New Miracle Medication!!!

Since my last post, Grace has been very regular with her digestion and feeling much better.  But she was still getting severe stomach pains and gas, so I called and talked with Dr. Semancik's nurse and instead of us having to come to Anchorage before her appointment in July they called in a prescription to our pharmacy here in Kodiak and started her on Bentyl (aka Dicyclomine) that treats stomach spasms; it's a common medication for Irritable Bowel Syndrome (IBS).  She is to take this medication prior to eating up to 4x per day.  This is our "miracle medication" and she has taking it, she has been able to eat anything as long as she takes her "little blue pill" before.  At our local Fair Celebration otherwise known as the Kodiak Crab Festival she was able to enjoy herself and eat any of the "fair food" she desired.  I am scheduled to call back to Dr. Semacik's this Wednesday to give them an update of how this medication is working and I am actually very excited to call because her symptoms and the meds to treat it may be narrowing the scope of the diagnosis she may have.  She is still scheduled to have an endoscopy in July so we will know for sure what she has or does not have.  Also, we are all but convinced that she doe not have Celiac's Disease because it's symptoms are not known to be treated with any medication. Once I have reached Dr. Semancik's office I will post and update.

Treating the Current Symptoms

Upon meeting Dr. Semancik, Grace's new Pediatric Gastroenterologist, I think I expected him to be more kid-friendly since he specializes with children; but he was extremely helpful and informative.  Once we met with the doctor we spent about 45 minutes with him explaining Grace's many symptoms since birth, but more importantly her current symptoms of cycles of diarrhea and constipation.  He ended up giving Grace a rectal exam to check the muscles that allow her to go to the bathroom and he could tell that she was extremely backed up.  Also, MAJOR UPDATE, she may or may not have Celiac Disease, we will find out for sure in July when she has an endoscopy and they take a biopsy to make an official diagnosis.  Although, her blood levels indicated she may have Celiac's, these levels could also indicate other issues; such as allergies or insensitives to certain foods.  So to treat the current symptoms her prescribed, Mirolax, a stool softener that she takes in a dissolvable powder form mixed in liquid every day.  He said she she has had these issues for so long she will probably have to be on this medication for at least 2 years to be completely regular.  Since being on these new meds she has been feeling soooo much better.  The first week was hot or miss, but now she is consistently going 1-2 times daily and hardly getting any stomach aches. Dr. Semacik also said to keep her on a gluten-free and limited dairy diet.  So now we have to follow up with the doctor in mid-May to update his office and possibly decide how we are going to move forward for the appointment in July.  In order to determine if she has Celiac's she has to be back on gluten for at least 2 weeks prior to having the endoscopy, so we have decided to gradually start reintroducing gluten once school gets out at the end of May.  We are thinking it is more of a digestion/food insensitivity issue rather than Celiac's because of how well this new medicine is working.  So now it's another waiting game...

Off to Anchorage...

So Grace has still been having a lot of issues with constipation and/or diarrhea accompanied with severe stomach cramps.  I decided I would try to contact a nurse at the Pediatric Gastrointerology Clinic where she has an appointment in July to see if they had any suggestions and they said they would have to see he first.  Long story short, we have an appointment with Dr. Semancik on Tuesday, April 19th.

My mom was gracious enough to let me transfer some of her air miles so we could try to fly for "free", but I was only able to book 1-way on miles and we have to pay full fare to get back.   guess that's what we get for relocating to an island in Alaska...lol.   Grace and I are definitely going to make the most of the day aka "Our Girls Day" in Anchorage.  We are leaving at 8:30am and won't be back to Kodiak until 7pm.

I am just really hoping to get some answers or even some kind of meds or vitamins to help regulate her system.  She seems to be in agony and nothing I can do seems to help. 

Hoping to Get More Answers...

When Grace last visited Dr. Demain here in Kodiak he referred her to see a Pediatric Gastrointernologist in Anchorage.  I called the office of Dr. Semancik at Providence in Anchorage and got an appointment the week in July that we will be visiting Anchorage.  It actually worked out perfect...we (Chad, Zach, Grace & I) fly into Anchorage on the evening of July 6th, then the very next day Grace has her appointment at 8:30am and then Zach has an appointment with Dr. Neeno (an allergist at Dr. Demain's office) right down the street, then my in-laws arrive at 12:15pm later that same day.  We then have another 3 1/2 days on the Mainland to have some fun.  We've rented a condo with a full kitchen in order to be able to make our own meals since we cannot eat in most restaurants with the possibility of gluten cross-contamination. We also have plans to visit the zoo, the waterpark and take the train to Seward.  We've been here in Alaska for 4 years and my kids still have not been to Anchorage or the Mainland for a visit, so e decided this was the year!

At the visit with the gastrointerologist they will determine if Grace needs to have an endoscopy.  I have a feeling that this will need to happen because she has been gluten-free for more than 6 months and she has bouts of stomach pains, diarrhea and/or constipation.  If she does have to get the endoscopy, her and I will have to reschedule our return flights and stay a few extra hours.

I guess I'm still a little irritated that it took us moving to Alaska to find out what was ultimately her diagnosis.  She was constantly sick (at least once per month) and no one ever thought to run any extra tests/blood work for her.  I have come to the realization that mother's intuition and being your own child's doctor is the only way to really get to the bottom of what is going on.  Although, I am so very thankful for Dr. Jennifer Webster (Family Practice) for initially referring Grace to Dr. Jeffrey Demain (Pediatric Allergist/Immunologist) and ultimately getting her diagnosis.  I am also very hopeful to meet Dr. Semancik and finding out if there is anything else we can do to help Grace.

Valentine's Day 2011

I found a great Sugar Cookie Recipe in a cookbook that my mom gave me for Christmas.  I decided to cut them into heart shapes and then pipe a pink frosting heart with sprinles on the top for the kid's class parties.

Gluten-Free Sugar Cookies
from the 1,000 Gluten-Free Recipes cookbook by Carol Fenster

Makes 24 servings

1/2 c. (1 stick) butter
1 c. granulated sugar
1 T. packed light brown sugar
1 large egg
2 t. vanilla extract
2 c. gluten-free flour blend (I used a Sorghum blend from this cookbook)
1 t. xanthan gum
1/2 t. baking powder
1/2 t. salt

1. Place a rack in the lowe-middle position and another in the upper-middle position of the oven.  Preheat oven to 375.  Line cookie sheets with parchment paper or aluminum foil.

2. In a large mixing bowl, beat butter, sugar, and brown sugar fro 1 minute or until smooth.  Beat in egg and vanilla.  Gradually add flour blend, xanthan gum, baking powder & salt and beat on low speed until well blended. 

3. Roll out 1/4 of daough on lightly dusted cutting surface. Cut out into desired shapes.

4.  Once you have 2 cookie sheets prepared, bake 12-15 minutes, roatating sheets between racks halfway through baking.  Cool 2-3 minutes on baking sheets, then transfer to wire rack to cool completely. 

Creamy White Frosting
from Better Homes & Garden New Cookbook

1 c. shortening
2 t. vanilla
1 lb. powdered sugar (about 4 cups)
3-4 T. milk (I use lactose-free)
food coloring (optional)

In a large mixing bowl beat shortening and vanilla on medium for 30 seconds.  Slowly add about half of the powdered sugar, beating well.  add 2 T. of the milk.  Gradually beat in the remaining powdered sugar and enough milk to reach desired consistency.  Add drops of food coloring to get desired color.  Add to prepared piping bag.

Pipe in heart-shape to cooled cookies.  Add sprinkles.

Grace's 7th Birthday - 1.26.2011

Grace always gets super excited about birthdays in general, but most expecially hers.  This year there was 3 birthdays in her class during the week of her birthday.  We decided to make some gluten free cupcakes with frosting from a Pamela's Products.  She had a fun time sharing the cupcakes with her friends and singing Happy Birthday!

On Sunday, January 30th she had her party at the Kodiak Community Pool and invited her whole class.  We had about 14 kids attend.  The kids swam for about 1 1/2 hours and then had cupcakes & ice cream while she opened presents.  I rented the cupcake stand for $5 from Ton of Fun (a local party supply store)



Gluten Free Holiday Favorites

So I know that this time of year would be difficult for our family, especially Grace, but since I was going to have 2 weeks off from work I figured I would have the time to experiment and tweak our favorite Christmas/Holiday recipes for year's to come.


I started by baking my regular goodies with wheat flour, which turned out to be a good thing because I was able to use up all the flour and not throw it out.  I made these goodies for friends & co-workers.


The kid's classroom parties were fast approaching, therefore, the first recipe I experimented with was iced pumpkin cookies from allrecipes.com, all I  did was substitute the wheat flour with a flour blend recipe I found in a Living Without magazine and I substituted milk for lactose-free milk.  Both kids said their classmates really enjoyed the cookies.


PUMPKIN COOKIES V (allrecipes.com)
2 c. shortening
2 c. white sugar
2 c. canned pumpkin
2 eggs
2 t. baking soda
1 1/2 t. ground cinnamon
1 t. salt
4 c. all-purpose flour (substitute-gluten-free flour blend - recipe below)
1 t. xanthan gum


Icing
6 T. butter
8 T. milk (I used lactose-free milk)
2 c. confectioners' sugar
1 1/2 t. vanilla extract
1 c. packed brown sugar


Makes 4-5 dozen.  Preheat oven to 350.  Cream shortening, white sugar & pumpkin.  Add eggs and mix well.  Sift together baking soda, ground cinnamon, salt and flour.  Add to pumpkin mixture and mix well.  Drop onto ungreased cookie sheets and bake at 350 degrees for 10 minutes.


To make icing:  Cook butter, milk and brown sugar until dissolved.  Cool and add confectioners' sugar and vanilla.  Pour over warm cookies. (I liked my counter with wax paper and set my wire cooling racks on top of the wax paper.  I then poured the icing over the cookies and let harden.  Finally I sprinkled confectioners' sugar over top.)




Next, I wanted to make an apple pie, because our family's Christmas tradition is to have a slice of apple pie for breakfast on Christmas morning.  I had found a gluten-fee pie crust product at our local health food store, I had to several ingredients, but it made 4 single-layer crusts, which could be refrigerated or frozen for later use.

APPLE PIE I (allrecipes.com)

Substituted ingredients to make gluten-free

6 c. thinly sliced apples

3/4 c. white sugar

1 T. butter

1 t. ground cinnamon

1 recipe gluten-free pie crust

Preheat oven to 450 degrees.  Prepare recipe for two-crust pie.  Wipe, peel, core, quarter and slice apples; measure to 6 cups.  Combine sugar and cinnamon.  The amount of sugar used depends on how tart your apples are.  Arrange apples in layers in pastry lined pie plate.  Sprinkle each layer with sugar and cinnamon.  Dot top layer with small pieces of butter.  Cover with top crust.  Place on lowest rack oven in preheated oven.  Bake 10 minutes, then reduce oven temperature to 350 degrees.  Bake for 30-35 minutes longer.
HINT:  When working with this gluten-free crust, you make have to assemble top crust in pieces on top of apple-filled pastry.

I always make Rice Krispie Treats for the holiday season, but most rice cereal are made at factories with gluten cereals.  My mother-in-law, Debi, suggested I make them with the Gluten-Free Rice Chex that I usually have on hand in my house, so I did and they were super yummy.  My son's friend said if he were blind he wouldn't be able to tell the difference between our Chex Bars and the original Rice Krispie Treats.

CHEX BARS

1/4 c. butter

1 pkg. (10oz.) marshmallows (or 3 c. mini marshmallows)

6 c. Gluten-Free Rice Chex cereal



Melt butter in a large saucepan over low heat.  Add marshmallows and stir until completely melted.  Meanwhile, prepare baking dish with cooking spray.  Once melted, remove from heat.  Add cereal and stir until well coated.  Using a buttered spatula, press mixture into prepared dish.  Cool; cut into squares.

We also ate a very traditional dinner that included a roasted turkey (which we won in our bowling league - and gluten-free), mashed potatoes (included sour cream & milk), corn, homemade turkey gravy (Grace could not eat) and rolls (which Grace could also not eat).  We were planning on giving her the Lactaid for the mashed potatoes, but we forgot.  About an hour after dinner, we realized that the dairy had not affected her so maybe we can now slowly start to reintroduce dairy products to her....ALL IN ALL AWESOME HOLIDAYS!!!

 

Also, my mother-in-law sent me a Gluten-Free & Dairy-Free cookbook called Cooking for Isaiah, written by Silvana Nardone, the Editor in Chief for the magazine Every Day with Rachael Ray.  i haven't read through it thoroughly yet, but it does have tons of dessert recipes...yum, can't wait to try some out.

 

GLUTEN-FREE FLOUR BLEND

Living Without magazine

1/2 c. rice flour

1/4 c. tapioca starch/flour

1/4 c. cornstarch or potato starch

I tend to quadruple this recipe and store it in an airtight Tupperware container.

I've still been ordering with the online company azurestandard.com to get a lot of my favorite gluten-free products.