Celiac's Disease

Rose was diagnosed officially with celiac's disease on March 25, 2014.  It has been seven months since her diagnosis of Type one diabetes.  I have been preparing for this diagnosis for weeks but the last couple days have been so hard on me.  I am trying to work on all the emotions that come with a new disease diagnosis for my three year old.  It is a hard thing to swallow.  In a perfect world my children would be perfect physically and mentally.  But the world isn't perfect unfortunately.  I haven't wanted to post much on my blog, answer my phone, return text messaging or even get on Facebook.  I need time to feel all of these emotions, so I will post when I am ready too.

 But I did want to let you know that I we are adjusting slowly but surely.  Rose is thriving not being on gluten.  No more tummy aches and her Blood glucose has been perfect the last couple of days.  I have heard going gluten free would help out with Blood glucose but oh my has it changed it.  I feel confident it is what our whole family needs, so over all it is good.  just really hard right now.  But I can do hard things and I will be stronger because of this new stumbling block placed in my path.  thank you for all of your love and support. We have truly felt the prayers of everyone and help from the other side giving us peace and comfort.

Gluten Free Diet Plan

We are pretty good eaters but going to gluten free is going to be a challenge.  I have crazy cravings and I am not very nice when I don't get what I am craving so this will be hard.  Good in the long run but hard.  I had the wonderful opportunity to talk to Anne Woodhouse at Boise Natural Health about how we are going to make the switch.  I met her once before through JDRF.  She has an adult daughter who is a Type one and she is gluten intolerant. She was wonderful and I got of the phone with her and felt like I can actually do this. Now it would be nice to talk to her everyday just so I have someone telling me that I can do this.

I have had so many questions about our game plan is so here it is.  Our first priority when we take care of Rose is diabetes, then gluten intolerance, and finally cholesterol.  When we know what the order of priority is caring for Rose it makes it a ton easier to make decisions.  First is diabetes.  Luckily I have that pretty much under control.  Of course we have our highs and lows but for me it is completely manageable at this point.  Next is the gluten intolerance.  If you don't know a lot about gluten intolerance here is a little information to make it easier to understand.

Gluten intolerance in an auto-immune disease too.  It has over 300 symptoms and is almost always misdiagnosed.  Rose was complaining of stomach aches every time that she would eat. That was really the only symptom that I noticed with Rose at first.  Now looking back I can see some of the other symptoms.  Here is the whole list of symptoms.  The thing about it, is that most of these symptoms can be anything so it makes it almost impossible to know for sure if your child is gluten intolerant unless you get a blood draw or take gluten completely out of your diet.

What is Gluten? Gluten is a protein that gives elasticity to dough to help it rise. It is in just about everything.  It is in things from bread to certain types of drinks. When you are intolerant to gluten your internal organs get inflamed and you have several of the previous symptoms.  Gluten intolerant is kind of hard to understand because it is at a molecular level.  I am still learning about it and I haven't gotten a full grasp of it.  One thing that I do know is that when you are gluten intolerant it can affect your cholesterol levels.   Which was great news for us.  We are hoping that if we go gluten free that we will be able to lower Rose's cholesterol with out cutting out all animal bi-products.  YEAH!

After talking to Anne here is our game plan.  We are hoping to start our new gluten free life on April 1st. We will be very strict with no gluten replacements for the first 4 weeks.  We are trying to clean out Rose's body and get it back to it's natural state.  After 4 weeks, we might start trying new things such as potato flour and rice flour. But until then we are going to eat things that are naturally gluten free.  Such as vegetables, fruits, brown rice, quinoa, legumes,poultry, nuts, and seeds. Anne made it easy for me.  So stated that the first thing I need to do with every meal and snack is start out with two vegetables that are two different colors.  Now for breakfast we might substitute veggies for fruit.  Then we need a protein such as nuts, seeds, meat, or legumes.  We also need to have a complex carb, such as a low fat dairy product, brown rice, sweet potatoes, potatoes, and quinoa.

The other thing we need to add into our diet is a Bone Broth.  I haven't gotten a recipe for this yet basically you boil bones from chickens or beef and get all of the minerals our of the bones.  This bone broth helps to rebuild Rose's intestinal lining and replenish her system of the much needed minerals and vitamins she hasn't been able to get with her internal organs being inflamed and also not having insulin to digest her food properly. We will also be switching to every thing organic.  That way we can give Rose the purest form of all of her food.  That includes milk and we will be finding someone local to buy eggs from.  My sister says that Costco has a ton of organic products and also sells organic milk.

These is the plan now I am trying to figure out meal plans for four weeks.  Our 28 days with gluten free breakfasts, lunch, dinner, and two snacks a day.  I will post them when I get them done.

Update

We have been running around with our heads cut off around here.  I am just trying to keep sane so blogging has fallen to the way side.  We have not gone gluten free because we have to wait for our appointment with our gastroenterology (GI) on the 31st of March.  We are in limbo and it is so hard.  Every time I feed her gluten I know it is making her feel sick but I can't go gluten free until we meet with the GI.  So we wait and I am trying to collect as many meals and snack ideas I can find.  I am also trying to plan four weeks of gluten free so that when it comes time to change I can just focus on changing my eating habits not what I am going to fix for dinner.  There are so many great recipes out there and I am getting excited about it.  Hopefully tomorrow I can start posting some of my plans about how we are going to change our eating habits and my daily eating plans.  But today I just wanted to catch up with some pictures of what we have been up to around here.

First Little Princess Rose had some fun with some scissors.  She cut a ton of hair off.  I was so upset, but I was also so glad that she did that after we had met with all of those businesses last week. Here is the damage that was done.  Hair spraying the top of her head and doing a side ponytail covers it up pretty well.

 James was not so innocent this last week either.  He is such a monkey.  He gets into everything around my house.   The first picture is of his painting he did on his face with whiteout.  He got some in his mouth that he was not so happy about.

 We have construction going on outside of our window across the canal.  Well this is where I will always find James.  Not just looking at the tractors sitting nicely on the couch but in my window sill.

 We took James to the pediatrician for his 18 month check up which ended up being good.  We found out that he has his first ear infection and they gave him an antibiotic.  Literally two seconds ago Rose came in yelling that James was in something.  I went to my kitchen and this is what I found.  James opened up his child proof medicine cap and dumped it all out on the counter.  Apparently child proof isn't so child proof for James.  I don't even think Rose could open it up.  Crazy boy.

Oh and if you haven't noticed James is in a diaper in all of these.  He refuses to wear his clothes and when I get his clothes on he takes them off.  So he wears a diaper in the house.  Even keeping his diaper on is a fight most days. It isn't worth the fight most of the time. 

We have also been going to the park as much as possible as a family.  The kids love it and I can take a breath and not be afraid they are going to get into something they are not supposed to. 

JDRF Walk

We had the opportunity to go meet with some really wonderful people yesterday to help kick off Boise's Walk to Cure Diabetes.  We first met with some wonderful people at Costa Vida, Marshalls, and then Walgreens.  We are so blessed to be a part of JDRF and experience the good part about having diabetes, which is meeting families who have been affected with Type 1 or people who truly care enough to donate time and money to help us find a cure for Rose.

In Boise, there are two major fund raising events for JDRF.  First is the Starlight Snow Shoe Event, which was so much fun to attend and now the Walk which is on Saturday, May 3rd.  My cousins wife, Emily, and I have created a walk team for our two kids.  We want to raise money to find a cure, but more importantly we want to show our children that they are not alone in this fight.  They have friends, family, church members, and complete strangers fighting for them.  This is a very lonely disease when it comes to the everyday struggle of managing this disease, but this is the one day a year that the whole day gets to be about them and their chronic illness.  We want our team to be huge.  We also want to raise money in their honor.  The truth is they are not alone and we want to show them that in the number of members on our team and also by how much money we raise.

So please register to walk on May 3, 2014 with us.  Even if you can't be there in person you can still sign up and donate money.  There is no cost to walk and there will be free breakfast, lunch, carnival games, and amazing families to meet. If you can't donate money personally then just ask ten of your friends to donate $10.  Every penny helps.  I heard this amazing quote yesterday about donating.  "Don't donate until it hurts.  But donate until it makes you feel good."  JDRF is an amazing foundation that will find a cure for my child.  I just know it.  You should also know that for every dollar donated to JDRF $0.95 goes directly to finding a cure.  Now take two minutes and click here and lets find a cure for Rose and Jacob!

The Fricking Tri-fecta...

I hate food once again.  I want nothing to do with it.  It know it didn't cause the issues that my child is having with food but I need to blame something.  We found out today that not only does Rose have Type One Diabetes, she has high cholesterol and has a gluten intolerance.  Just when I thought I was getting the diabetes thing under control.  Ha,  I guessed wrong.  So here is the thing.  It is still early to know how allergic Rose is to gluten so we have to meet with gastrologist to find out how severe it is.  But this explains why she has been having stomach aches after she eats.  I had a gut feeling this was going to happen but seriously I was trying to avoid the truth.  Today I am just angry that we are forced once again to change everything that we eat.

I will post more later about what all of this means for our diet, but I am in a daze right now.  I don't want this to be true.  It is bad enough she has to give her self shots but now we have to restrict her diet even more.  What do I feed her that doesn't have gluten or any animal bi-product.  Yep, that is right it leaves me with Fruits and Vegetables.  I guess we will get to know some pretty good recipes about eating fruits and veges.  I know I need to be positive but holy cow, we can't catch a break sometimes.

On the positive note, we will all be a ton skinnier, right.  No more binge eating for me on carbs when my child isn't looking.  No more ice cream for us.  We will have to be better eaters whether we like it or not.  We have one last week of regular eating.  Next Monday is when we are hopefully going to change our diet.  If you have any good recipes or food that you love please, please, please send them my way.  I am at a complete loss of how to feed my family.

Busy, busy, sick

We have been running around with our heads cut off around here. I have been watching a little girl three days a week, went to a JDRF fundraiser, rode four wheelers, did scouts twice, fought with medicaid about Roses medicine, went to Dr. Flynn's for our endocrinology appointment with out my husband, held Rose while she got her blood drawn, James cut four molars, cleaning the entire apartment from top to bottom, did eight loads of laundry yesterday, took the kids to four library story times, and had eight cavities filled in the last two weeks.  We are exhausted and I think it is finally catching up to me. I have come down with a horrible cold and I am hoping it goes away soon. I don't have time to be sick. Here is a short update on Rose before I go to bed at 8PM. Yes, I am so a mom going to bed at 8 on a Saturday night.

Rose has been doing excellent with her injection therapy. We have fine tuned her long lasting insulin to 2.5 units and increased her carb to insulin ratio which has kept her blood glucose range between 90-200. Perfect. We did get the results back from our blood work and Rose has High cholesterol. Which means we will be meeting with a dietician specialist to figure out how we can get her cholesterol lowered. I never thought I would be worrying about cholesterol in my three year old. We are thinking we will probably go plant based again. We did it last year for a couple months 85% of the time but if we go that route again it will have to be 100% to get it down fast. I am so not looking forward to it but I would much rather change our diet than get Rose on medication. She is just to young to be dependent on a statin, with out trying everything else first. If we start going plant based I will let you know. This a deep conversation that I need to discuss with my husband.

JDRF Starlight Snowshoe Benefit 2014

We had so much fun on last Saturday night up at Bogus Basin for the JDRF Starlight Snowshoe Benefit.  I had never been snow shoeing and it was so much fun.  Plus it was gorgeous up there.  Can you believe I haven't been to Bogus in over ten years.  Crazy.   We just aren't snow sports type of people.  Here are some pictures from the event.

Today we also had our 7 month diagnosis check up.  Rose's A1C went from a 6.6% to 7.3%.  The doctor and us think that Rose is finally coming out of the honeymoon phase.  If you don't know what an A1C is check here.  Oh and a honeymoon phase is usually right after diagnosis where the pancreas is still creating some insulin but not enough to keep you from getting shots.  It can last anywhere from a month to six years. We also had Rose get a full blood work up today.  I was so nervous all week and I cried every time I thought about it.  As most of you know I HATE NEEDLES.  So having my child get her blood drawn was so scary to me.  But Rose was so brave and she got it down with a little amount of tears.  She is one amazing girl and I am always so impressed with how brave she is.  

Food...

When we were first diagnosed with type one diabetes, I hated food. I hated the fact the food was no longer something to enjoy but it was medicine for Rose. Here's the thing when you are diabetic you eat food so you don't have low blood sugar and go into a coma. But if you eat the wrong type of food then you can go from a blood sugar of  40 to 300 in a matter of seconds. So we have to be very particular in the types of food we let Rose eat. The sad thing is trying to explain to a three year old why she can't eat the same thing her friends are eating. But here is the truth, I would hate being told that too. In fact because some types of food are not healthy for me make them very appealing to me. Especially on a day like today when I feel like a horrible parent. I don't know if it is because I am self destructive, so why not eat bad things for me, or if I find comfort in food when nothing else will relax me. Either way looking at food that way probably isn't healthy. I know I have some food issues, and I think everybody does.

When we are younger food is what comes us down. When a baby nurses they release hormones that relax and soothe themselves. Have you ever seen a baby after it nurses. I call it the milk coma. They are completely relaxed and content. So as adults we search for food that do the exact same thing. The problem is now we have artificial food that is addicting and once we start eating something we just can't stop. But we  can't quit cold turkey from eating. So it is a fine line we have to walk.

I have dabbled in eating vegan, gluten free, and trying to count calories. But the truth is I have no will power against food. I get cranky and mad when I can't eat what I am craving. Kind of like my one year old. I need to figure out how to get over my own bad relationship with food, because I have a child who will struggle with food her whole life. Rose has snuck food from our pantry and/eaten it with out telling us. She is three and is always under my care. I can't even begin to imagine what she will be like as a teenager if we don't teach her the right way to eat and think about her food. The big question for me though is how I am going to do it.

I guess the biggest thing for me and her is making a good food choice every time we are hungry. If I choose good food for every meal then eventually we will be eating healthier, right? In the long run it will be good for us, but man is it hard.