Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, November 20, 2014

No Interferon for me

I wrote in my October 12th post that Dr. C offered to give me samples of Interferon injections, combined with Prozac, as a short-term (1 - 2 month) antiviral treatment.  He offered this because of my ongoing prostatitis pain, believing the pain to be related to viral inflammation.  Dr. C theorized that the Interferon/Prozac treatment would control the virus long enough for inflammation to die down.

Throughout most of October and November, I delayed any decision to start the treatment because the treatment apparently causes severe flu-like symptoms.  With my family and work obligations, I couldn't afford to be 100% out of commission with a flu.

In the mean time, my prostatitis started to dissipate.  Not completely (it still comes and goes), but it seems like it's trending in the right direction.  I haven't had any days lately where the pain of sitting is unbearable.

At the same time, I spoke to a fellow patient who emphasized how serious and strong of a treatment Interferon is.  It's not to be taken lightly.  Plus, I researched the side effects of Prozac and it sounds like it can turn someone into a zombie--no emotions.  I don't want to be a zombie for the holidays.  So my little risk/reward analysis told me it wasn't worth the risk of experimenting with Interferon/Prozac. But it's good to know that it's (hopefully) still an option if things get really bad again.

Tuesday, November 11, 2014

The backlash against gluten-free diets: why it's wrong

We've all seen it.  And it was predictable.  There's a heavy backlash against gluten-free dieters and it's only getting stronger.  The negativity toward gluten-free dieters can get downright nasty--they're portrayed as silly trend-followers who don't really understand nutritional science.  The backlash shows up on an almost daily basis in the form of punchlines on nighttime talk shows or snide comments from your friends and co-workers.

Here's why the backlash is just plain wrong...

First, let me establish that I don't have a dog in this fight.  I don't follow a gluten free diet per se.  I do eat a low-carb, Paleo-ish diet, which happens to mean I consume little gluten as compared to, say, someone on the standard american diet (SAD).  But if I want to eat a particular food that otherwise fits my diet and by chance contains gluten, I won't hesitate.

Second, let me say a few words about why there's a backlash.  It's two simple reasons:  There is a small minority of people who simply cannot shut up about their gluten-free diets.  They utterly fail to comprehend that there are few things less interesting than hearing about someone's specialized diet. These people invited the backlash and they unfortunately raise ire against everyone else who modestly adheres to the diet because it makes a difference in their day-to-day well-being.

My advice to these gluten-free megaphones: become as low-key about your gluten-freeness as you possibly can. If you're looking for something suitable on a restaurant menu, figure out a way to ask if it's gluten free without making it sound like you'll die if a speck of gluten crosses your lips - and preferably without even using the word "gluten."  I assure you that's quite possible.

The other reason is that most people (especially we Americans) just aren't comfortable not having a strong opinion about a topic that has entered the public consciousness. We're an opinionated people for better for worse--mostly worse.  We go to the grocery store and it seems like half the product labels scream "Gluten-Free" and we want to have something to say or tweet or status-update about that, damnit.  So we feel like we're somehow obligated to choose one side of the issue of the other; either we're a gluten-free champion or a bitter cynic.  Just once I'd like to meet someone who says, "You know, I don't really have an opinion on gluten.  I haven't read enough about it to form a knowledgeable point of view."

Nintey-five percent of the time, when a gluten cynic shares their viewpoint, it goes like this:  "Gluten is only a problem for people with Celiac's disease.  If you don't have Celiac's, gluten is not an issue."

Ah, if only nutritional science was so simple.  That's like saying, "If you don't have diabetes, you can eat as much sugar as you want without any health repercussions."

Here's the real deal.  Yes, Celiac's is a serious auto-immune disease and being gluten-free is imperative for people with that disease.  But for the rest of us, there's still a large and growing body of research that suggests that gluten is pro-inflammatory.  And inflammation has been implicated as a root cause of a range of diseases, from heart disease to Alzheimer's; from autism to migraines, and many more.

Even if you don't have any of those diseases, you simply won't feel as strong and as healthy as you otherwise would if you have excess inflammation.  The inflammation might be sub-clinical (you're hardly aware of it) but it could be keeping you from feeling more energetic, clear-headed, and healthy.

This past Summer, the results of a study were published that purported to cast doubt on whether non-Celiac's gluten sensitivity was 'a real thing.'  This of course became translated into attention-grabbing headlines proclaiming the whole gluten-free craze to be some sort of hoax.  Witness the utter glee behind these "neener-neener" headlines, which totally misrepresent the study they reference:  Google results for "gluten proven false."

First, the actual "study" that was referenced in these headlines, from Monash University in Australia, followed only 37 people, which is about as significant as as a wisp of dust.  The study tracked the subjects entire week!  The patience of those intrepid scientists is astonishing, isn't it?

But more importantly, even if you were to take the results of that one small study seriously, it only purports to cast doubt on a condition called "non-Celiac's gluten sensitivity."  Again, let's go back to the sugar analogy.  I don't think anybody doubts that refined sugars, in the large amounts consumed in the SAD, are bad for one's health.  It's not just about the immediate affects. Over a lifetime, consuming high amounts of sugar leads to obesity and diabetes, among other things.  This process plays out over a very long time, and does't require any kind of sugar "sensitivity" condition.

Studies suggest that the pro-inflammatory affect of gluten may operate in the same way.  Having looked at the studies showing the pro-inflammatory affects of gluten, it's really hard to discount them. (See, e.g. 1, 2, 3, 4, 5, )  Nobody has refuted any of these findings.  Certainly it doesn't take a degree in nutritional science to understand the difference between the myriad studies that observed the actual chemical process leading to inflammation from gluten, as compared to single study that followed a group of self-selecting gluten sensitive subject for a mere 7 days.

But of course we know which study made the headlines.

I'm not saying that anyone has proven with 100% certainty that gluten is categorically bad, in any amount, for 100% of the population.  Like most controversies regarding nutrition, A) there will never be enough evidence to remove all doubt, and B) the actual answer is probably highly nuanced, meaning it's possible that gluten has both benefits and detriments, and that the "right" amount depends on a number of variables, including difference in each individual's biochemistry. Again, think of sugar.

But if you're one of those bitter gluten cynics, you might want to ask yourself how sure you are that you're correct.  Even if you're not completely convinced by the gluten/inflammation connection, you'd have to admit that there's credible evidence in favor of it--a lot of it.  If you can refute the five studies I've linked above (a tiny sample), let's hear what you got.  Until then, do you really want to be rolling your eyes and making fun of people on an issue that is, at the very least, unresolved?  It's a legitimate debate and you ignore that at the risk of looking like a fool...

With the weight of the evidence pointing toward at least some real and significant problems associated with gluten consumption, it is likely you will be on the wrong side of history when all is said and done.  Might as well save yourself the backtracking now and quietly let each person explore for themselves whether reducing gluten intake is beneficial to them.  Let's all check back in 10 to 15 years and see what science says then.

I predict that, in the short term, the gluten backlash will get stronger until most gluten-free dieters are basically forced into the closet.  But the movement will quietly stick around until it gains more acceptance and, eventually, becomes more or less a permanent part of the conversation, just like....


Prostatitis - follow up

After my last post on prostatitis, I continued to finish out my course of antibiotics because my urologist was really insistent that I do.  I felt about 95% certain that the issue was not bacterial, but I was concerned that if it was, and if I stopped prematurely, I would be breeding some sort of antibiotic resistant super-bacteria.

So last Wednesday, after about 75 days of straight antibiotics, I finally finished the full course.  The problem: I was still having intermittent pain.  The pain now is infinitely more bearable than when it was at its worst.  In fact, if I had to live with my current pain level, I think I could do it with very little loss of quality of life.  But I was concerned that if, on the offhand chance, it was bacterial, and the few surviving bacteria went on to re-populate my prostate, I would have to start the whole trial over again with stronger antibiotics.

Alas, the urologist said that he thinks my pain now is just "residual inflammation" that will, hopefully, fade away with time.  But if it doesn't, and the pain comes back to the point where it is unbearable to sit, like before, then we agreed that we would finally test the actual fluid from the prostate (not just the urine) to get a definitive answer as to whether the issue is bacterial.  This what I wanted to do from the beginning but, for whatever reason, the doctor was very resistant to this.  (That's a whole other post).

So in the end, I feel good that there's a chance this pain will slowly subside (at least until the next episode), and that there's a plan in place if it doesn't.  I'm a planner,  More than anything, I just like knowing there's a plan.