Monday, March 8, 2010

A little bit about ME and EE




I have been debating whether or not to blog about this specific topic. The topic being, ME. My personal life. Not my personal life involving my friends and family members, but me and my health. I'm deciding to reveal this because I think it could help others who may have this same condition.

My close friends and family know that I have been battling a food allergy for some time now. I have recently been fully diagnosed and am undergoing a food elimination program to figure out what exactly I'm eating that's giving me problems.

Let me start from the beginning: just over 2 years ago, I was feeling super sick in my stomach* after eating lettuces, nuts, peanut butter, peppers, avocados, and apples. I went to a doctor who told me that I had a food allergy, but he told me there was nothing I could do to free myself from the pain- aside from eliminating those foods that I know hurt me from my diet. He gave me an antacid pill and told me that would help.
(*- Stomach actually turned out to be the area under the breast bone where the esophagus meets the stomach. So the pain is actually IN the esophagus, weird, right?)

What I have is this:
eosinophilic esophagitis (EE)

I knew then when he diagnosed me (and I did some heavy Googling) that there really was no "cure" as it's not an anaphylaxis allergy and I didn't (and still don't) need an inhaler or Epi pen when I eat something that I'm allergic to. So, I just left it for the last year and a half and just didn't eat those foods anymore and lived on Tums.

Right after I moved to NYC, I started having severe pains again in my "stomach" and feeling like I had food stuck in my throat. I could breathe, talk, and swallow perfectly fine- it just felt like someone was applying pressure on my throat from the inside.

I Googled again and found THE BEST doctor for my EE allergy. She's out of Mt. Sinai and (embarassingly enough) is a pediatric EE allergy specialist. So, yes, I walk into her office to Dora the Explorer on the TV and Parent Magazine on all side tables.

After a couple visits with her, an endoscopic procedure (where the doctor puts a camera down your throat to see what's normal vs. not normal and takes a bit of your stomach for a biopsy,) and a follow up: I was finally told that I have a few options! YAY!!
Option 1. Remove ALL foods and eat just a formula for 8 weeks and go from there. Success rate: 95%
(Wow... hmm just formula? But a 95% success rate? That sounds good. But formula?)

Option 2. Remove milk, egg, wheat, soy, beef/lamb, peanut/treenut, fish/shellfish from the diet. Eat only rice, corn, oats, chicken, turkey, pork, all fruits and veggies. Success rate: 50%
(This seems more do-able... but only 50%? What about eating out? Drinking? Beer has gluten... but I'll think about it.)

Option 3. Steroids. Success rate: Questionable
(NO!)

Decision time: Option 2 is my final choice. The doctor signs me up with a dietitian and allergist (Mind you, I never ever go to the doctor so now to have to go to 3 in one place just seems nutty to me, but it's necessary.)

The doctor and dietitian tell me that I have to cook all my own meals, drink gluten free beers (and FYI, they're NOT easily available at the bar-next-door,) and change your whole eating routine. That doesn't seem too tough. "So I can still have wine, right?" asks the adult patient in the pediatric wing. "Well," says dietitian, "most wines have eggs/egg whites and milk product (casein) in their sediment process, so you'll have to research some wines." WHAT? (Turns out: Yellow Tail and many others are "vegan friendly" and have NO animal by products and I'm allowed to drink them!)

"The only thing that will suffer in this process is your social life."

What? Ugh. Fine. I'm sure this process won't be too long anyways. Couple months? Then I'll be back to eating cheeseburgers and fries, right?

"In 8 weeks you can come back in for another procedure to make sure the EE is gone from your system. Then, we will explore the foods you've eliminated and choose 1 to come back into your diet."


So, now, I'm 2 weeks in and have 6 more to go. The great thing about this new way of eating is that I've lost some weight/water and do feel skinnier, but I still have traces of ice cream, fries, and bread-basket cravings. It's getting better, though, and Dr. tells me that after week 3, I'll feel 100% better (hopefully that means no more cravings too!)

If you've read all the way down to this part, congratulations for reading the worlds longest and (probably to you) most boring blog article ever. I'm going to try to write down some of my experiences with having a "life" in New York City while not being able to eat out with friends, drink out with friends, without being that pain-in-the-ass patron asking "do you have Yellow Tail?" or "Is there soy/wheat/casein/milk products in that?" or even worse... "can you make sure this asparagus doesn't touch any butter? matter of fact, can you just separate it and just cover it in olive oil?"

If you see me ordering food like that, now you know why, I'm not just being super-careful about what I'm eating for diet-sake. Unfortunately, I don't have a choice aside from eating at home and it's going to get lonely pretty soon.

Do you know anyone with EE or anyone with severe food allergies who manage to still have a social life? I'd love to know how they do it. Thank you in advance!

8 comments:

  1. Hey Lady! I traced you down in NY and have been checking in periodically (and non-stalkerishly) to see how it's been going for you. I'm glad things have fallen into place for you.

    Your food allergy post struck a chord with me. Because of my pancreatitis, I can't eat fats or drink alcohol. Talk about limiting! As it turns out, everything worth eating has fat in it. I've been working with my crazy diet for a little over a year now, but find that I'm getting used to always ordering salads with salt and pepper and lemon juice. You really do adapt, and hopefully you'll find that you start to feel better too!

    Keep me posted on how you're feeling. Good luck!!!

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  2. Thanks, Taryn. That helps so much! Good to know that I'm not the only one going through stuff like this. It's such a pain. I appreciate you reading this and letting me know how it's going for you!

    I hope you're doing better and I will keep you posted! xoxo

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  3. Not being able to eat certain foods is such a downer for your social life! I know! Half the time I got out I don't even eat I just sit and watch my friends eat... but I also wanted to tell you I am giving you Happy 101 blog award!! so check out my blog to see what to do!

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  4. I haven't been diagnosed with EE but I've been going to acupuncture over the last few weeks and have had to cut some things out of my diet like bread, as much sugar as possible, and no raw foods. It looks like I've got some months to go as well before they figure out what's wrong with me but I wanted to let you know I feel your pain about cutting some food out!

    And also, thanks for the tip about the vegan wine!!

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  5. Thanks ladies! And thank you for the award Little Piece! Stacie- how is the acupuncture working out?

    YES vegan wine is great! Here is the link in case it helps you guys out: http://www.barnivore.com/wine

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  6. Oh no that sounds so rough! I hate that you have to deal with that! I have "crohns" (but they seem to change the diagnosis all the time-ha) and a lot of foods upset my stomach really bad so my doctor told me to do a little concoction of rice (made in a rice maker so its sticky) and plain yogurt (2 TBS of each mixed together twice a day)...it has a way of coating everything and it seems to help a lot! Hope your feeling okay!

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  7. Thanks Taylor! Good to know all that stuff. I can't believe how many people live with stomach issues and food allergies today- what did our grandparents do?!

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  8. aww that sounds like quite the crazy ordeal.

    I have an awful stomach but it's not nearly as bad as what you've gone through. People always look at me so strangely when I won't eat certain foods because I know they will make me sick.

    I hope that you feel better once this is all over! (and btw, from what I can tell, you don't need to lose any weight haha. But I guess in girl world any weight loss is generally a plus ;))

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