Wednesday, September 22, 2010

Day 9

Monday 9/20

Continued going light on gluten, and feel pretty good today. Digestive system seems to be pretty happy about this dietary change.

I had a gluten-free lunch, except for the delicious Reese's Pieces Brownie I bought for a bake sale to raise money for the 3-Day Breast Cancer walk for my classmates. Definitely gluten well spent! And happy to donate to the cause.

Eating the brownie got me wondering about candy, since I'm a complete sugar addict. Discovered that some of my favorites are actually very much gluten-present. Crap. Milky Ways (milk chocolate), Twizzlers and Red Vines all have lots of gluten. Strangely, Milky Way darks and Snickers are okay. Plus there are lots of more natural gourmet red licorice candies that are okay. So I'm safe with that.

But I still went out and bought some mini Milky Ways and a pack of Twizzlers as part of my Tour de Gluten. That's some gluten well spent as well. Just had to control myself so I didn't eat too much in one day. So far, so good. Sweet tooth satisfied!

Day 8

Sunday 9/19


Starting today, I just can't keep subjecting myself to something that is probably making me so sick. As an experiment, I cut out the obvious gluten-containing products from my diet, but plan to still deliberately keep having gluten each day, just in a smaller amount. Instantaneously I began to feel somewhat normal again. 

I resisted a soft pretzel at the mall today. That made me a little sad. But after the previous night, I was okay with it. Maybe I'll get the hang of living gluten-free if I can remember what it might do to me if I resumed a gluten-filled diet. Too bad gluten is so tasty. 

Avi didn't try to make me eat anything with gluten today. I think he started to realize how miserable I was becoming. Today was my day off from it completely. At least as far as I could tell.

Day 7

Saturday 9/18

Saturday was a low point for me. I had my recently usual Lucky Charms for breakfast, but sort of thought I'd eat lightly in honor of it being Yom Kippur. I had a lot of moments of feeling bitter about how difficult it's been to keep functioning as usual with my random bouts or "episodes", as I've been calling them, of pretty serious indigestion and other symptoms I won't mention here. While Jews fast one day a year to remind themselves of their sins and also of the things they should be thankful about, I can only think "why me?" when I realize I've been limiting my diet in a desperate attempt to control the symptoms that were spiraling out of control. Don't get me wrong, I'm not actually feeling ill on a regular basis. Just generally crappy on-and-off, in an unpredictable, yet regular pattern. But then I had a string of at least four days last week in which I would become sick for an hour or so and then get very tired afterwards, which would last for the rest of the day. 

And after eating a bagel and a lot of baked goods for breaking the fast with Avi and friends, I became really sick and miserable. I thought I might become violently ill, but I somehow got over that and ended up just going to bed early. On a Saturday night. What a sad weekend. How could I continue force-feeding myself gluten?

It's pretty amazing to realize the power of the mind. I had spent the last year telling myself that my symptoms were just the result of an irritable stomach and its close connection to my stress level. I was able to convince myself that it was my fault, but also that I could control the symptoms if I just managed my stress well enough. It did help to use relaxation and yoga and other methods, but when all was said and done, that didn't explain it fully. Nonetheless, I was able to convince myself that if I didn't spend time worrying about it and thinking about it, it would resolve itself over time.

It wasn't until I received the blood test results a few weeks ago that I was suddenly aware of the physical damage that's probably going on inside of me. Somehow, it made my feelings legitimized and real. It was simultaneously relieving and also debilitating; if I can't control the symptoms with stress management, and if I have to keep eating gluten, I'm actually feeling sick for real reasons... and there's nothing I can do about it.

Rather than feeling depressed about it, I'm trying to become empowered. I realized that although I need to follow the doctor's orders, there was no reason to keep making myself miserable. I can decide how much gluten I choose to have, and it's time to start making changes, even if they're subtle for now.

Monday, September 20, 2010

Gluten-Free Resources

Thanks to those of you who have recommended certain websites that cater to being gluten-free. It makes me sad I can't really get started yet, but I'm going to keep updating this list as people send me resources. I can't wait to dive into all of them! (Is that strange?)

Celiac Princess
Good Without Gluten Blog (great posting about safe halloween candy: Yum)
liveglutenfreely.com
Amy's food resources
King Arthur Flour Recipes
Celiac.com
Whole Foods

Day 6

Friday, 9/17

I went lighter on gluten today. Had chicken teriyaki, which has gluten in the soy sauce, but otherwise tried to cut down.

I’ve been feeling sick every other day, if not more often. This is getting tiring. The GI office called and said the doc I scheduled to see next Thur for a consultation needs knee surgery that day.  Awesome.  I was tempted to tell them to make him crawl in to see me, for all I cared. I resisted the temptation and accepted an appointment with his assistant next Friday. The secretary who called was sympathetic when I told her about my situation, that I am eating gluten and feeling sick, but still refused to schedule an endoscopy before I actually show up at the office. Seriously though, this must be unethical to encourage your patients to hurt themselves with a substance you know is damaging them. I’ve come very close to calling my primary doc and asking her how important it is for me to eat gluten, but then I talk myself out of it. My sister pointed out that it’s sort of backwards for me… most people would cheat with gluten, but I want to cheat by cutting back on gluten. At least I’ll feel ready when I actually am supposed to cut it out.

At sundown, it's Yom Kippur and Avi will start fasting. On a holiday like this, I realized my life has started to resemble fasting as well. Since I keep getting indigestion during the day, I've been cutting back on eating lunch and having the bare minimum till I get home and have dinner. I think things have been worse than I realized... which is good because there's a lot of room for improvement.

Day 5

Thur 9/16


I realized that lots of breakfast cereal will be off limits for me. I went and bought Lucky Charms and Honey Nut Cheerios. Forgot how awesome Lucky Charms are. Avi also realized how much he likes them.

Day 4

Wed, 9/15
In class today, my classmate told us she just found out about a bunch of food allergies she has. In addition to wheat, she’s allergic to malt and pepper, which are both in almost everything. It gives me a little perspective on my situation.

Our professor brought out snacks after hearing us talk about food. Ironic that it all contained wheat. But good for me, since I’m still eating it. He had all my favorites: nutter butter bites, mini oreos, wheat thins and goldfish. I tried to control myself so I wouldn’t end up sick in class. Then a meeting with super yummy brownies after that. That made me happy I was still having gluten.

More leftover pasta for dinner. Pretty tasty. I think I did a good job consuming gluten today.

Sunday, September 19, 2010

Day 3

9/14
Avi wanted to cook, so he offered to "take requests" from me as long as it was a gluten-filled meal. I originally mentioned baked ziti, but it was approx. 1000000 degrees outside, so it seemed too heavy that day. I suggested pasta primavera, and he acted like it was too difficult. I found him a recipe and told him I just wanted some sauteed veggies with oil and garlic over pasta. That's the sort of recipe I'd do without any specific recipe. But he said it didn't sound good to him. So much for taking any request...

Anyway, I finally succumbed to whatever pasta recipe he wanted to make. He ended up making spaghetti with basil sauce. No veggies. Oh well. This is our eternal issue. He likes just sauce and meat (at least he didn't fill the sauce with too much ground beef this time), and I like veggies. It tasted very strongly, almost too strongly, of basil. Avi could barely notice the flavor. It's a miracle we have any foods we like in common. I added a bunch of Parmesan and shredded mozarella to cut the basil, which made it pretty satisfying.

Day 2

9/13
Trader Joe’s cranberry pumpkin bread. It tastes good, but when I swallowed it, I noticed some tightness in my throat. Have I just never noticed it, or am I being hyper-sensitive?

Bought biscuits at the grocery store today. That makes me sad. Till I realize that I rarely eat them, even though I really love them. I’ll just have to find a gluten-free biscuit recipe.

Day 1



9/12
Challah French toast at Chompie’s. Had it with strawberries. The food was great, but the company was better. Had a chance to catch up with Jessie, which was somewhere around 6 months overdue. We stayed for 3 hours. Well worth the dose of gluten and the $13.

I also had Domino’s pizza while Avi watched sports. I think it’s true they have improved the crust. Glad I got to taste it. Although I don’t know I’ll miss it too many times a year…

Friday, September 17, 2010

Gluten Goodies

Here is my list of foods to enjoy before I eliminate them forever. Every few days, I'm trying to go enjoy something new. I'm looking for ideas! If you think there's something else I should add, please post a comment.


Garlic bread
Soft pretzel 
Strawberry Rhubarb Pie
Stuffing (Thanksgiving style)
Matzo ball soup
A really good bagel
Italian Sub

Pizza Bianco (supposed to be some of the best pizza in the country, right here in the Phoenix area)
Baked ziti
Little Debbie chocolate roll cakes (not sure what they're called)
Biscuits
Oreos
Nutter Butters
Root beer float (the caramel coloring is supposed to be gluten-iffy)

The Blood Test


Here's the full story. It's a bit long, but hopefully it will help answer some questions.

For the last year or so, I've noticed increasing issues with digestion in my daily life. But I always figured it was the result of stress and anxiety over grad school combined with my upcoming wedding, and just spent time managing my emotional states rather than considering a physiological problem.

After my wedding was over and the less-stressful summertime had arrived, I started to realize that nothing had changed with my random bouts of GI distress. My aunt was diagnosed with Celiac about five years ago, and I'd been putting off the blood test for fear of it being positive. I never noticed a connection to wheat, but having had food allergies as a child, I dreaded the thought of restricting my diet ever again. Anyway, I finally listened to my mom and went to the doctor.

My guess was Irritable Bowel Syndrome. It seemed like the reasonable answer for why it would get worse with stress and anxiety. I wasn't excited to get the diagnosis, but I thought at least I would have an answer and might be given some suggestions on how to manage it. My doctor agreed it sounded like IBS, but said she needed to rule out other problems like parasites and viruses, as well as Celiac, in order to diagnose me.

Last Tuesday, I came back for my results. I knew right away there was bad news because my doctor's neck was red and splotchy. I braced myself. At that moment, I was ready to hear it was Celiac. And that's what she told me. The blood test looks for four indicators of Celiac, and any one coming up positive is a pretty definitive test. Three indicators were positive for me. And that was it. I called my husband, Avi after I got the results. He made me take the rest of the day off and came home early from work to spend the day with me. When he got home, he immediately ransacked our whole kitchen hunting down the foods we'll have to get rid of. I kept reassuring him that he doesn't need to go gluten-free, but he said he wants to learn recipes for both of us that will work.

So the next step is a gastroenterologist for a consultation followed by an endoscopy. This entails being sedated and having a snake-like camera and set of tools lowered down your esophagus, past your stomach, and into the small intestine, which is where damage occurs in Celiac. They take a biopsy of the tissue there, and look to see if there is visually noticeable damage. They're looking for the villi, which allow us to absorb nutrients in our digestion, to be damaged and possibly missing.

The most insanity-provoking issue is that they encourage you to keep eating your diet exactly as you have been eating it, gluten-filled and all. This is because as soon as you remove gluten from your diet, your body usually starts to heal. Without seeing the damage, the doctor might give me a false negative diagnosis from the endoscopy. I'm actually supposed to keep doing myself damage and provoking the digestive distress. It's pretty difficult to keep eating pizza, pasta, and breakfast cereal knowing it is likely making my insides tear themselves apart. And that's been the toughest part of the blood results so far. Then when I'm feeling sick, which has been pretty much every other day or so, I get really bitter. Both bitter about the diagnosis, and also bitter I can't do anything about it yet.

The advice I keep getting from people with Celiac is to enjoy the gluten-filled foods now, because I'll probably never have them again after I remove gluten from my diet. Apparently once you start taking gluten out, you become increasingly sensitive and aware of the pain it inflicts on your body. So my husband Avi suggested we start on a little adventure in order to say goodbye to my favorite gluten foods, and to help me tolerate the fact I'm eating things that are probably making me sick: Tour de Gluten. I'm making a list of the foods I want to have in their original, gluteny forms before I take it out of my diet. In the meantime, I'm trying not to do much research on what I have to do to take gluten out of my diet until it's time.

I thought this might be fun and useful to document in a blog. My plan is to share my journey, from start of Tour de Gluten all the way through my learning experience as I remove it from my diet. I hope you'll join me and send me your thoughts along the way. Thanks for keeping me company.

Shayna

Hi Everybody

I recently had a positive blood test for Celiac Disease, and decided to write about it in this blog. I think this will be the best way to communicate my experience with my friends and family and will be therapeutic for me. I look forward to learning and growing from this experience, but it will no doubt be challenging. Your love and support has been much appreciated.