What Celiac Disease Actually Is

About 10 years ago, when my family and I were struggling to figure out what was wrong with my sister, we went to a naturopath/chiropractor that suggested she go gluten free as part of an elimination diet… just to see if it made any difference. (His fancy testing machine hadn’t shown gluten as an issue, but he thought it would be a good idea just in case.)

She HATED it. 

For one thing, none of us had ever heard of gluten free before, at least not in any way that made us pay attention. Now me, my mom, and my sister were all trying to figure out what being gluten free actually meant. Cue our mutual friend, Google. (And also books cause we’re old school like that.)

And the research was… shall we say, less than inspiring. (I’ll call it that to keep from getting in trouble for swearing.)

Basically what we could figure out was that she couldn’t have any bread or pasta (and at that point we were having pasta almost 4 times a week because it was fast and everyone was exhausted from being in a doctor’s office all day) and some other vague things that kinda contradicted each other, so we weren’t real sure where to go with that.

Since we ate bread-related things almost all the time--cereal or pancakes for breakfast, sandwiches for lunch, pasta for dinner--that meant my sister couldn’t eat anything the family was eating. She felt so weird and different having to eat something else that she pretty much stopped eating at the same time as the rest of us. 

And since she’d always hated food anyway (and my parents were raising four girls on a single teacher’s salary so there wasn’t much to go around in the first place), she barely ate ANYTHING. Our already sad meals became even sadder for her. 

(And that’s totally leaving out what happened when we tried to eat out or go to a friend’s house for dinner.)

She was “gluten free” for almost a year, with no change in her symptoms (she was bed-ridden at 13 years old). Eventually we all got sick of this incredibly difficult lifestyle that honestly wasn’t showing ANY results; my sister 1,000 times more than the rest of us.

I remember the first day she “tried gluten” again… She chose pancakes because that was our family tradition growing up… pancakes and cartoons on Sat mornings. She was SO NERVOUS that she’d have some kind of horrible reaction and end up in the emergency room AGAIN. 

But lo and behold… NOTHING HAPPENED

She was absolutely ecstatic!! She even went and told our church grandpa that his prayers had worked and she’d been cured… she could eat gluten after all!!!

But nothing changed… she didn’t get better. She continued to be in constant pain, sleeping 6-8 hours during the day and suffering horrible insomnia at night, barely able to hold her head upright sometimes. 

Fast forward about 9 years to me being in health coaching school and learning about gluten related diseases. For the first time, I discovered that there was this thing called “celiac disease.” 

And that regular “gluten free” DOES NOT CUT IT. 

And that gluten is in PRACTICALLY EVERYTHING. 

And I realized why “going gluten free” hadn’t made any difference whatsoever for my sister. 

SHE HADN’T BEEN GLUTEN FREE AT ALL. 

Not on the level a person with celiac needs. Talk about hidden sources of gluten, cross contamination, everything I know now and DESPERATELY wish I’d known then.

If we had just known the first time, we could have saved her SO MUCH. So much time, so much energy, so much pain, so much anxiety! 

We needed to know that:

1. celiac disease is a thing and it was NOT all in her head, 
2. what exactly celiac disease is, and 
3. how exactly to handle changing a diet SO MUCH AT ONCE.

That’s why I’m writing this huge-ass post for y’all. Since you’re here, I’m assuming that you already know celiac disease is a thing. So I want to break down EXACTLY what celiac disease is, so you know what you’re dealing with. 

1) Celiac disease is an autoimmune disease.

An autoimmune disease is what happens when your immune system (your body’s Marine Corps, so to speak) which normally fights off invaders, gets confused and starts attacking your body’s other systems. In the actual Marine Corp, they call this “blue-on-blue” or “friendly fire.” The good guys aren’t sure who the bad guys are, they see something they think is a threat, and they attack it. But then it turns out they attacked another group of Marines and now they have casualties that never should have happened. 

In your body, every cell carries a unique hormone signature, like a nametag or badge, that says “I’m supposed to be here, I’m a part of this body.” That badge gives those cells clearance to get into the areas of the body they need to in order to do their job. Your white blood cells (the Corpsmen) and your T-cells (the SEAL teams) have been briefed on who is supposed to be where and they recognize healthy, functioning cells by their badges. 

When they come across a cell that DOESN’T have a badge they recognize (a foreign signature, meaning this cell came from outside the body) they attack and kill it because it doesn’t have clearance to be there. Then, that foreign signature gets passed around to all the other troops like a wanted poster: “look out for these bogeys, they’re public enemy #1. TOP PRIORITY.” 

(That’s how your body creates an immunity… white blood cells are on the alert for this fake badge, as soon as they recognize it they take it out, and the bad guy (bacteria/virus) doesn’t get a chance to do any damage.)

In an autoimmune disease, the troops have been so shell-shocked that they have trouble identifying who is who. There’s a lot of innocent casualties (other systems that are being attacked) and “blue-on-blue.” This is sometimes caused by a high level of inflammation (caused by food in general) or, in the case of celiac disease, by a specific food.

2) Gluten is a sneaky bugger.

In a healthy body, your digestive system takes the food you eat (which carries its own badge, ie “I is Potato”) and breaks it down into its constituent parts (“starch,” “carb,” “protein”). Good digestion is when your system is so “hot” that it can cook those parts down into the smallest building blocks (“protein”  becomes “amino acids”).

The body knows what to do with those building blocks and immediately funnels them off into the correct system, using those raw materials to repair connections or replace old and worn out cells. (You literally are what you eat.)

But the protein Gluten (and its building block, gliadin) are double agents. Though naturally occurring in certain foods, these proteins can have a negative effect even on HEALTHY digestive systems. (Which is why some people say no one should eat wheat at all, but that’s a rant for another time.) Gliadin weakens the bond in the cell wall of your small intestine, which is only ONE cell thick. As soon as that wall is breached, undigested bits of food get out into the bloodstream still carrying their original badges (“Potato,” “Ice Cream,” “Pasta.”)

Your white blood cells, who patrol the bloodstream like State Troopers, see those “unlicensed drivers” and immediately flick on their lights and chase them down. (This is called “inflammation:” your immune system is constantly activated, fighting petty crime and getting worn out from never getting any time off.)

What I just described is the basis for “gluten sensitivity” (which I will write a different post on because this one is getting too long already).

Gluten, meanwhile, created a diversion by letting out all those other particles, and takes advantage of the Troopers being busy so he can sneak off into other systems and sabotage everything he can.

Without getting too detailed, gluten is a protein. The body needs proteins to regenerate just about every cell ever. So all the little blue collar worker cells, who are just trying to meet their protein quota for the day, are all too happy when gluten shows up and they don’t question the fact that the new guy’s badge looks a little funky. They figure security probably cleared him already, so they just funnel him in. That’s how gluten gets into all of your body’s other systems.

3) Gluten is #1 on the Most Wanted List.

Even with his well-timed diversion and “regular Joe” protein disguise, somebody somewhere notices Gluten isn’t supposed to be there and they sound the alarm. The troopers, who are all busy catching the unlicensed food bits in the bloodstream, call for backup and here come the Marines!

The Marines, who are extremely organized, go on a massive man hunt for Gluten’s unique “fake badge” signature. They soon discover all the places he has infiltrated and put everything on full lockdown. It's like when the TSA finds something suspicious and shuts down the airport… no one in or out. 

The problem is, Gluten has already been integrated. (But not always in the same systems, which is why people with celiac disease have wildly varying symptoms yet still all have celiac disease.) The Marines, in an effort to eradicate Gluten, who they now see as Public Enemy #1, also end up attacking the civilian system that gluten is hiding in and we get the “autoimmune” response. (“Autoimmune” = a condition in which the immune system attacks cells belonging to the body.)

They’re really after Gluten. But since he’s bonded himself to so many of the body’s systems and taken them hostage, civilian casualties are high and the whole body is weakened.

Obviously there are a lot more factors and I could have gone into much more detail (and with actual scientific terms lol). But hopefully this gives you a good picture of what’s going on so you know what you’re dealing with!!