On the road to diagnosis…still

There’s a place that I know I should start but I cannot seem to place just where that is.  I might as well start with here today.

I’m eating gluten again.  Not because I ‘want’ to but because I have recently learned that just because I tested positive for the genetic markers for Celiac Disease that, in and of itself, does not confirm one has Celiac Disease.  It seems I was supposed to do an upper endoscopy to check the villa in my small intestines prior to going gluten-free.  If my villa are flattened coupled with the positive genetic marker blood test THEN I will have an ‘official’ diagnosis of Celiac Disease.

But let’s back up even more.  How about NO medical doctor even breathed a word about Celiac Disease to me?  I have experienced IBS (Irritable Bowel Syndrome), a distended abdomen, anemia, digestive issues, malnutrition, and general malaise for years.  The major issue I experienced over the last 10 years was extreme nasal congestion and nasal polyps that grew like weeds (sorry for that image!).  But the doctors could not tell me what my body was reacting to; all they could do was tell me what my options were for minimizing my discomfort (surgery to remove the polyps, nasal steroids, experimental drugs with unusual usage methods that cost a small fortune, etc.).

How did I figure out that gluten is an issue for me?  You’re going to love this.  I went to a holistic practitioner who wanted me to detox my body by removing ALL processed foods.  For 21 days I ate foods that came directly from the earth via the ground, from plants, vines, or trees.  This was supplemented with herbs meant to cleanse various organs and I used copious amounts of raw organic honey for its healing (and medicinal) properties.  In those two weeks, the excretions from my nose went from multi-hued to clear but it did not stop.  After a little more than a month, my ENT doctor and I decided to do a run of antibiotics and oral steroids.  This cleared up the sinus infection and completely STOPPED the nasal discharge within a few days.  Why?  Because my body was ‘clean’ now.  The cause seemed to have been found — the cause of my issue was clearly something that I was ingesting.  But, I had removed so much what one thing could it be?


So, I did the work of trying a food and paying attention to my reaction over a few days.  After a few weeks, it became clear that bread, pasta, and other wheat products created a reaction in my nose within 2 hours and within 3 days my sense of smell diminished.  If I continued to ingest gluten (in any form intentional, or unwittingly), within 10 days at the most, I would lose my sense of smell completely and the multi-hued nasal discharges would begin.

I did that original detox in the Spring of 2012.  I decided to fully go gluten-free at the end of June 2013 when I tested, re-tested and knew that gluten was the culprit.  It is now the Fall of 2014.  It has been 17-months since I have committed myself to a gluten-free diet.  I enjoyed waking up with energy, verve and a passion for life.  Gone were the the headaches, the vague phantom aches and twitches that plagued me.  I enjoyed being able to smell without the aid of medications.  Okay, back to today.

I began eating gluten again the evening of November 17th.  I thought I would enjoy Thanksgiving being able to eat all the stuffing, cakes, pies, and gravies.  I did not touch any gravy.  I tried only two desserts — and small pieces.  I stuck to the proteins (turkey, a bit of baked chicken and a slice of ham).  I ate roasted sweet potatoes with a cilantro pistachio pesto and some potato salad.  I was terrified of gluten loading and not being able to breathe correctly the morning after.  But I couldn’t resist the cornbread stuffing!  I ate so much salad to help my body!  I took papaya pills to help my digestion and made sure that I took my Singulair shortly before Thanksgiving dinner.  Totally not the feast day I anticipated.

I eat some gluten every day so that my body can do what it does.  Then, when I go for the endoscopy my doctor will see if my villa is flat, or not.  I have to eat gluten for 3 – 4 weeks and I still have a couple of weeks left.  My sense of smell is wonky.  I’ve gone through two boxes of tissues in the last 5 days and my digestive issues are back.

Don’t you love the progress of modern medical technology?

Before we go, here is a recent video of Dr. David A. Johnson.  He discusses the new guidelines for diagnosis and management of Celiac Disease.

Ta-ta for now,



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s