Thursday, June 10, 2010

Gluten Free Anniversary! The journey so far.

June represents a milestone for me. Four years ago, I was diagnosed with Celiac Disease. Sometimes it seems like it's been longer, and other times I think, holy cow, has it already been four years??

Reflecting on the last four years, I feel like I have grown so much in my life in general, as well as in my gluten-free adventure. And it's definitely been an adventure!

I've never really shared "my story" here, the reason being that I prefer to look toward the future rather than dwell on the past. I also feel like this is a somewhat frustrating story, and while the overall ending is VERY happy (gluten-free and feeling better! YAY!), it's not a completely finished story. There are still some mysteries in my health that need to be solved. But, I suppose that's life :)

However, I thought this might be a good opportunity to share it with the world. This is more than just a gluten-free story. It's the story of me discovering the joys of being healthy, and listening to what my body was telling me.

As far back as I can remember, I've always had a "sensitive stomach." I was diagnosed with hypoglycemia when I was 8 years old, and my mom made sure I ate enough complex carbs (LOTS of whole wheat bread), proteins, and limited my sugar intake. For the most part, I had no problem with this, other than the traumatic diagnostic visit to the pediatrician. I remember sobbing uncontrollably in the waiting room for an hour, while they were doing the test, which I think involved pumping me full of sugar to see how my body reacted. Anyway, as a teenager, I began to notice that my body reacted badly to stress. I was frequently gassy and bloated (and never made the connection to comfort foods, of which I overindulged when stressed). It was something I pretty much just suffered through.

I remember on my 18th birthday, my family took me to Outback Steakhouse for dinner. We got a big plate of the bloomin' onion (onion rings) as an appitizer, and I scarfed them! They were soooo good. But, boy did I pay for that later. I was so sick the rest of the night. I don't know if it was too much food and fun, too much grease, or gluten, but this was a pretty typical occurrence for me. Holidays usually meant extra time in the bathroom, emergency pepto bismol, and lots of cuddle time with my bean bag.

I headed off to college, scavenging for cafeteria food and vending machine junk between classes. I ate a lot of quesadillas, chicken pot pies, and breakfast bagels. Yum! But I was definitely not feeling my best.

I never had to worry about my weight growing up. I was always naturally pretty skinny, which I didn't truly appreciate until I got to college. I'm sure there were numerous things contributing to the changes my body went through. In college, I was dealing with some major emotional issues, depression, anxiety, and overall life stress. Plus, I was less active physically than I had ever been in my life (especially when I stopped going to class, and therefore was no longer trekking across campus daily). I got on antidepressants and birth control. And I started gaining weight. Not a lot, maybe 15 lbs. But, considering the last time my weight had fluctuated was my freshman year of high school, this was a big deal to me. However, everyone I talked with about it wrote it off as the "Freshman 15." Maybe that's all it was. But that wasn't the end of it.

I got married a year later. By then, my weight had increased another 5 lbs. My emotions were at an all-time low, and I was still feeling pretty crappy. A year and a half into my marriage, my husband told me he was worried about me. He said he was concerned about my health (ie, I was STILL gaining weight, very inactive, on 3 antidepressants/anti-anxiety medications, sleeping pills, etc), as well as the fact that more often than not, I was coming home from my part-time job completely drained, unable to do much because my body hurt too badly. The cramps were getting worse, and the gas was getting WAY worse :P

So I went to my doctor, with a couple of requests. Get me off of these meds, which I was worried were the cause of my weight problems, and help me feel better!! Doc put me on acid reflux medication. That didn't work. He told me to start taking Beano and Lactaid. That didn't work. He told me I had IBS, and to start following that diet (lots of whole grains, no red meat/fat/dairy). That REALLY didn't work.

I spent some time on an online IBS forum, discussing my situation with other people dealing with similar symptoms. It was then that I was first made aware of gluten intolerance. I did more research on the subject, and realized I might have found an answer. I went back to my doctor, and asked him to test me to for celiac.

The bloodwork came back positive, and he sent me to a GI to verify with a biopsy. The biopsy was also positive. The GI (who barely spoke English) told me I had "the sprue" and that I just needed to cut gluten out of my diet and I'd be fine. Easy enough, right? LOL! He also gave me the name of the nutritionist who worked for the hospital, and said she'd be able to help me. He also recommended I go get a bone scan done, to check my bone density. I set up appointments to see both of them a few days later, and in the meantime did all the reading I could on celiac disease.

The bone scan showed no real damage, just that I was on the verge of having bone problems. So I was told to load up on supplements and followup in the future.

I then went in to see the nutritionist, which was a total waste of my time. She handed me about 50 pages of printed paper, that had come from, and told me this would have all the answers to my questions. The questions I tried to ask her, she couldn't answer...and, by the way, was the FIRST place I went in my online researching the same day I was diagnosed! I was so mad. Especially b/c my insurance didn't cover the visit with her.

So I went home, feeling completely alone, depressed, but at the same time trying to stay positive. I finally had an answer! More frenzied online researching ensued, as I tried to wrap my mind around this new concept of eliminating gluten from my life. There were lots of failures, and a lot more moments of weakness, where I caved. I went through quite a phase at the beginning where, when I screwed up and accidentally ate gluten, I binged. My mentality was, well, if you're gonna be sick, might as well actually enjoy something...Yeah, that was BAD! Lol. I figured it out eventually. But it took way too long before I could give up my Wendy's JBCs and Kneader's paninis. I think I finally had a "last meal" ceremony, where I made one my favorite gluten-filled dishes, a pizza sandwich (pizza toppings, cheese, and sauce in a toasted sandwich).

I spent a lot of time on the GF forum on, finding recipes, asking questions and getting to know other people dealing with this. It is such a great resource, and helped me through the initial transition into the diet.

The first gluten free cookbook I bought was called Life Tastes Good Again. It was written by two women out here in Utah, and they do a monthly GF cooking class. They pretty much saved my life. I began talking a lot with Betsy, online and at the classes, and spent some time with her at her house. She really helped teach me how to cook gluten free.

After a few months, this started feeling doable to me. I was having more baking successes, and less binging. Life gluten free wasn't perfect. I still remember that autumn, the birds flocked to our backyard, where I would throw out rock-hard or completely ruined loaves of bread. Eating out was still very emotionally challenging for me. I got sick at least half the time we went out. And watching other people eat the things that I REALLY wanted to eat sucked, especially when I had to consume another stupid salad. But for the most part, I was feeling better.

About a year into the diet, I started feeling sick again. I went to the GI, who told me I was probably lactose intolerant, and to start taking Lactaid pills. I did, and that helped...sometimes. I went to my general doctor, who told me he wanted to do an allergy test. We did the skin prick test, which showed up somewhere in the middle for dairy. He said to keep trying the Lactaid, avoid large amounts of dairy, and if I was still having problems, that I was probably facing an actual allergy or intolerance to dairy. The only solution for this was to cut it out of my diet. I fought this one more than gluten. I finally felt like I knew what I was doing in the kitchen again, and now the game had changed...It took me at least a year before I committed to giving up dairy for good. This definitely helped the way I felt. I still cheat very occasionally, usually when going out. But I try to avoid making anything with dairy at home.

At the same time, my doctor tested me for candida and a couple of other possible causes. Nothing turned up positive.

Like I said, cutting dairy out of my diet helped. But I was still having problems. I did a lot of reading about elimination diets, other food intolerances, etc. I decided to try somewhat of a reverse elimination diet with some of my suspect foods (just ate really bland foods for a couple days, then added in one of the suspect foods to see how I reacted). That worked...but not the way I was expecting. I spent 3 days eating plain GF french bread, potatoes, rice and bananas. But I was still getting sick. Suspect #1: POTATOES! Definitely reacted to them. Also figured out that I had problems with coconut, popcorn, onions, beans, broccoli, and cabbage. So, cut all those things out. That was not too big of a deal, except for the potatoes, which I have always LOVED, and used a lot in meals, as they were easy, and a very versatile side dish. Coconut was another tough one, since I'd found it to be the best dairy substitute (coconut ice cream!!!!!).
Anyway, got rid of all that stuff, and felt a bit better.

Eventually though, I realized something was still bothering me. So, back to the GI, after a 4 week period where I kept a food/symptom journal. He barely glanced at it, and insisted again that I had IBS. He also wanted to do a biopsy, but we didn't have money for it, so I just went with the IBS diagnosis. He did however give me a prescription for Align, which is a probiotic specifically for people with IBS symptoms. The Align has really helped. I still take it, you can get it over the counter, and I notice a difference when I don't take it.

I was very frustrated at this point. I felt like the IBS diagnosis was a cop-out, and was resentful to be put back on a diet that hadn't worked before.

I committed myself to trying it though, and it really did help. I made two great discoveries along the way. Two items recommended to me by fellow IBS-sufferers: acacia fiber and fennel tea. Both of these things are manufactured by a woman who has revolutionized the IBS community. I mostly follow the diet, straying here and there, but as long as I use these two things, my symptoms are usually kept at bay. I take the fiber religiously, about 10 grams a day, before each meal. I also drink the tea anytime I know I'm going to eat something that may trigger an attack, or when I'm already feeling bloated/gassy. I also use a heated bean bag often when I am feeling sick. That seems to help alleviate the pain.

One other thing I've tried to stick to with the IBS diet is to avoid trigger foods, like red meat, and high fat foods. This definitely makes a difference!

As of today, I still feel like something is bothering me. I just haven't got a clue as to what it could be. I've tried tracking it, and it's inconsistent, so I'm lost. It's not a big enough of a bother to cause me to pursue it. To be honest, the pain I feel these days is nothing compared to the pain I felt when I would eat gluten or dairy.

I feel like I'm a lot healthier. I don't get sick as often, and when I do, it's not enough to contain me to my bed.

Going back to my weight problems. In the midst of all my food adventures, I was still gaining weight. For a girl whose weight hadn't fluctuated more than 10 lbs in 10 years, this was baffling. In about 2 years, I gained 50 lbs. I spent so much money on diet foods/drinks, personal trainers, etc. Finally, through some miracle, I solved the mystery. My GP retired, which I was okay with, since he was the one who had sent me on a goose chase to figure out my GI problems.

I found a new doctor, and eventually brought up the subject of my weight/low energy and possible medication correlations. He immediately ordered a bloodtest. He also asked me about my thyroid. I told him it had been "borderline low" for years, and my old GP told me that as long as it didn't drop I should be okay. New doc told me this was NOT okay, and gave me a prescription for Synthroid.

Within the first month, I started losing weight! And this was 2 months after I had stopped working out with a personal trainer! I was so excited. It took about 6 months, but by the end of 2008 I had gone from 155 lbs to 110 lbs (with very minimal exercising and simply following my GF/DF/IBS diet). Everyone tells me it's unfair. But, boy did it feel good to feel like myself again! In the last year and a half, I have lost 5 lbs, and only gained weight during a 2 month period where my pharmacy switched me to a generic brand. Getting back on the name brand fixed that though!

So, that's me over the last 4 years. Whew. I still get people who ask me how I do it. Give up so much. It really isn't a choice for me anymore. I wouldn't trade how I feel today for how I felt back then for anything! Even for pizza sandwiches! The hassle and inconvenience I experience is nothing compared to the pain I remember living with daily.

I am so thankful to all the resources that helped me get to where I am. Thanks to my family and my in-laws for putting up with my annoying requests at get-togethers and for being the taste testers for all my experiments (especially Ali and DJ!

Thanks to my sister, aunts and cousins, who are all now joining me in being gluten free (it makes me feel so good to be able to help you gals out, to share my successes and failures with you, and for you to help me feel like this matters to more than just me).

Most importantly, I am grateful for my husband, who has always stood by me, helped me, encouraged me, scolded me when necessary, and loved me, no matter how bad things got. Thanks babe, for indulging my more expensive grocery habits, for trying all my new recipes, and for helping me see how much better life is when I'm taking care of my body.

Thank you to all my readers, for sharing your recipes and experiences with the world, and for being interested in mine! I'm excited to keep moving forward, and see where life takes me!

Here's to many more glorious, gluten-free days!


Linda said...

Stephanie, thanks for sharing your story. I think it's helpful for other people, and helpful for you. You have been through a lot, and you've done a great job taking control of your diet with all that you've had to eliminate.

I have gained about 25-30 lbs. in the past 4 years since my thyroid problems started. Medication did not make a difference for me. I was on Synthroid for a while at first, but haven't taken it since then. I read that they will not guarantee it to be GF, so I have asked for other brands. I often wonder, though, if they are just covering themselves and it really is GF. I have heard elsewhere that it is a superior medication. Maybe I should try it.

My sister has trouble with sulfites which can be in many different foods. For her, it's a matter of knowing which foods have the most, and then limiting her intake. It might be something for you to look into. Thanks again for sharing.

Stephanie said...

Thyroid problems can be a beast! I've been taking synthroid for almost 2 years now, and I'm pretty sure I'm not reacting to it. I'd suggest giving it a try, see how you feel on it.
Thanks for the info on sulfites. I will definitely look into that.
Thank you for your kind words as well. I appreciate all the great help and recipes on your blog. How's the dairy free challenge going for you?

Linda said...

Stephanie, I can't say I notice a difference being dairy free, but with other issues going on it's hard to tell. I'm sticking with it for now. I miss cheese the most, but aside from that it's not been difficult. I'm loving almond milk. Thanks for asking.

Stephanie said...

Cheese is definitely the hardest part of being dairy free for me too. Well, I hope you get things figured out!