Over the years, I’ve had so many reach out to me privately, seeking help, seeing solace, seeking advice, seeking answers. But the ONE question I get the most is a variation of this:
“I’m gluten-free but have not been tested for celiac. Should I eat gluten (called the “gluten challenge”) in order to get a diagnosis?”
And my response is usually in this variety:
“That is such a personal call. Since celiac is genetic, I’d probably want to get the test, but then again I’m not the one who has to eat gluten again to get the diagnosis. Good luck in your decision.”
I received an email recently that really, really explains the dilemma well. Read on.
So why get diagnosed? Because people are dicks. I don’t normally care what people think of me, but after years of hearing from servers “well do you really have Celiac or are you just on a gluten free diet?” and then being afraid they won’t take my requests seriously, I’ve had enough. Then I went to a three day music festival which had few GF options and they would only allow outside food with a note from your doctor. Years earlier I could usually get away with saying that I have dietary restrictions and they wouldn’t question me, but not now with every other person having “self imposed” restrictions (like myself) they put the kibosh on that.
So I’m on week three of my Gluten Challenge. And I’m in hell. Every hour or so I have a little talk with myself as I lay unable to move on the bed, couch, floor, lawn, if this is worth it. My legs and head feel like they were filled with cement. My head hurts so bad that when I close my eyes I see pure, blinding, white. That’s not a normal headache.
And the craziest thing is that I’m dreadfully afraid that the tests will come back negative! What if after all these years being GF I didn’t have anything wrong with me at all? What if all these horrible symptoms are psychosomatic? Is that possible? Is it possible that all my old symptoms were from some other reason? Like the red, itchy, BALD SPOT I used to have on my scalp that went away once I went gluten free? Or that for the first time in my life I have dentists visits that don’t end with scheduling a cavity filling? Or that I was so skinny in high school that people accused me of having an eating disorder?
Why am I so terrified of the idea of NOT having Celiac Disease? And if I don’t have it is it possible that the way I feel right now during the Gluten Challenge is all in my head? Please talk me down and give me some encouragement to get me through the next few months. Oh god MONTHS of this! And it could be even longer if after my blood test it takes months more to get the endoscopy scheduled!
Dude, I don’t want to do this anymore but I really need that piece of validating paper. I can do it. Right?
Ouch…do I feel your pain! A few thoughts:
1) Yeah…some people are dicks. Learning that more and more every day.
2) It is NOT in your head. You obviously have health issues and it could be celiac, but it seems it’s definitely gluten. Do not question yourself in this respect.
3) Is there any way you can schedule the blood work and endoscopy now? It may help know there is a target date.
4) Blood tests can give false negatives. So you may want the endoscopy either way.
5) Can your doctor or a nutritionist offer any help in alleviating the symptoms you are now suffering with?
6) I can’t tell you which way to go. Like I said, it is such a personal choice. But I will open this up to the celiac community. I’m sure plenty of you reading this have been in a similar boat. Please help show her the way.