Jan 18, 2010

Diagnosis




Normally I don't take self-portraits and post them on my blog. Well not this kind of self-portrait anyways. But normally I don't write personal blog posts, especially about myself...so I saw fit to post this particular photo. So If you don't want to read this long of a post, or feel it's silly that I am even writing this, you can stop. This last wednesday, January 13th, I was diagnosed with Celiac Disease. Since my 8th grade year, I have literally in bed whenever I can. The hard part in high school, and as of recently, is that I am a very social person. It's hard because I want to get out of the house and be with everyone and do everything and not miss out. But that always dragged me down, and I would stay in my room sleeping...even skipping meals just to get that extra half hour of sleep. Well, now I know! I've been told for so long that I was anemic, or had a thyroid disorder, or had lupus and all these things, but never once had the doctor ever tested me for Celiac. Then, this last holiday season, we were at home in San Clemente when I woke up one morning with what looked like bug bites. There were one or two of them. Then, the next day I got more, and more. I just assumed that the room we were sleeping in had "bed bugs". Exactly 10 days later, I'm photographing a wedding (in CA again), and sitting at a table when this woman tells me all about her son on a mission. He just broke out in all these bumps all over his body, went to the dermatologist, and they diagnosed him with Dermatitis herpetiformis. That is part of what celiac's go through. So while she's telling me this, my face got red, my hands started to sweat, and I asked her all sorts of questions, of course avoiding the fact that I have exactly what she's describing, on my lower back. She continues telling me how he can't eat the food that is "gluton-free" (but that's the missionary mind) becuase it grosses him out. Anyways. I run home, tell my parents, and they of course, tell me to get checked when I get back to Utah. Of course, I googled my "bumps" (as I've been calling them) and so many websites on it. I saw pictures, I read testimonials, forums, and blogs all from people that just woke up one day and had these crazy bug bites that never go away! And they itch like crazy. You can't pick at them or they'll get white and start to scab, but never will the scab go away. Anyways. I stopped my worrying and said to myself, just forget about this, enjoy the New Year, and you'll figure it out later. Well, on New Years Eve, we were in Seattle and I tell my Aunt about my "bumps" and she said that she has a good friend that has those, and she has celiacs. I mean come on Elise, everyone has been telling you about this. Go check it out. Now you should know, I've really never heard about this before that wedding dinner. There are two people in my ward, brother & sister, that have it and I only knew because they have a baggie brought to them during church to take their own piece of bread. So I got curious. So I google it like crazy, still itchy, but this time, I'm getting itchy on my elbows, my knees, my chest. I go in the first day I get back. My doctor tells me that I probably don't have it, because a lot of people think they do, when really they are lactose intolerant, or have bowel problems. Then I showed him my "bumps", and that's when he started getting serious with me. He told me that celiac's usually aren't asymptomatic and that he needed to see a few more things. Dr. then laid me down on the table/bed/paper thing, and pressed down on the left part of my abdomen. I started bawling! It was as if he was torturing me and I didn't know if I should hold in my tears, but at that point, I couldn't help it. He then sent me immediately to get blood tests, asked me to come in sometime the next week, (next week, seriously? if i don't treat this right away sir, i can't have kids!) I scheduled it for 8 days after the blood work was done. He called me 4 days later, told me it was urgent and to come in as soon as he was able to. So I came in, he told me some really confusing things... and then finally I said, so is it positive? He said "YES! Your levels are at the highest they can go!" Wow! I didn't expect that at all. I am so used to doctors telling me, "you're just growing", "you need more sleep". Or "women always have really low iron levels". Finally there is an answer. Most of you are probably thinking I am crazy how positive I am, but this is such a blessing. And I can't believe I have had this all my life and never knew about it! Even now, being on a gluton free diet for 5ish days, I am starting to feel so much better. It's weird to think that I never really digested normal, and I'm starting to now, even if it's just a little bit. I feel like I can fly around the world! I feel lighter, cleaner, and have a lot more energy. And so far, I have learned so much! Here's a few that I specifically am excited/not excited about.


1. Grocery shopping, much simpler now. Just buy everything that says "gluton-free". If it doesn't say it, you search. 
2. Indian food, 99% gluton-free. Thai food, not that high.
3. Rice flour in Lindsay's chocolate chip cookies, not the best, but it's getting there.
4. Breyer's,  haagen-daz ice cream, & Chex cereals, totally gluton-free
5. Chocolate, definitely okay.
6. Oatmeal, of course, is gone. But I do think Irish Oats is okay.

I hope this will help people who think they may have some food allergy, or have similar symptoms. You cannot just develop it, you are born with it, and most likely, your family, immediate or distant, has celiac or another autoimmune disease. If you have any comments, tips or anythin-g, let me know! I need all the help I can get!

{And I hope my friends will still invite me over for dinners & dessert nights. please?}

14 comments:

Heather and Taylor said...

Elise! I am so glad you finally figured out what those "bumps" were! Good thing it wasn't your appendix! :)

Liese said...

Wow! This is so interesting! Thanks for sharing

Shauny said...

Dani Gardner buys this yummy bread that you would be able to have sandwiches on. you can get it at Target in the food section and its a flat type of bread....its not pita bread, and I'm sorry I can't remember the name but text or call her and she'll tell you.

Anonymous said...

My dad, 16 year old sister and 10 year old brother were all diagnosed with celiacs about 5 years ago so I got really used to grocery shopping for them and cooking gluten free meals. My mom stopped buying store made gluten free bread and started making her own with rice flour and it's DELICIOUS I almost like it better than normal bread. Let me know if you want the recipe. There's tons of grocery stores now that carry gluten free pastas and brownie/cake/pancake mixes they just typically don't keep as long as gluten-filled treats. Also make sure you steer clear of licorice too even that has gluten in it! My mom always makes rice krispy treats now cause thats an easy treat that the celiac'ers can eat! And my family loves in-n-out so whenever we go together, they all just get lettuce wrapped burgers and voila everyones happy. There's really not much out there that they can't have too, it's just about finding the right stuff for you. Sorry this was such a long rant but I've really got tons of gluten-free tricks up my sleeve that I'd be happy to share! Glad you're feeling better!
-Kamryn

Mitch and Serretta Barlow said...

WOW! What a post! I'm sorry that you've been going through all this stuff! And I'm sorry that I gave you cookies with oats! I'm so impressed with your positive attitude! I learned a lot just reading your post!

Brady and Lindsay Wood said...

Elise I am so happy for you that they were able to diagnose you. I know that is the best feeling ever to know what is wrong with you and have it all make sence. I hope you feel much better with your new diet.

alexismdyer said...

ice cream and chocolate alriiiiight!!!
i love you and I'm so glad you're feeling better and that you had a wise doctor. xoxox
Hayley is a pro at this and I always admired her strength when facing this. She has so many recipes and can help you lots.
love you tons.

Topsy and Havoc said...

girl i didn't know! sooo glad you know now what the issue is..my advice is start sharing recipes and getting all the tricks of everyone you know who has the same thing.

Elyse said...

It's so nice to find out what's been wrong! I was misdiagnosed with Celiac Disease for about 2 years, so I know all about good recipes and stuff if you have any questions.

Julie said...

OK, first...what a gorgeous picture of you!! Love it!

Second, what a blessing to have a diagnosis and a treatment plan! It's nice to know what it is you're dealing with and to validate your thoughts/concerns. Funny how people were just placed in your path...and just happened to be talking about what you were secretly experiencing...tender mercies.

And, lastly, I admire your strength and positivity. This is a hard thing. YOU CAN DO HARD THINGS!! And I'm proud of you for that!

(hugs)

Anonymous said...

First of all, that is one of the most beautiful portraits of you I have ever seen.

Secondly, I am excited for you. A whole new life awaits for you, not in bed :) Although I do think being in bed is a nice thing...I hope you don't miss it!

Becky said...

Hi there. I'm a friend of Kaneischa's and she wanted me to comment because I, too, have Celiac Disease. My diagnosis wasn't nearly as dramatic. I just felt sick every time I ate for a year, so I went to a GI doctor, did a blood test, and endoscopy. That was 8 years ago now. Anyway, if you ever want to chat or ask questions or want some recipes to try, please e-mail me: beckylords@gmail.com
I just started making my own granola bars with Bob's Red Mill Gluten Free Oats, and I'm loving it. So, you don't have to suffer too much, it's just a little more work to cook for yourself.

Melly Mel said...

love you elise.

Caitlin & Hugh said...

ELISE! Guess it never came up but I am Celiac. Random. . . and I guess I am also admiting that I blog stalk you guys. I'm ok with that. There are a million things I am still learning but I am a few years in and if you EVER need to know anything. Let me know! Really I eat Mexican, Indian, and Thai like every meal. Ha. But there is such good pasta and bread and cookies and stuff to eat too! Good luck! Let me know what I can do!
xxx
Caitlin Hansen West