Saturday, March 8, 2008

Celiac Disease

I find it interesting and weird to see how many people define themselves by their diseases. Everyone in my family has celiac disease. What it means to us is that we avoid gluten in our diet and life goes on as normal.

I belong to a large, international email list for people with celiac disease. When I read posts on this list I realize that this is definitely not the case with many people with celiac disease. So many people appear to let this little dietary hiccup take over their lives. Before I go on, I belong to this list, not to talk about our disease, but to find out news about products which suddenly become unsafe and to find out about good restaurants that are safe for us in various cities.

One of my biggest bugbears is a post that I see with startling regularity. Someone will want to know how to get their medical insurance or the IRS to pay for their gluten free food. My other one is how people see the gluten free diet as restrictive and how they worry about what they are going to eat.

I just don't understand why people feel the need to duplicate the Standard American Diet (SAD) when they go gluten free. Instead of concentrating on all the wonderful, naturally gluten free foods, they insist on trying to make fake versions of the hideous baked goods that flood the American market. Then, because it is expensive to do this, they expect someone else to foot the bill. WTF? You insist on eating an unhealthy diet and then think that it's medically necessary and someone else should pay for it?

A post came through to the list a few weeks ago that had me totally floored. This woman was complaining about how refined the gluten free flours were and how gluten free baked goods were not vitamin enriched. She felt that it was a slight to the celiac community because gluten containing breads etc are vitamin enriched, but not gluten free ones. In her mind gluten free foods should get the same treatment in the interest of fairness. Ahh, fairness, that's a topic for another rant on another day.

Do these people have no concept about good nutrition? Stripping food of it's natural nutrition and then adding in synthetic vitamins does not make it healthy. Why not eat unprocessed foods the way nature made them? Instead of eating a gluten free slice of bread that contributes nothing but calories, why not eat an apple, brimming with phytonutrients?

Whenever I come across someone newly diagnosed with celiac I try to explain to them that we have almost unlimited food choices but that we willingly limit those choices every day. When we discover that we have celiac disease, we are just changing how we limit our choices. It is impossible to eat every food available to us, so we have to self select. What's so hard about changing the selection? I wish people would stop seeing a gluten free diet as restrictive.


Rebbecca said...

I also have Celiac and am a member of the listserv. I remember the message that you are refering to, and agree with you wholeheartedly. I replied to that particular person with a response similar to your post. I'm glad I'm not the only one who feels this way about the diet.

Michelle (the beartwinsmom) said...

Ah, my favorite response to the "fairness" argument: "Fair does not mean equal; fair means getting what you need."

I hear you loud and clear. :-)

Hugs, Michelle

Shez said...

So good to know I am not alone. Rebbecca, don't some of the posts on that listserve leave you wondering what universe some people inhabit? I can never get over how entitled some people are.

Michelle, my kids are getting very tired of that response to "it's not fair". LOL. I told them it isn't going to change anytime soon.

Jaynelle said...

Hey Shez,

I was thinking of you today and came across this Gluten-free group at the Taste of Home website-

I hope you find it helpful.