My Story: Lucky, Lucky Me
This post was written in November 2010.
I am a very lucky person.
Six months ago, this past May, I started waking up with aches in my left hand and shoulder. I thought I must be sleeping in a weird postition, so I bought a new pillow, hoping it would help. Usually if you sleep in a weird position, it only happens once, and not 10 nights in a row, but I couldn’t think of what else would cause the mild pain which would clear up during the day and return every night.
About 2 weeks later, the pain began to spread to my neck and right shoulder and arm. Soon, each night I’d have stiffness in both hands, arms, shoulders, neck, and the upper part of my spine, and the pain intensified. I started having trouble moving my arms and hands while I slept and during the first few hours of the morning, but the pain would still dissipate a few hours after I woke up. Internet searches led me to think it was a pinched nerve or slipped disc. I didn’t remember injuring myself at the gym, but this seemed to be the only explanation that made sense. When the problem didn’t resolve, it was time to get a checkup.
I made my first appointment with a nurse practitioner who was recommended by many of my coworkers. (The last time I had been to a doctor was two years ago, when I had my gall bladder removed, and I didn’t like her, so I was looking for someone new.) The NP asked me all the general questions and had blood tests done for a dozen different issues, including Lyme disease and rheumatoid arthritis. I told her that in a couple days I’d be traveling to Canada for about a week, and she suggested that for about 5 days I take 800 milligrams of Advil three times a day, a total of 12 capsules a day (which is still less than what’s considered a “safe” limit). I never take medicine, so this freaked me out. But the pain was getting worse, and I was going to drive 500 miles, so I figured I might as well give it a shot.
While staying at my uncle’s house in Canada, the pain intensified even more. I could barely move at night. Turning in bed was almost impossible, as was actually getting up from it. Even lifting a couple ounces of bedsheet a few inches was excruciatingly painful. Though I was on a leisurely trip to visit family, I could barely sleep a couple hours each night, and would be up by 5 a.m., walking and stretching to help relieve the pain. The 12 Advil a day did nothing, though the pain was bearable during the day. In the last couple days of my trip, my feet started swelling, and I developed pain in my legs. A pinched nerve didn’t make sense anymore.
I drove home from Canada (a never-ending trip) on a Thursday, and by the time I got home that night I knew something was seriously wrong. I had pain all over my body, and my feet and fingers were swollen. The next day I managed to go get an x-ray of my neck and upper spine. I was told everything was normal. By that night, I was in in excruciating pain again, and I was, basically, becoming paralyzed. I decided that the next morning, Saturday, I would go to the emergency room, even though my next appointment with my NP was only a couple days later, and she’d have my blood test results by then.
They didn’t want to do much for me at the ER, but they did take some blood and found that the inflammation in my body was very high. They weren’t sure what to look for, but a lab tech decided to check for parvovirus, a fairly harmless virus that children often get as flu-like symptoms and a rash, but which manifests as joint pain in adults and could last for quiet some time. There is not much to do but wait out the virus. I was sent home with a prednisone prescription (another medication I was freaked out about) and with the idea that I probably have this virus, and all I needed to confirm it was a positive blood test, the result of which would not be available for several days.
I went to my NP appointment on Monday, feeling much better from the medicine, which worked like a charm. (I was able to sleep for the first time in a month!) She said that most of my blood work looked fine (no rheumatoid arthritis or Lyme) but that my B12 was very low and I had almost no Vitamin D in my body. Additionally, my ANA blood test, often associated with lupus, came back positive, but that it didn’t mean I had lupus. In any case, I was on medication for the pain and inflammation, and we were waiting for the parvo results.
When the hospital finally had my results several days later, they informed me by telephone that my parvo test came back positive. Hurray! I just had a simple virus! I didn’t have lupus! But to get the results to my NP, I had to go to the hospital, sign a release form, and have them fax the results to the NP’s office, who then faxed it to her because she was out of town. She called me a few days later, saying that the results showed that I didn’t have the virus currently, but that it was something which I had in the past. She had called Infectious Disease and was told that my symptoms were consistent with parvo, and that they could have even been the cause of a false positive ANA. We decided that I would be on this medicine for another 10 days, and if the pain came back after that, I would be prescribed something less potent than the prednisone (which was giving me unwanted side effects like jitteriness, a puffy face, and made my skin feel weird in the sun) until I could see a rheumatologist.
I took prednisone for 3 weeks and was so happy to be off of it. However, as soon as I stopped taking it, I started getting some mild pain in my hands, and, over the course of 10 days, it started spreading and intensifying, as had happened the last time. Well, I just had to wait out the virus, I thought, and, though I really dreaded taking medication again, it was getting bad enough that I decided to take the dosage of the naproxen that was prescribed to me, which didn’t help much.
After about 3 or 4 days of naproxen, I woke up in the middle of the night with dizziness, abdominal pain, and nausea. I was able to wake my sister, who came with me to the bathroom. I threw up and then fainted in the bathroom. I came to, got up off the bathroom floor, and wanted to throw up again, despite my sister telling me to go lie down. I lifted my head, and passed out again. I opened my eyes a few moments later to find that my sister had dragged me into the next room, where I was lying on the tile with a pillow under my head. Every time I would lift my head, I would feel like I was going to faint again. My family called 911, and I was taken by ambulance to the emergency room.
When I arrived, they took my blood pressure (which was extremely low), asked me about my symptoms (I told them that I had parvo and was taking medication for it), and took all the necessary tests. I was told I had acute pancreatitis. Just a few days’ worth of medicine almost killed me. (And this is why, friends, you should avoid medications as much as possible.) To be treated, I had to be admitted into the hospital for a few days. I would be hooked up to an I.V. and wouldn’t be allowed to eat or drink until the situation resolved. They took a C.T. scan and ultrasound of my abdomen, and I was put in a room all to myself. I was visited by my family and friends (and actually spent many funny hours with Laura, Grace, Tina, and Zena). My abdominal pain resolved within the first few hours at the hospital, and the doctors were shocked to see that in 24 hours my pancreatic enzymes were back to normal, when it usually takes 5 to 7 days for them to settle.
The doctors gave me the results of the imaging tests: some fluid in my abdominal cavity and mildly enlarged small intestine, liver, and spleen. What? How did I get those? Enlarged liver? I don’t drink! I live a healthy lifestyle! How in the world do you get fluid in your abdomen? I don’t even have any significant digestive issues! Though I was surprised by this information, I half dismissed it because 1) each of the doctors who came to visit me said something different, 2) they didn’t seem concerned by it, and 3) even though I was at a good hospital, the doctors seemed sort of incompetent, and barely asked me any questions that may have helped them figure out why I had these problems.
In any case, I spent 2.5 days at the hospital, not eating for the first day and a half, and then, because my pancreatic issue had resolved so quickly, allowed to eat, during the last 24 hours, liquids and then later certain solid foods. Also during those last 24 hours, I felt that my joint and muscle pain had lessened considerably, and I started wondering why. Was it because I was resting? No, that can’t be it. I’d spent many evenings and weekends resting during the past couple months, and I had pain and stiffness then anyway. They didn’t have me on any painkillers, yet my last morning at the hospital I was moving with more agility and less pain than I’d had in a week. Weird.
I was discharged in the afternoon, told to make an appointment with a gastroenterologist, and given a two-week eating plan for people with Chron’s or ulcertive colitis, two diseases for which I didn’t have symptoms. I was to limit my fruits and vegetables (which seemed ridiculous), to not have any seeds or nuts, and to eat breads and pastas made from refined flours, jellos and puddings, some soft chicken breast, eggs, and a handful of other things.
I came home from the hospital around 2 in the afternoon, my muscles and joints still feeling considerably better than they had a few days ago. I showered the hospital off of me, put on some comfortable clothes, ate something, and prepared to stay home from work a few more days to rest up. Perhaps that would finally give this mysterious, unrelenting virus the boot. But by 6 in the evening, somehow, I was once again in excruciating pain, once again had swollen hands and feet, once again almost paralyzed.
And that’s how I spent the next the 6 days: swollen, in extreme pain, practically paralyzed. I could not sleep and could barely move in bed or get out of it. I could not sit, stand, lie down, walk, or move in any way for more than a few minutes at a time, because each activity only made some part of me hurt more. I couldn’t get dressed by myself. I barely managed to shower on my own. I couldn’t go up and down stairs. I couldn’t squeeze a tube of toothpaste or take the cap off a water bottle. I would have to talk myself into standing up from a sitting position, because, every time I did, my legs felt like they were on fire. I spent almost every minute of those 6 days with an ice pack on my neck and upper spine and a couple on my hands, numbing some of the pain in those areas. I was not taking any kind of pain medication because I didn’t want to end up back in the hospital, I was more freaked out by medications now then ever before, and I knew they wouldn’t help much.
Why did I do “nothing” for 6 days? Well, I knew that I should probably go see a rheumatologist. I knew there was nothing to be done about the virus, but I figured that maybe I could get some tips on how to deal with the pain naturally, instead of using medication. Additionally, I’d never been to a rheumatologist, and was waiting for a referral for one. Also, on Day 3 of those 6 days, my father had a mild heart attack and had to have surgery a couple days later. (He’s fine now!) I decided to wait until he was okay, and then go to the doctor. So, for those days, while my family was busy with my dad (I couldn’t visit him in the hospital in my condition), my Aunt Lodie and my Aunt Layla took care of me, especially my Aunt Layla (who was visiting from California). They prepared my diet of bread, pasta, rice, chicken, egg, and ridiculously small amounts of vegetables and fruits. They helped me put my legs up on the couch and adjusted my pillows. And they kept me company. My Aunt Layla said she saw a documentary about someone who had similar joint and muscle pains as me, and that I should look into the condition he had. I told her that I didn’t think that’s what the problem was. I just had a virus that would pass.
On a Monday afternoon, I finally made it to the rheumatologist, Dr. W. She asked me some questions, and I told her I had parvo. She had those original ER blood-test results faxed to her, and told me I definitely did not have parvo. The “positive” results they had given me were for old antibodies, meaning, as my NP had said, it was something I had in the past and not something I hadcurrently. The unclear messages from the hospital and Infectious Disease made me mistakenly believe, for more than a month, that I had parvo.
So what did I have then? What was making me almost paralyzed? According to Dr. W, I probably had Crohn’s disease or ulcerative colitis, and that I would have to treat it with life-long medication. She gave me some recommendations for gastroenterologists, took some blood, and put me back on prednisone (a much lower dose than what I was taking a few weeks prior), which I had mixed feelings about taking again. On the one hand, I needed some relief, but, on the other, I was so disgusted by it and medication in general.
I went home not too pleased with the news that I might have one of these diseases, which often require surgery to remove parts of the digestive track and which would doom me to a lifetime of ingesting toxic chemicals. I was home on Tuesday and Wednesday, virtually pain-free because the medicine works quickly. I spent those two days researching the two diseases, even though I didn’t seem to have their symptoms. Each time I learned a gruesome fact about one, I prayed that I had the other. I did a quick search of my aunt’s suggestion, but didn’t follow through much, because Dr. W had been pretty confident in her pre-diagnosis. On Thursday I woke up feeling well enough to go to work, where they welcomed me after my 8-workday absence.
On Friday, I woke up with significant pain. What happened?! I had no pain the past few days! When I got to work, I left a message for Dr. W that I woke up with pain, asking if I should drop to the lower dose the next day as we had planned. When she called me back a half hour before my work day ended, she told me that she wants to get me started on 2 medications. I asked her how I could be prescribed drugs when I didn’t have a diagnosis yet, and she told me that these drugs are for a variety of conditions and that my lupus markers came back high and I should be on them. It was like receiving a phone call that said, “Well, you probably have lupus. Have a good weekend! Bye!” There was no mention of the Crohn’s or colitis, which she had seemed fairly confident in a few days earlier.
My good friend Gina and I frantically looked up the symptoms of lupus. Not only is it a tricky disease to diagnose, but I had almost none of the symptoms! And yet this doctor was ready to put me on serious medications! That’s when I began to lose trust in Dr. W.
When I got home, I quickly turned on the laptop, anxious to do some research. Because the doctor seemed to have forgotten about her original suggestions, and I didn’t feel they were right either, I dropped the idea of them altogether. I decided to do serious research on lupus and if it can be confused with my aunt’s suggestion: a problem with gluten, the protein found in wheat, rye, and barley.
And within an hour or so of reading, I was positive. I just knew, absolutely knew, I had some form of gluten intolerance. Everything suddenly made sense: the reason I was feeling better in the hospital is because I wasn’t eating. However, on the last morning there, they had me eat pancakes, which is what caused the painful paralysis that evening. It’s also why I had pain that very morning: I had eaten bread at work the day before. And I knew I would wake up with pain the next morning, because that day at work, before the “lupus” “diagnosis,” I had eaten a cheese sandwich and a muffin (considered “safe” by the ridiculous diet I was given at the hospital). And since that moment on the evening of August 27, 2010, I have not eaten a bite of anything that has gluten in it.
The Saturday morning I woke up with pain from Friday’s food, as I had expected. But because I was not going to eat any gluten on Saturday, I expected to wake up with little pain on Sunday, and that’s exactly what happened! By Monday, I had almost no pain! Of course, I was still on medication, but that’s the point: while eating gluten, I was still having pain despite taking medicine.
Basically (I’ll write another post with more details in the near future), if you have gluten intolerance, your body doesn’t recognize the gluten protein as food but as an invader, so your immune system attacks it. Eating gluten is like introducing large amounts of viruses into your body everyday, which your immune system is constantly attacking. The incessant immune response, the damage to the intestines that have turned into a battlefield between gluten and their antibodies, and the tiring of the adrenal glands that support the immune system in their fight result in every type of symptom imaginable and very serious health problems. The research I did that weekend explained that every one (every one!) of my symptoms, even things I hadn’t thought of before as symptoms, were a result of gluten intolerance:
- Joint and muscle pain. I was surprised to read that many gluten intolerant people had extreme pain, swelling, and stiffness similar to mine.
- Low Vitamins B12 and D, common amongst people with gluten intolerance, because they can’t absorb them.
- Very low iron. I’d been told a few years ago that I was anemic.
- Mildly enlarged liver, spleen, and small intestine. These looked fine 2 years ago when I had an ultrasound done for my gallstones, so they must have been recently affected.
- The fluid found in my abdomen.
- Acne. I’m almost 30, but haven’t had fully clear skin for 15 years. Sometimes it was better than others, but it was never totally clear. I had just figured that’s how my skin was. Soon after going off gluten, despite the fact that prednisone can cause acne, my skin cleared up.
- Hair loss. During the past few years, my hair has thinned considerably. This is probably due to the vitamin deficiencies.
- Lactose intolerance. Many with gluten intolerance have a sensitivity to dairy. I developed a moderate lactose intolerance about 12 years ago. Interestingly, this often goes away once gluten is removed from the diet.
- Gallstones. I had a few and had my gall bladder removed 2 years ago. If you have gallstones, there is a good chance you are gluten intolerant.
- Positive ANA and other lupus-related blood work. Eating gluten if you are gluten intolerant triggers autoimmune diseases. At my last testing 10 days ago, about 2 months after going gluten free, the ANA is negative and the other is dropping.
- Neurological symptoms. Thankfully, I hadn’t developed anything serious, but about 5 or 6 times during the months I was sick, I saw flashes of light out of the corner of my eye, as if it was a lightning bug or a tiny camera flash going off. I thought it was weird but didn’t think much of it, until I accidentally came across the story of someone who described the same symptom. They have not happened again since going gluten free.
And here’s why I’m lucky: I discovered I was sick. It’s estimated that 1 in 7 people (1 in 7 people!), and some estimate an even higher percentage (possibly 40% of people!), have gluten intolerance, but the vast majority don’t know it. That means you, dear reader, have a good chance of being gluten intolerant. Most gluten intolerant people do not have digestive complaints (I didn’t), and so do not make any kind of link between what they are eating and the health problems they may have. Furthermore, symptoms usually seem to be totally unrelated to each other and differ from person to person: one person may have fatigue, headaches, “clumsiness,” elevated liver enzymes, and infertility problems, while another has nerve pain, indigestion, rashes, depression, and dental issues. To make matters worse, most doctors know close to nothing about gluten intolerance or have a very narrow view of its symptoms (in fact, there are about 200 symptoms, and no two people have the exact same ones, though some are more common than others). They end up either dismissing patients’ complaints or diagnosing them with diseases they don’t have, giving them endless, poisonous drugs that treat the symptoms while the disease is ongoing. I’ve read stories in which people suggested to their doctors that they have a gluten problem, but the doctors refused to check for it because it didn’t fit into their flawed, limited definition of what the disease is.
Perhaps even worse are cases like mine: I had no visible or sensible symptoms. If you had asked me this past April, I would have told you I had no health problems. Sure, my iron was low and I wasn’t pleased with the state of my hair or skin, but those were minor complaints and nothing to be overly concerned about. I felt fine. As I look back at my symptoms, I’ve been sick for at least 12 years, and possibly my entire life! And I had no idea. I am blessed to have developed all that joint and muscle pain, because it made me aware I was ill. If I hadn’t, I would have assumed everything was fine, and then, possibly, a few years from now, “suddenly” develop a mysterious case of liver disease, or would have been put on a lifetime of unnecessary medication for some misdiagnosed disease.
There is no cure for gluten intolerance, but it’s very easy to treat, completely naturally and without medication. In short, gluten-intolerant people cannot eat gluten for the rest of their lives. That means I can’t eat anything that has wheat, rye, and barley (and a few other grains) in it. “Healthy” whole wheat bread is, basically, poison to me. The great news is, in most cases, simply by eliminating gluten and making a few other simple dietary changes, the body can totally heal itself, and often in as little a year. I’m hoping that not only will I return to “normal,” but some things will be even better than what I considered normal, and soon enough I’ll be in perfect health.
As I said, I’ll be posting soon about the mechanics of gluten intolerance and how to change your diet to heal yourself.
It’s time to make this very long story short. (I know, too late!) I visited Dr. W a couple days after my epiphany, and she came to her senses for a short time and said the information she had is not enough for a lupus diagnosis. I told her I might have celiac disease or some other form of gluten intolerance, and she said it was an okay theory, but seemed skeptical. She took the gluten-related blood tests, and while the celiac one was negative, I did have anti-gliadin antibodies (gliadin is the specific part of gluten the body attacks), but they were low enough to be considered “negative.” I was undaunted. I knew that the blood tests for gluten intolerance were not 100% accurate, and, at the time I took the test, I hadn’t had gluten in 100 hours and had been on an immunosuppressive drug for a week, both of which could have affected the results. In the end, the only sure way to know if you are gluten intolerant is to stop eating gluten for a lengthy period of time and see if your symptoms improve.
I visited Dr. P, a gastroenterologist, who I liked. She performed an endoscopy on me, during which she biopsied my small intestine for celiac disease, a specific kind of gluten intolerance that causes severe intestinal damage (again, more on this in a future post), and a few other other things. Everything came back negative or looking okay. We agreed that though I did not have celiac, I am probably gluten intolerant (which is basically the same thing), but that I wouldn’t be sure if my gluten-free diet is working until I am off the medicine, and that Dr. W should take me off of it soon. Dr. P said to continue what I was doing and visit her in 6 months.
Prednisone shuts down the adrenal glands, and so you must taper off of it slowly and under a doctor’s supervision. My repeated attempts to get Dr. W to contact me with a tapering-off schedule only resulted in messages through her receptionist telling me to stay on it longer. When I finally got to visit her in person, she was once again skeptical of my gluten-intolerance facts, though it was obvious she knew little about the topic because she had no real responses to my information. Though I had told her I wanted to be off all medication, she tried to convince me to start taking Plaquenil, a very serious drug which she claimed had no side effects. What kind of deception is that! At that point I lost all trust in her. When I asked her why I should take it, she said that I might have a form of arthritis, though I had few of its symptoms, and though it didn’t explain most of the symptoms I actually did have. Like many doctors, instead of looking for the underlying problem, she was trying to force me into a diagnosis that suited her, and, moreover, convince me to buy drugs to mask my symptoms, which she’ll probably get kickbacks for. And what kind of doctor claims a drug has no side effects?! If I was a person who didn’t know any better, I would have walked out of there with a wrong diagnosis and a lifetime of a dangerous, unnecessary medication!
I once again made my case, and she finally agreed to taper me off and had me do a blood test that day. The next day I got a phone call from one of her nurses, who told me that I was to stay on the prednisone longer (with no definite tapering-off schedule) because my blood test showed I still had mild inflammation. At that point, I had enough of Dr. W and the 6 weeks of medication. I immediately made an appointment with my NP, who I saw a few days later and who worked with me to safely taper off the medicine during a 3-week period and who is monitoring my progress, including my vitamin and iron deficiencies.
As of right now, I’ve been completely off medication for 2 weeks. When I dropped to a very low dose, a little bit of the pain, swelling, and stiffness did come back, and my skin broke out. However, it’s a tiny fraction of what I had experienced a few months ago, and it’s lessening day by day! Each day I have a little less pain and stiffness, and my skin is once again clearing up without any extra effort on my part. It’s going to take time for my body to return to normal, especially because the medicine complicated matters (and left me with a sort of puffy face that I am hoping will deflate soon). But I have no doubt that within a few weeks I’ll be completely pain free. I’m also hoping my hair will get thicker!
I’ll say it again: I’m a very lucky person. What I have experienced in the past 6 months of pain and paralysis, hospitalization, medications, doctor visits, diagnostic tests, confusing diagnoses from ill-informed “professionals,” and other stress is nothing compared to what some people suffer with everyday. Unlike most people who have this disease, I have discovered (with a little help from my aunt, who I believe God sent to visit from California especially at that time to give me some direction) what my problem actually is, and I can treat it easily and naturally. And who can ask for anything more than that?
Please, please, please take these points from this post:
- Gluten intolerance is very common. You or several people you know could have it, even if you feel fine. Spread the word about it, and you can save some lives, as mine has been saved.
- There are more than 300 symptoms related to gluten intolerance, and each person’s case and symptoms are different. Just because you don’t have the exact same symptoms I did, doesn’t mean you aren’t gluten intolerant.
- Do your research. I’ll be posting more information here soon. Learn all you can about this condition and any others you may have. Don’t just rely on mainstream medicine, which is heavily influenced by the drug companies, to have all your answers. You should read alternative theories as well.
- Doctors don’t know everything, especially when it comes to this condition. If you suspect that you have this problem, or any other, and the doctor doesn’t want to listen to you, find a doctor who will. You cannot blindly trust any medical professional.
- Most diseases are natural and thus can be treated naturally. The “easy” medication answer will only cause more problems than it solves.
And now, I’m looking forward to my 30th birthday next month, more than I have ever anticipated the day in the past. I will celebrate it with a gluten-free cake. :)
Update: One Year Later, May 2011
It’s been exactly one year since I woke up with mild pain in my shoulder and wrist, which, as you read above quickly became worse. I’ve been gluten-free for about 9 months, and I am 95% back to normal. I occasionally get fleeting pains in some of my joints. I think they haven’t yet completely healed yet from the severe inflammation that affected them. My hair has gotten thicker. My skin is generally better, though it sometimes breaks out. I’m experimenting with different foods to see what is affecting it. I haven’t had a blood test in a while, but I believe my iron levels are inching toward normal, because I haven’t heard my mother say I look “yellowish” in a long time.
Update: February 2012
I’m entirely pain-free and 99% back to normal. I have noticed though, that in some situations I can hear little pops and squeaks and other noises in my joints. I also feel like I can’t push them as hard as I used to, whether it’s running at the gym or holding too many grocery bags. They aren’t painful at all, but I think the months of severe inflammation left a little bit of damage. I’m going to include more meat with gelatinous bones in my diet to see if that helps repair any minor damage that might exist.
In other news, I’ve been almost entirely dairy-free for 6 months, and my skin has cleared up. If I do get a rare blemish, it’s minor and disappears relatively quickly. I do eat butter with no problem, though, because it has almost no casein, the dairy protein which was causing the problem.
Update: June 2013
I’ve been eating goat milk and sheep milk products for the past 4 months…with no ill effects on my skin! Hurrah!
Update: October 2013
I was recently reflecting on the hospitalization experience, and though I still think it’s very likely that the medication caused my pancreatitis, it is also possible that my body was at its breaking point, and the pancreatitis was more directly related to the destruction caused by the gluten than by the medication itself. Either way, gluten and medications are both extremely harmful.