Wow...I haven't posted in awhile...

So now that we know she definitely does have Celiac Disease our lives have gotten harder and easier at the same time.  Harder because she has to be gluten-free and easier because since I know what food do and do not contain gluten.  Also, her allergies and asthma seem to be getting better since she has been completely gluten-free.  It makes me think that she has a weak immune system since Celiac Disease is an auto-immune disorder which would make since that she gets sick very easily and has several environmental allergies.

I called Dr. Semancik's office last week to give them her 3-month update and they were very pleased she was doing so well.  The very next day she became sick with a  cold & ear infection that has now turned into bronchitis and has been out of school for about 7 days.  She is currently on breathing treatments and just finished up her antibiotics yesterday.  The weather has gotten much colder here recently and she always seems to get very ill this time of year.

Now that we have Celiacs under control; it's just the normal day to day routine of dealing with a child who has medical issues...story of my life...

Well...she has Celiac Disease

Grace had her endoscopy on July 11th in Anchorage and Dr, Semancik said everything looked very good while he was performing the procedure, but I would have to call his office towards the end of that same week.

I talked to Dr. Semancik on July 14th and he confirmed that her biopsy was positive for Celiac Disease and she probably has Irritable Bowel Syndrome (IBS) from the damage caused by Celiac's.

Grace and I both took the news pretty ahrd at first, but I decided to put my "big-girl panties" on and try to make this situation positive.  Therefore, I am attempting to start a support group here in Kodiak for other parents of Celiac kids.  I've decided to call it "Celiac Kids of Kodiak"  and I've started a Facebook page with the same name.  I'm planning on putting up flyers around my area and going from there.  I've spoken with the Celiac Disease Foundation (CDF) and they are also sending me some information on how to foster this support group.  Hopefully the support group will be able to meet at least once a month and offer discussions, gluten-free product/recipe ideas, guest speakers and gluten-free "parties" for the kids.

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Called Dr.'s Office Today...

So I reached Dr. Semancik's nurse and told her how well the new meds have been working and they obviously told us to continue taking them.  I confirmed that she is scheduled to have an endoscopy procedure on July 11th, but first she will have an appointment with the doctor on July 7th.  Also, she does not need to be off the meds prior to the procedure.  After the confirmation of the procedure on the 11th, I now had to make arrangements for Grace and I to stay longer in Anchorage since the rest of our family (Dad, brother and in-laws) will be leaving for Kodiak at 6:45am on that same morning.  Since we booked our tickets using our airline miles, it still cost $75 + 10,000 miles each to change out flights and with miles transfers and purchases it cost u ad extra $250 for us to stay in Anchorage for an extra 4-5 hours, but it is so worth it for her to have this procedure and get to the bottom of what her actual diagnosis.  Another good thing I learned while on the phone with Alaska Airlines several times is that now kids (minors) are allowed transfer miles to others...AWESOME!!!  So glad things are starting to look better!!!

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)