I feel lucky to have celiac disease.
Let me rephrase that.
I feel lucky to actually have the diagnosis of celiac disease.
I get emails like the one below all the time. They come from people who have all of the celiac symptoms, but don’t have an actual diagnosis.
Either because they went off gluten and felt amazingly better and didn’t want to go back ON gluten to get the diagnosis.
Or because they don’t have the money to get tested.
Or because the initial blood test came back negative and the lazy ass doctor refused to do any sort of follow up.
So they are stuck in this middle-ground. They know they cannot eat gluten ever again, but they can’t call themselves celiacs.
Now to me…it doesn’t matter. If you cannot eat gluten because it causes you health issues, no matter what you call yourself, we are all in this together.
But again…I get the frustration and I’d probably feel the same way.
Here’s her email. As always, if you have and advice to share, please do so. I’m sure there are thousands of people out there in her shoes who could really use some help.
I have an appointment with a gastroenterologist tomorrow, and I am really nervous about it. Over the last 10 years, I’ve been to several doctors about my joint pain, and kept being told that I just had to live with a cane because “nothing is wrong with you.”
(Dude note: Dear doctors…you suck.)
I finally started eating gluten free in desperation four years ago. Since then, I’ve had two foolish doctors test me for celiac despite my insistence that it would be useless as I wasn’t eating gluten. No surprise, those tests were negative, so I was again told that there is nothing wrong with me.
(Dude note: Dear doctors…you really, really suck.)
Gluten-free, I can walk miles, work out, have sex, and feel pretty awesome. Whenever I eat out or eat something “prepared in a facility that also processes wheat,” I need to be helped up the stairs, and sometimes have to start using my cane again.
I want an official diagnosis, because I want appropriate follow-up care and I want to be able to tell people that I can’t eat that dish at the departmental lunch because of a diagnosed condition. I hate being that crazy girl who is self-diagnosing.
At the same time, the last time I got seriously glutened, I started having trouble staying awake and started substituting words (saying refrigerator when I meant epistemology, for example). I’ve just started grad school. I don’t know if I can do a gluten challenge.
I just needed to articulate my fears to someone who understands that food can indeed cause joint pain and other, non-gastrointestinal issues (though I have those too, yay).
I don’t know whether this doctor will dismiss me as well. I’m scared of having to have that conversation again where I’m told that there’s nothing wrong with me despite all of the evidence to the contrary.
Dear NON crazy girl. It seems as obvious to me as it does to you that gluten causes you hell. I guess my question to you (said with love) is this? Who gives a shit what the doctors say? And even more so, who gives a crap what other people say?
Now…I’m in my 40’s and with age comes an amazing feeling of not caring as much what others think about you. It’s one of the few beauties of aging. I assume you are a bit younger and don’t have that confidence yet. The sooner you can find it, the better off you’ll be. I know…easier said than done.
I have no issue with telling people to use a white lie and say they have celiac disease if they know they can NEVER have gluten again but they just never got an official diagnosis. If gluten is poison to your body, that’s a serious medical condition and whether you call it celiac disease or not, you have no reason to apologize for it.
Dude note: I was just about to post this live when the above woman (not Miley Cyrus…the one who emailed me) JUST sent me another email. Here’s what she said:
The GI was nice but not very helpful — he said I had IBS and fibromayalgia and probably also needed to see a psychotherapist. I saw a rheumatologist after that who said that she could rule out everything else (including fibromayalgia) and that my symptoms sounded like the arthritis other celiac patients of hers have had. She said that given that I can’t tolerate food that is tested to greater than 10ppm of gluten, and the nutritional deficits she discovered (anemia, which is resolving on a very strict gf diet — no eating out and only whole foods and limited certified gf foods at home — and vitamin d, which she said may never resolve entirely, or at least that’s her experience of treating celiac patients) she’s comfortable calling it celiac or NCGS without further testing.
I’ve run out of money and energy to pursue this further, and I suspect that even with a DX, I wouldn’t get much more help from professionals. I did see a psychologist, and she said “you’re not crazy or suffering from and eating disorder — you have a scary reaction to certain food that is understandably upsetting.”
So I finally got two professionals to take me seriously and now I’m taking myself seriously and being as strict and careful as I need to be. I’m finally starting to be able to work out, which I hadn’t really done in 4 years. I should have just listened to my body earlier, but having that professional support does make it easier for me to demand that other people take me seriously and respect my needs.
There is indeed nothing else to pursue. You’ve got either celiac or NCGS. Take care of yourself. You deserve to feel good.
Do we call this a happy ending?