Today, I woke up to the final results that would change everything I thought I knew about my life for the last 8 years: I was misdiagnosed with Celiac Disease. It’s been a long time coming, from the first moment this was questioned back in May, but the blood test 14 weeks later has solidified this truth that I still cannot wrap my mind around. It’s a story that will haunt me, like so many other aspects of my life have up to this point…
Eight years ago, I received an upper endoscopy. During this procedure, they found abnormalities in my duodenal bulb. A specimen was sent out for testing, with the following results: “partial villous blunting and intraepithelial lymphocytocis, compatible with celiac sprue.” A comment below stated, “Because the histologic features are not fully developed for sprue and correspond only to Marsh pattern l-ll, I would recommend additional serologic confirmatory testing for celiac sprue be considered, if clinically indicated.” Of course, I did not see the actual report of the biopsy until recently. I was told that my biopsy showed Celiac and that a blood test was needed to confirm this. A series of standard blood tests were ran shortly after, with the assumption that nothing significant was found. Three months later, I was sent for the Celiac Disease Antibody Panel.
Days passed, and I called to check on my blood results. I remember that moment, as I stood in the barn that Quentin and I were working in at the time. I was told that my tests had confirmed that I have Celiac Disease, and a follow-up appointment was made. I had never heard of the disease, and it took me quite a bit to research the unknown. What I learned made my heart sink. This was the end of all of the sandwiches, doughy sweets, and pizza I loved to eat! Little did I know, it would mean even more of a life change than I thought. I ate gluten up until the car ride to that follow-up appointment. My last meal was on the way: 2 fish fillet sandwiches from Wendy’s.
The appointment proved disappointing, to say the least. I was met with pamphlets, a couple of websites, and the simple instructions to “avoid gluten.” I was again told that the biopsy and blood test had confirmed my disease so I never once thought to question this diagnosis. I was sent along my way with so much to learn and my entire life changed.
Years followed, and I never really got better. In the midst of it all, I had tests and upper endoscopies. The tests always showed negative for Celiac, but this was to be expected if on a gluten free diet. My endoscopies, however, did not show me healing. I was instructed to continue with my gluten free diet and even told to “redouble efforts to exclude gluten from diet” by 2009. This is the point where our entire household (food, personal care products, cleaning products, pet supplies) were changed to gluten free. Our lives became even harder, as we struggled to feed everyone decent meals and find the products we needed that would not be a cross-contamination risk for me. The expense was outrageous, and it was impossible to attend social events because everything involved the food that I thought was making me so sick.
When the kids started school, we were faced with the challenges of cleaning them up afterward and packing lunches from our gluten free kitchen. There were many of their events that I sat out on or felt awkward packing my own food or just starving. Quentin and I had a gluten free wedding: the food, the cake, the alcohol. We did not want to risk me being exposed to something that would poison me on our special day. Our honeymoon, and then later, our vacations were all planned with safe restaurants in mind. We still had to pack food for many meals, and we were frustrated that our own hometown was not Celiac-friendly at all.
It became our way of life for 8 long years—Kayden’s entire life has known no different. I painstakingly learned the art of preparing “regular” meals with gluten free counterparts and became extra creative with the boys’ lunches and our traveling meals. More gluten free options arose, and I got skilled in scoping out new products and even expos for gluten free finds. Couponing helped, and so did menu planning. I made our life as normal as I could, but I always felt so guilty for having this disease. I was stressed out that I wasn’t getting better, and it was a constant worry of what would happen to my body as this disease took its toll. By the age of 24, my bone density was already on the low scale. I tried to get help for my endless list of seemingly unrelated symptoms, and I constantly got the same answer: You have Celiac Disease.
After putting the appointment off for a couple of years, I finally made my way back to my GI specialist at the beginning of May. I had stopped going, though I knew there was something seriously wrong. My weight was still dropping; I couldn’t maintain body temperature; and I constantly ached all over. These were only a few of the wide range of issues I had sucked up for so long and finally caved about seeking help for.
I sat in the GI’s office as he examined me and got quiet behind his desk. He looked up from his computer, and slowly asked me if my IGA levels had ever been raised. I told him I wouldn’t know, but that it was a different hospital that had diagnosed me. “Your case has always bothered me…” he began, and my head began to spin. He explained that he had never seen my tests from the other hospital. Basically, there was nothing he had ever read that actually showed I had Celiac Disease. I explained that the hospital had confirmed my biopsy results with a blood test. He told me that he needed to see those and began on what his thoughts were. I could have never made myself ready for this…
It came to one of two main issues: I could have Celiac Disease and be part of the only 5% out there that did not improve with a gluten free diet. My doctor explained that these people experience a variety of symptoms quite like mine. The outcome would not be favorable, as the autoimmune system is basically attacking your body nonstop. Immune suppressants are often used, along with other drugs to try to slow down the process. Or, I may not have Celiac Disease. I could have had something else wrong with me this entire time and been misdiagnosed while the real problem continued to grow. I was shaking, by this point. My doctor was looking me straight in the eyes and refusing to cut corners. This was where we stood. “I was diagnosed 8 YEARS ago. Are there people out there who are misdiagnosed with Celiac and go on thinking they have the disease for YEARS?!” The answer was yes. Unfortunately, those people are out there. Quentin and I left the office that day in shock, unable to wrap our minds around this position in our lives. One thing was for sure: We had to find those records!
That night, I did just that. Using an online medical service, I was able to find the test results. My eyes couldn’t leave the screen, as I read, re-read, and googled medical terms. This looked like a negative. Why did this look like a negative? That can’t be right. This isn’t happening!
Quentin ran the copied results to the GI first thing in the morning, and they called me soon after to confirm my fears: My results were always negative. I had countless questions, and the back-and-forth phone calls went on for most of the day. The truth was, I needed re-tested. But, in order to perform the test…My body had to be reacting to gluten to see if my levels rose like that of a Celiac. And, it wasn’t going to be a quick process. I was instructed to consume the amount of gluten equivalent to a slice of bread, every day for about 3 MONTHS! I was in horror. This thing that I had been told would kill me was now going to re-enter my system. Would I get sick? Would I recover afterwards? This could do permanent damage to my body, and I had to do it to confirm a disease I was told I had 8 years ago! I begged for alternative options. Could I take the test sooner? Was there any other way to do this? Another biopsy?
I could take the test as soon as a month, but living on a gluten free diet for 8 years could take the 3 months to show up in my system. There was also a genetic test to check if I carried either of the 2 genes associated with the disease, but a percentage of the population also carry those genes and may or may not ever acquire the disease. Basically, I would only get an answer from a negative result. And, the test was very expensive. This test could be done immediately, though, eliminating the need for the “gluten challenge.” A biopsy was not a good solution, as I was on a gluten free diet for so long. Also, the result of the other hospital’s biopsy may or may not have been Celiac Disease.
Quentin and I went back and forth on the genetic test. I didn’t want to cost us that money, but he wanted me to know as soon as possible. It was a chance to avoid all this, and he felt that I needed to take that chance. So, off I went to take the test the very next day. The thing was, I knew there was a chance I would not get answers. So, I began the “gluten challenge” that very same day to speed up this process…
My very first taste of gluten was a slice of bread. The truth? I hated it. My tastes had adjusted so much to the crumbly, dense, gluten free counterpart that this tasted sticky and weird. Also, I was sitting in my closet to consume it because I was trying to keep everything in the kitchen “clean” of gluten. I never told the kids what I was doing because I was so worried that the result would still be positive, and they would think this was just some diet that I was allowed to “cheat” on. Nor, did I really tell anyone else. My parents and some close family members knew. As for my “friends,” many did not even question how my GI appointment went…let alone know the struggle I was faced with day to day. I sat alone in that closet, scared to death at what harm I was inviting into my body. I had heard stories of Celiacs having seizures from gluten or getting cancer later on from the consumption, and I had no choice but to risk it all. Props to my mom and Quentin for being my rocks through this. Each of them kept up with how I was feeling and made a point to ask if there was a change. Oddly enough, I saw no difference. But, I held my breath every day as I secretly took the bites that were my poison days before.
The genetic testing came back positive. I just so happen to carry the HLA-DQ2 gene that is associated with Celiac. At any point in my life, I could have the active disease…or I may never get it. This result held no answers and just left me to realize that it was a possibility one way or another.
I took the first test around a month. I worried, not knowing what to make of my non-reaction to the “gluten challenge.” The test came back negative, and I was instructed to stick it out all the way until August. I was so frustrated. The entire summer was spent hiding, fearing, and waiting. I had very little support this entire time. My mom and Quentin made a point to be there for me during this mysterious time in my life, but the other family who knew what was happening were virtually silent on the subject. My friends seemed to avoid that I was sick, let alone make themselves available enough to know the story of this battle that was in front of me. I stayed silent myself, not wishing to spread misinformation on the seriousness of this disease but also feeling like no one cared to hear it.
Today, my GI’s office confirmed what I saw on my own computer screen. I do not have Celiac Disease. For 8 years, my life has been a lie. I have thrown away 8 years of experiences, money, and overall quality of life for a diagnosis that was patched onto me to bandage whatever has been making me so sick all of these years. I am angry and hurt. These are years that I will never get back, and I have to learn to live life all over again at 29 years old.
Cooking “normal” food will be a new skill I will be challenged to get used to, and I cannot imagine walking into a restaurant and eating like a “normal person.” I will finally have the chance to buy perfume again, and the selection of beauty products I will have available is overwhelming. My kids can pack peanut butter and jelly sandwiches in their lunch, from a loaf of bread that doesn’t have to be toasted first or cost $5-$6. I can kiss my husband when he comes in the door from work, without questioning what he’s eaten. I can lick an envelope and handle playdough. I have never taken my kids for ice cream or eaten cotton candy with them at the fair. I have never had my nails done. The list is endless, and I am seriously considering a bucket list.
While there is much to look forward to, the fact remains that I am still sick with something. My doctor is still behind me, making plans for another rheumatologist visit and endoscopy to try for more answers. We’re waiting till January to move forward, as the medical expenses for all of this have been insane. I don’t know how to feel about what I was told today so I sat down and handled it in the best way I know how: I wrote my story so I wouldn’t have to face the silence anymore…