Monday, January 17, 2011

Itchy Legs, once again

Ella is allergic to wheat. As much as she hates it, as much as we want her not to be... she is allergic to wheat. This is an odd allergy for her. She doesn't see a reaction right away. If she eats something that has wheat in it, it often will take hours and sometimes days for her body to respond. She starts itching. At first it might be a patch of "dry skin" in her face. Followed by small bumps. Then she starts to get a tiny rash on her legs, which spreads over time. Before we know it, she is scratching everywhere.

Even after a dose or two of her allergy meds, the rashes will remain. There is only one way to make the itching stop and that is to eliminate wheat (and several other allergens) from her diet.

She is five. The only thing that matters to her is that she gets to eat things that her friends and family get to eat. And unfortunately, we are a part of a food culture where most foods are wheat based. Pizza, pasta, crackers, cake, bread, bagels, and on and on.

Over the past couple of years her wheat allergy has diminished. Mostly because we have been so strict with what she is allowed to eat. Oddly enough, this has given us a false sense of security. She's no longer a 4, she's a 1!!! On occasion, we let our guard down and let her have a little. Maybe in the form of a chicken nugget. Maybe a goldfish cracker or two. Maybe even a tiny nibble of pizza. This is a bit of a balancing act for us. We are weighing a lot of factors; her need to fit in, our desire to make her happy, our need to keep her healthy. I will admit, sometimes it is easier for us. Maybe if she eats a little birthday cake, we won't have to make a wheat-free version to take along with us. And then we give her a little extra allergy medication at night.

This might all seem a bit distorted or confusing. What are these people doing? Honestly, it all comes from a loving place. And we are always second guessing ourselves. But how much is enough? Where do we draw the line? Ella cannot possibly understand our seemingly arbitrary and changing rules. Without question she will grow up to have major control issues. And most likely, hate us.

As we have relaxed a bit on how much wheat she is allowed to have, her skin has started to get itchy again. How much are we giving her? Generally, she is allowed to have a 1/2 a piece of challah with her classmates on Fridays. And maybe a Ritz cracker on a saturday. Or we let her try something we are eating, like a bite of pasta. But not every day.

We just found out that she has been asking her her friends if they can share their snacks with her at recess. This is not a good thing, from our perspective. But for Ella it means that she can finally enjoy what they all take for granted, just a little. We have asked her to stop this and hopefully she will. (When the kids share food, wheat is the least of my concerns.)

When she starts itching, I take notice. To me, it just isn't worth making her uncomfortable. Ella definitely would not agree. "So what, Mom! It's a croissant! C'mon! A CROISSANT!"

I just hope that we are able to move past all of this one day. As I have said before, wheat allergies are so very challenging. And as much as I love finding fun ways to cook brown rice pasta, it just wears me out. And worse than all of that is the fact that my beautiful daughter suffers regardless, whether she eats wheat or not. And there is nothing I can do to take away that pain.


Cyn said...

I've been following your blog since my son was diagnosed with food allergies a little over a month ago and I just wanted to say thank you for all the wonderful information and recipes. My son has a lot of the same allergies as your daughter which makes your recipes easy to use. I'm looking forward to trying a lot of them... they look great! We're still a little overwhelmed by it all (especially the cooking part!) but finding blogs like yours has helped so much. Its nice to see that you're able to handle it well and hopefully we can too...

This post really got to me. My son is only 2 right now but I can definitely see the bigger challenges ahead when he is your daughter's age. Best wishes to your daughter and family... hope she can overcome her allergies one day!

Thank you again! BTW, I read your entry about restaurants and we happened to have a Garlic Jim's near by. My son LOVED it!! You have no idea how happy we were to be able to have pizza again (and great pizza too!). Made my day!

Heidi Miller said...

Cyn, thank you so much for your kind comments. Having a good support group is so important and I am glad we can be here for each other. Good luck with your son! The cooking can be very intimidating at first, but you will find your groove. He is lucky to have such a loving and caring Mommy!



Robert Boyle said...

Hi Heidi...... just read Cyn comments on her son's allergies and how she hopes to deal with it. She will thanks to your blog, your words and her love. While I have seen you deal with it, I hope everyone can deal with it with such positive attitude. But what they don't know, is that you and your lovely husband both hold down full time, difficult jobs. I love you and will miss you on the cruise this weekend........ Dad

Anonymous said...

I was diagnosed at the age of 50 with a wheat allergy and mold. I have the itching no matter what I do but found relief when I went to the House Ear Clinic and Dr. Deberey had done research on this problem and I took desensitation shots. Thinking back my mom had the same itching and open sore on her leg from scratching so much. I had been to many, many dermatologists before I went to the House Ear Clinic's Allergy Clinic in Los Angeles.

I have some great gluten free recipes and have found the chocolate Chip-Gluten Free cookies at Trader Joes a GREAT option for treats. They are crisp and wonderful and anyone would love them.
I feel for your daughter and am suffering with this as well.
God Bless