Saturday, November 29, 2008

My daughter!

Just this past June my daughter was having so much trouble with keeping up with her soccer mates! Compared to the prior year, she was running around much better. The problem was that her soccer mates had improved and developed their skills to a much greater extent. How can she work on learning the sport, when she had to put so much effort into just keeping up? Worse yet, she couldn't keep up!

To understand, let's go back a few years!

Every kid develops differently! So Angela and I were patient when she wasn't talking at 1-1/2 years. Finally at 2 years, she was sedated to do a "bear" test, which tests not only her hearing response but the response in her brain to the stimuli of sound. She passed with flying colors. The problem wasn't hearing.

We were then referred to the Minneapolis Public School System (we lived in NE Mpls at the time) and she started school, at 2. Can you imagine watching your 2 year old taking off in a school bus? The biggest feeling I remember is "vulnerable". She was significantly developmentally behind. Throughout the next year she was improving in communication with what is called a PECS system! Which is basically using pictures to communicate.

Neurologist, dermatologist, psychologist, educationalist, and whatever other more appointments was making little to no improvements into understanding what was going on. What we did know was that since 6 months of age, she had never had any baby fat, she only like to drink juice or eat bread and noodles, her poop just squirted through and she was always black around the eyes. She was essentially malnourished for 2-1/2 years of her life.

Finally at 3, a doctor suggested that she is showing the classic symptoms of celiac disease. In fact, he said he wouldn't know anything about it except for learning from one other patient and then applying it to another patient. It really wasn't overall a hard decision. Yes, some reservation, fear!, how do you live in this country without eating wheat products? Have you seen the pyramid?

It is both easy and hard to get rid of wheat. The easy part is the eating. The hard part is that any contamination, any ingestion of gluten (a part of wheat) can ruin months of progress, especially in the beginning. We were also ready in some respects compared to other families in that we had already adjusted to a no milk household. Angela actually has had anaphylactic reaction to eating rice in a restaurant that the chef had placed 1 tsp of butter into the boiling water that it was cooked in.

So, wheat be gone. And within 3 months, our daughter had gained 10 pounds, grew 3-1/2 inches and was talking with 4 word sentences. Her hair started to grow. She had only spoken 15 words, individually before, mostly "no"! She was starving for protein!

What happens for people that have celiac is that the small intestine is damaged. Therefore proteins, amongst other things that are normally too large to be in the blood stream, are in the blood stream causing an immune response that leads to effects on the brain that are similar to an opoiod intake.

She has been trying to catch up since.

And she is doing wonderful!

But she has to put more effort into things than her peers. This seems to be especially true physically!

A year ago, her school started the kids running a mile. She took over 20 minutes, in fact I think it was 22 minutes. We started making sure that she took regular walks around the lake (1.2 miles) and this past September she had improved to 18:02! You see what I mean about seeing an improvement? But, I walk faster than that! 18:02 is still wrong. Not only that but she would be so tired after a walk and the last part of it, she would practically be dragging. She always wanted to stop at a bench and rest!

Then one day, "Dad, I want to run the Turkey Trot 5k"!

and yesterday, she did.

She took just over 52 minutes! Outwardly, she can seem overwhelmed at times. But this girl does not give up, not in the long run!

I will always be proud of my girl! But it is moments like this that I get to share that pride!

From Turkey Trot 5K

From Turkey Trot 5K

From Turkey Trot 5K

Angela has since, become somewhat of an expert on cooking gluten free. She has been on the local news, she has been asked for opinions and/or options from speakers and workshops and will be a speaker in the future. She teaches classes locally and has started creating e-books. We want for Angela to provide these at a low price to help others but hope to sell in volume to make a difference in our budget! If you know anybody who is gluten free and needs help, refer them to


  1. It is good to hear of the terrific progress your daughter has made. I am sure she will continue to excel at her own rate.

    And the both of you should be proud as well in having the stick-to-it-iveness to find the cause of your daughter's issues.

    Take care.

  2. Lovely post jumper, and many congratulations little jumper.
    I'm sure she'll be catching you soon.

    I wish more restaurants in the US would be more understanding of their customers dietary needs, there seems to be little consideration from a lot of places. Good on your wife for trying to educate everyone.

  3. Big Congrats to your daughter- 5k is no small trot!

    My sister was so happy to have gluten free stuffing this year.

  4. CONGRATS to your daughter on her 5K -- great job!

  5. Congratulations to your daughter and your whole family. It sounds like it's been a tough road. I wish you continued success.

  6. We missed you guys, but sounds like you all did great!!