Celiac Disease: A Quick Primer (and Why “Psychosomatic” and “Autoimmume” Don’t Mean The Same Thing)

“What exactly is Celiac Disease?”

We’ve all been asked this question plenty of times, from people with either well-intentioned, or suspicious tones in their voices. While many people have heard the words “Celiac Disease”, the average non-sufferer generally has one of more of the following misconceptions about it:

1. It’s a gluten allergy
2. It’s something to do with diarrhea
3.  It’s something that makes it difficult to eat
4. It’s where you can’t have sugar (uh, that’s not gluten…that’s glucose)
5. It’s that made-up gluten thing that people are saying to be trendy

Celiacs get that unless you’re afflicted, chances are pretty good that you know very little if anything about it, unless you’re a gastroenterologist.

Many of us are leery about  eating out because of the fact that Celiac is poorly understood by most servers and food handlers. This can be evidenced by the number of times we see a server write “gluten allergy” when we say the words “Celiac” and “strictly gluten-free” when making out restaurant orders. We wish it was merely an allergy or intolerance that we could pop a Lactaid, Beano, or carry an epi-pen for. But it’s not. It’s currently a lifelong disease with no cure.

If we do find a server in the know, they will usually respond to our delighted shock with “my mother/sister/friend/father/brother has Celiac Disease, so I totally get it!”

Because there are so many misconceptions about Celiac Disease (and also because of books like Wheat Belly, Grain Brain, Paleo, etc, and their subsequent gluten-free rush that has been having a bit of a run on the fad-diet circuit),  there are more than a few people out there that think that that the need to eat gluten-free is elective, and that our “trendy” disease is all in our heads.

Wrong.

After all, it’s an “autoimmune” disease, right?  And doesn’t “autoimmune” mean that you’re doing it to yourself?

Errrrrrr….not in the way they’re thinking!

But don’t take my word for it.  Take Dr. Google’s:

au•to•im•mune (adj.)

of or relating to disease carried by antibodies or lymphocytes produced against substances naturally present in the body

Or how about medicine.net?

“……people with autoimmune diseases frequently have unusual antibodies in their blood that target their own body tissue”

Merriam-Webster’s dictionary anyone?

So, Autoimmune diseases aren’t just crazy-ass fantasies that hypochondriacs invent to get attention. It’s our own immune systems attacking our healthy cells, as in our case they are misreading gluten as an attacker that needs to be neutralized.

It’s like using an assault rifle with real bullets on an imaginary intruder, and destroying parts of your house with the bullet spray, all for no good reason .  But repairing all that damage will be difficult and time-consuming.

And as for Celiac?  No one in their right minds would want to fake this sucky autoimmune disease!

Now take a look at the difference between “autoimmune” and “psychosomatic”  (that’s where it’s all in your head”):

So while some Celiacs….

1.  may experience gluten allergies on top of their Celiac Disease
2. may experience diarrhea (silent Celiacs exhibit no symptoms, but their intestines are still being destroyed by ingested gluten),
3. find eating out can be challenging
4. may be diabetic as well and avoid sugar

The truth is that ALL Celiacs…

5. are NOT making up their disease. It’s a real physical illness that takes years of strict gluten-free adherence to regain proper intestinal function in adults, but is never cured. One crumb of gluten can set off the damage again.

It’s socially isolating. It’s about being excluded from most if not all of the hors  d’oevres at functions, pot lucks at work, boxes of donuts brought in,  food on buffets, Chinese takeout, etc.

And regardless of the half-truths and misconceptions out there about our disease, the fact of the matter is that we’re just people trying to live as normal a life as we can.

We just have much more precise food handling requirements and wordier restaurant orders!