Back in 1999, a recovered Fat Doug got a routine wellness exams with full blood panel. Everything was good, except for liver function. The marker enzymes were extremely high. I was only 37. This concerned my doctor and freaked me out just a little. He drilled me on alcohol consumption (zero) and Tylenol use (near zero). My liver results were indicative of liver disease. I got retested a few weeks later. Results were still above normal, but much lower than a few weeks earlier.
Like anybody facing a medical malady, you scour the web for hope it is nothing, or fear it is your worst nightmare coming true. I learned highly athletic people can have elevated liver function enzymes. Those same enzymes exist in your muscles too, and if you break down muscle tissue enough, you release these enzymes into the blood. I mentioned this to my doc on a follow-up visit. He looked into it a bit himself. After ruling out other potential causes, he kind of shrugged and said yeah, maybe you're training too hard. He wanted me to go two weeks with ZERO exercise and repeat the labs again. That didn't quite happen, lol.
Over the years, my liver function has been right at or above the normal threshold. I was healthy, fit, never had hepatitis and didn't drink. It was just my "normal" without a solid explanation.
In 2010, I had what I felt was a freak ankle fracture. Simple putting a foot down to catch my balance while riding resulted in double fracture. A complete assortment of hardware was needed to put my ankle back together again. After I was out of the cast and healed, I asked my doctor if a bone density scan would be worthwhile. He agreed. My spine and both hips were abnormally low, especially my spine. This freaked me out a lot, as I was about two full standard deviations below normal. I was many times more likely to break my back in a bike crash than my peers. I greatly curtailed bike racing after this. The stress worrying about life impacting injury just didn't make the thrill of winning races worth it anymore.
But why were my bones in such poor shape? I've been a life-long dairy consumer. I've been very active most of my life too. It was possible I could've been Vitamin D deficient. My doctor started testing for it and it never came in low. But long Michigan winters without supplementing with D could have caused low serum levels when I was younger. I was pretty much a pure cyclist at this point, and I was aware that elite cyclists have been known to have poor bone density. It is not well understood why. Lack of weight bearing activity was believed to be a factor.
In response to poor bone density, I started running. Running kind of sucked, especially on pavement. Even though I ran only an hour or so a week, I still managed to pull off a sub-18 minute 5km just before turning 50. But even after a few years with greatly increased weight bearing activity and taking all the right supplements, my bone density continued to decline. My hips started to plateau, but my spine continued to drop at nearly 2x the normal aging rate. Projecting the curve out, I was no more than about 3yrs from full blown osteoporosis.
My doctor said maybe it was time to go on a bisphosphonate drug. This class of drug is wicked scary shit. Women who stayed on it too long ended up with horrific femur fractures that wouldn't heal. The drug stops bone turn-over and thus changes the structure of bones. I really wanted nothing to do with that.
About a year ago, I wanted to get an second opinion on what's going on. I went to an orthopedic center, the same outfit that put my ankle together in 2010. They treat problems arising from osteoporosis, so they know a thing or two about it, but not necessarily secondary causes of osteoporosis. The physician assistant that saw me ordered up a whole bunch of labs that my primary care doctor never did. Things like thyroid, testosterone and a 24 hour urine calcium excretion test, among other things.
The hormones were ok. What stood out was how low my calcium excretion was. The PA surmised I was not excreting calcium because I was not absorbing calcium. He also noted my elevated liver function enzymes and asked if I had ever been tested for celiac disease. Huh? "No, I seem to tolerate gluten just fine," I said. He said it doesn't matter, he treats patients with extremely poor bone health that never knew they had celiac disease. One of the many symptoms of celiac disease is poor bone density because the small intestine fails to absorb vitamin D and calcium. People with celiac disease who consume gluten (bread, pasta, etc), also often have elevated liver function enzymes. In fact, celiac.org says testing for celiac is called for when there is no other explanation for elevated liver enzymes. The orthopedists doesn't treat secondary causes of poor bone health, so he sent me back to my primary care doctor.
Armed with this new info, I went back to my PCP. He basically scoffed at the whole idea, said of the orthopedist, "he's guessing." My doc wouldn't test me for celiac. He said if I really wanted to get treated, I should go see an endocrinologist. These are the guys that treat diabetes, among other things.
Well, this whole process got shelved when we bought a house in Durango and then this summer decided to put our NH house on the market. Once settled in Durango, I picked up where this left off in NH. I sought out a new family doctor. Super cool dude. Turns out everybody that lives in this town is an active outdoor person. Anyway, I mentioned some of the earlier lab results, the calcium excretion, liver function, poor bone density, and even having the DQ2.5 gene that is pretty much a prerequisite to having celiac disease (30% of whites have this gene, so pretty common). New doc said of course we'll check for celiac. I mainly wanted to rule this out so then I could decide if it was time to go on the bone meds.
The blood test came back literally off the chart positive! I didn't see that coming. A positive blood result is just the first step. Definitive diagnosis is determined with intestinal biopsy. Sounds scary, but it is just upper endoscopy where they take a few small samples of tissue while looking at things. You are sedated no more than 15 minutes. I had this done earlier this month. The gastroenterologist said yep, it all looks like celiac. I got the biopsy report back last week. It supports full-blown celiac disease. This explains so much now.
Interestingly, the nurse that prep'd me for the endoscopy told me her husband was not diagnosed with celiac disease until after multiple freak bone fractures. Like me, he did not have the usual GI symptoms that are prevalent when celiacs consume gluten.
So now some big changes. Eating my favorite Italian and Mexican dishes must come to screeching halt. Cathy and I do like to dine out on weekends. Road trips are going to get tricky too. No more grabbing a burrito or burger after the ride, hike or ski. At home changes will be more subtle because most of the things we buy are whole foods with no ingredient labels on them. But bread and pasta were staples. Cathy has dabbled with gluten free recipes, breads and pastas over the years. THEY ALL SUCK! I refuse to eat something that is a crappy substitute when there are other foods that fit the bill nicely. Thinking whole grain rice instead of pasta. Corn tortillas instead of bread.
The nurse practitioner at the gastro center said it can take up to two years for intestinal damage to heal after going on strict gluten free diet. There will be more labs at 3 and 6 months to see if the blood antigens come down, an early indication that diet is working. After that, there will be another endoscopy scheduled. Liver function will be monitored too. The good news is there was no pre-cancer, which celiacs are at much greater risk for. The biggest hope here is that as I heal, my bone density will start to reverse its death plunge and actually improve naturally. Will be at least 2-3yrs before I know this.
I think the take-away from this story is you must be your own health advocate. Research things yourself. Get second opinions. If you don't think you are being properly treated, try a different doctor. Everything has a cause. It is best to address the root cause of problems than just take a pill that addresses the symptoms. The human body is incredibly complex and there is more we don't understand about it than we do understand. It may take some work to get to the root of problems.
It will be interesting to see if I feel any different after I've been gluten free for a while. Most celiacs report feeling much healthier - ailments go away, more energy, sharper mind - after cutting gluten. But many celiacs are pretty sick too. Time will tell. Stay tuned...
2 comments:
it can be frustrating how closed minded some docs can be to things like gluten intolerance or, just a few years ago, lyme disease. You really do need to be your own advocate these days.
glad you've found a potential cause and a course of action! the worst thing is just not having any idea what's going on...
OK now I see the full history! Sounds familiar as I also did the endoscopy to confirm.
Celiac appears to be an interesting disease that manifests itself (or not) in many ways. My doctor told me that they believe 80% of Celiac positive people are actually un-diagnosed (like you or I would have been had not been tested). Those that have often do so because they have a serious issue (like pain, weight loss, etc. ).
Anyway, for me it does not seem serious enough at this point to go through the pain in the ass of going completely gluten free (I tried it for three months and got kind of tired of eating mostly fruit, vegetable, and dairy) without noticing anything different. For you however it might make a big difference so understand you choice and hope you get the turn around in the bones.
As for food I did find the Barilla Penne was very good (could not tell the difference) and I found some GF pizza flour from Italy that was also decent. At least in Durango GF food is likely very well established.
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