my old eating patterns. I found them comforting. The decline would start out slowly, but within a few months, I would be back to the old me, the real me, the Sweet Mama me.

**

During the last year, my relationship with food has shifted dramatically. Often, I fear food. I have become highly sensitive to a variety of foods. I don’t always know which food or which hidden substance might affect me, so I eat cautiously.

I don’t enjoy eating food outside of my own home. I used to love going out to eat with friends or running through a drive through. These days, I know I’m taking a risk that could cause me to be sick for weeks afterward. Even when I do find the perfect menu item at a restaurant, the experience of being surrounded by so many foods that I can’t eat can take an emotional toll.

Sometimes I feel annoyed at food. Why does it have to be so hard? Why can’t I go back to my old life. Why can’t I just wake up from this stupid bad dream and not worry about washing my hands just because I touched a piece of bread.

And then sometimes, I find my relationship with food exciting. For the first time in my life, I’m concerned about which foods have the most nutritional value. I enjoy buying raw veggies that I’ve never tried before and learning how to cook them.

**

My journey began when I found out I had celiac disease and later, collagenous colitis. It involves going gluten free and then doing The Whole 30, then moving into Paleo and now the Paleo Autoimmune Protocol Diet. But even if none of those things are of any interest to you, I hope you will keep reading.

Through this process, I am changing my relationship with food. I now think of food in a different way. It is the fuel that allows me to either function at my best possible level, or it will send me into a state of nonfunction.

I hope some of my experience will help you think differently about food, as well. Maybe it will help you gain compassion for someone with an autoimmune disease, an allergy, food intolerance or any other disease or disability. Or maybe it will even help you have a new understanding of what you eat.

**

Read the whole series:

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

Part Five: The Isolation of autoimmune disease

Part Six: From Whole 30 to Paleo AIP

Part Seven: What do we eat?

Part Eight: A year later

 

Thanks so much for reading. Please feel free to leave me a comment below or enter your e-mail address in the box to the right to get my latest post in your e-mail inbox.

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When the news is difficult to hear

When the news is difficult to hear

It’s been almost a year since I started this journey with autoimmune disease. I was hoping to check in Friday on my birthday with an amazing story of restored health and awesome lab reports. Instead, this has been a hard week.

Each time I face a new hurdle on this health journey, my husband reminds me that this will be one of those defining moments I will remember when I get to that place where life is starting to feel more normal. I actually feel farther away than ever with more questions than I even had a year ago.

But I find that writing it down might at least helps me process the information and give me a reference someday when I’m trying to remember all of the key events on this journey. Although it’s kind of weird to write about my health in such a public way, I also hope it might help someone else walking a similar path. So, here goes…

**

I visited my gastroenterologist on Thursday as a follow-up visit to review my routine blood tests. I have been on a strict gluten-free diet for about 10 months now, so my celiac blood panels should have returned to normal. In other words, my body should no longer be flooded with antibodies, showing that my immune system is trying to defend against the gluten in my system.

Instead, my antibodies were very high. They looked more like that of a person with celiac disease who is eating gluten on a regular basis. This means that my immune system is still working hard to destroy my intestines in its mixed-up effort to try to fight off what it thinks is a dangerous invader. My blood work also showed that I’m still low in important vitamins and minerals because of my inability to absorb nutrition from my food.

This answered some big questions for me such as why I have continued to feel sick for nearly a year, despite removing gluten from my diet. Since the beginning of the year, I’ve been on a much more highly restrictive “healing diet” that is designed to help my gut recover from the damage of celiac disease. For most of 2017, I haven’t eaten grains, dairy, soy, legumes, sugar, processed food, eggs, nuts, seeds, nightshades, chocolate, alcohol or coffee.

I don’t eat in restaurants, and 98 percent of the time, I only eat food prepared in my kitchen by me. And yet, I’m still experiencing autoimmune symptoms.

**

My doctor gave me two possible explanations for why this is happening. The first one came in his office.

Most people with celiac disease need to strictly avoid ingesting gluten, which includes even trace amounts that can come through cross contamination, especially in restaurants. However, in my case, perhaps I can’t even touch bread. He instructed me to avoid even the smell of bread. If I can smell bread, it means the gluten has been aerosolized, and I could be contaminated, he explained.

In other words, no more making PB&J sandwiches in the morning for my daughter’s lunch box (even with the extreme hand-washing that I do afterward). No more mixing up birthday cakes for my kids that could release flour into the air as I operate the hand mixer. No more baking a pizza in my oven, which fills my kitchen with the smell of baking crust.

While my family has been extremely careful to help me avoid cross contamination when they eat bread, crackers or baked goods, the doctor said all six of us should eat gluten free at home because of my extreme sensitivity. Perhaps this doesn’t sound too hard to accomplish. My son and husband have already gone gluten free, so that only leaves three more who need to make a big diet change.

However, this actually stresses me out more than my own dietary needs. I regularly cook gluten-free dinners for the whole family. But eliminating all of the gluten-filled cereals and toast at breakfast and replacing all of the quick sandwiches that go in lunch boxes is going to add even more planning to my already full life.

My doctor also referred me to a celiac clinic in Chicago to get more specialized help because my sensitivity is so severe. I actually didn’t expect to even hear from him again when he sent me on my way.

**

The next morning (my birthday, by the way), he gave me a call. He said he had been so interested in my condition that he did more research on it. He discovered a form of celiac disease that doesn’t improve with a gluten-free diet. It’s called refractory celiac disease, and it affects about 1 percent of people with the disease.

He asked if we could repeat my endoscopy to do some more testing and determine if I have this condition. I was amazed that he would care enough about my situation that he would take the extra time to do this research. His office called me a little later, and we set up the procedure for Monday morning!

If I do have refractory celiac disease, it could mean going on an even more extreme liquid diet to try to pinpoint everything that is causing problems for me. It also could mean adding some drugs to my treatment plan, which scares me. (I tend to do a lot of reading about immune suppressing drugs, and they don’t sound like a good long-term solution.)

At this point, I guess all of the options seem scary. It’s hard to imagine that I have such an extreme sensitivity to gluten that I need to avoid even smelling bread. Even with all of the lifestyle changes I’ve already made, the treatment options with refractory celiac disease sound extreme.

**

Life with celiac disease

To wrap this up, I guess I’ll tell a story about my birthday. The ladies I work with all make a point of celebrating each other’s birthday by going out to lunch or doing something fun together. Since I can’t eat in a restaurant, I asked them if they would come to my house to eat “Emily food.”

I prepared for them an entire meal of my favorite dishes made only of the foods that I can eat (meat, veggies, fruit and healthy fat). I loved preparing this meal for them, and started getting emotional as I waited for them to arrive. For the past year, I usually feel excluded in food situations. It’s a constant exercise in self control to stay away from the growing list of foods that I can’t have.

For this one meal, I was surrounded by people who were eating like me. They had chosen to enter into my world and walk beside me. I often feel so isolated because of my inability to take part in the celebrations of life by going to restaurants to meet friends, taking my kids out to ice cream or eating birthday cake. For this one meal, I felt so included.

It made me realize how I can be better at entering into someone else’s world. Giving up my way of doing something to show compassion or support for another person’s situation can be such a remarkable way to demonstrate love. I hope that I will be more compelled to do that for someone after experiencing it myself.

You might be doing that for me right now by reading my story. If that’s the case, I want to tell you thank you! I would love it if you would leave me a comment to let me know you stopped by!

 

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A view from the top

This picture really doesn’t make much sense, even to me right now. I’m holding the camera right at my nose, looking down to show the view of my feet. Except you can’t see my feet.


I have officially exploded. And it literally happened in one week.

I’m not kidding.

Last week, when I went to church, people were still saying things like, “Wow! You are really small. What does your doctor say?”

Then I would whip out my tape measure and show them my tummy measured exactly 31 centimeters as it was supposed to at 31 weeks. (Just kidding about the tape measure.)

This past week at church, someone said, “Wow! You really puffed out all at once!” She said this without making any attempt to disguise her complete shock at how large I suddenly am.

I know the feeling.

Did you notice all of those stains on my shirt in the photo? I don’t remember spilling that much food before pregnancy. But now, I have a constant dribble mark down my shirt, showing everything I’ve had to eat or drink that day.

We have seven weeks left until we get to meet this sweet little girl baby. I’m so excited to see her!

But I’m afraid to think how much I am going to grow in that time.

I’m also a little worried about everything we have left to do.

Since my husband injured his back, all of those projects that we had been procrastinating about are now even more on hold.

We still have to buy a crib, put it together and rearrange some furniture to make room for it. I’m thinking we are going to put the crib in our room at first and then try to figure out some type of arrangement for the girls to room together.

Our daughter’s room is the smallest in the house. I think it’s only 10×10. I have been searching for a loft bunk bed for her so we could put the crib underneath.

We need to get some type of small dresser to store the clothes and diapers. And, oh yeah. We need to get some clothes and diapers. I’m so excited though because I started giving my daughter’s clothes to my niece around the 12-month size. My sister saved all of those clothes for four years! So, I will have plenty of clothes once we get through the baby-baby stage.

The other priority is an infant carrier and car seat. I need to either get one from someone who offered to loan or give me one or we need to buy one.

I should probably be more stressed about all of this, but I know we can pull everything together very quickly. I do keep reminding myself that our other daughter was a scheduled C-section, too, and I ended up having her even earlier at 36 weeks. So, these seven weeks could turn out to be six, or five or four.

I also was brought back to reality this week by a friend who told me about a 19-year-old, who is mother to a newborn girl. The father is out of the picture. And the young mother’s parents have both died. One had cancer, and the other died of a heart attack.

My friend’s sister has given this young girl and baby a home. But she is in need of everything for her baby. It made me realize just how much I really have and how much we often think we need, but we really don’t.

It’s been amazing this week to see people come out of the woodwork with donations for this young mom. It definitely helped me put my life in perspective and stop thinking about myself so much.

OK. Not completely. I’m just trying to make a plan to get everything done, rather than worrying so much about what is going to happen.

And I feel so blessed that I have such a wonderful family to help me with everything… especially my shoes. Since I can’t really see them.

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Sharing my story at Autoimmune Wellness

Sharing my story at Autoimmune Wellness

A few months ago, I was contacted by Autoimmune Wellness to share my story as part of their series called, “Stories of Recovery.” The web site has been a huge source of help to me since I began my autoimmune journey more than a year ago. I faithfully read their blog, use their resources and have listened to every episode of their podcast.

By the time the deadline rolled around a few weeks ago to submit my story, I was feeling less than adequate to write a “Story of Recovery.” The autoimmune journey can be a roller coaster, and I’ve been at a low point the past month or so. I’ve been struggling with some recurring issues, and even trying to sort through some new symptoms.

The editor of the blog encouraged me to write my story anyway, so here it is. It’s my hope, as always, that perhaps by sharing my journey I might be able to help someone going through something similar.

If you are new to my blog, here are some links to the back story on my journey with autoimmune disease:

The mystery of Celiac

When the news is difficult to hear

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

Part Five: The Isolation of autoimmune disease

Part Six: From Whole 30 to Paleo AIP

Part Seven: What do we eat?

Part Eight: A year later

My journey: From “impressive” to “beyond awesome”

Listen to my story on the Energy Edge podcast

 

Thank you for stopping by! I would love to know you were here. Please leave me a comment to say, “Hello”!

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My journey: From “impressive” to “beyond awesome”

My journey: From “impressive” to “beyond awesome”

I always feel a little weird writing about my health situation on my blog. But now that I’ve put it all out there, and so many people have been asking me for an update, I feel like I need to share some of the significant things that have happened lately.

A few weeks ago, I went to see a functional medicine doctor for the first time. I had been on a waiting list for four months to get into this doctor who specializes in patients with autoimmune disease.

I handed her a thick folder full of my medical journey from the past year. As she flipped through each page, she kept repeating the same reaction: “Impressive.”

After a few minutes, I had to interrupt. “Why do you keep saying ‘impressive’? I get the feeling you don’t mean, ‘Wow! This is awesome!’ ”

Well… she explained. First, you are the first patient I’ve seen whose antibodies were so high on every test that was taken. (In other words, my overachiever immune system has been working super hard to destroy my own body.)

It’s also impressive to see your level of malabsorption. (I knew I had been struggling to absorb the nutrition that I need from my food, but she was actually impressed by just how bad I actually was! Go, me!!)

Finally, she said, “You have had really amazing medical care. It’s impressive.”

My journey with autoimmune disease: From "Impressive" to "beyond awesome"

Happiness in a cup: My bullet dandelion tea

I thought about all I’ve been through in the last year. It’s true. I’ve been to four different doctors in the past year, including three specialists. I’ve also seen a dietician, who has been an “impressive” part of my journey. I’ve had a colonoscopy, two endoscopies and an MRI to understand what’s going on inside my body. And I’ve had a crazy amount of blood work done. It really has been impressive.

She sent me away with an order to have 10 more vials of blood drawn before I came back to see her in two weeks. I had that appointment on Thursday.

When I walked in, she immediately started asking me what I thought about an immune modulating drug she had recommended at my last appointment.

“Have you seen my lab results?” I asked. “I really think we should look at those first before we discuss treatment.”

She pulled up my 20 or so test results on her computer, and this time I had moved beyond, “Impressive.”

“This is awesome,” she said. “You are beyond awesome.”

Here are a few of the amazing things that she saw in that report:

All of my Celiac antibodies are now negative! This is a huge answer to prayer and it shows how well my body is responding to my diet, especially compared to a few months ago when my other doctor was so concerned that I wasn’t responding to a gluten free diet.

“You are healing, and you are beating Celiac disease,” she said.

I’ve also quintupled my Ferritin level, which indicates my body’s ability to store iron. This has been a major problem for me during the past year. A year ago, my Ferritin was a 3 on a scale of 11-291. Now, I’m at 15, which means, I’m actually IN the normal range! I’m finally not anemic, which has made a huge improvement in my health the past few months. I’m still in the low range of normal, so I am going to try a new iron supplement to help with that. But, hey. I’m so much better!

All of my other vitamins and minerals also were in the range of normal. I’m going to add some new supplements to help with things like vitamin B, D, magnesium and a few others, but I am getting there.

My doctor still had quite a few concerns from my blood tests.

  • One of my worst ongoing symptoms is acid reflux. The only test result that had gotten worse was one that looked at my esophagus. This is a bit of a mystery.
  • I tested positive for Crohn’s disease for the second time. I’ve already had a colonoscopy and MRI to rule out Crohn’s disease, but for some reason my body is still producing antibodies that would indicate I have it. Again, another mystery.
  • My thyroid antibodies also are higher than normal. She is doing some additional testing for that. It is super common for people with Celiac disease to have another autoimmune disease that affects the thyroid (Hashimoto’s), so I’m glad she is looking at that.
  • I’m also hypoglycemic. Again, I wasn’t surprised at all by this. I’ve suspected I have some insulin issues because of my need to eat every two hours.

So, lots of fun stuff… but overall, I still see that I am moving forward and making good progress. I’m going to start on a new drug that is supposed to help moderate my immune system, and I’m adding some supplements to help with my nutrition level.

I’m also working on reintroducing new foods into my diet. This is easier said than done. I’ve really grown accustomed to my diet, and it’s hard for me to step out into the unknown by adding new foods. I’ve had some negative reactions to some of the foods I’ve tried, which knock me down again, so it’s scary each time I try something new.

Thank you so much to everyone who has prayed for me and all of the continued support. Feel free to leave me a comment!

**

If you are just catching up, you can read the rest of my story here:

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

Part Five: The Isolation of autoimmune disease

Part Six: From Whole 30 to Paleo AIP

Part Seven: What do we eat?

Part Eight: A year later

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:)