Tuesday, September 28, 2010


So I've been on 30mg Cymbalta for 5 days now. It's been a mixed bag. On the plus side, my muscle pain is significantly improved, and I'm feeling less despondent and generally in a better mood.

On the down side, my concentration is worse than ever, leaving me totally unable to work for the past week. I can't even seem to get through a newspaper article without re-reading the same paragraph over and over again. Reading anything is really a challenge right now.

My fatigue is also perhaps a bit worse, though strangely it "bothers" me less, while on the medication. I'm trying to hang in there until next Monday, when I'll be able to call the Rheumatologist and get the results of all the bloodwork he did.

Keeping this short as I really don't have much focus right now.

Monday, September 20, 2010

went to see a rheumatologist today

After a 2 month wait, I finally had my appointment with a highly-recommended rheumatologist today. I was pretty impressed with the initial visit. He spent a lot of time taking down my history, asking questions and generally just listening. I liked that he paused for a bit and asked "so, what do you think you have?" It's nice to see a doc that actually values his patients' opinions, and doesn't immediately write you off as a nutcase or hypochondriac because you've been researching your own symptoms online.

He ordered a ton of bloodwork, most of which I didn't understand. I do know that he's testing for Lyme Disease, Rheumatoid Arthritis, Celiac (I asked for that, to see if my TTg level has come down at all since being gluten-free), and Lupus.

He doesn't think I have hyperparathyroidism, because typically you'd see a much higher Calcium level with the severity of the symptoms that I'm having (yes, I'm aware that parathyroid.com disputes this). I'm still waiting for the PTH/Calcium/Magnesium test to come back, so we'll see.

He noticed that I had significantly lowered blood pressure when moving from a lying position to sitting up. He's a good doc- he put the cuff on and then distracted me, all the while taking note of my BP and I was none the wiser until the end.

He also noticed something funny about the coloring of my fingernails, and my cold hands. He pegged this at a "1", on a scale of 0 to 4 with 4 being the most severe. Unfortunately I don't recall the exact meaning of this... something to do with RA I think.

He said that Lupus can sometimes cause a false-positive for Lyme, which may explain why I tested positive for Lyme a few years back, but never showed any improvement on antibiotics. As far as I know I've never been tested for Lupus; he was kind of surprised to hear that I'd never been tested.

When I asked him what he thought I had, he said that assuming all the tests come back negative, he thinks I have either Fibromyalgia or Chronic Fatigue. I was surprised, since I always felt that Fibromyalgia was kind of a bucket label that they put on patients whose problem they can't really figure out. He said that no, it's a very real, very specific thing. He did note that I didn't have any of the tender points though. He's suspicious of Chronic Fatigue because of my low white blood count.  So all of this is really just speculation as we wait for the blood results to come in, which will take about 2 weeks.

In the mean time, he wants to treat my symptoms, which typically means antidepressants. I'm not too keen on that idea, having spent years getting on and then off virtually every pill known to psychiatry. In the end he sent me home with some free samples of Cymbalta, but no pressure from him to try it. I'm still not sure if I'll take it or not.

Saturday, September 11, 2010


Well I'm beginning my 10th week gluten-free, and still not seeing much improvement, beyond some modest GI symptoms. I'm planning to stick with the diet for at least a couple more months, but I'm getting very disappointed. So I'm starting to investigate other possibilities.

Recently someone on the celiac.com forums suggested that I get checked for Hyperparathyroidism. I hadn't really considered it before, especially since I had seen an endocrinologist back in April; I just assumed he had checked for it, or that whatever bloodwork he ran didn't give any indication of it. But upon reading the symptoms, I have quite a lot of them:
weakness and fatigue, depression, bone pain, muscle soreness (myalgias), feelings of nausea and vomiting, constipation, frequent urination, and cognitive impairment.
So I went back over the bloodwork I had done earlier this year, and found that my Calcium level was 10.5mg/dl. This is at the very top end of the normal range, according to the lab. This site suggests that a Calcium level that high is worth investigating. Unfortunately I don't think I have ever had my PTH level tested, or at least if it was, I was never given a copy of it.

What prompted the suggestion to investigate hyperparathyroidism is the fact that I had a low Vitamin D level, and that I initially felt better (dramatically better) for a few days on Vitamin D supplements. Fatigue, pain, dizziness, memory- all of it was way better. This improvement only lasted about 3 days, and then I went back to my status quo. One interesting thing I noticed during those good 3 days, was that when I woke up in the morning and got out of bed, my feet felt strange. It took me a few seconds to figure it out, but eventually I realized that for the first time in years my feet actually didn't hurt. It was a pain that I had grown so accustomed to that I no longer even noticed it until it was (briefly) gone!

So I'm neither a doctor nor a scientist, but I can't help wondering if perhaps the Vitamin D therapy initially helped me feel better until my Calcium levels went too high, causing my body to protect itself by tamping down on the available Vitamin D. This site says that's what the body does in the presence of excess Calcium, potentially caused by Hyperparathyroidism.

But to be somewhat skeptical, I get the impression that Hyperparathyroidism isn't terribly common. At least, there aren't a whole lot of support sites out there like there are for Celiac. This leads me to believe that it's somewhat rare, and perhaps I'm just heading down yet another rathole. Well, it can't hurt to ask for a blood test. I have a new doctor appointment coming up in a week. This guy is an internist/rheumatologist who specializes in long term chronic-fatigue type patients. I'll be sure to ask him what he thinks about it.

Tuesday, August 24, 2010

genetic test for Celiac: I'm HLA DQ8 Heterozygous

Quick update- the results of the genetic test for Celiac came in today. I'm heterozygous for HLA DQ8. She only ran the test for DQ2 and DQ8. My understanding is that this indicates a "moderate" risk for Celiac, but isn't really indicative one way or the other.

Monday, August 16, 2010

update: "Mild villous blunting"

Today marks 6 weeks post-biopsy, and 6 weeks on the gluten-free diet. On the bright side, I have seen some gradual improvement in GI symptoms- the rumbling, gas & bloating that I used to get after most meals seems almost totally gone. Additionally, I'm starting to have stretches where rather than having 3-5 bowel movements daily (my previous "normal"), I'll have only a single BM/day for several days in a row. I still have days with 3-4 BMs, but they're getting rarer.

I had a follow-up visit with the gastroenterologist this afternoon. Based on the GI improvement mentioned above, she feels that "it's likely you have (Celiac) Sprue", even though the biopsy labwork was unable to confirm it. So she wants me to stay the course on the GF-diet and check back with her in about 3 months. She also ordered the Celiac genetic test, for which I had blood drawn today.

On my way out I asked for copies of my biopsy results. You can view them here. Sitting in the parking lot reading them over I found this interesting phrase: "Mild villous blunting"! Isn't this pretty much indicative of Celiac? Does that mean she visually observed blunting during the procedure? Is that even possible? Why didn't she mention this before? Why doesn't the pathologist's report seem to agree with this?  I wish I had discovered this during the appointment rather than afterwards in the parking lot. This was pretty surprising, since she told me the biopsy had been totally normal. I'm very interested in hearing from my readers what the significance of "mild villous blunting" might be.

So in addition to the GI improvement I mentioned, I've also seen some occasional improvement in my dexterity. This will last a day or so, then revert back to feeling like I'm typing with mittens on. Perhaps related to this, my neurologist also remarked that my left-side reflexes have recently improved (they were a bit exagerated previously).

Sadly though, I've had no improvement in fatigue; in fact, it seems a lot worse than before I started the diet. I spent most of last week sitting on the couch staring at the wall. I've been totally unable to work the past week or so. My employer has so far been understanding, but I've burned through nearly all of my PTO at this point. It's a tiny company, and I doubt they can afford to keep me on for much longer in this state of non-productivity.

I'm really quite freaked out about being unable to work. So I made an appointment with a psychologist that specializes in chronic fatigue/pain issues. I didn't have a lot of success with this kind of therapy in the past, but I'm not sure what else to do. I'll report back on that in another posting.

Thanks for reading.

Thursday, July 15, 2010

Celiac biopsy negative, bloodwork positive

So I had the endoscopy and colonoscopy performed last week, and got the results back this morning- all is normal.

Given that the previous blood-tests were strongly positive, I asked the doctor whether she thought this ruled out Celiac or not. She replied that she honestly didn't know. Her recommendation was to get the genetic Celiac test; if that comes back negative, we can rule out Celiac. If it comes back positive for the gene, and if I respond (improve) on a gluten-free diet, then we can say that I have Celiac, or at the least a gluten-sensitivity.

This was a pretty disappointing outcome, as I was really hoping to confirm a Celiac diagnosis and finally have an answer after 18 years. I've been gluten-free since my procedure (9 days now). I've been following the diet religiously. While I did notice a small improvement in fatigue, it's not the dramatic change I noticed when I went gluten-free last month.

I asked the doctor what would be a typical improvement time for a Celiac patient, and she said it would take weeks or months, not days. So perhaps I need to be a little more patient. Especially considering how much wheat I consumed in the 3-week gluten challenge prior to the endoscopy.

Still, not the results I was hoping for.

Friday, June 18, 2010

New bloodwork results: Celiac looking more probable

Got a call from the gastroenterologist on Thursday with some potentially good news. She repeated the bloodwork that had initially been done by my primary care doc, which you'll recall revealed an elevated Tissue Transglutaminase level of 20, meaning "weakly positive" for Celiac.

The new results showed a level of 66, which is much more strongly indicative of Celiac. I have no idea how the same test can have such different results a couple of weeks apart (especially considering that I was "off wheat" for 10 days on the latter test). The gut biopsy is still the Gold Standard, so I'm trying to be patient and not get too excited. I'll have the endoscopy in a few weeks.

You might be wondering how potentially being diagnosed as having a terrible disease could possibly be considered good news. When you've been sick for a long time (18 years in my case) without any explanation for why you feel so sick, almost any kind of diagnosis is welcome. Especially when you've been told so many times that it's all in your head. The first step toward getting better has to be a diagnosis, even if it's a bad one. I don't think I'm alone in this thinking.

And as far as things go, Celiac Disease seems like it might be fairly manageable. Sure it's life-altering, and it means I'll never be able to enjoy some of my favorite foods again (pizza! Guinness!)  But it's something that's almost entirely controllable by diet; it's something I can do for myself. I'd gladly give up eating my favorite foods if it means I can have my life back again.

Wednesday, June 16, 2010

Visit with a Gastroenterologist

I had my first visit with the gastroenterologist on Monday. She agreed that Celiac Disease was within the realm of possibilities. She's ordered up an endoscopy and (shudder) colonoscopy, both to be done on the same day.  In order for the tests to be truly accurate, she wants me to go back on wheat again for 3 weeks. I'm kind of kicking myself for jumping the gun on going gluten-free, but I was really eager to see what the effect might be.

I honestly don't know what to make of my week-and-a-half off gluten. On one hand, I observed a significant improvement in my fatigue starting on the 4th day, and lasting about 5 days. Five "relatively good" days is very, very unusual for me. But then that improvement seemed to reverse itself, and by the 10th day, I seemed to be back where I started.

A couple of days after that, I had to start eating wheat again. I noticed quite a lot of tummy grumbling and increased bathroom visits when I did this, but it wasn't the huge drama that most celiacs report when they ingest wheat.

So I'm not really sure what to make of all this. I'm trying to be patient, and just wait for the test results, but that's always hard to do.

Tuesday, June 8, 2010

Hmm, maybe Celiac?

Time for an update. Based on the many suggestions I received over at HN, I asked my doctor to test me for Celiac Disease. I just got the results back, which I have uploaded here:
Seems like a big "maybe", as only the Transglutaminase AB IgA came back abnormal at 20, which is considered a "weak positive" for Celiac Disease. Based on this result my doc is referring me to a Gastroenterologist, with whom I have an appointment on Monday.

In the mean time, I got all excited about the possibility of Celiac and decided to try the gluten-free diet, just to see what would happen. This was perhaps a bad idea, as it means that if the gastro wants to do a biopsy, I might need to start eating wheat again before the test. But I couldn't help myself- if this has the potential to make me feel better, I wanted to find out right away. We'll see what the doc says.

So this is day 5 of me avoiding gluten. I did not notice any difference until the 4th day, when I observed a fairly noticeable improvement in fatigue and digestion. Fatigue is hard to quantify, but having 1 bowel movement per day vs 3-5 is a pretty big change. Not an earth-shaking improvement, but definitely a positive trend. Hopefully this will continue.

I have also posted scans of more test results, as a few people were interested in seeing them.

Thanks, and stay tuned.

Wednesday, June 2, 2010

Help Save My Life- I need your help

I'm a 39 year old male, and for 18 years I've been suffering from some kind illness that causes crippling fatigue, pain and memory problems. I've been to dozens of doctors, had hundreds of tests and spent thousands of dollars. It's only getting worse. I'm suffering all the time. I can barely work, and am seriously in danger of losing my job. It's only through insane amounts of effort that I manage to get anything done at all, and even that is no longer working for me.

I'm so tired that I can't enjoy anything. I can rarely even watch television because I get so tired and frustrated that I cannot follow the plot. I've gotten lost driving home from work (a route I've driven hundreds of times) because I was so tired/confused. Every day I wake up exhausted.  Life is an endurance marathon for me.

Can You Help?

I've tried everything I can think of, and lots of things I'd like to forget. But I'm all out of ideas. I really feel like I'm at the end of my rope. Here is the typical pattern I've been iterating over for the past 18 years- lookup a new doctor; schedule an appointment; doctor runs whatever kinds of tests he or she specializes in; tests come back normal; doctor runs out of ideas, and sends me off. I understand that it's not an easy case, and I don't expect a miracle. But I would really love to find an advocate that could help me figure out what that next step would be, which specialist to see, etc.

Please help me figure out what to do. What kind of test should I ask for? Any recommendations at all would be really, really welcome. I live in the Cleveland, Ohio area.

  • severe fatigue
  • non-refreshing sleep
  • memory loss, inability to concentrate or focus
  • muscle pain
  • dizziness
  • confusion
  • numbness
  • loss of dexterity
  • nasal congestion, always having to clear my throat
  • heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it

The Details

It started when I was about in college, about 20 years old.  I started feeling unusually fatigued. I'd suddenly feel physically weak, have trembling hands, and need to sit down.  I thought it was due to a poor diet- I became a vegetarian in school, but wasn't terribly good about eating a balanced diet. When the fatigue got worse, I decided to start eating meat again. Unfortunately it didn't help.

I started having trouble with numbness in my hands.  I used to play classical guitar, but the numbness worsened, and I could no longer "feel" the strings well enough to play. I would reach for a cup of coffee, and instead of grabbing it, would fling it across the table.  I developed pain in my hands and arms which no amount of rest seemed to cure.  It feels as if someone is pulling my muscles tightly- picture a rubber band being twisted up by rolling a pencil.

The numbness and pain moved to other parts of my body. I started feeling it in my legs, and had trouble walking.  I'd have trouble tripping all the time, feeling like I was dragging my feet.  I developed dizziness. Walking has become more and more difficult, as I have a hard time judging where I am spatially, and movement is disorienting. I developed a constant ringing in my ears, and at times my hearing "turns off" (one ear at a time, thankfully.)

As time went on, other symptoms started piling up. A sudden and unexplained bout of prostatitis (inflammation but no detectable infection). This left me unable to urinate normally- I dribble all the time.  My digestion is a mess (having to go 3-5 times a day, gassy all the time).

I do have a positive diagnosis of Hashimoto's Thyroiditis (where your body attacks the thyroid gland), for which I take Synthroid and Cytomel. According to recent bloodwork my levels are where they should be, so the medication seems to be correct.

I've also learned recently that I have an elevated IgA, which I'm told "is consistent with monoclonal gammopathy, and may explain your peripheral neuropathy".  The doctor (an endocrinologist) did not really explain that very well to me, except to say that there's not much that can be done for it.

Things I've Investigated
  • Sleep Apnea- I've had 5 or 6 tests done over the years. Occasionally they will find a "small to moderate" amount of OSA, but after 6 months with various CPAP/BiPAP machines I never saw any improvement in how I felt in the morning.  I had a very expensive ($7K) dental device made, which proved similarly useless.  I even had a surgery to remove my uvula after one doctor suggested I had "upper airway resistance syndrome".  My gut feeling is that there may be some OSA involvement, but it's not the primary cause of my fatigue. 
  • Lyme Disease- this was my initial suspicion many years ago, but the tests were negative. Tested again in 2008- came back positive, but after a year of treatment with every antibiotic imaginable (oral, but not IV) never yielded any improvement. 
  • Multiple Sclerosis- ruled out by MRIs.
  • Antidepressants- tried every kind imaginable for about 5 years. Several doctors tried these, suggesting that while any depression I might have is not primary, it's a common side effect in anyone with a chronic illness, and treating it might help.  SSRIs would always seemed like a silver bullet in the beginning, since it would drastically improve my mood, make me feel care-free and happy for a few weeks.  But it really didn't help with the underlying symptoms (fatigue, pain, confusion), and after a few weeks I'd feel worse than when I started.
  • Fibromyalgia- tried Amitriptyline, Lyrica, etc.
  • Psychotherapy- tried this for 9 months. After enough doctors tell you "it's all in your head", you'll try anything.  
  • Vitamin D- was tested recently and found to have to have an extremely low level of 8ng/mL (should be 30-74).  Consequently was prescribed 1000 UIs 2x daily.  Saw a dramatic improvement after about a week. Doctor then put me on a 50K UI pill once a week.  Had a negative reaction to that- very tired, headaches, nausea. Went back to taking 1000 IU 2x daily, and headaches etc. went away, but so did the initial improvement.  It really felt like magic when it worked- I felt more awake, less pain, more focused, could think more clearly, but then it all went away.  I kept thinking that the dose was too high, or too low, but was never able to reproduce the improvement I had in the beginning. Maybe it was just a coincidence. I've since had my D re-tested, and it's within normal range (25-OH, Total: 47, D2: 35, D2: 12).  
  • tested for allergies- tried this in the very beginning, and the even the doc was surprised when all the results came back negative (because upon physical exam, he observed obvious irritation and congestion typical of an allergic reaction). But apparently I'm not allergic to anything.
  • tilt-table test- visited a very well-respected cardiologist in Long Island who performed a series of tilt-table tests, looking for Neurally Mediated Hypotension. I had a positive reaction to the test only at the very tail end of it (i.e. not a significant reaction)
  • sleeping less- oddly enough, the only thing that seems to help somewhat is to get less sleep. I typically sleep about 8 hours a night, but I find that if I cut that back to 4-6 hours, I feel better during the day. Waking up feels horrible after so little sleep, but paradoxically I tend to have a better day afterward.

Thank You

Thank you so much for taking the time to read through this. If you have any advice or suggestions, please contact me at savemylyfe@gmail.com, or leave a comment on the blog.