Celiac Disease and Gluten Intolerance

Since I’ve talked about it several times now, and I’ve had friends and family test positive, test negative, or determine sensitivity through trial and error, I thought I’d try to break it down for those of you who are wondering what the heck everyone is talking about, and if this stupid “fad” is ever going to go away.

First, Celiac disease is an autoimmune disease which causes a host of nasty symptoms, and can actually be life threatening.  A true wheat allergy, also can be life-threatening in extreme cases.  But non-celiac gluten sensitivity (NCGS) confers a dizzying array of symptoms with a vast range of levels of miserableness.  There is a definitive test for celiac which involves a biopsy of the intestines (and who wants to have one of those?), but the blood tests are extremely unreliable.  If you have a family history of celiac or other autoimmune diseases, it’s worth it to insist on all four of the most common blood tests, rather than just any one test.  But remember, even if you are NOT celiac, even if it is proven definitively by the biopsy, it doesn’t mean you’re not gluten sensitive. There’s a basic overview of celiac, gluten intolerance, and wheat allergy here.  These are not all the same thing, although a lot of the symptoms are the same.

Gluten sensitivity or intolerance is not a black and white issue.  It is a continuum from the person who can’t tolerate the cross-contamination of a single bread crumb, to those who only have mild issues if they eat a lot of bread, and everything in between.  There are a mind-bogglingly large number of symptoms that have been associated with gluten sensitivity.  The fact is, MOST people are probably at least a little sensitive.  Are you willing to suffer through a little bit of discomfort in order to enjoy that yeast roll?  Perhaps.  Are you thrilled about the idea of spending the next several hours in the bathroom because some waiter thought it would be OK to pick the croutons off your salad instead of making a fresh one that has never touched breadcrumbs?  Probably less likely.  So obviously your level of sensitivity is going to have a pretty strong influence on how picky you are.

Now, there are people out there who are avoiding gluten just because it’s the thing right now.  I must say, while this attitude can occasionally be annoying, those of us who MUST avoid gluten are generally grateful for those “jumping on the bandwagon” simply because it makes it easier for us to find gluten-free offerings on the grocery store shelf and in restaurants.  There are so many more options out there than there were even a mere six months ago.  Unfortunately, many stores use the specialty nature of these items to completely swindle you.  I mean seriously, does a cereal made with rice instead of wheat really cost them 2-3 times more to produce???  And some of it just flat out tastes like crap.  A tiny loaf of gluten free bread costs $6, and tastes like a slightly scorched cross between styrofoam and cardboard, with the texture of really dry pound cake.  NOT good eats.

But if you find that you feel tons better when you don’t eat wheat than when you do, you’re willing to make concessions.  Mine is just to skip the bread altogether unless I’ve made it myself.  And remarkably, most of it I don’t miss.  Hamburger buns?  I prefer without anyway.  My palate has changed significantly since cutting out bread, and since I’ve gone mostly “paleo/primal”, some of that other stuff just doesn’t appeal to me any more.  Mark’s Daily Apple is one of my favorite primal sites, just because it’s pretty sensible about eating at least 80/20 primal instead of never eating any special treats.

My biggest symptoms (and the ones that have shown the most dramatic improvement) are hair loss, chronic fatigue, severe achiness/inflammation, and skin issues.  I have had problems with my skin since I was about 12, painful (and horrifyingly embarrassing) cystic acne on my face and shoulders which is now entirely gone (incidentally, I kept thinking I would grow out of it, but as of turning 40 I had not, until eliminating wheat).  In the experimentation phase, every time I reintroduced wheat, I had a significant breakout.  I also had annoying scaly patches on my upper arms which I always thought were just dry skin, but they have disappeared as well.  I’ve since learned that the scaly skin thing is pretty common.

It was probably about 10-12 years ago when I started noticing pretty dramatic hair loss.  I was literally throwing huge handfuls of hair away every time I washed it.  The only reason I wasn’t nearly bald is that I started out with abnormally thick hair, so it was actually quite a while of this drastic hair loss before it was visually noticeable.  My biggest frustration with that as a symptom is that the doctors didn’t want to take it seriously.  Yes, in some ways it’s vain, but if you are losing HUGE amounts of hair for no apparent reason, your body is screaming at you that there is something wrong.  In the case of gluten sensitivity, the damage done to the intestines interferes with nutrient absorption.  So even if you’re obsessively overdosing on B vitamins and biotin, you’re not really going to benefit much from them, because your body just isn’t processing them.

The fatigue.  Ugh.  It started about the same time as the hair loss, and is what made me keep nagging my doctor about thyroid issues in spite of the fact that my TSH kept coming back “normal”.  That’s a whole other story.  I have been told I have chronic fatigue syndrome (which I honestly think is just a lazy doctor’s way of saying you’re tired, but they don’t really care to investigate the CAUSE), I have found that I have Hashimoto’s thyroiditis (in which my immune system has decided that my thyroid is foreign and it must systematically obliterate it), and I have Addison’s disease (AD) (that splendid immune system is attacking my adrenal cortex as well, and so I can’t recharge my daily battery).  I’ve also been told that I’m just too busy, which I freely admit has been true at many points in my life.  But slapping the CFS label on it and telling me to get more sleep is just not going to cut it.  And there is a drastic difference between feeling tired because you’re too busy and absolutely not being able to lift your head off the pillow.  Treating the thyroid helped a bit. Treating the adrenal insufficiency helped quite a bit more.  (By the time I was diagnosed with AD, I was almost entirely non-functional, literally bedridden with unexplained weakness.)

But I was still more exhausted than I should have been, most days.  Although I didn’t expect it, my energy level has rebounded phenomenally since I’ve cut out the gluten.  I attribute this mostly to the inability to absorb nutrients stated earlier.  It doesn’t matter how nutrient dense your diet is if your body is simply not incorporating it.  Now, because I still have those other auto-immune diseases, I still have low days.  But they’re nothing like the intensity or frequency I was having before.

Another totally unexpected improvement was my chronic pain.  I was in a car accident several years ago which required PT and daily NAIDS.  I was also told I had been blessed with early onset arthritis, which runs pretty rampant in my family.  So I had pretty much resigned myself to being in constant pain for the rest of my life, which was pretty depressing since I hadn’t yet hit 40.  I didn’t know that the primary cause for my pain was chronic inflammation, almost entirely attributable to my diet.

Because I was constantly popping pain pills just to get through the day, I also had pretty severe reflux, which was also being treated with prescription meds.  When I nixed the gluten, I noticed that I didn’t feel as achy.  I didn’t need as many pills.  I had so much less early morning stiffness.  And it kept getting better.  I went from having 4-5 days a week where it was agony to drag myself out of bed, to having a moderately achy day every couple of months.  And so I decided to try to cut back on the GERD meds.  Then stop them altogether. Because not only was I no longer ripping my stomach up with NSAIDS, I was having almost no digestive issues after the removal of wheat.  That reason alone would make me want to stop.

There have been a number of other positive effects, including losing nearly 40 lbs with virtually no effort, fingernails no longer peeling, migraines disappearing entirely, headaches in general fairly rare, insomnia no longer a multi-night-a-week celebration, generalized intestinal distress now a very rare occurrence.  I’ve fine-tuned it a bit by minimizing, if not completely eliminating other things that can cause issues, such as legumes, most grains, and dairy.  I’m not hyper-sensitive to any of these things, but I’ve noticed that a meal with a fair bit of corn tends to sit in my belly like a lead weight.  I don’t seem to have any trouble with cheese, but I drink almond milk instead of cow’s milk.  Beans never made me tremendously gassy, but now that know what it feels like to NOT be bloated, I’m surprised at how much more obvious it is.  It’s also funny how much overlap there is between the people who eat gluten-free and the ones who end up going full paleo and giving up all grains (so obviously paleo=gluten-free) and legumes.

Going hard-core paleo is not for everyone, and I’m not that, anyway.  But I CAN tell you what a fantastic improvement removing gluten from my diet has made on my entire health, in so many different ways.  If you check out that gluten-sensitivity symptoms list, and you recognize some of them, I would challenge you to just give it a try.  Try it for a month.  If you can’t commit to that, just try it for a couple of weeks.  Or a week.  But you have to commit to having absolutely NO gluten for the trial period, so that you can really see the changes, and there will be no doubt of the reason you’re feeling so much better.  The worst thing that could happen is that you notice no difference and go right back to your pasta and yeast rolls.  But if you do see that change, you might just decide it’s worth it to permanently alter what you feed your body.  That’s definitely a win.

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One thought on “Celiac Disease and Gluten Intolerance

  1. […] I was writing WAY too much about the gluten thing, so I decided to make a separate gluten-free post.   I try not to proselytize for the paleo lifestyle too much, because I’m not really […]

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