Tuesday, September 25, 2012

{An Open Letter...}

Edited on October 28, 2012:
I owe a fellow blogger a big apology.  I first found Christy's blog, Truly Madly Freely, a few weeks after I was officially diagnosed with Celiacs disease.  Her words touched me.  I read her open letter multiple times a day those first few weeks.  When I realized how powerful her message was, I edited it very slightly and posted it on my blog - again, without crediting her.  For this I am very sorry.  I emailed Christy about using the letter, and didn't follow through with crediting her appropriately.    

Please note that the open letter below is nearly all from her original open letter, with very few edits to fit my diagnosis.  If you have Celiacs disease, whether recently diagnosed or not, you should read Christy's Open Letter

Dear Friends and Family,

If you are reading this, please know you are someone very important in my life.  That is why I am sharing this with you.  Sharing this is very hard, sad, confusing, and challenging for me.  I need your help. I also need you to be open to listen to and try to understand the information I am sharing.  I understand that it will likely be confusing and foreign, just as it was to me.  With your help and understanding, I hope to have a bright and wonderful future full of love, happy memories and great meals. :-)

I have Celiac Disease.  Along with this recent diagnosis, I have been given a list of 7 cross-reactants (coffee, egg, rice, white potato, corn, sesame, and soy).  In other words, my body treats these additional items just like it treats gluten and I cannot consume them.

What IS that?
By medical definition Celiac disease is a chronic digestive disorder in which damage to the lining of the small intestine leads to the malabsorption of minerals and nutrients.  The destruction of the inner lining of the small intestine in Celiac disease is caused by an immunological (allergic) reaction to gluten.  Gluten is a family of proteins present in wheat, barley, malt, rye, and sometimes oats.

What is gluten in?
Umm....Almost EVERYTHING!!  Unfortunately it’s not as simple as looking at a label and not seeing the words wheat, barley, rye or oats.  To make matters worse, the cross-reactants and their derivatives are an even longer list.  Anything that is processed has a chance of containing gluten, one (or more) of my cross-reactants, or a derivative.  Gluten can hide in terms such as malt, vinegar (certain kinds can contain gluten), dextrin, modified food starch, Bulgar, kamut, semolina, farina, smoke flavoring, natural flavors (try to find a processed food that doesn’t contain this one!).  This isn't even a quarter of the list!  The cross-reactants hide behind terms like malodextrin (corn), corn syrup, corn starch, vegetable oil (sesame), tahini (sesame), soy lechtin (cooking spray), edamame (soy),  rice oil, The worst part is that sometimes even if a product says “gluten free”, it’s not.

How do you know if something is gluten free?
Well, if I am choosing to purchase or consume a processed food items and/or eat at a restaurant, I do a ton of research (ask poor Jason!).  It seems like every single day, I am Google'ing something to make sure it is safe.  There are many safe companies but finding them takes a lot of work - sometimes Google'ing isn't enough and a phone call is needed.

Why do you have to check manufacturing processes?
Even if a product has no gluten containing ingredients in it, that product could have been made on the same equipment with other products that DO contain gluten. That “gluten free” product is now contaminated. I cannot eat it. If one speck of the gluten manufactured in the other product makes it into my mouth it could/will make me sick.

Sick.. how?
Here's where I am very lucky as a Celiac sufferer...  I do not have an immediate, severe reaction to gluten.  Let me rephrase that... I don't have an immediate, severe reaction that you can see.  To me this seems to be almost more harmful than a Celiac that has an immediate response.  Why? Because it takes me a little longer to know that I have been “glutened” and I can't always pinpoint the culprit.  Many Celiac sufferers have immediate and extreme intestinal symptoms, migraines, vomiting, and dizziness. The list goes on and on.  For me, within a few hours after I have been “glutened”, I begin to feel "off".  I become slower, less responsive, and ridiculously tired.  This causes me to have increased anxiety and mood swings.  It takes several days to get back to "normal" after being "glutened".  Sometimes the reactions are more severe than others.  Depending on the amount of gluten consumed, my speech becomes slurred and I sit down and immediately fall asleep for 30 minutes to an hour.  Not fun!  Some suffer horrible pain for weeks.  While I may feel better after a few days, damage is still occurring inside my body for a very long time.  Just because you cannot see my pain on the outside does not mean that my body is not being slowly destroyed on the inside.

"So gluten just makes you feel bad right? Then can’t you cheat once in a while, enjoy having meals with us and eat the things we make for you? That’s really the polite thing to do."
Yes, I suppose that would seem polite, right?  Think of it this way - what if I put a little bit of poison in your coffee every day it wouldn’t really kill you right away, right?  You might feel a little yucky but hey, if that’s how I make my coffee you really should drink it so as not to hurt my feelings.  Sounds ridiculous and callous, right?  Well, not to be a twit, but that’s how it sounds to me when you ask if I can just eat a little gluten.  Gluten is like a poison to me - a slow poison that will damage my insides.  A crumb will do damage that will take months to heal.

Why it’s NOT ok for me to have just a little, just this once…
The symptoms of Celiac disease can range from mild weakness, bone pain, diarrhea, abdominal bloating, and worse.  If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population.  The big “C” is just not something I wanna mess with.

is serious. This is not a fad diet I am on to help me lose weight (obviously, it isn't working...haha). It’s not cool to be gluten free even if that’s what you see in the media.  Just because a celebrity does it, it does not make my disease any less deadly or real.

Are people going to think I’m crazy? Do waiters roll their eyes at me when I have to ask a million questions at restaurants? Will I have to go without eating when there is no safe food available? Will I have to bring my own food to your parties and dinners? Will there be places that I cannot eat anymore? Will I have to decline invitations sometimes?  Yes

Does that mean I don’t want to be asked to events anymore? Does it mean everything will center around me and what I have to eat? Does it mean that I can never eat out again? Will the food at my house taste weird?  No

Just because I have to be careful of everything I eat doesn’t mean that I want to stop living. I still want to be involved in all of the same social events as before. And it doesn’t mean that I expect anyone cater to me. In fact, it is much safer and easier for me to bring my own food. 
As awesome as it is that you might want to cook for me, it is scary.  Some of the things I have to do to stay safe may offend you.  I have to ingredients you use to see if there is any hidden gluten.  Anything made in a manufacturing plant CAN contain gluten.  I know it seems like I am being over the top. But believe me when I tell you, I’m not.  I would not choose to have to go through this if it weren’t 100% medically necessary.

Please don’t take this as my way of saying that I never want you to try.  Because, if I have friends and family that are willing to make me a safe gluten free meal I will count myself as truly blessed.  I can’t just eat something you prepare so that I don’t hurt your feelings. If I do that, then I am only hurting myself…in ways that the medical field cannot even 100% understand yet.

Thank you for making the effort to understand. I am happy to answer any and all of your questions. In fact, your questions show me that you do in deed care and want to know what is going on with me. I apologize now if anything I ever say or do offends you.  It is scary what I have to deal with sometimes, but I have to keep myself safe. I want to be around for a long, long time and thrive while here.  This diagnosis isn't going to go away.  I do, however, hope that this letter will help you, as my friends and family, understand the implications of this disease.  Feel free to ask any questions.  We'll learn together!

Love to you all!

1 comment:

  1. Regan, what a thoughtful and insightful letter! I feel MUCH more educated about Celiac Disease now. I can not imagine all the heartache and turmoil you must have been through to get to this point. You are a bright, beautiful lady and I have big hopes for you and your bright future, especially now that you are able to take control of this issue. I pray for you to continue to do well with your new diet, and that easier days are ahead. (((HUGS))) friend.