My Story

I’ve always been a firm believer in sharing the experiences of your life with others…good or bad. Because you never know whose life you might touch or the awareness that you can spread. I can’t tell you how many times God has laid it on my heart to open up to a complete stranger about random things in my life. And almost every time it sparks a connection that one of us really needed. This is why I am starting this blog. To share my story, my daily woes, my joys and triumphs. If I can touch one other person in a profound way then it will be worth it.

On so many days my life and identity seem to be defined by my illness. Celiac Disease. If you are a fellow sufferer you know exactly what I mean. And you know that it can invade every moment of your day. You are always thinking of the next meal, wondering if your body is healing, hoping you are doing all of the right things. Has it done too much damage already? It can eat away at your psyche and leave you feeling crippled. But, it is a journey. One that I am really just now beginning to embrace and one that I hope you will take with me.

I guess I’m getting a little ahead of myself. Let me give you my history. As I’m sure was the same for many of you, my health suffered for years. There was never anything life threatening in the sense that I ended up in an emergency room. But I did feel debilitated for a very long time. It all started about 10 years ago with some fatigue and abdominal pain. I never used to go the doctor. As in, never for years. I remember being in my early twenties and not even having health insurance because I thought it was an unnecessary expense (oh to be so clueless again). So even though the time was hazy, I must have been in a lot of pain because I actually went to a doctor. Just one I found in the docfind list as I didn’t have an actual PCP. She checked my bloodwork and said my cholesterol was high and that’s about it. No explanation of the abdominal pain or the fatigue. So I went about my routine thinking if there was anything major she would have told me. I must be fine.

But of course it was only a matter of time before the pain started bothering me again. I decided that I didn’t really care for the first doctor so I made an appt. with another. And that’s when my horrible experiences with doctors began. The next doctor sent me for an x-ray where they saw that my colon was full so she gave me Darvocet for the pain and told me to take some fiber. On a follow-up visit with her she literally forgot me in the exam room. I waited for over an hour and when the lights started turning off I yelled out for anyone else in the office. They all had forgotten I was in the room, the doctor had already left and they were locking up!! I know, I know, it’s horrible. But would you believe me if I told you that it happened to me at another doctor’s office also? The doctor didn’t leave, but he did forget to come by my room. So after an hour of waiting I got a receptionist who apologized profusely only to leave me waiting another half hour. I’ve had so many experiences like this that it would just be too many to list and would get very boring.

So I stopped going to doctors for a while til after my son was born (almost 9 years ago). It was at a visit to my OB a few months after he was born that I started to relay some of my concerns again. I was having severe fatigue and lack of sex drive which he just told me was because I had a baby, that it would pass. I also asked if it was normal for my hair to be falling out in clumps. I had heard that hair loss is common after giving birth because you grow so much new hair while pregnant. He said it would be normal to be losing hair after a few weeks, but not so many months later. He recommended I go see my family doctor. Of course, I still didn’t have one so I searched the docfind again.

This time I got lucky and finally found someone that gave me some answers. The doctor listened to me for 5 minutes, came over and felt my throat and told me “You have an enlarged thyroid. I think you are hypothyroid.” Finally! A reason for not feeling good. And all she had to do was touch my throat. After having blood tests to confirm the diagnosis she started me on Synthroid. And then the reality of being on medication for the rest of my life started to sink in. I was pretty devestated. As someone who didn’t even have health insurance for years, who rarely thought about doctors, the shock of finding out I’d have to go to one on a regular basis was a bit overwhelming.

She referred me to an endocronologist and yet again I was left in an exam room for over an hour (incident #3). And then when the doctor came in literally the first words out of her mouth were “Well, there’s a good chance it’s not cancer and if it is it’s treatable.” WTF?!! I was coming in to just make sure I was on the right dose of medication. And this woman is throwing the C word at me. I was scared out of my mind because I wasn’t even aware that was a concern. Maybe a hello would have been a better way to go.

This type of thing went on for years with me going to one new doctor after another. I kept going because I never felt better. I felt like I was slowly dying. I was so exhausted, emotional and depressed. I would tell my doctors this and they would say “Well, your thyroid levels look normal. You are fine. You’re just a mom. ” This became code for “You are a woman. You are hormonal and a hypochondriac. It’s all in your head. ” Luckily, something inside me said not to give up and just keep trying new doctors until I found the right one.

Along the way the pain, frustration and fatigue seeped into every corner of my life. I never, ever, ever felt good. My body was slowly shutting down. Most mornings I literally could not get out of bed. My brain would be awake but my body would not respond to its’ signals. I relate it to what I imagine it would be like to be in a coma. Your mind is screaming out but your body just can’t hear. You are almost paralyzed from the weight of the fatigue and body aches. And when I was finally able to pull myself out of bed I was cranky, achy, tired, foggy, depressed, angry and hopeless.

This affected my marriage, my child, my work and my friendships. I was too tired to play with my son, to clean the house, to be intimate with my husband. I was too tired to care about much of anything. And I felt so alone in it all. My husband and family didn’t understand what was going on with me. He especially didn’t like who I was becoming and I think he thought I was just lazy. Looking back now I can’t imagine how hard it was for him. He was stuck in a marriage with a zombie. And not a very nice one.

During all of these years we were also trying to conceive another child. Anyone who has been through unexplained infertility knows how painful it is and how straining it can be on a marriage. It was a constant disappointment and heartache to me. It was all I thought about and I just wasn’t happy. I wanted more than anything in the world to give my son a brother or sister. I didn’t want him to go through life as an only child like me. I know how lonely it can be at times. We tried and we tried and nothing. They ran some tests and couldn’t find anything conclusive. And we just weren’t in a financial position where we could try any alternative treatments or medications. It was all natural or nothing.

Then after years of trying, on the day that my husband lost his job and our entire world was turned upside down, I sat staring at a positive pregnancy test. I can’t even say that I felt happiness because of everything that was going on around me. At the time, we had just moved back home to Atlanta and my business hadn’t taken off very far in the new city. How were we going to take care of our son, much less another child? And not to mention that health insurance I didn’t see the value in for all of those years was gone. To hang onto Cobra would have cost us $1500 a month on $0 income. The stress and fear was overwhelming. I was blessed to have a friend that pointed me to a local festival to advertise my business. And I gained just enough clients to put some food on our table and pay the rent.

I was under so much worry that I barely thought about being pregnant. I just had so much else on my mind. And then I started to realize how different this pregnancy was than my first. With my son I was sick as a dog day and night. And with this one I wasn’t nauseous at all. My breasts weren’t sore. I didn’t have any food cravings. I made an appt. at 11 weeks for a check-up. I had told my husband and mom that I just didn’t feel pregnant and of course everyone said I was fine. We went to the appt and I told the doctor my feeling. Without conversation she took me back to the ultrasound room. This was the first time a doctor did an ultrasound for me. That should have told me something. All I could do was stare at the ceiling. She kept asking me if I was sure of the date of conception. I was sure. I couldn’t breathe. Without much emotion or tact she informed us that I had miscarried. Twins. Two sacs. No babies.

The next few minutes were a blur of sitting in her office. You always see people sitting in the actual office with a doctor on television. But in real life I guess it’s only reserved for the bad news. She informed me that I had to have a procedure to remove the sacs and I could try again in 3 months. Just like that. As if in 3 months I would even be able to breathe again.

I remember literally running past the check-out desk as all of the receptionists looked at me with pity. I ran past the expectant moms, with my little belly that was already showing, as they looked at me in fear. I made it to the elevator before the screams of sorrow took over. I will never, no matter how much joy comes into my life, ever forget that day. Nobody ever does. It becomes a part of you.

This somehow was a turning point for me in my desire to find an answer to what was wrong with my body. Why had I miscarried? Why were there days that I was so bloated that I actually did look 6 months pregnant? How many times had someone asked me if I was when I wasn’t?  And after you have lost a baby, that is not really a question you want to be asked. Why did I feel so miserable?

By God’s grace I found the first doctor that was willing to help me. I actually chose a PCP and started going to her fairly regularly. She ran tests and listened to my woes. For many months we didn’t find anything besides high cholesterol and some signs of inflammation. But the thing I liked was that if I asked her to test for something she would do it. She would say “Well, let’s try it and see” And I started becoming an avid researcher. In that way I was a little bit of a hypochondriac. Because I thought I had everything under the sun. I was in constant fear of the big “C”. I looked and looked and catalogued my many, many symptoms. And somehow, and I can’t even remember how, I stumbled across this thing called Celiac Disease.

As soon as I read all of the symptoms a lightbulb went off. Fatigue, pain, BLOATING!!, abdominal pain, hair loss, skin problems, unexplained infertility, miscarriage (this one really got me), and the list goes on. I went to my doctor and told her what I thought I had. She gave me that look. You know the one. The one that says I’ve been on the internet too much. But she agreed to check and that’s why I like her. A week later she called me back into her office to tell me “Well, you know your own body better than anybody. You have Celiac Disease”

I was almost ecstatic at that moment. Finally, an answer!!! Everything made sense and I could finally move on and get better. And I also felt validated for the first time in years. I wasn’t crazy. Something really was wrong with my body and I figured it out all on my own. What a relief. And I wasn’t going to die. I could fix myself. Right? This was going to be ok.

Well, I never knew how hard or far reaching that process would be. Celiac disease by “definition” is a digestive condition triggered by consumption of the protein gluten, which is primarily found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley, malt, rye or oats. People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients. Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment.” And this definition only scratches the surface.

People always say “Oh, well you just can’t eat bread or pizza right?” Wow! If that were all I had to worry about I would be walking on cloud 9. GLUTEN IS EVERYWHERE. It’s the glue that holds food together so it’s in 75% off all processed foods. Anything with a label in a package is at risk of having gluten. Fast food, restaurants…danger zones. Comfort foods…not so comforting anymore. The only treatment for Celiac disease is to NEVER eat gluten again. Not an ounce. Not a crumb. It takes 5 years on a gluten free diet to heal you enough to be at the same percentage of health risks as the average person. Every time you accidentally consume gluten you start all over again. Literally if my little boy has eaten a cracker I can’t kiss him. Because that tiny crumb on his mouth can send my intestines into a spiral. My body starts to attack itself.

Once I started doing research I had a lot of anger. I found out that one of the most common symptoms in women with Celiac is infertility. If I had known about the Celiac prior and had been treating myself I may not have had a miscarriage. And we would have been saved from many years of heartache. One study conducted by physicians at Thomas Jefferson University Hospital in Philadelphia found that the rate of recurrent spontaneous abortion (RSAB) and infertility in celiac disease patients is at least four times higher than the general population. They suggested that patients who experience unexplained infertility or RSAB should be screened for celiac. So why was I never screened? Why are most women never screened?

Celiac is a very frustrating disease to have. It’s hard to find support from your friends and family and most strangers look at you like you’re crazy and even doctors disregard the symptoms. Because most of the damage occurs inside your body, nobody ever really sees it. They don’t understand that my intolerance to gluten is just as severe as a peanut allergy. The difference is my disease is a slow killer while a typical food allergy can be immediately fatal. Most people when they find out I’m on a gluten free diet (btw, the use of the word diet is the part that triggers people) think I must be one of those “crazy health food nuts.” And that I’m on some kind of weight loss diet. Believe me, nobody with Celiac would ever make the choice to have it. And many of us never lose weight. Actually it’s often the opposite.

It’s hard. It’s hard to not be able to go through a fast food line because there is nothing safe to eat. It’s hard to not be able to just go out to a restaurant whenever you feel like it. Or to go to a friend’s house for dinner because you know their kitchen and ingredients aren’t safe. It’s hard when your child sweetly offers you a bite of his cookie to not be able to take it. It’s hard and it’s at times very lonely.

Living with Celiac is both a curse and a blessing. It’s not something I would choose. But it has changed me in so many ways. I have always loved food and once had a dream of culinary school. Having Celiac has really propelled my skills. I have found a way to replicate most of my favorite foods that were on the “no” list in a safe way to eat. I have done months of research to find restaurants and food brands that do cater to gluten free lifestyles. It’s still exciting when I pick up a box and see those two beautiful words…gluten free!! It almost makes me giggly. I think about everything that I eat which is exhausting at times but really makes me enjoy every meal. I eat with purpose. Nothing is mindless anymore.

And there is also this truth, this shame. There have been setbacks along the way and I even refused to do the diet during several difficult periods of stress.. Things that were going wrong in my personal life made me turn to food and my health didn’t matter to me. My marriage suffered from all the years of stress and my craziness. My husband and I even separated. We were talking divorce. We had told our son. It felt like my life was over. Why did I care about what I put in my body?

And then something miraculous happened that made me care again. At the most insane time I found out that I was pregnant again. I couldn’t even believe it at first. And I’ve never been so afraid in my life. Afraid for the life of this unborn child. Would he/she make it? Would I lose another baby? What would my husband say? Would we be able to be a family again? What was I going to do?

I was going to focus and do things I knew I could control. I immediately went back strictly on my diet. I made sure everything I put in my body could not hard harm this baby. I ate right. And I started to try to save my marriage. Not just for my children. But for myself. He is the love of my life and I never treated him that way. I didn’t realize everything I had until he wasn’t here. I wanted him back more than I’ve ever wanted anything. Even another baby. I prayed like I’ve never prayed before. Every day, all day. Specific prayers. Prayers over him. Over our marriage. Over our children.

Skip to now. We are a family again. I have my husband, my love back. And we have a beautiful baby girl. She has made us all complete. My son adores her. We all do. We prayed and we worked on ourselves and our relationship. We both are better parents, better people, better lovers. This is for real. This is for always. And now, we are all on this journey of healing together.

We now believe my son may have Celiac as well. We had him tested and are awaiting the results. In the meantime, we have turned this into a gluten free household. And my husband who was skeptical for so long has agreed to do this with us. He is giving up the bread and cookies that he has loved so deeply. He loves us more.

The moral of my story? Don’t give up on yourself. You are the best doctor you will ever find. You know your body. If you think something is wrong find out what it is. If your doctor won’t listen and you really know in your heart that he/she is wrong, find another doctor. And another. And another until you get answers. Never let anyone make you feel that you are out of your mind. This is the only body and life you have. Take care of it. Don’t waste years suffering like I and thousands of patients have done.

I finally feel that I really can do this. And each day I am learning new things, trying new methods. I’ve just recently stumbled upon Paleo and will be giving that a little try. On my journey I want to share with you everything I have learned. From recipes that are delicious gluten free or not, to products that I’ve tried, restaurants that I’ve had success with and a little dose of just plain old me from time to time. I’m excited for this journey and hope you will take it with me.

What’s your story?