Wednesday, April 30, 2008

A gluten-free Sox game?

Wouldn't it be nice if they served Redbridge at Fenway? And gluten-free hot dogs on gluten-free buns with gluten-free ketchup? ::Sigh::

Since I'm still undergoing testing, I am not on a GF diet in order to prevent false negatives. But I'm taking my friend Allie to the game, and she just so happens to have Celiac. I also don't feel like waking up with lead in my stomach the next morning. This will be my first beer-less, hot dog-less Red Sox game at Fenway. Maybe this time I'll actually remember the game for once. I tend to go overboard on the Bud Light when I'm there and yell "Come On Manny!" and then the Pirates fan standing next to me says, "They took Manny out last inning". And then not only do I look like a stupid chick that knows nothing about baseball (which I am totally NOT by the way) I look like a stupid chick that knows nothing about baseball that also happens to be wasted. If I ever thought I'd find my future husband at Fenway that was not the way to do it I'm sure. Notice also that our seats are on the 3rd base side, I've never sat on that side of the park, I've always been on the 1st base side. I'm a sucker for the standing room only section at the top of the grandstand on the first base line. By the end of the game I almost always have front row seats and I only paid $20 bucks for my ticket. Since it's so early in the season there's a good chance I'll make it down to the front row by the end of the game tomorrow night anyway so that's good. I hope it's a good game. I'd love to see Manny hit home run number 500!

Tuesday, April 29, 2008

Finally!!!!!

I think I have a crush on my new Gastroenterologist. He is so wonderful. He asked me all the questions, listened to my story and gave me every ounce of confidence that he's going to help me figure out what's wrong with me and help me fix it! He looked at my old blood work and asked me why they hadn't given me all the tests for Celiac, he said with all my symptoms that's the very first thing they should've done. That was music to my ears. He had me do all the blood work immediately. I'm also scheduled for a colonoscopy (eeeek!) on May 9th and a follow up with him in July. He also made notes about an endoscopy and a small bowel x-ray. I am totally ecstatic. I feel like a huge weight has been lifted off my shoulders. He said the most important thing right now is getting me a diagnosis, whether it be Celiac, IBD (crohns, colitis, etc) IBS or something else, first we'll figure out what it is, then we'll work on how to make it better. I LOVE THIS GUY!!! I'm also going to get myself a new primary care physician within the Beth Israel network and get in soon for a regular visit. In the words of Shauna James Ahern: YES!

Back to the Doctor's we go.

I'm ready to go see the new GI this afternoon armed with a list of symptoms, questions and prior test results. Doctors irritate me so much! I went to see a different GI last year and asked him about Celiac and he did a series of test but he didn't actually tell me anything about my results. I didn't even know that he had given me one of the Celiac blood tests. This morning I pulled out all my blood work from last year to bring to the docs today and decided to go over them myself so I would know what I was looking at. It turns out my doc did give me an Immunofixation panel which tests the Albumin, IgA, IgG and IgM. My Albumin level was low which can be an indication of malabsorption. My CBC panel also showed low HGB and HCT levels which are indicative of borderline anemia. My Iron levels were also low. All these factors and he didn't feel the need to go any further with the testing. You know what he told me to do? Cut the lactose out, take an iron supplement, and start using citrucel to regulate. Yeah that didn't work. The lactose definitely did, I definitely follow a lactose free diet now.

Anyway, I'll let you know how it goes!

ETA: I had started a GF diet but quickly stopped it once I decided to continue with the testing so that I will not have false negatives. I realize at this point I should probably have an endoscopy but we will see what the doc says today.

Monday, April 28, 2008

Oh yeah...

I'm finally going to get myself tested for Celiac. I posted this here so that I won't chicken out and cancel the appointment. See I tried to get tested last year, but neither my PCP nor the GI that he referred me to wanted to test me for it (It's just IBS you see, you are not a classic Celiac case my dear). I was too afraid to stand up for myself and demand the tests, and too afraid to admit that to anyone else so I just went along thinking I'd take care of it on my own. Well that didn't happen and here I am struggling again. In that book I just posted about it gives 3 different tests to help identify wheat, gluten and grain intolerance and I scored high on all of them. Every test I've ever taken I've scored highly on and then they all say "you scored highly, please go get tested for Celiac, especially if you have a relative with a positive diagnosis". Well you see, my mom's first cousin was diagnosed last year, and I'd be willing to bet she's not the only one that has it in the family. And so I'm finally beating myself over the head and dragging myself to Beth Israel Deaconness Medical Center tomorrow to visit the Celiac Clinic. I will keep you posted on how it goes.

You should read this book

I went to Borders last night to find a new cookbook and instead came home with Going Against the Grain by Melissa Diane Smith. I started reading it right there at Borders, continued at home and then again on the train to work this morning. It's an excellent read for anyone that's ever had any sort of health problems, I highly recommend it. It completely re-affirms what I've already been thinking about the negative affects of grains on our bodies and how beneficial it is to reduce or eliminate them from your diet. I realize that this approach sounds drastic to many people, especially those that don't experience digestive issues or other health problems, but if you read this book I guarantee it will at least have a small impact on your thinking.

I'm not trying to say that everyone in the world should get the grains out of their diets, just be conscious of the foods you eat and how they affect your bodily functions. I want more people to be aware of what's going on in this country and all over the world as far as drastic increases in health problems and obesity. It's no small coincidence that grains are the newest addition to the human diet. Because I suffer from so many issues, I am making every attempt to eliminate grains from my diet as I feel that it will make a drastic change to my health. I'm looking forward to not being sick and tired all the time.

Thursday, April 24, 2008

We interrupt your regularly scheduled work day...

I am a big fan of The Hills but I have to agree with Denise Martin on her Open Letter to Lauren Conrad. Click the photo to read it for yourself. I wish I was outside enjoying the beautiful weather rather than wasting my work day clicking my way through the internet.

The Last Supper

Bucca di Beppo

This was my last giant gluten-packed Italian dinner. This was at Buca di Beppo's in Kansas City, Missouri when my sister and I flew out to visit our Great-Grandmother and Great-Aunt. The food was fantastic, but of course I felt like I needed to be carried out of the restaurant after eating all that heavy gross food. I'm starting to really feel the difference now. I am noticing how I don't feel disgusting after I eat anymore. You know how you get so used to feeling something that you think it's just the way things are supposed to be and that it's normal? I just thought that everyone felt full and crampy and uncomfortable after eating. Now when I eat and then I don't feel anything it's kinda weird. I feel like I'm not eating enough, but I'm not actually hungry anymore. I will really need to learn how to eat intuitively. It's just strange to me to eat, feel satisfied, and then move on. No cramps. No gas. No bloating. No food coma. No lead stomach. It's pretty nice, who knew eating could be this good?? I'm pretty excited about that.

Wednesday, April 23, 2008

Junk Food

Purely Decadent PB Zig Zag

Purely Decadent Peanut Butter Zig Zag dairy free "ice cream". The peanut butter is the best part of this, of course, because it's real. The chocolate part is obviously soy, tastes a lot like chocolate Silk. It's not bad, but I'm a huge chocolate ice cream fan and this doesn't come all that close. However, it also doesn't make me feel like shit, so I consider it worthy. There are definitely other options out there so I will keep experimenting. Next I will test a mint ice cream because that is really my absolute favorite.

I love snacks so being gluten and lactose free is tough but ultimately healthier and not feeling like I have a lead cannonball sitting in my stomach after every meal is pretty sweet too. This afternoon I was hungry so I walked over to the convenience store for a snack. I grabbed a bag of potato chips thinking most potato chips are gluten-free so these must be right? WRONG. Cape Cod BBQ chips are NOT gluten-free. It says it right on the bag but I was being obnoxious and didn't bother checking before I left the store. I'm so damn stubborn sometimes. Anyway, I'm over it, moving on!

I tried going gluten-free last year and gave up quickly because I found it so difficult. That was when I was fighting with the doctors about Celiac and figured since they were so convinced that I didn't have it, then it wasn't worth going gluten-free. Well after all the research I've done, I realize that it pretty much doesn't matter which digestive disorder you have, if you have one and it's not getting better, try going GF. It's only been a few days and I feel better already.

It's Wednesday already.

Grocery Guide

Last night I took my Essential Gluten-Free Grocery Guide to Stop & Shop with me. It was very helpful and I bought a bunch of stuff. This morning I had a Caramel Apple snack bar made by Enjoy Life. It was a little gritty, but for convenience it worked out nicely. Being a young single girl that lives on her own, I find not only do I not have enough time to cook for myself but I always end up throwing away food because I can never finish the leftovers. This makes going gluten-free a little more challenging but I know I can handle it. I do love to cook so I'll just work on cutting recipes and making enough food just for me.

Tonight is kickboxing so that's fun. I'm really glad winter is over and spring is finally here. The cherry blossoms are in full bloom and they are my absolute favorites. I will hopefully get a chance to take some photos. Maybe tomorrow. Yes, I'll plan for that, I hope it doesn't rain!

Tuesday, April 22, 2008

Waiting for my healthy life to begin.

Waiting

Ok so this is not me. But you get the idea, waiting for something that seems to be passing you by, right? I've spent almost my entire life feeling sick. Not usually sick enough to stop my daily life, just always a little bit sick. Stomach problems, constantly. I visited doctor after doctor to try and find out what the heck is going on but got very vague answers. Last year I decided to start getting some answers for myself, I had been diagnosed with Irritable Bowel Syndrome but no one could tell me what that really means or how I can fix it. They just say, it's stress related, basically telling me it's all in my head. Well guess what, I'm not a very high stress person and the knots in my stomach came at some of the happiest times, so how do you figure it's all in my head? Not acceptable. I searched and searched for answers and found that I'm certainly not alone. This past winter was my worst ever, I landed in the emergency room twice with severe dehydration. No matter how much I drink, I can't stay hydrated. I get rashes. Brush past my skin and I'll have a bruise. Bloating. Fatigue. Joint pain. Infections. A never ending list of various problems that never seem to go away. It's a rare day that I feel completely healthy. It's not in my head. I'm not making this stuff up. I'm a generally happy person, I don't want this, I'm not asking for this, or your sympathy. I just want to feel better! So I dig deeper and deeper into the world of digestive disorders and more and more I see a common culprit. Gluten. That pesky protein found in wheat, barley and rye (and sometimes oats). Some people just can't handle it. One person referred to white flour as plaster of paris for the intestines. That would explain a lot! So here I am, once and for all, cutting the gluten out of my life. I tried it before and although I felt better, I didn't stick to it because it can be tough. But I truly believe that this is the answer to all the misery I've gone through over the years. I'm hoping it will work because if it doesn't I have no idea what else to do. With the help of lots of other gluten-free people, books, websites and blogs I'm determined to make this lifestyle change a permanent one! I will use this blog as my way of recording the journey and also whatever else is going on in my life. Links, photos, and other fun stuff I'm sure. Stay tuned!

Monday, April 21, 2008

I lived the first 20 years of my life thinking that feeling sick all the time was normal. I constantly had stomach aches, cramps, gas, bloating, joint pain ("growing pains" the docs said) and fatigue. My pediatrician told me that I had a spastic colon and taught me how to massage my stomach to stimulate a bowel movement. I kid you not. It wasn't until I was in my early twenties and my boyfriend became frustrated because I was always complaining about not feeling well. "You're always sick!" was the sentence that got me to start realizing that this isn't normal.

I was diagnosed with Irritable Bowel Syndrome (IBS) in 2002, at the age of 22 years old. The doctor gave me a one page handout that basically said "eat more fiber." So I did. I started eating whole grains and more fruits and vegetables only to find myself feeling worse than ever. I went to a new doctor in 2005 and was told, once again, that I have "classic" IBS. He suggested Citrucel (aka more fiber!). Around this time I started doing my own research and learned for the first time about Celiac Disease. I was convinced that this must be what I had, my symptoms were so similar!! I asked the doctor to test me and was told that my symptoms were not typical of Celiac and so therefore, I must not have it. He recommended I got see a gastroenterologist. During my first visit to this GI he basically told me that I'm in my early twenties and otherwise healthy. He didn't think I needed to go through dangerous, invasive procedures that would probably not show anything. I clearly just had a bad case of IBS. IBS. IBS. IBS. I hate those three letters!! IBS to me, is the diagnosis they give when they can't figure out what's wrong with you. In my case, unfortunately, they should've tried a little harder. I was so discouraged by the doctors I had seen that I gave up and decided to just take matters into my own hands. Since I was convinced that I must have Celiac, I started a gluten free diet. I felt so much better! But it was hard to stick to and since I didn't have an official diagnosis, I ended up falling off the wagon not long after getting on.

In the last summer of 2007 I contracted a stomach virus that had been going around. It was a nasty one and I ended up getting so dehydrated that I passed out 4 times and wound up in the ER for IV treatment. The weeks following the illness I lost 12 pounds, couldn't get my hydration levels back up, and felt miserable. The doctors couldn't figure out what was wrong with me. I kept telling people that I've had stomach problems my entire life and that I was afraid I had something more serious than IBS, but no one would do any other tests. My bloodwork was pretty normal, aside from a borderline iron deficiency. The following January I caught the flu and once again found myself passed out on the bathroom floor, and then riding in an ambulance to the hospital for more IV fluids. Still, the doctors looked at me with puzzled expressions. Why is this otherwise healthy 27 year old girl getting dehydrated so easily?

After the second trip to the ER I knew it was time to find a doctor that would take me more seriously. I was still thinking that Celiac could be the culprit so I searched online for a Celiac specialist. I discovered that Beth Israel Deaconness Medical Center here in Boston has one of the best gastroenterology centers in the country and also has a Celiac center. I made an appointment with a new doctor that same day.

My first visit with the New Doc was very encouraging. He was very concerned and wanted to put me through a colonoscopy right away. I was so excited that a doctor was finally listening to me! He was also going to do all the bloodwork for Celiac testing. The bloodwork came back negative but I know that those blood tests are not always 100% accurate so I was not yet convinced. The colonoscopy, however, showed extensive ulceration and inflammation of the Terminal Ileum... the diagnosis - Crohn's Disease. I was totally shocked, but glad to finally have some answers. I was immediately prescribed a steroid and an anti-inflammatory. Diet was not discussed. As far as my GI was concerned, "as long as you're on medication, you should be able to eat pretty much whatever you want." I was not satisfied with that, but at that point, I just went with it. He said that there is no scientific evidence that shows that diet has anything to do with Crohn's disease. I completely disagree with this, but decided to try it his way.

The steroids were a nightmare and I did not react well to the anti-inflammatory. I was miserable for the first 6 months of treatment. I gained about 30 pounds, my face looked like a balloon, I was weak and tired. I used to be athletic, I lost all of my strength and stopped going to the gym entirely. In September of 2008, I wound up back in the hospital after another dehydration episode. The Doc changed my med regime and put me on an immune suppressant. Crohn's disease occurs when your immune system attacks your own body instead of foreign invaders. So they suppress the immune system in order to control the disease. There is no understanding of why or how we get Crohn's, nor do they have any ideas on how to cure it, suppression is currently the only answer.

I've read hundreds of stories from patients with all kinds of autoimmune diseases. I've done a ton of research on the subject. The common denominator in all of the stories of successful healing seem to be diet related. Many of the foods we eat today are unnatural and they are causing our bodies to go haywire. Humans were not designed to eat the way we do today and unfortunately, many of us are suffering in silence because the medical community does not widely recognize diet as an issue. It's not easy to drastically change your diet, but the changes you may experience are worth it. Your health is worth it. My health is worth it. I started this blog as a way to help myself to work through the changes I needed to make. It's been a long road and I'm still learning and changing, but I'm not giving up. Now this blog has become a resource for others that are suffering and are looking to make positive changes to their health as well. I'm happy to write about my experiences here if it means that even one person will be helped.

I don't think that there is one answer for change. Every body is different, there are tons of food allergies and intolerances out there. It's a challenge to figure out which will work best for you, but it's worth it. I focus on gluten and dairy because those are two of the most prominent intolerances and I feel that for me, these are the two most important things to try to avoid. I also tend to have issues with sugar and yeast (they go hand in hand). It's definitely a journey, but if it means that one day I can be healthy and medication free, then I'll keep on walking. I hope you'll keep walking with me!

Blogroll - Coming Soon

There are soooo many great blogs out there, it's gonna take me a while to get this list up and running. For now just use my links on the right!

Reviews - Coming Soon

Under construction, sorry!! Check back soon for an archive style list of all my reviews!

Recipes - Coming Soon!

I know, don't you hate that? Sorry folks, I promise I'll work as fast as I can!