Saturday, August 16, 2014

Celiac Disease

I've mentioned in my last couple of posts that I haven't been doing very well. This is the post where I explain why. Warning: It's a long one.

I have Celiac Disease and I got "glutened".

Celiac Disease (or Coeliac Disease for those who speak the Queen's English) is an autoimmune disease. It's a very serious, chronic disease that can only be treated by going on a gluten free diet. Never ever eating anything with gluten in it for the rest of my life. There is no other way.

Gluten is a protein found in wheat, barley, rye, and most oats. If gluten gets to my small intestine very bad things happen.

You see, everybody's small intestines have these wonderful little things called villi. The villi are little fingers that stick out and act like vacuums, sucking up all the nutrients in food. Not just at the top like a little tube, but all along their length. Those villi get all up in the food like a pig wallowing in the mud, happily absorbing all the vitamins and minerals they can.

With Celiac Disease those happy little piggy villi react horrifically to gluten. The gluten damages those little fingers. It flattens them out. Instead of long fingers sticking out, I end up with smooth sides. The surface area for absorbing nutrients diminishes greatly.

Image from UCLA Health

Basically, untreated Celiac Disease is the same as walking around malnourished. This is why as a pre-teen I walked around looking like a concentration camp survivor. That's not an exaggeration, kids can be mean but they're usually pretty honest in their cruelty. That's not to say that people with Celiac Disease can't be overweight. They totally can be, it's just another way that their body is trying to cope with the disease.

As I said, the only treatment for Celiac Disease is to go on a completely gluten free diet. This isn't something I do for fun, to be trendy, or to lose weight. I have to eat like this for the rest of my life. If I don't there are consequences, immediate and long term.

The immediate effects are pretty gross, to put it delicately I get gastric distress. It's a lot like food poisoning, but it takes a little longer to kick in. I also get at least one giant cystic pimple on my chin, just in case I don't feel bad enough I get to look terrible too! The next few days are filled with headaches, joint and body pains, and my depression kicks in too. For the next few weeks I'm weak and tired, and much more likely to catch any sicknesses that are going around. If I'm lucky I'll start to feel better after two weeks.

Those are the effects of just getting a little bit of accidental gluten. Some times I don't even know where it came from. Usually it's from eating out and getting cross contamination* sometimes it's as simple as getting a kiss from Joey too soon after he's had a sandwich.

Long term the effects are much more dire. Cancer. That's right. If I get too much damage in my intestines I can get cancer.

"If a person with celiac had the disease undiagnosed for a long period of time, or fails to maintain a gluten-free lifestyle after diagnosis, the chance of developing small intestinal cancer increases. Those with celiac disease are especially more likely to develop lymphomas in the small intestine because of their compromised immune system. In the past the increased risk of celiacs developing lymphomas was quite high, 40-100% more likely. However, more recent studies have shown that the risk of lymphoma is slightly higher than the normal population—much less than previously believed—and that this risk reaches unity with the normal population after a gluten-free diet has been maintained for several years." From

Like I said, this is no fad diet. This is serious stuff.

I wasn't diagnosed with Celiac Disease until I was 26 years old. That's a pretty long time to be malnourished. My daughter was diagnosed two weeks after me. She was six. Luckily for her, we caught it before it could cause any long term problems. She's completely healthy now (as long as she maintains her diet.) She's a healthy weight and she's growing very well.

Unfortunately for me, I'm still having problems. My bone density is low. I don't have osteoperosis yet, but my bones aren't as dense as they should be. I've lost height. When I was 18 years old I was 5'8.75" tall. As of July 30th I'm now 5'7" even. I'm also dealing with random pain and tiredness that my doctor calls Fybromialgia (I'm not 100% sure if I agree with the diagnosis and will have more tests done when I can.)

Since I'm still having problems my husband and I have decided that our whole house is going to go gluten free. When we go out to eat the boys are welcome to order as much gluten as they'd like, but they aren't going to be bringing any of it into the house.

This is going to take some serious preparation on my part. Since I somehow got accidental gluten in July (twice judging from the nasty pimples that popped up) my house has gone to the birds. I'm not the best housekeeper in the best circumstances, with being sick for so long the house has a similar look to a disaster area. I've got to get things back in order so that I can get in the kitchen and cook a lot. No more quick convenience foods, I need to make it all.

To add insult to injury, I've been on a lower dose of my depression medication. *sigh* It's a long story, but the gist of it is that my doctor moved two hours away and I couldn't get in contact with anyone to get a prescription refill. When I finally did manage to catch somebody on the phone it was only to be told that I had to get a new doctor and a new prescription. By this time I was nearly out, so I had to start taking a smaller dose to try and ration what remained. I'm currently taking 1/3 what I need. This means I'm barely functioning. Luckily, the new prescription will be ready by some time next week. Within a week or two of being back on my full dose I should be back to normal. Well, normal for me anyway!

So there you have it. The full explanation why I've been feeling so terrible for so long. Things are starting to look up, but I've got a ways to go.

If you want more information I have another blog, Everyday Celiac. I haven't updated it lately, but there are some resources there.

*Cross contamination is when I get gluten, not from eating something containing gluten, but from gluten being transferred to my food. For example: this happens when a restaurant used a cutting board to cut my food right after cutting bread, or when they fry my food in oil that has had breaded food fried in it. Things like that are called cross contamination and they make eating anywhere but at home a gamble. 


Kay Ehrmantrout said...

Thank you for the description. I found it very informative. I never knew it was connected with intestinal villi. I was also unaware of the seriousness of cross contamination. I occasionally do catering, and in the future I will be more conscious to have a gluten free item and how best to prepare it.

Heather said...

Kay, if I went to a catered event and there was gluten free food I would probably cry!