Autoimmunity Issues? Have Some Worms!

Bored with the idea of swallowing billions of bacteria for better health?  Worm supplements may not be far behind!

http://www.nytimes.com/2009/01/27/health/27brod.html?em

(As predicted by Futurama:  http://en.wikipedia.org/wiki/Parasites_Lost)

One of the things often noted by celiac sufferers after going gluten-free is that when they do accidentally ingest some gluten the reaction is much worse than it was before.  One theory I've seen proposed as to why that is involves regulatory T-cells, or rather the lack thereof.  Like bouncers, these guys are responsible for making sure nobody burns the place down and everyone leaves by closing time.  The problem is that when people stop showing up at the club for a while, the bouncers get laid off, and when the crowds come back there's nobody around to keep them in check.  The idea of keeping them active by what appears to be the biological equivalent of a playdate seems intriguing.

It turns out that celiac disease (and perhaps other autoimmune disorders) might have something to do with these cells not working very well in the first place.  In the case of celiac this seems due to a genetic issue, though perhaps autoimmune disorders in general have been rising to prominence lately because that issue is exacerbated by a lack of immune system training due to rising standards of hygiene -- eating dirt by the spoonful as a kid shows our immune systems what a real threat looks like.  Lacking that exposure, we get a bit jumpy and xenophobic, perceiving threats where there are none.  The checks and balances meant to prevent that err on the side of caution out of ignorance, and we end up making much ado about nothing. 

(Snarky link aside, I certainly wouldn't want anyone sending me an envelope full of wheat flour...).

Things I Can Blame on Celiac Disease Part 1: My Lackluster Wrestling Career

As a wrestler, I was, shall we say, a bit frustrating to my coaches.  In practice I showed great potential, but when the time came to actually perform I habitually disappointed.  I generally felt terrible most of the day on match day, couldn't stay hydrated, had a fraction of the stamina that I had in practice during the actual match, and generally lacked the motivation to do what I was supposed to be doing.  I just wanted to go home.  At the time I chalked this up primarily to nerves, which I'm still certain played a role.  But in hindsight I think something else was going on as well.

At the time (early to mid 90s), conventional wisdom held that, nutritionally speaking, the best way to prepare for a sporting event was to "carb up" a day or so beforehand to build up some reserve energy.  As such, it was not uncommon to have team pasta dinners the day before a match, or at the very least to eat a hearty dose of pizza or somesuch.  Since this typically came after weigh-ins, these were pretty substantial feasts, and certainly the most food we'd get at one time all week.

This, in retrospect, was not the smartest thing to do given my celiac disease.  Couple that with the immune-boosting effects of the fight or flight response and it's not a huge logical leap to conclude that this had a lot to do with my lackluster performances.  Eventually, in an attempt to reduce this effect, I started "eating light" on match day, which for me at the time meant eating a lot of crackers and toast.  Oops.

Gluten-Free Grocery Shopping Strategy

My first post-diagnosis trip to the grocery store took over three hours and I left in shock, daunted at the prospect of having to navigate aisles of hidden poison for the rest of my life.  Slowly but surely, though, I've learned to do just that, and can now get through a grocery trip in a half-hour or so -- faster than before I was diagnosed.

My biggest mistake starting out was trying to hold on to my existing diet.  That leads to $300 grocery bills full of gluten-free baked goods that sell for 6 times the price for half of the quantity of their alternatives, many of which, to add insult to injury, just didn't taste very good.  The trick, for me, was to start fresh and build a new diet based on naturally gluten-free food, indulging in gluten-free specialty foods only as the occasional cravings dictated.

So here is how I've come to view the grocery store:

• Areas in green are either naturally gluten-free or likely to contain food that's specially designated as such -- it says gluten-free right on the front of the package.  Note that the general pattern of following the outside of the store applies here.  Just watch out for "natural flavors" in the meats, though in many cases they're benign.
  
• Areas in yellow are the hard ones to get through.  Here's where ingredient-reading skills come in.  I've included dairy and ice cream here since, if this is one of your first gluten-free grocery trips, dairy products are likely troublesome too.  I generally don't buy from the yellow sections without some kind of confirmation; usually this just involves some web searching.  Watch out for cross contamination here also.
• Areas in red will not only almost certainly gluten you if you eat from them but will also depress you if you look too hard at the vast array of products -- many of which were probably your favorites -- that are now off limits.  Walk on through and hold your breath.  I'm only half kidding.

My advice on the first few trips is to worry about just getting by until the next one.  When you're told you can't eat such a wide variety of foods your instinct is to stockpile everything you can eat.  But if you look at it meal by meal, snack by snack, you'll start to snap out of the panic and realize there's plenty left to get by on.  And once you've learned how to survive week to week, you can start learning how to enjoy it.  There are hundreds of blogs full of gluten-free recipes out there, but they can be a bit intimidating if you try to start out that way.  You don't have to figure everything out at once -- I've still got a long way to go in rediscovering what I can eat.  

IgG Food Sensitivity Testing

There is a fair amount of debate as to the usefulness of food sensitivity testing.  Those in favor tend to cite the fact that eliminating the foods these tests suggest eliminating reduced their symptoms, and those opposed cite shaky test reliability and the considerable ongoing debate as to whether the antibodies being tested are actually important.  Of undisputed importance, however, is nutrition, which can very easily fall by the wayside when making radical changes to diet.

One study found results from a particular lab to vary by 73% on average numerically, with the eat/don't eat recommendation varying by 59% -- ie if you took the test twice it would give you a different recommendation for 59% of the foods on the list.  Not encouraging to say the least.  But that was only one lab of the three that they tested, and that was also seven years ago now.  It's likely that things have improved dramatically since then.

Another study provides some evidence in favor of IgG testing.  Patients were given the test, and some were put on a diet excluding their actual indicated sensitivities and others were put on a diet excluding other foods.  After twelve weeks, among those fully adherent to the diet, those on the true diet reported a 26% greater reduction in symptoms than those on the sham diet. 

I was given an IgG food sensitivity panel at the same time as my Celiac panel.  My results were as follows (there were 96 foods total; the ones below the .200 threshold aren't shown):

The results weren't that surprising; all of the familiar Celiac enemies are at the top, along with their frequent accomplice, dairy.  Eggs were something of a surprise, though looking back it does explain some things.  

The question was what to do with these results.  Going gluten-free is hard enough, but gluten and corn together is nigh impossible, not to mention all of the others.  But continuing to eat things that there's at least some evidence I shouldn't could hinder the healing process.  So in the pursuit of science and relief after thirty years of symptoms, I opted to attempt excluding all of the above for a time and slowly reintroduce things as I improved.  I'd heard that other sensitivities tend to calm down as the damage caused by Celiac begins to heal.  

Suffice it to say that I lost some weight in the effort, and learned that the first thing that Americans tend to do when they modify a piece of food is add some wheat or corn to it.  But I ate my bananas and unseasoned meat for a while, and eventually got brave and healthy enough to start reintroductions.

The tough part about reintroducing foods when you have a sheet of paper that says it doesn't like you is that you become hyper-aware of that.  This is one of the reasons a lot of doctors don't like doing this kind of testing in the first place.  So in the interest of curbing some of that anxiety I instead eventually instituted a "don't ask, don't tell" policy for non-gluten ingredients.  I won't down a glass of eggs Rocky-style, but I won't ask if the gluten-free cookies have eggs in them.  If I feel suboptimal afterwards, though, I know more or less what to blame.  Through trial and error, I'm hoping to figure out what of the above I still need to be concerned about.  

My Celiac Blood Panel Results

According to the classical definition of Celiac disease my bloodwork falls somewhere in limbo. Recent thinking on the subject more strongly suggests that I'm positive, but as I understand it there's still a good amount of debate.  What isn't up for debate is that in the six months since I started a gluten-free diet I've seen both subjective and objective improvements in pretty much all aspects of my health.

So without further ado, here are the numbers:

Gliadin IgA 0.9; where <5 is negative

Gliadin IgG 12.9; where <10 is negative

TTG IgA 0.6; <4 is negative, 4-10 is weak positive; >10 is positive

TTG IgG 21.4; >9 positive.  Whoah!

Total IgA:  253; where 69-382 is the normal range

A lot of doctors would consider this a negative test.  IgA is considered the primary indicator of Celiac disease in blood tests, and while both IgA tests came out negative, my overall level of IgA was normal, ruling out the selective deficiency that some Celiacs suffer from.  Typically the IgG tests are only used in those cases.  

But clearly something is going on with those IgG antibodies.  TTG IgG shows up in a number of other conditions,  but none of those match my symptoms very well.  Furthermore, the use of IgA antibodies as a primary indicator is predicated on the idea that Celiac is only confirmed by a positive intestinal biopsy, not "this person's symptoms improve on a gluten-free diet."  Call it Celiac or call it non-Celiac gluten-sensitivity; it's got the same symptoms and the same treatment if not the same pathology. But from what I've seen lately, many people, my doctor included, are considering it to be slightly different manifestations of the same disease.  Not every symptom shows up in every person.  

A biopsy in my case would have been interesting, but even if it was negative it seemed a gluten-free diet was my next step, so I didn't push for it, opting instead to see how the diet treated me.  Since I've responded so well, I feel like I have my answer.

Six Months Gluten-Free

I used to marvel at the audacity of those I saw scarfing down fast food before boarding an airplane. Three hundred people, six hours, and two bathrooms -- according to my worldview the numbers all but ensured a digestive catastrophe somewhere on that plane.  But I seemed to be the only one concerned about it as I monastically fasted to ensure that it wouldn't be me.

When I was diagnosed with Celiac disease six months ago the world started making a lot more sense.  It turned out that the rest of the world was in fact not playing gastrointestinal Russian Roulette every time they ate.  It was just me.  And the last thing I'd have suspected was at the root of it all.

"I can't have food sensitivities; all I've eaten is toast and I still feel terrible!",  I'd think.  Dry, white toast:  cornerstone of the BRAT diet so frequently recommended as a way to recover from digestive issues, was my Kaiser Soze, quietly pointing the finger everywhere else as it pretended to be my only ally.  I'd eat half a tray of dinner rolls before a meal and blame the meat when I didn't feel good afterwards.  I'd blame the pepperoni for being too greasy when pizza wasn't sitting right.  

Determined to figure things out once and for all, I finally brought all of this up with my doctor.  A year of probiotics, Nexium, and smooth muscle relaxants later without much progress led her to order Celiac and food sensitivity panels.  Always the overachiever, I broke a couple of office records with the results (though they weren't all that conclusive; but that's another article).

Sufficiently convinced and none too eager to have a camera stuck anywhere, I went on a gluten-free diet the next day.  Within a week, I started feeling better in ways I'd never have thought to complain about.  My skin felt better.  My cheeks got pinker.  My energy level increased.  I was able to focus more clearly on what I was doing.  And eating became a whole new experience.  The idea that I could eat a scary plate of meat without consequence as long as it wasn't on a sandwich took a bit of getting used to, but get used to it I did.  I could eat fearlessly.

Well, not too fearlessly.  I initially dismissed the warnings I'd seen about cross-contamination and miniscule amounts of gluten showing up in unexpected places.  A month ago I had been eating pretzels and pizza; a little soy sauce left on the grill couldn't hurt me.  After about a month's worth of honeymoon, my body convinced me otherwise.  I started regressing pretty badly and, though most days I felt fine, on those that I didn't I felt much worse than before.  The message boards assured me that this was normal, but that wasn't much consolation.

After a troubling month of questioning my diagnosis, wondering what else might be going on, and feeling generally miserable I started collapsing my diet again and believing that my immune system was better at finding gluten than I'd previously imagined.  My diet was down to hash browns, Boar's Head lunch meat,  bananas, and water.  I lost about 20 pounds.  My wife was convinced I had an eating disorder.   But it started working.  Days and weeks went by without incident and I started gaining the confidence to reintegrate some foods.  Episodes became fewer and further between.  I rediscovered the greatness of combining peanut butter and chocolate.  I found some gluten-free barbecue sauce and disgusted my wife by putting it on everything.  I went on a trip involving a 13 hour car ride with remarkably little anxiety.

Yesterday I got the results back from my latest round of bloodwork.  Prior to the Celiac diagnosis my doctor had been concerned about my triglycerides (which peaked in the 400s) and my liver function (persistently elevated and she'd ruled out the most common explanations).  As of yesterday, after six months on a gluten-free diet, both are in normal range without medication.  My triglycerides were at 99, and the blood was sampled two days after Christmas, during which I had hit the chocolate pretty hard.  This was dramatically lower than my previous record on medication (Lovaza).  The connection between Celiac and hypertriglyceridemia doesn't seem well established in the medical literature as yet, but it stands to reason that cutting out so many carbohydrates and substances that were offending my liver could have such a dramatic impact.  My doctor says she's going to write me up for a journal article.

Judging from the experiences I've read from others, it's going to get even better.  I'm doing well, but my diet is still pretty restricted and certain foods still seem to cause some trouble despite being gluten free.  But day-to-day I feel great. 

My goal in writing this is to provide another case for those interested to compare notes against.  It seems Celiac disease can present itself in a lot of different ways, and doctors are reluctant to diagnose it (Big Wheat is paying them all off!  Oops, conspiracy mode off).  Hopefully getting a little more information out there on what currently appears to be a success story will help someone.