Happy New Year, everyone! Thank goodness 2013 is over, because this past year has been quite challenging, to say the least. But with the new year comes a new way of life, because I’ve decided to go gluten free.
To those who know me outside of the blog, you’ll remember that in the last 5 years I’ve been dealing with one setback or another. It may be related in part to my gastric bypass revision to a highly malabsorptive configuration, which in and of itself has it’s own set of challenges. I knew going in I’d have to be really conscientious about protein intake, taking supplemental vitamins and calcium every single day.
My hospital stay in 2011 was directly related with my trying to “diet” after my surgery, because I hadn’t been satisfied with the weight loss so far. Because of depleted protein stores, my whole body went into metabolic collapse, and compounded with a hospital acquired infection that gave me sepsis, well you all know how that story ends.
At my lowest weight after my hospital stay (195 lbs) I looked extremely sickly, was extremely pale, had all of my hair falling out, and my teeth were so brittle that they broke left and right, and I finally got most of them pulled and got dentures. I was happy to be under 200 lbs, but in my case I was weak, and still had a long way to go to be fully recovered. Ever since then, I’ve eaten as normally as possible. No dieting, despite my packing on an extra 40 or 50 lbs, because I didn’t want a repeat of 2010/2011. I ate as much protein as possible, like 4 eggs at a time, or a 1 lb. steak in a sitting, etc.
But lately I’ve been feeling sick again. I’m dealing with an indescribable amount of inflammation and joint pain, I’ve been feeling weak, I’ve got sore spots on my tongue that mean it burns like hell when I eat or drink something with the least bit of acid in it (like ketchup, or orange juice, for example). Over the past few years, it has seemed like one medical crisis after another – we’d treat the problem, and in it’s place came two more. So now I have to swallow more pills than an old lady – everything from thyroid medication to painkillers to muscle relaxers to depression and anxiety drugs to medicine for neuropathic pain to sleep medicine for insomnia.
I’ve believed for years that all of this is connected to something that is autoimmune, but I’ve never been able to pinpoint it to one particular thing, and neither have my doctors. And usually my labs are good (not counting the super-low Vitamin D levels that are darn near impossible for me to get the values to a normal level. So for these god knows how many years, I’ve been treating the symptoms rather than the underlying disease. I don’t how, but somehow when I was researching the anomalies in my labs (high Alkaline phosphatase, low Vitamin D, low calcium, low iron, low total protein and albumin, a clotting factor abnormality (in my case, Factor V Leiden)) and I came across the NIH website on Celiac disease. Not only do my lab results almost mirror the markers attributed to Celiac disease, but all these disease processes I’ve been struggling with all these years (abdominal pain and issues, lactose intolerance, bruising easily, depression and anxiety, fatigue, hair loss, a rash that just won’t go away, mouth ulcers, infertility, joint pain, and peripheral neuropathy (which I’ve never understood why I had it, since it’s most closely related to being a side effect of diabetes, which I have never had). Everything just clicked in place, and now it all makes sense. Maybe the reason I’m having so much trouble keeping my protein and vitamin levels up have absolutely nothing to do with me and maybe everything to do with this underlying disease process that on top of surgery-induced malabsorption, is further malabsorbed because the intestinal villi are damaged to the point where I absorb almost nothing, no matter how many supplements I take.
My primary care doctor seems to agree with me. At least as for as ordering the lab tests, and getting me in touch with a gastroenterologist that can do an endoscopic intestinal biopsy to confirm the diagnosis. Or I can go to the dermatologist and have them biopsy the rash (which looks suspiciously very much like dermatitis herpetiformis (a rash that is only present in those with Celiac disease). I’m still waiting for answers. I had the blood drawn Monday to check for antibodies that show how my body reacts to gluten. If that is positive (and sometimes it doesn’t show up on the blood screening, even if you do have Celiac diease), at least that will give me answers. I’d much rather deal with the underlying disease head on (and one that can in almost all cases be managed by a gluten free diet), than continuing to treat the symptoms by throwing drugs, drugs and more drugs at the problems.
I’ve decided that, even if either the blood or biopsy tests come back as negative, I’m going to adopt a gluten free diet. No matter what, it can’t hurt and it can only help. And truthfully? I’m willing to try anything to keep myself from the road of malnutrition and all its ugly side effects I had in 2010/2011. I’ve been told to keep eating gluten throughout the testing and diagnosing period, and it’s been tough because I want to hurry up and get better. So expect (hopefully within the next couple weeks) that many of my posts here may be trying to navigate my way in a world that has gluten everywhere, even in hidden sources. In the meantime, I’ll be posting some dishes I’ve made over the past year or so, that I’m dying to talk about. It’s great being back. 🙂