Saturday, May 9, 2015

Leaving the Stage of Denial....

It's been six months since I blogged, I know.  I've been busy living my life, honestly.  I have survived another semester of school, after taking a three year break, working hard (mostly) at my job, and (to be completely honest) wasting time on tumblr.  The last six months have involved laughter and tears, joys and hardships, and they have kept me very busy.  However,  this post has been in the makings of my brain for the last few weeks now, and this evening I finally found time and motivation to write it. It seems fitting that my post on Celiac Disease be during the month of May, which is National Celiac Awareness Month.

About three or four weeks ago, I was officially told by a doctor that I do, indeed, have Celiac Disease afterall.  I've never actually gotten a diagnosis on it before, my previous doctors who attempted to figure out what was causing my health issues were....to put it nicely....not very educated or familiar with Celiac.  I remember one of them looking at my test results and saying "Does this mean you have Celiac Disease?  I don't know."  Well, gee Doc, thanks....I'm kind of paying you to know, but okay....
My neurologist, who I was seeing about some other unrelated health issues I've been experiencing (a subject for another day), took one look at all of my test results that my other doctor had and told me that I do have Celiac.  Okay then....good to know. 

I've been living gluten free for a few years now. While my previous doctors couldn't tell me whether I had Celiac or not, they had simply told me that since it obviously  makes me feel sick, I should just not eat it.  However, since I didn't have an official diagnosis and they couldn't tell me whether I was just gluten intolerant or if I had Celiac Disease, I simply acted as if it was a gluten intolerance.  I ate gluten free...but I wasn't worried about cross contamination and I was extremely careful.  Essentially, I've been in denial...for a very long time.  As long as I told myself it was an intolerance for gluten, I didn't have to be super technical and careful with my diet.  Now, however, my days of denial have finally come to a close.  Since Celiac Disease is more serious than being gluten intolerant, resulting in extreme damage to one's intestine and body if gluten is consumed, my diet must now be much more strict.  (Those who are gluten intolerant usually must be just as strict, diet wise, in order to actually feel better.  The difference is simply now I can't turn a blind eye and eat questionable items because I am willing to accept feeling ill...because now I know any gluten consumption results in physical damage to my body).  Gluten seems to be present in almost everything these days, including things you wouldn't have ever thought would contain it.  I'm just thankful I do not have it as bad as some people, who will break out in severe hives and rashes upon skin contact with gluten.  However, I did spend a few days moping after my nerologist informed me that I do have Celiac Disease...I stuffed my face full of candy and gluten free sweets (contrary to popular belief, gluten free does NOT automatically mean healthy.  There are plenty of unhealthy and processed gluten free foods that help you pack on the pounds, let me tell you).  The idea of tightening up what I already found to be a restraining diet was not exactly a pleasant idea. 

So many people seem to think that Celiac Disease is simply a stomach issues, where your stomach doesn't agree with gluten. However, there are many other symptoms of Celiac Disease that do not involve the digestive system or stomach pain (although the stomach pain is very real and very terrible as well).  People seem to think it's a simple fix...don't eat gluten and you'll be fine. Easier said than done, my friend.  While there are many 'worse' diseases out there which involve lots of difficult treatments, that doesn't make Celiac any less serious...or the treatment any easier.  Celiac Disease is a serious autoimmune disorder.  If left untreated/gluten is continued to be consumed, it can and will result in death. It also can lead to infertility, osteoporosis, other autoimmune disorders, diabetes, and cancer, when left untreated. When gluten ( a protein found in wheat, rye, and barley, and also an ingredient added to other foods to increase shelf life) is consumed by someone with this autoimmune disorder, their immune system attacks their body.  Villi, which coats the intestines, is worn down by gluten consumption in a Celiac, and once destroyed, the body does not absorb nutrition, causing malnutrition (this explains why my hair was falling out a couple years ago). Below is a picture of both a normal intestine with healthy villi and a damaged intestine where the villi has been destroyed.

 If you don't believe how serious Celiac can be if left untreated, you can go to this young lady's twitter, where she has photos of her before she was diagnosed and went off of gluten (https://twitter.com/therawmonkey).  I didn't want to just pull people's pictures off the internet and post them on my blog. Or you can just google information on Celiac Disease.  It's real and it is serious.

Many people with Celiac Disease also cannot consume coffee, dairy, or corn (among other things), as they can create the same reaction as gluten does in the body of a Celiac.  While dairy doesn't seem to affect me (I've never felt sick after consuming dairy products...thankfully!) unfortunately, corn and coffee both seem to cause antibody reactions in my body. (I recently rediscovered that coffee can cause this reaction in those with Celiac.  I had read it a while back when researching Celiac Disease, but then forgot the information in my stage of denial.  However, from what I've read, 10% of coffee is a protein is cross reacts with gluten antibodies).  Goodbye coffee...you will be missed, but thank the good Lord, there is tea and chai lattes.  As for corn, I tried to ignore the fact that corn was a bad idea...but after so many times of doubling over in extreme stomach pain after eating corn products...I gave in and it is no longer something I will eat. I now screen food products more carefully.  Products that have no ingredients that contain gluten are often times processed on machines that also process wheat products...and are thus cross contaminated.  Goodbye, Snapea Crisps....you were one of my favorite 'gluten free' snacks.  Even a delicious orange marmalade  my family bought that I put on my gluten free toast 'may contain traces of wheat'.  I put it on my toast without thinking to look at the ingredients.  I figured it had to be safe, I mean, it's just marmalade!  Wrong.

The good news is that my most recent blood work showed my antibody levels are now normal, so that tells me I've been doing well with keeping gluten out of my diet. Well not necessarily pleasant or easy to make sure that I don't accidentally consume gluten, I know that it could always be worse...and it could have been something that can't be managed.  However, I think it's important that people are better informed and educated on Celiac Disease...which is part of why I have typed up this lengthy blog post.  Many people dismiss Celiac Disease as a trendy, expensive fad and those who aren't eating gluten as high maintenance people who are being difficult just to be hip.  But, those of us with Celiac Disease, we're not trying to be difficult, to be the center of attention, or because we love paying extra money for smaller gluten free products.    The truth is, we're just trying to survive.