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 www.CeliacCentral.org

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. 

Easy Corn Shucking

Today was slightly better weather wise, we had some moments of sunshine. Overall still kind of dreary.

We didn't go anywhere or do anything special, but we had corn on the cob with lunch.

This might not seem like a big deal, but I really love corn on the cob. I'm slightly allergic to the corn silk (nasal allergy not food allergy) and so I hated buying the fresh husks and trying to shuck them through a runny nose. Frozen pre-packaged stuff just isn't the same. As much as I love corn on the cob we just never had it very often.

Well, break out the floss because last year I learned a new way of preparing it. Thanks to the magic of Pinterest, I learned that you can microwave the corn in the husk. Then you take it out, slice off the end, and shake the corn out. We have corn on the cob so much more often now! Especially when the fresh stuff comes out at the Farmer's Market.

The corn stays crisp and there is very little mess. Plus, it's a really cute older guy doing the demonstration.

Without further ado, here is the video of Ken teaching you how to shuck corn. (He uses gloves, I just use two dishtowels.)

The video is courtesy martincraid4 on YouTube.

Bad Ideas and the Summer From Heck...

First a little background info.

When I was diagnosed as having Celiac Disease there was a slight possibility that the atrophy in my intestines was from a recent bout of gastroenteritis and that I did not actually have Celiac Disease. The blood tests that indicate Celiac Disease were all negative for me. The blood test being positive means that you definitely have Celiac Disease, but a negative does not mean that you don't. Confusing, but my gastroenterologist (gut doctor) told me that the best idea would be to go on the diet and see if it helped me. He told me that if I ever doubted my diagnosis that I could just go off the diet for two weeks and see what happens. If nothing happens then I'm not a Celiac, if I feel crummy then I know that my diagnosis was correct.

Fast forward to this past August. I started thinking maybe I don't have Celiac Disease. I was feeling worn out and having stomache pains, and since I was on the Gluten-Free diet I thought that maybe there was something else causing all my trouble. So my hubby and I decided to do the two week trial. Just to see.

Usually, when I think I've been "glutened" I feel some... umm... "bowel distress". I compare it to food poisoning. It is pretty much in direct proportion to how much gluten I have ingested. The first time I might not even feel it. The second time, however, it is like salt on a wound. Much worse. Then I heal and I'm fine again. Normally there are no lingering effects.

I started back on the "regular" diet on a Monday. It was beautiful. I was able to eat things that I had been dreaming about, mostly fluffy rolls and turkey with actual gravy from a restaurant. It was nice, very nice. I went a whole week not feeling a thing. No tummy pain, no "distress", none of the bad stuff at all. I was actually starting to think that my diagnosis was wrong and that I was going to be able to lead a normal life again.

Then came week two.

The Sunday of my experiment came and I was feeling run down and achy, almost like I was getting the flu. By Sunday afternoon I was so sensitive, that the slightest touch felt like someone was pushing on a bruise. Speaking of bruises, I noticed a few more bruises than normal that I had no explanation for. (FYI I bruise easily anyway, so I mean that I had bruises on my arms and legs not from the normal bumping into furniture.) I stayed on the "regular" diet because I had a lot of treats that I'd bought and I wanted to finish them so as not to waste money.

I gave that up by Tuesday. I was miserable.

It was horrible. If I had been running a fever I would have sworn that I had the worst flu EVER. Nope. The Gluten Monster had returned, and with a vengeance. Not only was I in "distress", but I was hurting in ALL my joints, achy in every muscle. Plus I was in a really, really bad mood. My depression was bad, and my anxiety was horrible too. Lucky for me that Valerian Root really works.

I'd had a week of fun, and it took TWO MONTHS for me to recover. That's right, two whole months. I was useless. Here it is the end of October, and I am finally feeling normal again. I have a really understanding husband. (The preceding was a huge understatement!)

So between the Serotonin Withdrawals and the Celiac Monster, I was not much fun this summer. We were able to squeeze a nice visit to my family in Phoenix over the Fourth of July, between my self medical experimentation. I feel bad for my kids, there wasn't too much fun this summer, but they did get lots of fresh air and sunshine playing in our backyard!

Okay, I know this was a horribly long post, but I wanted to give some explanation for my disappearance these past few months.

As a post script: I figured out that I'm sensitive to high-fructose corn syrup, especially in soda. Avoiding it seems to take care of the other problems that I was having when I decided to do the "regular" diet experiment.

Kill the Gluten!

I just found a great new gluten-free blog: Kill.the.Gluten

The ladies who write this blog are terrifically funny, and I just love it.

Great news! Betty Crocker is going launch a new line of gluten-free mixes! YAY! The most promising is the brownie mix, the one thing I miss the most from my pre-Celiac days. I am so excited, I just can't wait to try it out!