This is post #2 in Althea’s series of guest posts. If you haven’t yet, check out the first post here. You’ll laugh, you’ll cry. And not only because celiac disease is linked to mood disorders.
Lots of people really suffer from celiac disease, and they don’t get the recognition they deserve. But sympathy is even harder to come by when you have a disease that doesn’t make you sick. No one understands why I even know I have celiac, let alone why I can’t go out to eat anymore. So I get all kinds of annoying questions like the above—salt in the wounds of my beer-deprived soul.
I’m a soon-to-be success story, I want to tell them. The poster child for early screening! If you found a small tumor, you wouldn’t wait to treat it until it was causing you to have symptoms, would you? Same idea!
But still, they say (or, at least, their bemused expressions seem to), you’re not really sick. Surely, a crumb or two couldn’t hurt you. Maybe you won’t have to worry about cross-contamination like your poor sister.
For most celiacs, the suggestion that “a crumb or two couldn’t hurt you” is cringe-worthy at best (and smack-someone-with-a-cast-iron-skillet-worthy at worst). And in this regard I’m your typical celiac. I mean, 20 ppm is not a lot! And what’s more, I have no idea what’s going on in my body, or why, so I really wish everyone would stop acting like I have all the answers. Maybe a crumb or two would hurt me a lot, and I wouldn’t even know it.
But that’s the thing. I have no idea what’s going on in my body. So I wonder, too. After all, it’s conceivable that I’m less sensitive to gluten than some, and that’s why my symptoms are “subclinical.” On the other hand, it’s just as plausible that my immune system is as responsive to 20+ ppm of gluten as the next celiac’s, but it just hasn’t been attacking me for long enough to have destroyed my villi. I like to think that my villi are particularly resilient, holding off those barbarous T cells with some home-front war effort, like a Victory Garden.
This is a section of small intestine showing the villi, but it could just as easily be an aerial shot of some home-grown tomato patches and heads of lettuce.
When you start imagining your intestinal lining growing cucumbers, you know you’ve progressed from confusion to delirium. To remedy this, I turned to Google, but even He doesn’t fully understand. Classifications abound: latent, silent, oligosymptomatic, atypical, classical, refractory types I and II. But as far as I can tell, doctors pretty much leave it up to patients in my situation to decide whether and to what extent to go gluten-free.
Turns out, nobody knows anything. Are we surprised, dear readers?
This baby is NOT surprised.
Photo © Jordan Brock | Flickr
And now it’s your turn. Were any of you diagnosed with latent or silent celiac, or do you know someone who was? Does anyone know if latent/silent celiacs can get away with a crumb, or am I in denial?
What would you do in my situation? And can anyone tell me what’s going on in my body and why?!
Maybe I won’t have to worry about cross-contamination like my poor sister. And that would be, for lack of a better word, awesome (sorry, Molly). Hell, maybe I can have a whole sandwich now and then. (Okay, okay…but an itty-bitty garlic knot? Please?!)
[Editor’s note: No.]
For now, I am 100% gluten-free. I even started a new tube of toothpaste. I’m hoping to start seeing some health improvements, maybe some unexpected ones. I’m really hoping that my insomnia, anxiety, and ditziness—I mean, brain fog—are symptoms, not personality traits.
But I didn’t go GF right away. In fact, I created what I call a gluten bucket list. Come back next week and read about my quest to find—and eat—delicious things my lips will never touch again.
Based on a Sprue Story 
Hi Althea. My mother died of colon cancer, she was a latent celiac for many years 😦 As you say, you can’t see what’s going on inside of your body. I am a celiac too and also have endometriosis because of it, so please, pleeeeease, be strong, and don’t eat gluten. It’s just food! Staying alive and healthy is much more important than food. It’s hard, and it sucks socially, but at least we don’t have to take any medications. But please take this seriously, this is a disease that can kill you, slowly and silently, if you feed it. A doctor once told me “Every time you eat gluten, is about a week less of life. It’s up o you how much you want to live and in what conditions.” It’s your choice, be clever 🙂 Love & Health, Irisha
Hi Irisha, I’m so sorry to hear about your mother. But thank you for speaking up and especially for sharing that quote from your doctor. It’s great that there are at least some doctors out there who take this disease as seriously as they should. (My doctor at Columbia also recommended Althea go gluten-free ASAP and brought up the new research about cancer risk.) I’m sure she’ll chime in about this herself, but she’s definitely been sticking with the diet…I make sure of that! 🙂
Irisha, I’m so sorry about your mother. Garlic knot jokes aside, I’m grateful that I got such an early diagnosis, and I do intend to follow the gluten-free diet strictly, at least until I see some convincing evidence that CC is less of an issue for latent celiacs. Thank you for sharing your story and kind wishes!
You have a nice balance of funny and serious in your guest post! To take a serious note, I’m sure there will be a lot more information about celiac disease in the coming years as more research is done, but in the meantime, better safe than sorry, as Irisha points out in her comment! On a lighter note, I’m sure there will also be more research and development in the field of gluten-free beer brewing over the next few years, so improvements are bound to be made!
I was thinking we should start brewing our own gluten-free beer. It’s not like we have enough to keep us busy as is. 🙂
I say be happy you haven’t had much of the other symptoms and thank your clean diet for that. If it isn’t broken why break it? 🙂 Eventually your villi will give up and then you may experience some extra uncomfortable things. Love your writing by the way. Very engaging.
“If it isn’t broken why break it?” Love it!
You’re totally right, and thank you! I don’t know how much longer my villi can keep this up, so I’m sure they’re looking forward to some R&R!
Hi Althea,
Welcome to our gluten free world and community. Please do not eat any gluten from now on! From all the the reading I have done to try to sort it all out, silent/latent/potential/subclinicals (i.e. you) should go GF for life (which it sounds like you already have, thank goodness!) There is a huge risk that you could develop other autoimmune diseases if you continue to eat gluten. Looking forward to reading more from both you and your sister Molly!
Jess
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So my husband and I had an argument a few weeks ago. Since I’ve been reading more and more in the blog world, I’ve mentioned Celiac sometimes. He apparently thinks it’s unhealthy for me to “adopt” a disease that I clearly don’t have. I was NOT suffering and feeling like death (like a friend of his father’s was for years before diagnosis), so therefore I couldn’t have Celiac. I have fibromyalgia. Except…when I finally went fully GF, and I purposely had gluten 2 weeks later, I had a severe reaction. NOT GI THOUGH. Which is what throws us. My reaction is identical to a fibro flare-up, which feels an awful lot like the flu. Back to GF, another 2 weeks, purposely did it again. Same reaction. In fact I get the same reaction 14 months later, but now have realized it takes a crumb. They (mother and husband) claim I’m only this sensitive bc I’ve been off it for so long. Mother wants me to ask about getting “desensitized” to it, like you supposedly can for true allergies.
Now, they both support me being GF. I was never tested bc I didn’t have a doctor able to diagnose and, well, that’s a long story. I don’t know. I kinda would like to know. But now I’m going to look up Latent Celiac.
Hi Lisa! The symptoms of celiac definitely range wildly from none at all to intense, everyday pain. And it’s becoming increasingly recognized in people who have only non-GI symptoms. Of course I have no idea if you have celiac, but I found some interesting stuff on a possible connection to fibromyalgia. This might be a good place to start: http://chronicfatigue.about.com/od/exercisenutrition/a/Gluten-Intolerance-In-Fibromyalgia-And-Chronic-Fatigue-Syndrome.htm
And you should deifinitely push your doctor as much as possible to test you for celiac, although you would have to start eating gluten again to get an accurate diagnosis, so it’s up to you if it would be worth it. Best of luck!
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