My Gluten Story

This is how it all began...

As a child, I was plagued by horrible migraines that started in the first grade.  I remember those grape chewable Tylenol tablets I would get and to this day the smell or taste of grape juice makes me sick.  Despite being small for my size, I always thought my stomach was large (due to bloating).  Certain foods made me sick to my stomach, I went through periods of time where I thought literally everything made me sick.

One of those periods was in college.  It was my final year and it was especially bad, so I was tested for Celiac Disease - but unfortunately for me, my results were negative.  Why is that a bad thing might you ask?  Well, I just wanted a solution - if I had CD, that meant to me that cutting out gluten would make me feel better and would probably solve my constant bloating, stomach issues and migraine headaches.  I have a strong family history of CD, so I knew it wouldn't be the end of the world and I would have given anything to feel better, but that wasn't in the cards yet.  I continued my healthy diet and got a diagnosis of IBS instead - ugh.

Fast forward to my dietetic internship, I was still having problems... but I discovered probiotics and they changed my life - I kid you not.  I still had occasional migraines and pretty consistent bloating, but I felt a million times better than I had before.

Life continued on and a year or so later I started graduate school.  In July of 2009, I started getting plagued by the worst migraines I'd ever had.  They were lasting for days on end and nothing was helping - I'm not too big on using pain medication, which is a huge downfall in migraine treatment.  If you get migraines, you know that the longer you try to hold out, the worse they get.  Unfortunately, other than Excedrin, I don't have many options.  I'm allergic to triptans and the FDA discontinued Midrin, which worked the best for me.  I was at a huge loss.... so I turned to acupuncture and it helped reduce the number of migraines I was having.  However, it still wasn't enough - have you ever taken a huge exam feeling like your head is going to explode?  I must have taken at least 3 exams that winter quarter with horrible migraines - fortunately, I always did well and started joking that I did some of my best test taking in with my migraines along for the ride.  I've been getting migraines since I was 6, so believe me when I say, I can do anything with one - work, go to school, take an exam... but who really wants to live life that way?

In January, my aunt (a family practice physician) suggested that I try an elimination diet.  She sent me a copy - bascially, you cut out the major allergens and then re-introduce them to see if you have a sensitivity to any particular one.  I wasn't committed enough to try them all, but I decided I would cut out gluten for a month or so, even though I was convinced I didn't have a gluten sensitivity.

Oh my - after only 3 days I started noticing a difference.  I was never bloated anymore.  My stomach never hurt.  I was sleeping better.  I could think clearer.  I had 0 migraines. I wasn't as dizzy as usual when I stood up (that's another story in itself!).  Clearly, this was all in my head.  After a month of this, I said okay time to test it out.  I went to Bruegger's and ate a bagel - my stomach hurt.  Shhh... I told myself, you just aren't used to it.  Then, a Kashi pizza... then some mac & cheese.  By Friday, I felt like I had been eating razor blades and I spent the weekend dying on the couch.  I happened to have a follow-up appointment with my doctor for my migraines - I told her about my discovery and  she insisted that I be re-tested for CD because of my strong family history (err..the RD in me said umm, I have to be eating gluten for awhile for this test to be accurate, not just a week, but I let her do it anyway).  My test was negative again.  My doctor told me she didn't care if I followed a gluten-free diet if it made me feel better as long as I didn't become anemic or lose weight.  My migraines improved so much that I stopped going to acupuncture. 

Since that time point, I've pushed the envelope once on purpose and a few times on accident.  The end result has almost always been the same - immediate bloating and stomach problems following by a horrible migraine about 4 days later.  Over the summer, I became extra diligent about watching out for gluten.  I've had minimal migraines since the fall - the only size bottle of Excedrin I have is a tiny travel size.  I've had one slip-up since then when I didn't read a label on corn tortillas - luckily, a migraine didn't take place after that.

Unfortunately, there are no tests at this time for gluten sensitivity.  However, researchers at the University of Maryland (where the original CD research began) have published very interesting research documenting and proving that there are differences in the immune response of people who claim to have a sensitivity.  It's interesting to me, because most people with sensitivities present with neurological problems... such as migraines and in my case this, both of which have drastically improved with my gluten-free diet  :)

So, what has this experience taught me?  To pay attention to my body and the way it feels after I eat certain foods.  I know that my body doesn't like gluten at all and can't tolerate even a little - and that's okay.  I love tofu, but I know that my stomach gets upset if I eat too much.  I know that sun-dried tomatoes make me horribly sick - weird but true.  I know that I feel my best when I take a probiotic and that I can only tolerate certain kinds of multivitamins.  Not everyone needs a multivitamin, but I take one not only because so many whole grains are fortified and gluten-free products aren't but also because I follow a mostly vegetarian/pescatarian diet.
 
This experience has made me a better dietitian, because even more so than I ever have before I think of food as medicine and every individual needing individualized  care.  I'm more sensitive to others - if someone tells me they have a sensitivity to a food, I never question whether or not it's true.  I've never asked why me, but instead I ask why not me?  Now, I understand what it's like to have a dietary restriction just like so many of the people I work with, so why not me.