Some of you probably remember me from my rantings of being on the God-forsaken gluten-free diet. You may also remember that I was having a lot of trouble coping. Well, I'm off the diet. Here's the story.
First, I have a number of autoimmune diseases. The worst one is Primary Sclerosing Cholangitis, which, my doc tells me, will likely require me to have a liver transplant 10-12 years after diagnosis (which, by the way was in 2007). After a 6 month depression trying to deal with that diagnosis (I'm not going to go into all the statistics and crap I read about because it's depressing), I decided to ignore it and live my life like I never heard the words, "primary sclerosing cholangitis."
This past January, a routine biopsy (endoscopy) for Crohns discovered crypt hyperplasia, blunted villi and other stuff indicative of celiac. Blood tests were done at my insistence, with the only "mild positive" result being the IgG Gliadin. I think I was just a few points above the upper limit. Everything else was negative. Doc "strongly recommended" going on the gluten-free diet and directed me to a dietician who has celiac himself.
Due to my other autoimmune issues, I have a lot of blood tests and other diagnostic tests. They discovered inflamed lymph nodes in my abdomen that they are keeping tabs on. With this information, and the fact that villi *could* be blunted due to other conditions like soy or dairy intolerance, lymphoma, intestinal cancer, and a few bacterial infections, I wasn't wholly convinced that I actually HAD celiac. In fact, I realize now, I was in FULL DENIAL of it. Even when discussing it with people, I would say, "I've been diagnosed with celiac" not "I have celiac." Unfortunately, the ONLY way to rule out celiac was to go on the diet and then redo the endoscopy.
It took a little cajoling to get my doc to do a follow-up endoscopy. At this point, my depression had gotten so bad I went on prozac to try to control it. The ONLY REASON I was depressed was because of the diet, which I LOATHED, and made note of here on more than one occasion.
The endoscopy was the Thursday before Christmas. Friday, I had my first gluten-filled meal and ate it with much enthusiasm. Those four days after the endoscopy were pure bliss. No worries about what was going into my mouth or what they had been in contact with. It. Was. Awesome. Then, Tuesday, I received the call from the nurse that changed everything. There was NO note of blunted villi. The duodenal biopsies (he only took 2) came back NORMAL. All I can say was that I felt like I had been shot just as I was making flight toward freedom. I tried to rationalize that maybe he didn't get the right spots. I mean, he only took TWO biopsies. He could have MISSED the area. Don't they say that all the time - that it's a crapshoot on whether you'll find the blunted villi??? But I KNEW what it meant. It meant that the 9 months I spent on the diet healed my villi, and the blunting was, indeed, due to gluten. I was (and still am) devastated.
For 2 days, I cried. I debated whether it was worth living. I couldn't go back to my gluten-free prison again. Couldn't do it. The mere thought made me want to vomit. I had visions of escaping this life. I couldn't decide whether it was better to live a short happy life where I'm essentially killing myself, OR to live a long life filled with bitterness and misery and wishing I could kill myself. Because, I'll be honest, I'm not sure it is possible for me to be happy on a gluten-free diet. I have suffered NOT ONE ill consequence from going off the diet. NOT. ONE. Additionally, I never tangibly benefited from the diet either. I didn't get more energy. I didn't feel any better. And, if anything, I feel better after going OFF the diet. Mainly, because the stress of it is gone.
And, really, it's not just the diet. It's what the diet represents. I KNOW my health is precarious at best. After the liver disease diagnosis, I had to dig myself out of the trenches and DECIDE to IGNORE it. I could live a happy life pretending that I wasn't sick because I didn't FEEL SICK. The gluten-free diet reminds me EVERY DAY that I'm sick. EVERY DAY, several times a day, I have to think about what's in my food, what it came in contact with, and will it make me sick. Every day, every time I eat, every time I see someone else eat, every time I see a commercial, pass by a restaurant or just get hungry, I am reminded that I AM SICK and I WORRY and STRESS and HATE IT. I cannot live my life like that. I can't live my life in constant worry about my future. Waiting for the other shoe to drop. Waiting for more bad news.
I don't know if I can go back to that prison. I know I'm killing myself by eating gluten, but I'm not sure I care. I KNOW people will bring up my kids, but it's no good if I'm doing what's physically responsible, and then turning into a shell of a person who is emotionally unavailable as a result of it. I don't want to live my life dependent on an antidepressant merely because I can't handle being on a gluten-free diet.
I NEVER imagined myself being in this position. I Never understood addiction. I could not comprehend how someone would choose drugs, alcohol, or whatever the addiction is, over their friends, family, children, even their own life. Yet, here I am, making the same damn choice without the excuse of a physical or chemical addiction. I don't know what to say for myself. There is no defense. It really doesn't make any sense especially considering how much I've been fighting to maintain the health of my liver and my overall physical health. I took up running to increase my chances of putting off a transplant. Yet, a dinner roll has managed to undermine it all. It has a hold on me greater than the value of my own life.
I don't know why I'm even writing any of this. I know exactly what you all are going to say. But I can't say it will matter. All I can say right now is that I have decided to not make a decision right now. Which means, I'm off the diet indefinitely. I'm living for today. And that may kill me tomorrow. But tomorrow isn't guaranteed, is it?
I talked my doc into giving me another endoscopy. He wishes that I had some level of better health as a result of the diet, and thinks there's a possibility of it being refractory celiac sprue. We spent a lot of time discussing my mental and emotional issues pertaining to this lifestyle, and barring any overwhelming evidence to the contrary, I'm planning to go off the diet. He is aware of my decision and feels bad that I haven't seen any benefits from it. My quality of life has decreased so much as a result of this, and I don't want to continue living like this. I hate that I've had to resort to taking Prozac in order to cope. Unfortunately, it didn't work. Instead of making me feel better, it killed any positive emotions that remained. I felt like an emotional zombie. I lost any desire to care about pretty much anything and motivation was at an all time low. I'm off of it now, and feel LOTS better, but the thorn in my side remains. The holidays don't help in any way, shape, or form.
I remain unconvinced that I even HAVE celiac disease. No one has been able to rule out any other possibility for the blunted villi. Additionally, I just read something that said that elevated IgG gliadin can be found in people without celiac, but with inflammatory bowel disease.
My endoscopy is December 21st. I should know results within 72 hours. If the villi are the same or worse, I think it's safe to assume that the gluten-free diet does nothing for me. If they are better.... well, I'll just have to cross that bridge when I get to it. I can't say that I'll remain on the diet or not. My heart isn't in it.
Actually had someone write on my wall that they don't believe in all or nothing and that you should do everything in moderation. That is, eating gluten in moderation should be fine. She also implied that there is a celiac DEBATE in that some are passionate in their belief that all gluten must be eliminated, but that she believes that everything in moderation is a good motto. Also said that medical science is a crazy thing and not everyone agrees on this. Did I miss a recent study because I was fairly certain that there is NO debate on this at all.
She WAS trying to be supportive because I posted that I was sick of this diet and ready to do a day or two long gluten binge-fest. I think this was her way of being supportive of that decision. But STILL! You can be supportive without using an argument that holds some truth! Damn.
I can't freakin' stand this diet. I hate it. And I feel like acting like my 7-year-old and having a magnificent temper tantrum filled with stomping, crying, screaming, and door slamming. I figured that by the 6 month mark, I'd be more used to it, but instead, I have an even greater desire to just say, "Eff it. I'm going to eat that damn dinner roll," which I'd totally have to go out of my way for since the whole house is gluten-free.
I'm flippin' miserable. I fantasize about my next endoscopy showing no change to the villi, and finding that this whole year was just a bad nightmare of a wrong diagnosis. I think about all the things I would eat if that fantasy came true. What would I start with? Would I be able to stop myself from binging to the point of sickness?
Someone on FB posed the question about what you would do if this was your last day on earth and my second thought (after family) was FOOD and what I'd eat. (ok, maybe it was my first thought, though I don't know). And, NONE of it was gluten-free. Every day I feel the limitations of this stupid diet. Do I feel better? NO! And that might be what makes it so damn hard. I was asymptomatic when diagnosed (barring the villi). The fatigue I had is still here, and I just blame it on age and having 3 small kids.
Things just aren't getting better. I truly thought I'd get over it by now. But I see these happy gluten-free people and it just makes me more angry. Because I'm NOT happy and I don't foresee myself ever being happy about this diet.
Am I the only pissed as hell person out there? I'm sick of being so bitter about it, but I just cannot get my mind to stop thinking about the things I cannot have. Some days, I think about the possibility of getting accidentally glutened and actually being aware of it almost immediately. I think about how if that did happen, I think I just might binge "to make it worth my while."
Eh, maybe this rant will make me feel better. I just needed to get it out there. I'm just so sick of it. Sick of it all.
DH's boss really wants to show his appreciation by hosting a dinner at his home for his employees and their families. I do not want to go. I think it is very thoughtful and kind of him to want to make a special gluten-free meal for everyone just so I can come, but, honestly, I'm going to be freakin' paranoid the entire time. He's come up with a gluten free meal idea. He wants to make chicken parmesan, but the chicken will be grilled (not breaded), the tomato sauce homemade, and have it served over quinoa. Um, am I the only one who thinks this meal sounds pretty awful?? Who makes chicken parm unbreaded and over quinoa??? I don't want him serving a meal that no one will like (including me) just to make it gluten free. Plus, there's so many other BETTER choices out there!! Additionally, despite the meal ingredients being gluten free, it's the cross contamination that's freaking me out. I can't imagine I will enjoy myself because I'll be spending the whole time worried about whether I'm getting glutened, and watching their every move around the food. Just doesn't sound like a good time to me AT ALL.
My friend says I'm not being supportive and my DH isn't all that happy with the idea of me staying home, but it's not HIS HEALTH on the line. KWIM? I think it's admirable that someone would want to learn and go to such lengths to be able to include me, but I really don't think people really "get" the risk of cross contamination: things like condiments and butter or pasta strainers. There's only a very few people who I would trust to serve me, but they've gone through great lengths to learn about celiac and cross contamination.
I KNOW some of you are going to say that I should just bring a meal of my own. But I'm just not emotionally "there" yet. I just started the diet in March, and I'm still at a point of feeling very limited and "without." I hate bringing food of my own and watching others eat my favorite foods that I can no longer have. I have avoided picnics all summer because of this. It's just not worth the bad mood it will put me in for days. And the binging that will likely follow. I'd much rather just not go and focus on what I CAN have instead of having my nose rubbed in what I CANNOT have. For me, it's very isolating having to bring my own meal to something like that.
I've also heard the theory that it's really about socializing and not the food. But it's NEVER been that way for me. It's ALWAYS about the food. It was a running joke in my office about how I'd push old ladies, children, and pregnant women out of my way in order to be the first in line at a buffet. I freakin' LOVE that food!!! So, maybe to other's it's about socializing, but not for me. Socializing is secondary to enjoying the good eats.
I realize I have a long way to go in my attitude toward food. But, right now, this is where I am and I feel like I need to honor my limitations and work within them for now.
So, what am I to do. The guy is sort of desperate to have me there (for reasons I don't understand). He just wants to include everyone. But I just don't trust eating at people's houses, especially those I don't know well. And DH is obviously not pleased with the idea of me staying home. Why don't they get it??