celiac blood tests: December 2009
celiac diagnosis: January 2010
symptoms (beginning July/Aug 2009): bone pain, skin changes (thinning skin, loss of elasticity, bulging veins), neurological problems (paresthesias, dysesthesias, ataxia, brain fog, loss of dexterity, etc.), fatigue, heat/exercise intolerance, mood changes, joint pain, positive RF and ANA, pressure around eyes, trouble falling asleep, thyroid symptoms and autoantibodies.
gluten-free since January 2010; RF and ANA now negative; still having some skin problems (not DH)
In retrospect, the first symptoms were probably thinning hair (2 years prior to more alarming symptoms), having less energy/tiredness.
First symptoms that raised concern: distended veins on feet and around ankesl and pain associated with standing and walking. I was initially told it was varicose veins (even though I don't smoke, wasn't overweight and exercised regularly; also: my legs didn't really have anything that looked like variscosities.
Early on, I also experienced some spikes in blood pressure that were unrelated to any external stress or activity: I felt like blood was pounding in my temples, in my abdomen, and I went to the emergency once because I felt kind of dizzy and weird and my blood pressure was significantly higher.
Things deteriorated relatively quickly -- within a month I was having heat and exercise intolerance, and bone pain. Whereas I had easily walked an hour a day and hiked for 3 or 4 hours on the weekends, I was reduced to sitting on the bathroom floor while I brushed my teeth because it hurt to stand. I found it difficult to walk for more than 10 minutes at a time. By the end of the day my hands and feet would be red and uncomfortable (this had to do with blood flow and veins/skin, not joints).
Once my GP acknowledged that something was wrong, she identified the problem as neurological (based on my description of the pain, and abnormally jumpy reflexes -- she mentioned MS as a possibility and referred me to a neurologist and rheumatologist. Meanwhile, my body felt like it was falling apart: brain fog, overwhelming fatigue, weight loss (I'm 5'5" and went from 122 to 109), joint pain, bone pain, muscle twitches, ataxia (bumping into walls and doorways, dropping things), trouble focusing, occasionally mixing up words. Was also having weird sensations of pressure around my eyes, as well as dry eyes and sore throat.
The rheumatologist's blood tests showed my ANA and rheumatoid factor as high/positive. My vitamin D was low and she put me on megadoses (within a couple of months I was feeling some improvement from this -- my bone pain went away, even before the celiac diagnosis. However, the tests and diagnostic signs for lupus, RA, and other autoimmune diseases were negative. She had no diagnosis, but suggested that I could take the drug Plaquenil in the hopes of preventing some of these diseases from developing. Since Plaquenil can cause retinal damage in some people, she referred me to an opthamologist for an eye exam.
The first neurologist I saw (let's call her neuro #1) did a physical exam and said she didn't think I had MS, but ordered an MRI of my brain since I was describing symptoms suggesting brain involvement. The radiologist read these as normal. I saw a second neurologist who saw one spot on the scan that she said could be nothing, or could be a small lesion. So she ordered a second MRI of my spine, which came out clean. Meanwhile, neuro #1 said she thought I probably had a connective tissue disease of some kind, but since the symptoms are very similar to lyme (and since I'm a hiker living in an area with ticks) she offered me the option to do a round of antibiotics, just in case. So I did the antibiotics (which didn't help, but I was glad to have taken that precaution).
I drove to a large city a few hours away to see a second rheumatologist who had been recommended via a coworker. She said that I didn't have RA or lupus and should not take Plaquenil. When I pressed her on possible causes for my skin/vein symptoms, she suggested chilblains or possibly an unusual form of fibromyalgia. (Neuro #2 had suggested Rayaud's, but my symptoms did not match clinical descriptions or photos at all.)
At this point, neuro #1 was ready to let the rheumatologist deal with me. By now, I had done a ton of research and also read a book called *How Doctors Think*, which gave me a better sense of how to present my concerns and suggestions to the doctor (and helped me feel validated in doing so). I asked neuro #1 if my problems might be caused by a thyroid problem or by celiac (by this time, I had noticed some changes in my stools, though there was none of the gastro pain that many people experience). She was very responsive and ordered tests for both. Both came back positive -- my celiac bloodwork was off the charts -- she said she'd never seen numbers that high.
My primary care doctor referred me to the GI doctor and told me (rightly) that I should continue to eat gluten until they could do an endoscopy. However, the first available appointment was more than a month later. Since it was obvious from my bloodwork that my body was having a negative response to the gluten, and since I knew that some symptoms (including neurological and thyroid) symptoms might be reversed if caught early enough, I quit gluten immediately. When I did see the GI doctor, she said that the endoscopy wasn't necessary for diagnosis (unless I needed it in order to "believe").
I saw an endocrinologist about the thyroid autoantibodies -- my TSH was still normal, and she said she didn't see physical changes to be concerned about. We will continue to monitor my TSH, but right now things feel ok in this area.
At 4 month gluten-free, I have my energy back, my ANA and RF have normalized, and I am able to hike and exercise. My body temperature appears to be getting back to normal (I live in a place with cold, snowy winters, and was sleeping with only a sheet and my bedroom windows open up through the celiac diagnosis). The main challenge now is that I've developed sensitivies/allergies to foods other than gluten. I definitely react to tomatoes and potatoes (nightshades), which cause joint pain. (Seriously, giving up tomatoes has been more difficult from a food craving point of view than giving up gluten.)
Most recently, I am having a lot of vague, mild itchiness, oral allergy response, and my face is entirely broken out. I tried going off of dairy, eggs, and corn for a week, but didn't notice a real noticeable difference. I realize that a week probably isn't long enough, but I have an appointment in a couple of weeks to see someone who specializes in allergies, diet, and chronic illnesses, so am hoping to get some testing and clearer guidance on how to identify problem foods. I have always liked to bake, and was rocking the gluten-free baking with all of the cool flours (quinoa, sorghum, etc.), so it's a downer that these food sensitivities are throwing a wrench into the works.
I've had a lump in my lip for over a month. It's not an ulcer/canker sore, so my GI doc says I should have it looked at by an oral surgeon, in case it needs to be biopsy. Translation: this could be cancer, so better get it looked at. So ... fingers crossed.
Update (5/12/2010): saw the oral surgeon -- he says the lump in my mouth is a mucocele. So that's the good news. The bad news is that my food allergies seem to be getting worse. The only foods I seem to be able to eat without reacting are rice, bananas, plain meat (turkey, chicken, etc.), and I seem to be tolerating dairy in small amounts (on cereal, in coffee). Ugh. I don't understand why this is happening now, after 3 months of steady improvement. There's no way it can be gluten -- I'm not really eating any processed food at this point, and I've checked the other possible sources. Grumpy!