I am at a low point right now. I've been managing dd's allergies pretty well for almost 6 years. I'm long past that initial 'how am I ever going to manage all of these allergens' phase with her. Still, as you all know, traveling and social events can be challenging.
Now I have been diagnosed with EE. My doctor hasn't been very forthcoming with information and only offered a PPI for reflux as a solution. That made things worse so I stopped taking it. I did some research on my own and concluded that a 6 food elimination diet (wheat, dairy, soy, eggs, nuts and shellfish) was the best next step until I see the doctor again. He told me to come back in June to discuss doing another endoscopy. I've developed more difficulty swallowing in the past 10 days so I moved my appointment up to later this week.
I guess I'm mainly frustrated by not knowing enough to manage this effectively right now and the process of figuring it out seems incredibly difficult. I'm having a hard time with food since wheat and dairy are some of the only things dd CAN eat. Adding more allergens to this family was about the last thing I needed! I'm scared it's never going to get figured out even though that's probably not realistic. The idea of going on our summer vacation seems unfathomable right now.
Like I said, I'm at a low point. I'll be fine once I know exactly what I need to do. I just knew you would indulge me while I have a rare pity party. Thanks for listening!
:grouphug:
I just know that you'll figure things out, but that overwhelming drowning feeling is just like an initial diagnosis. I was surprised by how ANGRY I became in figuring out how to manage my husband's (diametrically-opposed) needs as a Type II diabetic. All the advice for Type II was useless to us as a family which truly cannot rely upon (even a little) nuts, eggs, or fish as a protein source, nor on dairy or soy as a major staple.
It does get better again. You'll figure this thing out, too. I know you can do it. :smooch:
Hugs from here too...
I felt the same way when I got my initial elimination list from the allergist. For the first few months, I pretty much ate the same thing over and over again. Then I was able to add back in some foods (hopefully you will be able to as well) which helped a lot. Now I get annoyed when people suggest that I'm limited by the allergies - yeah, it's a big list, but I can make almost anything, save maybe an omelet or the like, which I don't want anyway. DH's family members are constantly surprised. (You made this...and it's safe for you...but it's good!)
Have you tried more than one PPI? I have pretty severe reflux (but not EE) and it took some fiddling to get things to work for me. I still have reflux, but it is exponentially better - we finally settled on a combination of twice daily zantac and prilosec, and then a prescription digestive enzyme with meals to get things out of my stomach faster.
I'll be hoping that you'll get things figured out so that you can enjoy your summer vacation - feel better.
No advice, just lots of :grouphug: :grouphug: :grouphug: .
Diet restrictions suck.
Multiple restrictions such more.
Feeling rotten sucks too.
You're entitled to wallow.
More :grouphug: .
I'm so sorry. It does suck. Like CM, when my DH was diagnosed with diabetes, I felt like I could not handle more diet restrictions. I was mad at DH. Like it was his fault!
Hang in there. :grouphug:
Hopefully you can get informed quickly so you feel like you have some control over the issue! I'm sorry you are stuck with this diagnosis.
I'm so sorry you have to go through this hk.
Hopefully, your doctors will be able to help you more in figuring this all out. It might be worth getting a second opinion from another doctor that specializes in EE.
:heart:
We've been pummeled with hit after hit recently too even though I recount only a fraction of it here. I'll party with you until you see it through. Between us all we're on insane restrictions until more testing, kids are older, etc. The biggest blow was probably the cold hives and possible exercise induced. Food I can handle, I have no idea how we're going to avoid entire seasons and holding back a kid built like an ox from physical exertion and still develop normally.
In the meantime what can you cook with and eat? I've probably got some workarounds for virtually anything.
Nothing more to add just wanted to give some :grouphug:
HK, can't remember where you are. If you are anywhere near NYC metro, let me know. I might have some support group info.
Sorry!
Take a few moments to let your emotions go, you're losing some freedom, and then find your strength - because we all know, you can do this if you must!
:grouphug:
Thank you so much everyone! Your comments made me feel quite a bit better!