The Gluten Free Diet....sometimes it just sucks

I just read this blog entry form another person's gluten free blog....The Gluten Free Diet--Sometimes it just sucks

I completely agree with all of the emotions brought up in the blog entry and the comments on the post.

I have been relatively "fine" lately, diet-wise.....but that doesn't mean it's always easy. Sure, it's been 19 months of gluten-free living (and still, no cheating!)....but that doesn't make social situations, which we all know often center around food (and mainstream party/social food tends to be chock-full of gluten!), any easier.

You really don't get just how much our lives revolve around food (which is really kind of sick/pathetic when you really get right down to it....I mean, here I am complaining about not being able to eat gluten when there are people in the world STARVING).....until you are faced with some sort of food allergy or intolerance.

Anyway, I could go on and on about that all day....

I'll just steal a couple of the quotes from the blog entry I mentioned above and the comments after it that really resonated with me:

"Sometimes being forced to be on a gluten-free diet just sucks. There’s no getting around it. I wish I could run out and grab a slice of pizza or get a sandwich at my favorite deli for lunch."

"Sometimes I just want to be able to eat a Twinkie or a box of Wheat Thins (of course I haven’t eaten a Twinkie since I was in elementary school, but somehow knowing that I won’t ever be able to eat one again makes me mourn the loss)." I know it probably sounds super overly dramatic to talk about "mourning a loss" when it comes to food...but it does stink to go without old favorites, such as bread bowls from Panera, Oreos, etc., etc.

"In the last year I have become so adept at eating/living gluten-free it has started to seem less like a burden, but it still is really hard sometimes." Absolutely agree. Most days it is so easy, basically second nature. However, there are days when it is truly hard.

"I usually don’t have that much of a problem sitting at a table while other people eat, but I had already been so demoralized by the previous evening that this was just too much. I fought back tears and tried to silence a rumbling stomach as we talked business." It really stinks sitting at a table full of people eating when you can't eat....or people enjoying the bread basket before a meal at a restaurant that serves bread (especially when you know how delicious it is!)

"In general I am a really positive person, but sometimes it really just sucks to be gluten-free." 'Nuff said! :)

"I’d say those social situations where someone thinks they have done you a favor are the hardest. And when someone takes a bite of an incredible sandwich, and they want to offer you a bite." Agreed. It is awful to know that a friend/family member really, really tried to take your diet needs into account....but to know that, somewhere in the preparation, a mistake was made. What do you do? Chance it? Or, turn it down? UGH!!!!!

"I hate feeling like a burden when I’m a guest." YES, a thousand times, YES!!!!!!!!

"What I hate more than anything is that gluten free eating has killed any spontaneity in my daily schedule. I hate planning my meals and researching every restaurant. I want to be in a rush, grab a sandwich, and keep on rushing. Why aren’t there more grab-and-go GF foods?" Being a rather busy person (I know we all are! :)), it really stinks not having many grab-and-go GF foods like a simple sandwich or something. Honestly, I go without lunch most days....or just snack on things that aren't as healthy or fulfilling as a good lunch. That probably doesn't make me the most productive or pleasant in the afternoons! :)

"It’s not like this all the time, obviously…but sometimes." It's not; it truly isn't. And, the longer I am on this diet, the easier it truly does become and the less "bad" days I have.

“a little bit won’t hurt you” Some people say this and/or ask related questions. No, no, no! Sorry!! A little bit, a lot....it doesn't matter about the quantity! I have gotten the sickest from the smallest amounts of gluten (from supposed cross-contamination).

I don't really mean this post to be as "negative" sounding as it is.....I just wanted to take the time to post a reaction to that blog post that I just discovered tonight :).

All in all, things are going well on the diet-front of life :). I did have a running mishap a few weeks ago that is surely due to gluten and some cross-contamination SOMEWHERE...if you dare (it's prettttty gross, as I am sure you can imagine!), go read it HERE: The Crappiest Run of My Life

:)

Have a wonderful day, all!

Rachel

News....

So things have been busy...but I should get back into my old "blogging" habit! :) Recent happenings include, but are not limited to the following:

I attempted the "CORE" Weight Watchers diet plan with my friend Jillian for a week...talk about torturous. I craved refined sugar like none other!

I met my first "internet friend", Kristin, in person

I made some delicious gluten free chocolate mint cookies and sent 62 of said cookies with Jeremy to work this past week for a "food day"....to rave reviews!

I sampled (TWICE) the new GF Valencia orange cake from Starbucks...it's so good, it's honestly crave-worthy, as evidenced by my need to get one on Thursday for lunch! HA! Not exactly a balanced lunch, but it was delicious!

I discovered that Naturally Yours here in Bloomington carries fresh baked goods...including a delicious raspberry muffin that I gleefully sampled

I am still asked quite regularly what gluten is

I've made a number of gluten free meals here at home for a number of guests

....I found out I do NOT have Celiac Disease.........yeah! Weird, huh?! Well, I have
"gluten intolerance" or "gluten sensitivity"...so really, nothing will change in the arena of my diet/current lifestyle. But the knowledge that I don't have an autoimmune disease is a good thing.

Ok, so I had my follow-up appointment post genetic testing with Dr. DeWeert, a GI here in town, on Tuesday.....and....I don't (yes DON'T) have Celiac Disease....I don't have either of those 2 genes that predispose people to Celiac Disease! 35% of the population has at least one of these genes in some form and I have NOTHING! When I first went in to see Dr. DeWeert a few months ago he told me that he was pretty darn sure the genetic testing would come back showing that I had at least one of the genes. I definitely have gluten intolerance according to Dr. DeWeert, though, and I am not arguing with that! Gluten is definitely key in whatever was screwing me up for so long...eliminate it and I am suddenly basically fine. Also, I can definitely tell if I had something that was "contaminated"...or at least I think I can. What if it is in my head?! Well, I don't think some of my....err...SYMPTOMS ;)...can be just "in my head". So, now I am in this weird non-Celiac but still gluten-intolerant population. I did some reading about this recently, too, when it became apparent that maybe this was the category I fell into. People talked all tragically about how they feel "forgotten" since they don't have the "label" of Celiac Disease but still have the same symptoms...just don't have the auto-immune disease component/etc. I don't plan on being that tragic about it ;).
Well, like I said though, nothing for me is going to change...I mean, it's obviously good to have this information and I may even try something glutenous (since I know it won't permanently damage me) at some point...but the thought freaks me out!!! I don't know if I can really bring myself to do it. I mean, sometimes it sounds really tempting (bread bowl from Panera anyone?!)...Obviously I know what I was like pre-diet-change and don't really want to go back to ANY of that suffering! Plus, there is a tiny percentage of Celiac's who supposedly DON'T have the genes ;). I totally recognize it's a long shot...but I could be in that ;). HA! I hope people don't use this news as some kind of excuse to be less careful around me. It's still totally obvious that I get sick when I have gluten...boy oh boy. I have to admit, though, sometimes I do doubt myself...like, am I just some kind of hypochondriac who made all of this crap up!? Then I remind myself....um, no...not likely! This isn't exactly FUN. It's been incredibly hard and it's definitely not about getting attention or anything like that. I don't even LIKE being the center of attention/having something "different" about me! Not to mention the fact that, well, there's no way that practically pooping my pants after eating gluten can be just IN MY HEAD! HA!
I just read on celiac.com : In some rare individuals, especially some men, a negative genetic test may not exclude the possibility of celiac disease anymore than a negative blood test. Men more commonly have negative genetic tests and blood tests, especially older men with long-standing severe disease.
Well...I'm clearly not a man. And definitely not an OLD man ;). But who knows!!!
Well, for not I am content....I don't have Celiac Disease, but my body still hates gluten. That's fine...with all of the support I've been getting, I've been doing pretty darn well. I am finding things to eat that I actually enjoy and I am not suffering by any means! So, bring on the rice pasta and the Chebe bread! :)