Saturday, February 27, 2010

I just don't buy it....

It is crazy how common having celiac is, and I feel like I meet people with it everyday. And usually it is a passing encounter like in the gluten-free section of the grocery store, so I don't have time to talk about specifics, just kind of say, "what is your favorite pasta?" and really that is it.

But the other day I met with someone who had it too, and we had some time to spend together so we got a little bit more into it. She has had it for 10 years, so I felt like I was up against a pro. We talked about the obligatory, how long have you had it, what were your symptoms, etc.. But since I had a few hours to sit there, we got a little more into it.

We were talking about what foods we missed, and I said something like it was still possible to make most of those foods with GF flours, and she shocked me by saying that she just gives in and will eat some of her missed items once a week. I was in shock. I was thinking, maybe she is not diagnosed celiac, but she was, 100% celiac with a family history of colon cancer. She went on to tell me how once she got gluten out of her system, she was "able" to reintroduce a little bit at a time. "That is all about reintroduction," she said she will have regular pasta once a week and still buys "whole grain" bread, because at least it is better for her than cheap white bread. I was completely flabbergasted. And it made me feel like a gluten nazi, when I said how I won't even touch the stuff. I asked her if she worried about gluten in shampoos, lotions and soaps and she said that she didn't because she buys organic...what???!!! Organic does ≠ GF, if anything there is probably more gluten in some of those products, because that is what is making it "natural". I was at a loss for words.

Now, some people who know me will think that every time someone tells me they have a symptom I will immediately diagnose them with celiac, that I just think everyone has it these days - ha! And while I know the facts and just how common it is, I am also not going to preach to someone about it. It was interesting, because she was pregnant, and she also told me how she gets really bad eczema...I wanted to be like, "duh, you don't say??!!" But, I kept my mouth shut for the most part.

The only thing I did say was, "you know it still does damage to your body when you don't feel the effects". She answered that she knew, but she just doesn't want to get "all crazy" about it, she doesn't read all labels or use vitamins. But then she went on to say, she has even had to go to the ER because of had bad she has felt when she has had it, but it still doesn't deter her from continuing to eat it.

I was just so in shock with the different outlooks we have. Me, who avoids it like poison down to what shampoo and lotion I use, to this woman who still buys whole grain bread because she feels it is better. I definitely don't want to be in pain or cut my life short because of some easy changes that could be made. I would hate to look back and see how I could have easily changed things. This was honestly my first time meeting another celiac with this laid-back attitude.

In the end, I guess it is not my place to say anything. But wow, it just blew me away!


  1. Wow...I am just as shocked as you!!! I have never met someone IRL with that attitude, but have come across a few online. I wouldn't dream of "cheating". I also get very ill with very little CC, so I have some extra motivation. That being said, this woman is still having symptoms, like you said, they just aren't obviously severe.

    I am like you - I scour labels & check everything down to my make up & shampoo. I have never even thought of eating gluten as an option.


  2. Those kind of stories eat away at me. Seriously. I'll be thinking about this one for a while. I've heard the number of people who cheat is very large, like 40% or even more (I think I try to block it out, it's so painful). When people who are celiac or gluten intolerant continue to eat gluten, they never know how good they can feel so they keep on a perpetual bad level, so to speak, and sometimes have serious episodes like she mentioned. She's harming herself and potentially her unborn child, as stillbirth, miscarriages, etc. are related to celiac. But, all that said, IF we could STOP getting folks to say how hard the gluten-free diet is and to promote it as an opportunity to finally know what you are eating, eat healthier, etc., I think it would go a long way. And, of course, tied into that would be the promotion of real food and naturally gluten-free meals because many of these folks also think that eating gluten free is way too expensive. If you rely on gluten-free specialty foods almost exclusively, it is too expensive.

    Thanks for sharing this, as painful as it was to read. Just thinking about eating gluten makes me wince ... even a tiny bit causes serious issues. My doctor, who is celiac herself, says that an accidental gluten ingestion takes 6 weeks to recover from fully, and I believe it.


  3. I'm really, really new at this (just diagnosed about three weeks ago) but I can almost understand some of what that woman's feeling. Of course, I am much older and more set in my ways, so perhaps that is a part of it.

    I'm not eating anything with gluten in it, but I won't force anyone else to abstain, not even in my presence. I'm just not that person, and I don't want to become that person. My problem is just that... mine.

    And as far as continuing to eat my favorite things? I'm not, but that doesn't mean I don't wish every day that I could. I plan to visit New Orleans in the spring, and while I will skip most of the regional favorites, I am very much looking forward (at least right now) to trying a pastry at the Cafe du Monde.

  4. Wow! I knew a person like that too. One of the ladies that worked with my mom also had celiac and her and my mom were the only two at all the work functions. Obviously my mother is strict about following a gluten free diet and has no problem giving up her favorite things that would make her sick. At a retirement party one year my mom watched in horror as the woman ate the creamed soup and said "well, I'll just be sick tomorrow." Later when the cake rounded, she again digged in. "I can eat birthday cake, so this should be ok." Babs and I were downright SHOCKED that this woman felt that "being sick tomorrow" was ok.

    Like Shirley said, the effects beyond the immediate reactions are FAR more important reasons to stick to the diet!

  5. I have an old friend from college who claims to have outgrown it and eats "normally" unless she's stressed - then she "relapses". My opinion is that she just doesn't have extreme effects unless she's stressed. I guess it's more stressful for some people to try and deal with it daily than to be sick (personally I think that's nuts!). I will say something to people like that though - they make it harder on the rest of us who don't want to test fate like that. It confuses non-gf people when they know someone with celiac that is so irresponsible with their health, it undermines my authority to say, "no, that will really make me sick and puts me at risk for much worse disease".

  6. Cocoa, I totally agree. People who don't follow the gf diet when they should make it even more difficult for us, especially when someone can say, "but i know someone with celiac who eats pizza." so frustrating!

  7. So sad. My mom is like this. She REFUSES to change any part of her diet.
    I explained to her that it's an autoimmune disease and that it can compromise her immune system and lead to other diseases.
    She would rather deal with the symptoms. :(
    For me, I'd rather live off lettuce if that's what it came down to.
    Like you, I didn't have the "typical" symptoms, so it took longer to figure out what it was.
    But, I would NEVER, not even for a blood test, purposely eat gluten again. Not worth the pain and agony and potential for further damage.

  8. I have celiac. No symptoms (well, very occasional and random) and otherwise in great shape with normal results on blood tests. I cheat on the diet on vacation (about a two week block each year). The stats are heavily in favour of my death being due to something else, so not letting celiac ruin my life.

  9. I guess everyone will do what is comfortable for them. For me, it is being 100% gluten-free all of the time, because I don't want to willingly do something that will cause me harm if I can help it. Not to mention, I get very sick. Everyone makes their own choices.