The time I went raw… and accidentally stumbled upon a diagnosis.

March 8, 2013

It’s been a week since Rich and I made the decision to go raw, and yet it feels like I’ve gone through a lifetime of change.  The things I’ve learned about myself, about chronic illness, about inflammation, and finally, about food allergies are almost overwhelming.  As you know, the ordeal I’ve been through has been emotionally and physically trying, so on a whim I thought that going raw would make me just feel a little better.  What I didn’t realize was that my decision to do so would open up the possibility that perhaps it’s not lyme at all (after all, every SINGLE test was negative), but instead a severe food allergy.

I know what you’re thinking – you can’t just wake up one day and be allergic to something.  I actually agree with that to an extent.  However, if you take a look at the past 8 years, my history of stomach issues, severe life threatening cases of pancreatitis, and now this, it all starts to make sense.  In 2005, while living in Rome and studying the Italian language, I was hospitalized for two weeks for a severe case of pancreatitis.  There was no known cause at the time. However, I was living in the land of pasta and cheese, indulging in all that it had to offer.  I “got better” but never truly felt myself again.  In 2008, it happened all over again. What if I was eating something I couldn’t, and it was actually destroying my insides?  A scary thought – but not unlikely after this week.

Also, I’ve also had an itchy small patch of red skin on the back of my neck since I was about 16.  I’ve been to three different dermotologists over the years who have said, “oh, this will go away soon.”  I’m 27. It’s still there.

So how does this all connect?  Well, the second I cut dairy and wheat out of my diet, my life clearly changed.  It’s been 7 days. – I’m down 11 lbs of water weight, oh, and the itchy skin patch?  Doing awesome.  Not itchy, and looks like it’s healing for the first time in almost 12 years. 

When I met with the lyme doctor, he said that if the tests came out negative, that I should keep taking the meds just in case, but to explore other options.  And that is precisely what I did.  Yesterday, I met with a group of doctors who finally validated my progress and confirmed what I have been suspecting all along:  that there is a ridiculously high chance that I am allergic to at least wheat, and perhaps the protein in dairy as well (no, not lactose intolerance, a legitimate allergy).

We talked for a very long time about my history, and the doctor began to piece everything together.  What blew me away was when she finally asked, “by the way, do you have any skin issues or strange rashes?”  I responded, “I don’t think so,” and then immediately YELPED – “YES! I can’t believe I forgot to mention it!”  She smiled.  (After doing some of my own research people with celiac or gluten intolerance often have this EXACT thing, and one of the most common places is on the back of the neck).  OK, I just got chills.

“You’ll Likely be a Gluten Free Girl for Life,” and other blessings.

After hours of going over everything, it was clear to the doctors that I had actually stumbled upon my own diagnosis by way of an elimination diet.  They asked me to keep the diet I have been doing for the next four weeks, and also to be sure to eliminate eggs, peanuts and soy.  We will be “reintroducing” foods after the four week mark to do a true test.  (This is the most accurate way to test for food intolerances, as drawing a standard blood panel may not pick up on certain antibodies – it’s also a bit unncessary at this stage, considering the ridiculous physical difference I’ve shown after eliminating gluten and dairy).  However, tomorrow I get tested for the autoimmune disorder of celiac, along with Vitamin D deficiencies, a full thyroid panel, and other issues. They’ll also be testing for adrenal fatigue but are certain that the gluten has actually diminished the strength of my digestive system.  I’ll be taking certain things to heal the system and move forward with my life.

After meeting with the doctor, she introduced me to the office nutritionist, who taught me more about what foods are best raw and what best cooked.  She laughed and stated that there was not much to do with me because I was already doing everything I needed to be doing.  She also took a moment and validated my journey and and reflected on my ordeal.  I got emotional a few times during that visit – it was a sigh of relief that I was ME again, and that I was finally, finally, going to be better.

At the end of our meeting, the doctor stated, “Welcome – you’ll likely be a gluten free girl for life.”  Some people may look at this and see it as a curse – I see it as a blessing.  I’m being forced to take care of my body, forever.  How awesome is that?! Yes, I love my pasta, my cannolis, my grampy’s pizza, and a good solid bowl of mac and cheese.  But I love me more.



4 thoughts on “The time I went raw… and accidentally stumbled upon a diagnosis.

  1. Most of the things you enjoy, including pizza, can be made GLUTEN FREE!! Rice pasta is fabulous and actually tastier then semolina pasta.And yes, you can have someone make a Gluten FREE wedding cake!!!

  2. I stumbled on this quite by accident. Coincidentally, they are on 11th between 1st and 2nd!!! They make dairy AND gluten free cupcakes on the weekend. See below:
    Tu-Lu’s Gluten-Free Bakery New York
    338 East 11th Street
    New York, NY 10003

    Sunday-Thursday 10:30 am – 10:00 pm
    Friday, Saturday & Sunday 10:30 am – 10:30 pm

  3. I am so happy to hear you are becomig your wonderful self again! You are amazing. Not many people would be able to find their own diagnosis. I know your blog will help others too.

  4. Congratulations!! You are so strong and smart. It makes me so happy to read this post and see there is light at the end of the tunnel 🙂

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