Me and My EGID

In a recent comment, Kelly, also an EG adult, asked: “Am interested in what your current regimen is and how you keep up with personal & professional life while dealing with this condition?”

This isn’t something I’ve blogged much about, mostly because it makes me feel self-conscious and self-indulgent. So many eos folks have it far, far worse. On the other hand, as my husband recently told me, “Your life isn’t quite like everyone else’s.”

So, here goes. I’ll do this in two parts. Today: a post about regimen. To follow: one about coping.

Meds

Right now it’s just budesonide, after breakfast and at bedtime. The Splenda slurry made me gag and wonder if I was poisoning myself with sucralose. Now, my local compounding pharmacist mixes me up a minty Methocel suspension. My pharmacist rocks!

As a teen and early-20, I spent many years on and off prednisone. While I never had miserable side effects, I can’t help but wonder as a 40-something what it may have done to my bones.

I’m always curious about home remedies. Given my recent refluxiness, it’s lately been such things as turmeric tea (surprisingly tasty with honey). I’ve even been known to pop a homeopathic pill and could swear they’ve occasionally provided symptom relief, despite everything I know about why that just cannot be true.

In the Kitchen

This is the tricky part.  I’m 100% dairy-free, and can only eat eggs when they’re baked into something. Otherwise, it’s like having food poisoning. Oats give me instant heartburn. Beer gives me instant heartburn. Citrus juice gives me gross bloating and belching. Ingredient-reading and waiter-quizzing are cornerstones of my life.

The frustrating thing is that I have no idea if any of these reactions are related to the EG or if they are just their own free-standing allergies and sensitivities run amok.

Last year, hoping I might be able to manage my symptoms with diet, I went in for the full battery of skin-prick testing and emerged with so many positives that it looked like I had walked through a swarm of mosquitoes.

There were dairy, eggs, oats, and malt, for sure. Also most nuts, plus peanuts and coconuts; corn, rice, and wheat; beef, chicken, and lamb; shellfish (a non-issue for religious reasons); and apples! Apples!

The list was completely overwhelming and I wound up just dropping the diet idea. Still, I find myself wondering once again if maybe I could pull it off. Partly because I sometimes worry that things will just get incrementally worse if I don’t get to a cause for what’s going on. Partly because I just like to do things the hard way. Would love to hear from other adults if you’ve adopted a deeply restrictive diet or tried multiple food eliminations.

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About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Allergies, Budesonide, Case of EosGirl. Bookmark the permalink.

10 Responses to Me and My EGID

  1. Pingback: Me and My EGID (Part 2): Luck and Denial | EosinophilGirl

  2. Kelly says:

    Thanks for the in depth response! From what I’ve read and discussions I’ve had with specialists, elemental diets do work, but they are not tenable long term solutions. I would love to chat with you sometime about our mutual problem. Sounds like you and I have a lot in common and perhaps sharing our stories might help us figure out a way to better manage our EG.
    Happy Chanukah!
    -Kelly
    Snazzyk@gmail.com

    • eosgirl says:

      Kelly, I’d like very much to connect! I’ve also been told the same thing about elemental diets and have discussed the research with my doctor, but don’t think I have it in me to go elemental. Maybe for a short time, but I’m not there yet.

  3. lagiroflee2 says:

    Hi there,
    I just stumbled upon your blog searching for a page me and some other adults with EGIDs are working on. I havent had much time to read yet, but I wanted to assure you that elemental diets are potential long term solutions… its just not an easy path! Food trials do make it better though. There are a lot more adults going for this type of treatment recently, which is definitely not the norm.

  4. lagiroflee2 says:

    Hi there,
    I just stumbled onto your blog looking for a page me and some other Eos adults are working on 🙂
    I havent had a chance to read too much yet, but I just wanted to let you know that elemental diets are potential long term options… just not that easy to live with! Food trials do make it easier though. There seem to be more adults pursuing this type of treatment lately, which has not historically been the norm.

    • eosgirl says:

      Bonjour, @lagiroflee2! Thank you so much for reading, even though I haven’t updated much of anything lately. I’d love to see the page you’re working on when you have it set up. Will you let me know where it is? It sounds from your own blog like you’ve been on a pretty wild ride. Wishing you the best journey possible.

      • lagiroflee2 says:

        Thank you 🙂
        We are trying to set up a blog/ informational page for Adults with EGIDs. I will definitely let you know. We are looking to put up some basic info, the survival guide we have been working on, then sharing our own stories. We could definitely use some help once it gets better set up, if you would be interested.

  5. Lily Brown (@EGIDgirl) says:

    I know I’m a little late posting on this blog but I’m just trying to read how other people worked out their life with EGID.
    I need advice how other adults are treating it. I FINALLY got to see the doc that specializes in this field. She gave me 3-4 choices how I want to proceed. I decided to stick to my budesonide (dissolving it in water at bedtime) I got that at NIH in Washington, DC a month ago. It helps but its not a plan for life. She’s going to scope me in 3 months to see how my eos are & how we should proceed.
    I see you did go on the elemental diet? what was it like? I first cried NO to this diet cuz I can’t see myself going without solids for a month! I don’t know myself what I want. I want to hit ctrl+z on that day I drank the protein shake that triggered all this.
    ~ Lily
    EGIDgirl@gmail.com

  6. eosgirl says:

    Hi, Lily, no worries about timing. Welcome to the club. I’m sorry you’re here, though.

    Actually, I did NOT go onto an elemental diet, but I did try a very restrictive (and unsuccessful) elimination diet. I haven’t yet run into adults who have gone elemental, but I’m sure that they are out there. Are you an APFED member? You could try asking on the discussion boards over there. I’ll ask on Twitter, and I see that you are there, too, so perhaps there will be some response.

    At this point, I actually do feel like budesonide is a long-term plan for me, as long as it keeps on working, or unless things seem to take a turn for the worse somehow. When were you diagnosed? It sounds like you’ve got a lot to process right now. 😦

  7. Lily Brown (@EGIDgirl) says:

    in short: my symptoms started June 2010. dx March 2012 but I didn’t understand what it is. I went onto cortisone in June 2012 after suspecting cancer TWICE. it only hit me what this is all about & its a chronic illness in August. This also causes my entire body to be crzy, my IgG level is LOW. I’m anemic. I lose lots of protein/nurtrients thru my gut. so yeah, its a STORY.

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