Thursday, August 04, 2016

I've got what?? A chance to heal myself!

Once again I've been quiet for a while, over a year.  By the time I garden, knit, cook, work, take care of the dogs, oh and live, I just haven't had time to blog.  But now I have a new reason to share.  I've been diagnosed with Celiac disease. 

What is Celiac Disease?  It is an Autoimmune disorder where the body attacks itself, destroying the lining of the small intestine where all the important digestive activity happens, namely nutrient absorption.  But it is treatable!  Most autoimmune diseases are not. This autoimmune response is triggered by the ingestion of Gluten.  Gluten is found in wheat, barley and rye.  There are variations of these ingredients in all sorts of places so you have to know what all the names are.  It's ok, there's an app for that!  This disease is only treatable by eliminating gluten from the diet.  There are no other miracle treatments.  As little as 1/8 of a teaspoon can trigger the response.  That is barely the tip of your pinky.   Once the autoimmune response is triggered the small intestine is damaged.  It will continue to get damaged or not heal until all gluten is eliminated.  How long it takes to heal depends on the person, I've read anywhere from 6 months to 2 years and some people never completely heal.

Celiac Disease.  Well that's a hard one for a foodie who has just once again started traveling internationally for work to take.  I wasn't deathly sick.  Surely my doctor was mistaken.  She showed me the bloodwork results.  Then after the 4th time she told me I had Celiac Disease she looked at me and asked "how are you feeling today?" and that's when it sunk in.  The last couple of months I hadn't been well.  I had been functioning but barely.  I had made excuses as to why I wasn't feeling great.  I had a couple of bouts of "a stomach bug" and my gut hadn't fully recovered.  I wasn't eating enough fiber.  I wasn't getting enough sleep.  Too much wine.  Mostly I just didn’t have a lot of faith that the medical community would find anything if I complained.  I am biased after 5 years of trying to get a diagnosis for what ended up being Lactose Intolerance.  I had mentioned in passing these episodes of "stomach bug" to my doctor while at an appointment to follow up on my severely low B12 level.  I was more concerned about the B12 level than anything else.  Luckily my doctor ordered some extra tests with the bloodwork I was already having to check my B12 level.  Luckily.

I spent the first weekend going through the stages of grief while also telling myself it could be worse.  My neighbor was going through a battle with lung cancer.  She had been through radiation and chemo.  I just had to give up gluten.  I mean really, time to suck it up buttercup!  But it's still it plays with your mind, at least to start.  My body was attacking itself.  It was a chronic condition.  I could never have fried clams and chips (I eat those once every 5 years, if that).  I could never go out for Chinese food again (something I haven't done in years and actually, yes I can).  How was I going to safely travel?  Never mind having to give up great bread in France and Germany and all that wonderful beer in Germany.  How was going to eat at all while on the road?!  I was going to have to give up my job even though I had finally found a great company to work for and a role I really liked.  I kept reminding myself it could be worse.  It was hard to stay in that space.

Thankfully I'm a very solutions oriented person.  I see a problem and I say to myself, "what can I do here?".  So the research began.  Knowledge is power.  It's also comfort and strength.  I knew what the Celiac diet needed to be from working with Celiac clients in my former life.  I've been an avid food label reader for years.  I just needed to know the hidden sources to scour labels for.  Easy.  Step 1 competed.  App downloaded.  I got rid of the items in my house that contained gluten; soy sauce, Worcestershire sauce, etc. and replaced them with gluten free versions. I discovered I didn’t eat a lot of gluten during the week anyway.  Pasta once a week, the occasional wrap.  Easily replaced with gluten free or alternatives, quinoa instead of pasta, lettuce instead of flour wraps.  The weekends was when I was indulging in more gluten, breakfast sandwiches, toast which was why I felt worse on the weekends.  I see a breadmaker in my future!  But before I ran to the internet to order one, I'm still in the learning stage.  Let's see what further research reveals….

I can cook.  Anything I want I can make it myself.  I was doing that anyway.  I had been making my own salad dressing for a while simply because trying to keep a nice variety of bottled dressings was a challenge.  They always expired before I used them all!  A lot of things were already gluten free.  Even the snacks at work included a selection of gluten free items without anyone consciously buying gluten free. Cool Ranch Doritos are gluten free!  I had picked up some sausages in a can while in Germany before my diagnosis.  I can't find a decent translation of what kind of sausages they are but they have a gluten free label on them.  The foie gras pate I bought in France is also gluten free.  Ok this wasn’t going to be that hard….

I did a run through the Lindt store and I can't have the Lindt truffle balls (they have malt in them which comes from barley) but the bars were fine.  The Ghirardelli squares are also fine.  Apparently ingredients can change so labels must be read always.  Remember how I said as little as 1/8 of a teaspoon can trigger the autoimmune response?  Well cross contamination is a real thing.  Manufactured foods that share a line with gluten containing foods (like the Lindt truffle balls) need to be thoroughly cleaned or they run the risk of contaminating foods that otherwise wouldn’t have gluten.  A butter knife used to spread butter, peanut butter, jam on regular bread and then double dipped in the jar….. Nope.  Cutting board used to cut bread must go right in the dishwasher.  Surfaces must be clean.  Okay, again all this stuff is easy for me.  I did an advanced food safety course years ago.  I am all about avoiding cross contamination.  If you've ever seen me spatchcock a chicken, prep it for the oven and then clean down the area, you'd see really cross contamination avoidance in action! 

You might say, but really, 1/8 of a teaspoon, surely you would get that much from a cutting board?  The way I look at it is that there are always going to be minute bits missed but if I’m super careful about cross contamination risks then those little bits I'm missing won't exceed the 1/8 a teaspoon.  Plus they add up, a crumb here, a crumb there and boom trigger pulled!  I figure it is better to be vigilant for the stuff you do know and not think, oh it's only a smidge, it won't hurt because there is the risk there will be something hidden, missed or forgotten.

As I said, knowledge is power.  Well so is support.  I found an excellent resource called "The First Year: Celiac Disease and Living Gluten-Free" by Jules E. Dowler Shepard.  It's really helped.  I highly recommend it.  I've also reached out to the local Celiac Association and am waiting to hear back about becoming a member.  I've subscribed to Gluten-Free Living magazine and ordered a few cookbooks.  Even though I feel well equipped to deal with this diet, I am still going to ask my doctor for a referral to a dietician just to be sure I’m not missing an important supplement or hidden source, etc.  It's hard to sort through the fad diet stuff versus the real "eating with Celiac Disease" stuff.  A lot of the fad diet stuff is a little too over the top for me.  I don't need to give up dairy or become a vegan.  I've got enough to deal with the gluten, thank you very much.  This needs to be sustainable, for life, not some passing fad! 

Today's lunch.  It's what I would normally have and it's gluten-free just by default!

Next week I'm attempting to bake and make my own granola.  Stay tuned!