Monday, June 27, 2011

Ch-ch-ch-ch-CHANGES

We are on a food adventure. For the past year or so we have been struggling to find out Katelyn's food allergies. (We are assuming it's food-related.) We had some success with eliminating dairy, and as her other symptoms gradually worsened we put her on a natural, whole-foods type of diet just to be sure we weren't harming her with all the dyes and preservative junk that is in so much of the supermarket foods these days. For the past I don't know how long, I have been struggling with eliminating gluten. This is by far the hardest and biggest challenge. That's why I titled this post "Ch-ch-ch-ch-changes"...because we have been making drastic dietary lifestyle changes, with many false starts along the way. (Also I just like David Bowie, right?) Gluten is in so many things, but you've got to be freakin Einstein to recognize it in an ingredients list! If the label says "spices", "natural flavors", "modified", "hydrolyzed"...whatever...then you could be in big trouble. I didn't know all this until recently, but I could have bought supposedly gluten free corn chips, and lo and behold they went down the same conveyor belt as flour tortilla chips and suddenly all the gluten symptoms are back again! The label won't always tell you that. Did you know play dough has gluten? And if your child eats an apple slice after playing w/ the play dough she can get sick all over again? Well, I learned that the hard way three days ago. Did you know that gluten-free peanut butter isn't gluten-free if the last person making a peanut butter sandwich double-dipped the knife? I also learned that the hard way...just last night. Did you know you can call the manufacturer directly to ask them 20 questions about their ingredients and whether or not they were derived from glutenous grains? Well I did that just the other day, and I am relieved to know that Silk Almond and Coconut milks are "to the best of their knowledge" gluten -free. Here are some books I have read lately and LOVED: "The Perricone Weight Loss Diet" by Dr. Perricone (I recommend this one to anyone who is interested in living healthier and looking younger!) and "The G-Free Diet: A Gluten-Free Survival Guide" by Elisabeth Hasselbeck (the conservative girl from "The View"). I'm not sure if Katelyn has Celiac Disease, but the odds are leaning towards it, and this 2nd book has been invaluable to me. Now I will be able to self-test her for gluten without all the confusion, frustration and false starts of the past year. My advice to anyone trying to live a restricted or simply a healthier, more natural diet is to focus on the foods you CAN eat, not the foods you can't. That is the BEST advice I can give you. Oh, and read a book ASAP. Bless her little heart, Katelyn never complains. Sometimes she'll cry or whimper and it breaks my heart because I know this must be hard for her, but she never complains and after we explain things to her she never questions. She has so much faith in our judgement. Sometimes I cry, too. Because I feel like we may be coming closer to an answer, and that is both exciting and scary at the same time. And because I worry about the possibility that we may be pursuing false leads. That is scary, too, because I am SO ready for my little girl to be healthy again. Because I want this all to be over with. I want answers and I want to move forward...get on with life. But...in case we are on a false lead...we are starting her on a DesBio food sensitivities kit tomorrow, and we finally got the allergist appointment set up for next month. I hope he will be willing to consider my concerns about Celiac/gluten. I am a mom on a mission. "I can do this." That is what I keep telling myself. And you, dear reader, thank you for listening to me vent.

5 comments:

POM Beasley said...

I don you "Super Mom" Dana...you are doing a great job.

Kari said...

I'm sorry, I linked through another blog because I like David Bowie too. No, you don't know me. BUT this sounds like me this last year. And I was so exhausted from the guessing I finally took my child to the doctor. I was worried about insurance. And he referred us to this awesome specialist. And the specialist tested her in many ways. And she had a bacterial infection. That was it! She's doing better now. And I'm not saying to go to the doctor, because it's scary and it sounds like you are doing better than I was, but it wasn't as bad as I thought. It helped me tons. And don't you love random storied from people you don't know... :)

KBlack said...

Super mom for sure. It's so tough to not know, but good for you for trying so many different things. Also, trust your mom instincts. A doctor may tell you something but you know your girl, always trust your mom instincts. xoxox We need to have a park day so we can all get together, it's been too long.

Mari said...

Hang in there Dana! I had no idea you were 'on the hunt'! Averie was so happy to see Katelyn at church last yesterday--maybe I should play hooky more often! BTW, I can vouch for Kari's authenticity... I DO know her : )

stacy said...

We are going through a GFCF diet right now with Gavin to see if it improves his behaviors since we think he has Autism. He has his evaluation in September. I don't think he has an allergy but possibly an intolerance. We also did the back and forth not committed 100% to the change thing and finally I said enough of that. Its been 2 months now and we've still had a few slip ups (nursery at church). Its hard. I have found it more empowering to eat more whole and raw foods and to do more cooking from scratch to control ingredients. I finally went with an elimination diet and have been slowly adding things back in. Things have been better withouth the gluten and casein so I've been hesitant to add them back in because I don't want things to go south. Is she on probiotics? What I can say from my experiences with Gavin so far is I am grateful that I went with my motherly instincts and listened to that inner voice (assuming it was the Spirit) to seek out help for him and not assumed the good old "wait it out" response I got from his pediatrician and friends. You are the best advocate for your kids!!! Gavin's Occupational Therapist has a daughter who has celiac and she had to fight hard to get her tested because her doctor didn't think she had it. Her gastro doc says the occurrence is increasing. I hope you find answers soon and that she gets some relief.