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, or leave a comment on the blog.