I detailed last year how I had to have my gallbladder removed. That operation was supposed to be the beginning of the end of my abdominal pain, my digestive issues…and it was only the beginning.
I wish I could sit here and say that I am relieved to have a diagnosis, that now I am okay, now that I know what was truly the matter.
Readers, I am not okay. Right now, I am not okay. I am reeling. I am overwhelmed at just how many foods have gluten in them. I am beyond sad that while many gluten-free substitutes exist, I will not be able to have my stepmother’s cream-chipped beef ever again. I can’t have a bowl of Cream of Wheat on a cold winter morning. All of this in itself is a lot to deal with, and I fluctuate between ‘somewhat okay’ and what seems to be ‘grief’. I could deal with all of that on its own. The most prevalent emotion at the surface is seething, boiling anger.
When I went to the hospital in June 2012 with excruciating abdominal pain, a CT scan showed gallstones. The hospital’s solution was to take it out. During my stay, the Mister had inquired about going to the next closest hospital (a ‘competitor’ of the one I was at), and he was given the explicit impression that this was not an option. Being as doped out on morphine, and later Dilaudid, as I was, he was my best advocate. We were gobsmacked with the news that I was to have my gallbladder removed on June 25th, 2012…the day after my 29th birthday. I spent my birthday in the hospital. I was told by the doctor that I could go back to a normal diet in a few weeks after my surgery. I was told that I could expect a month or two of wonky digestion as my body learned to digest without the assistance of my gallbladder, but that it would even out. I was told that the surgery should solve the immediate issue of gallstones, and the digestive issues I was having.
They were either ignorant or flat-out wrong, and as a result of my trust in what they told me, I would spend the next 13 months in a living hell.
I became a slave to the toilet. I would thank god every time we ate out as a family…because the kids were a sure bet that we’d eat and then get the heck out of there to go home. I noticed that after eating, I would become slightly bloated. Barely noticeable in the beginning, as I was still overweight at that time, but as the pounds came off, the change became more visible. My stomach would cramp, and I’d get chills akin to those I had as a teenager when I had a particularly nasty bout with the flu. The pain was bearable at first, but as the months went by, it would get progressively worse. I began to mentally note what I had eaten if it was particularly bad.
A pattern began to develop. My symptoms were much worse after a meal that had pasta or bread. I began to suspect a gluten intolerance, so I began to avoid gluten. My symptoms…the worst ones at least, began to subside somewhat. Every so often I’d indulge in pasta, or bread, etc, thinking “Okay, I know I’m gonna pay for it later, but that’s okay, this is a really good dish and I want it.” And boy, would I pay for it.
My brain would, I don’t know how to explain it, it’s like all my thoughts were travelling through molasses. I chalked it up, prior to my ADHD diagnosis, to being due to sleep deprivation, as my son was not yet sleeping through the night. My depression worsened. In October, my doctor upped my antidepressants and diagnosed me with ADHD and put me on medication for that as well. Both the depression and the mental fogs were eased, though neither completely went away.
I was so exhausted, all the time. I thought that, again, it was sleep deprivation. I would wake up in pain so often that I became used to it, and I assigned that symptom to a physical manifestation of my depression. After eating pasta or bread, I’d feel even more lethargic than usual. What I didn’t know at the time was that while I was avoiding foods that obviously had gluten in them, there are so many foods with gluten in them.
However, a sneaking suspicion that something was wrong drove me to do some research about healthy diet post-gallbladder removal. What I found shocked me. Even some veggies and fruits were not good for me to have. But most appalling of all was how gravely wrong the information I had been given really was. After a gallbladder removal, the patient can never just ‘go back to normal diet’. There are things to avoid, things to have in moderation, and things that are okay. I Googled “developing gluten intolerance after gallbladder removal”. The amount of hits really threw me for a loop. People who’d had what they thought was just trouble digesting products with gluten becoming a huge issue. People who were confused, frustrated, angry…people like me. More than that, I found out that my gallbladder removal was completely unnecessary. They could have removed the gallstones. Mine were bad and fairly numerous, but it could have been done.
On July 23rd, the Mister brought home hoagies (subs, for people outside of South Jersey) for dinner. I barely ate mine, a foot-long delicious Italian hoagie. I ate less than a quarter of it. The next day, I had nearly the rest of it for dinner. My friend came over later that evening, and I had a dull pressure where my gallbladder should have been. It felt like someone was inflating a balloon inside of me…and then it began to hurt. It hurt in the exact same way, with nearly the exact same incapacitating pain that had resulted in the removal of my gallbladder exactly 13 months before.
I went to the hospital (the same one that had done my surgery), and after listening to my symptoms, decided she was going to run a CT scan on…wait for it…my gallbladder. I snorted.
“Good luck finding it.” I said. She raised an eyebrow, and I informed her that it had been removed…at the same hospital, exactly 13 months prior. She thought for a moment and after hearing my response to her asking me what I had eaten, told me she was going to run a celiac panel on my blood and do a CT scan of my intestinal tract.
When the scan came back, she said it confirmed what my blood told her. My large and small intestines showed up so bright with inflammation that they alone nearly ruined the image. My celiac panel came back positive.
“I’m not really too sure how to tell you, because while there’s worse things to have, this bites pretty badly, but you have celiac disease.”
I have to admit, I’d heard of celiac disease. I knew that people who had it couldn’t have gluten because it messed with their stomach. I didn’t know that it is an autoimmune disease. I didn’t know that even small amounts of gluten would trigger the body to attack the intestines and attempt to destroy them in an effort to rid the body of what the immune system sees as poison (the gluten). I didn’t know about the increased risk for various gastrointestinal issues if the disease was not treated. I didn’t know that the only successful treatment is adopting a completely gluten-free diet. I didn’t know that there is no cure, no surgery that will ease symptoms.
I didn’t know that while not as inherently ‘dangerous’ as, say, cancer, or many other diseases, celiac disease can still kill if it is untreated.
I didn’t know that having the gallbladder removed is one of the worst things that can be done to a celiac patient.
And I definitely did not know that with every bite of pasta, every bite of bread, every drizzle of soy sauce (yeah, it has gluten in it…who knew?), every single bite of any food containing gluten, I was telling my body to slowly destroy itself. The mental fogs, the exhaustion, the pain…oh god the pain…I didn’t know that they were signs that something was going on with my body.
Another problem that many celiacs have is with malabsorption. Because the gluten triggers the immune system to attack the intestines, the intestines get damaged and reduce the ability of the intestines to absorb nutrients from food.
So I have to wonder…how much of my weight loss was dietary change? How much was the Adderall’s doing? And just how much of that was because my body simply couldn’t draw in the nutrients it needed from the food I ate?
So yes. I am angry. I have been learning so much the past week. I have gone from a world where I didn’t really have to think about food other than “Is this healthy?”. Now I am in a world where my son can fling a noodle on my arm, and where before I’d simply eat the noodle, now I cannot. Even a small amount of gluten will tell my body to attack, even if I experience no symptoms. If I make the kids PBJ sandwiches, I have to wash my hands afterwards. I have to ask for a gluten-free menu when we go out, and above that, I must inform them that I have celiac disease, so that they know that I’m not just following a ‘fad’ diet, that I have a condition, and precautions need to be taken. I just hope that most servers are like I was, and take any food allergies as seriously as I did.
While I know in time I will be okay with this, right now I am still in shock. I have been gluten-free for a week now, and I have noticed some improvements. While my bathroom issues are still a little out of whack, I have noticed a good deal of ‘normalization’. My bloating has slowly gone down as this episode is brought under control. But in spite of all this, right now I am not okay. This sucks. The precautions I have to take are, to the pasta loving, wheat and grain loving part of me, stupid and ridiculous, and I hate them. I really, really hate them.
But to the part of me that just wants to be healthy, to have a ‘normal’ day where I’m not dashing for the bathroom, bloated, or in pain knows that the precautions that will hopefully soon become routine are not stupid, nor are they ridiculous. As the Mister says “Gluten is poison for you. It’s not stupid at all.”