The Celiac Report. Tips and Resources from the Nest

My family was just visiting.. including my brother, sis in law, neice and nephew.

My lack of domestic skills becomes so BLARINGLY obvious when she is around, and I always try not to focus on how bad I have been, by focusing on how much better I can be and open myself up to picking up some great tips.

I try not to beat myself up too much about being responsible for my daughters poor eating habits. I know she has a disease, and I know serving 3 good meals a day is a challenge for me, so if we both work on doing what is healthy for us.. she wont eat Gluten, and I will do my best to put good food on the table, then we will both repair ourselves. I know she is the one with the real challenge, but sometimes it seems much easier for her to do her part than me mine :).

Here are a few tips for now:

1) You make the meal and serve it at the table. Make a weekly schedule of what you will make, so you take all the thinking and guesswork out of it.  She literally will look at her weekly schedule and Tuesday says Burgers so she takes them out of the freezer or starts cooking, without having to wonder.. I know you agree this helps.  Then, if your child isnt interested, there is ONE alternative that they can choose.. Yogurt. Cereal.  The alternative has to be something that does not require preparation.

2) It pays to just put the veggies on the plate even if they NEVER eat them. Day in Day out, alternate, so that it will be a part of their life, and they will know it’s what makes a complete dinner. She didnt actually say this.. I am adding it myself, since I always saw something like cukes or avocados on her childrens plates

3) Make meatime FUN. Cute plates that are available aplenty..  and you will LOVE this one. In order to encourage more eating, you can either:

a) Draw on a dry erase board the picture of the plate with the food on it, and each bite that is eaten (like chicken nuggets - Gluten Free of course!) will have you erasing part of the plate, until you erase the entire plate.

b) offer to draw a picture of something, and each bite will have you drawing another part of the picture. Even though I am the WORST at drawing, they love it when I illustrate something, so an offer to draw a princess will definitely win some bites!

What works for you?

Since My daughter has not been growing at the rate she ’should be’ since becoming Gluten Free,  the Endo had scheduled her for more tests. The blood/genetic tests came back all ‘clean’, aka ‘negative’,  so this time he sent her to test for missing amino acids. Apparantely there are 2 amino acids in our body responsible for growth - Arganine and Chlemadine (I am sure misspelled here). If both are absent in your body, then there will be a growth deficiency.

Then you become a candidate for Growth Hormone.

I have to wonder why we are just doing these tests NOW, when my daughter was ‘undiagnosed’ as a Celiac until just 3 months shy of 6, and she is now 7 and 3 months.  Lets store that comment in the ‘useless cant do anything with them, even if you need to repeat them’ file.

2 weeks ago, my daughter and I spent the morning in the Pediactric day care unit of the hospital. This first test was the Arginine and they did something like this - injected her with  the amino acids and then took blood from her every 15-30 minutes multiple times over the coarse of a few hours. It was a very tough morning, since the children’s outpatient care is in the same area as the pediatric cancer ward. Thats a story for another time.

As requested, I called up the doctor for results, only to hear the words I had only heard ONCE before in the last 7 years of tests.  Once when she tested positive for Celiac, and now ONCE to hear that she need indeed test ‘positive’ for a deficiancy.

Next step is to repeat this process, this time with the amino acid Chlamadine (the other one!) . The test is similar - fasting from midnite the night before,  injection, blood tests, only they give you a relaxant or something since there is a little more pain involved.  Next available apt is Nov 1. 07, unless there is a cancellation.

We shall see..

Sweet..

My 4 year old son and I decided to surprise our Celiac Princess and bake her a cake using all Gluten Free ingredients. Our weekend meals usually have some bought cake (I had given up baking things she cant eat, but still bought them for our company) and she gets the raw end of the deal with some piece of freezer burnt Passover cake.

Her cake was average, I can find a better recipe.. tastes a little too thick, but I guess thats what Potato starch will do to ya! It could also be that I substituted most of the oil for apple sauce.

When she was enjoying it this afternoon, she said.. I cant believe I am allowed this!

Something remarkable about my daughter. It would NEVER occur to her to cheat, or get frustrated about her reality. Whenever I am at the local bakery, the magnitude of what is unavailable to her FOR LIFE gets to me… not her! Even at almost 6, when diagnosed, she was old enough to appreciate good tasting wheat filled products.

The only request she EVER made, which we have stuck to 95% of the time, is that we dont eat Pizza in the house in front of her. Once we discovered how to make a version for her, she was pretty much ok with it - of course then we just made it for everyone like hers (using different breads).

I am going to create a category on the site for I cant believe I am allowed this, and whenever I come across something yummy, or someone lets me know about something, I would like to include information about it.

PS - I just read today that my princess is allowed Buckwheat. I didnt know that.. not that she would come near it with a 10 foot pole, but good to know.

Its Around 4PM and we are at the local grocery store. We just came from the dermatologist, since my daughter has a terrible rash on her neck. Although I insisted to the doctor not to confuse it with a standard case of Excema since  Dermatitis Herforma (or something like that),  is a common symptom of Celiac sufferers,  and often confused the two are confused,  he shrugged me off without a thought and said IT IS NOT THAT (dont feel like misspelling it twice). It is actually molluscum something or other.

Ok, people, my daughter has a rash on her neck that has nothing to do with Celiac disease.

Moving on…

At the supermarket, it begins to sink in how I have not done my proper mommy duty that day (for your newbies..food is a challenge for me too) since my daughter eyes the cut up chicken and meat and starts hugging the glass that she could eat it all up.

YUCK.

I quickly ask what do you want.. and we purchase an entire chicken (just for her), which she insists will be her lunch (its almost 5 by the time we get home) and 4 pounds of wings, for dinner on the barbeque.

My daughter has surprised me before and there is no such thing as wasted chicken in our home, so I purchase it and rush home. Throw the chicken in to broil and it takes an agonizing hour until it is cooked (I did not take it apart as per her request) and cooled off, on a plate in front of her. Somehow I know not to get busy with the barbeque just yet.

She eats about 5 bites and is finished. I feel guilty all night what she might have eaten had she not waited so long and let her stomach shrink.

 Then I finished off her chicken.

If you are like me, you will expect to see an immediate weight / height gain in your child when going ‘Gluten Free’. You can (you probably Cant) imagine my dissapointment when months and months were passing without any noticeable difference.

 The Gastro sent us to a food clinic. He suggested that perhaps the food issues are deeply imbedded with memories of pain and the easiest way for her to solve the problem is not to eat. We did the food clinic, creating a 4 foods minimum per day chart, and months later nothing. The Endo sent us to do Genetic Blood testing, so we took our sample to the hospital and waited the required 3-4 months to find out she is fine.

This past trip to the Gastro, he was visibily upset. Her BMI (body mass index) were going down! So yesterday we spent the morning in the pediatric day care unit testing my daughter as a potential case for growth hormones.  Ok this was in a foreign language, so I am not sure I am going to translate it appropriately - there is an amino acid in our body that encourages growth. It is called Arganine?. In this test they give you extra amounts of it, and take your blood every 15-30 minutes. They are looking to see peak levels (of something). 

Ironically from when the Endo suggested the test (end of June) until yesterday, my daughter gained over 1 pound and grew half an inch. When I mentioned this to the nurse, she noted that every doctors scale is not the same, so I really cannot be excited unless I return to his scale to compare.

Results should be in on Monday or Tuesday. I am not a What if person, so wont go there now.

Last words of inspiration.

 ’MOMMY, I’m HUNGRY!!!’ …. Ayden had to fast from midnight until the test was finished, so no food until 12:30 noon.

Music to my ears.. 

Not a bad day, considering I was not around at all, wrapped up in my own business world…

Drank a ’shoko - healthyish chocolate milk for breakfast

Gluten Free Cracker

One rice cake with Tuna

small piece of Chicken/2 hot Dogs/ little Rice (you GO girl!)

French Fries

2 more bites of tuna

This was a great day!

*small bowl of gluten free cereal (chocoloate rice krispie style) with Organic Milk

*Piece of Gefilte Fish (White Fish Roll boiled in water - traditional Jewish food )

*Chicken Wing and a few few bites of a thigh

*Banana

*A cooked potato (this was the real winner.. and rare for her!)

*As usual her nightly ’shoko’ - which consists of cocoa powder, honey, and Goats milk. Her drink in bed.

Looking back it actually seems pathetically little, and unlike her Mommy, she managed to eat ONLY that, with no snacking, other than one little icee.

Yet this is a called a GOOD day, so stay positive with me!

~~ celiac princess’s MOMMY

True this is the first post, but this is hardly the beginning.

When you, or someone you love, has been suffering without explanation for YEARS, it is impossible to identify the beginning.

Where are we today?

Cure. Relief. Hope. Revival. Health. Sanity. Peace of Mind.

 One would hope!

However, after exactly 1 year and 4 months of being diagnosed, my daughter weighs LESS, and her BMI (body mass index) is dropping.

I want to write this blog to keep a diary of her eating habits, gluten free stuff, trials, triumphs, to share my sense of humor and be inspired and taught by others. To join a community of other parents of children of Celiac, to show off my mad blogging skillz.

What I really want is for my daughter to grow, gain weight, and be healthy . Is that too much to ask for?

 Aydens Mommy