Tuesday, 15 May 2018

P E N E L O P E





She has had thorough blood testing 3 different times, ultrasounds done twice on her liver and kidneys and nothing ever came back.  Until this time. 

Penelope came home from school in one day after having pizza for lunch and told me her stomach hurt so bad that she didn't want her after school snack.  Penelope loves to eat and she loves her after school snack so I was a little concerned about this.  She went to the bathroom and came out nearly 40 minutes later saying she felt better and could eat her snack.  I called the following day and booked her in to see our family doctor because this wasn't normal.  

The appointment finally came and he figured it was just child IBS and thought that she could just take immodium every day and be fine.  I was not ok with this and he reluctantly gave me a requisition for blood work for pretty much everything along with another requisiton for another ultrasound of her liver and kidneys.  Feeling less then happy about the whole situation, I contacted a naturopath to see if I could find answers that way. 

We went to see our naturopath and he was feeling her stomach and noticed right away that her lower intestines were really inflamed and that he could see that it hurt when he touched it based by the reaction in her eyes. He recommended that we do the 120 food blood test to see what it was that was causing her all this pain.  2 weeks later, the results came back and her reactivity to all things gluten and dairy came back crazy high and he recommeded that she get re-tested for celiac because he was concerned with how high her numbers were.  

2 days later,  Penelope and I went to the Alberta's Children Hospital where she got 6 needles - 4 that successfully got blood out of her over a 2 hour period.  She lost her mind during the first needle but was much better the following 3 times.  She drank the chalk drink to test her lactose and then we waited for more needles.  Because she had to fast and wasn't really wanting to drink a lot of water, her blood wasn't flowing like it should and that is why we had to have more needles put in then actual needles that got blood out of her.  Thankfully they micro tested them or something like that so they didn't have to poke more holes in her.  

6 days after the blood test, we were back at our doctors office and I was ready to show him the results from the naturopath testing and demand that she get referrred to an allergist for full allergy testing and a referral to a GI doctor at the children's hospital too.  I was determined to fight tooth and nail to figure out what was officially causing all of these problems because it was not normal.  When the doctor walked into the room we were in, he was like we determined that she had child ibs but you wanted more testing done.  He opened up his computer and saw the results and was shocked.  I wish I could have recorded how shocked he was because it was kinda funny.  Penelope tested positive for celiac disease as well as a mild lactose intolerance.

 I figured it was one or the other but I had no idea it was going to be both.  Our doctor hopes that once her body heals from all of the damage that gluten has caused that perhaps she will be able to digest lactose again.  He figures it will be about 3-4 months before she will really feel better and the diarhhea will stop.  She still has frequent bowel movements but most of them are of the solid variety which is good.  We have to be careful that by cutting out all of the gluten out of her diet that she doesn't have the opposite problem where she doesn't have a bowel movement at all.  

It has been quite the adjustment for us all but of course, it has been especially hard on Penelope.  A few days after her diagnosis, we had our annual family dance where there are cake walks and tons of fun food to eat.  She was pretty upset she couldnt eat the cake if she won and thank goodness she didn't.  She has never won and I would hate for this to have been the year she finally did.  I packed her purse full of cookies that I had made for her and some candy that I bought that is gluten friendly.  She had a birthday party last weekend so I brought cupcakes and snacks for her to eat so that she didn't feel left out.  They were having pizza for supper but she missed that because of soccer and we had a gluten free burger from South Street Burger.  She didn't love the bun at all.  

We have eliminated both dairy and gluten completely from her diet.  It has been very difficult to find items for to eat that meet all of her dietary requirements.  I was able to find some allergen friendly oatmeal for her that she really likes and I just bought some gluten free waffles for her too but she hasn't tried them yet because I keep forgetting to buy a new toaster for her.  She doesn't like any of the milk alternatives so cereal isn't an option at this point.  Supper has been mostly ok.  I found some pc brand gluten free pasta made from corn that is really quite good and aside from the colour you can't tell too much that it is gluten free.  Leftovers aren't that great with it but Penelope doesn't seem to mind them.  I do make most of my sauces myself and the only items I had to toss out were the oyster sauce and I still haven't seen a gluten free replacement and hoisin sauce.  I read every single label in superstore to find a gluten free version and was unsuccessful.  I did find one at Sobeys but they only had one bottle and with our luck they won't ever get anymore in stock haha.  

Hands down, our biggest struggle has been lunch time.  I did find some lactose free cheese, cheese strings and yogurt which has been a huge help but so far Penelope has hated every box of crackers i have purchased and does not like the gluten free tortillas that I found.  I did make her a gluten free and lactose free grilled cheese sandwich for her lunch the other day and she didn't hate it.  She said she didn't love the bread but she was fine to get some grilled cheese sandwiches in her lunch.  I will try a different bread when this runs out.  

I have been able to make a few different batches of gluten free dairy free muffins that she likes and was able to turn Joanna Gaines' chocolate chip cookies into safe versions for Penelope and even Finley really liked them and she is super picky when it comes to baking.  The muffins and cookies come in handy for lunches and after school snacks and soccer snacks.  We bought one box of granola bars and I am pretty sure that dry wall paper tasted better then those.  Kinnickinnick makes some animal crackers that she really likes and Finley does too so that worked out well.  It has been hard to find snacks that taste good that are both gluten and dairy free.  It is really easy to find one or the other but not both. Hopefully we continue to have success in the kitchen and finding new foods for her to eat that are good for on the go.  

Eating out has been a challenge.  We had taco time one day and she was able to have a hard shell with some beef and lettuce and a sprinkle of cheese.  She normally has a soft shell but was happy to have some cheese on it haha.  She has a digestive enzyme that she can take for special occasions where lactose foods are involved.    Taco Time has a pdf on their website that lists  every possible allergen that exists within their restaurant and was quite handy.  I don't want Penelope to never be able to eat out again and be afraid of food so we are doing our research to make sure foods are safe for her.  We went for vietnemese and that was gluten free and she loves that.  Sushi should also be safe and that is also one of her favorites.  She is concerned that she will not be able to eat the butterscotch toffee dessert at Ten Foot Henry but I haven't looked into that yet.  There is an app that I found called Find Me GF and it finds restaurants that are safe for her to eat at.  Not all of them are in the app but it is a good starting base.  I love dealing with local restaurants and establishments because they have been great in getting back to me with my questions that i have.  

I have been obsessed with reading labels for obvious reasons and I was shocked at the amount of things that have gluten or dairy or both when you think they really shouldn't  have.  For example, I was buying popsicles at walmart and the walmart brand could contain milk, soy and wheat.  Wait, what? I took that to mean that they make all of their stuff at the same plant and so cross contamination was high.  The real name brand and I can't remember offhand what it is only contained peanuts and tree nuts and nothing in the ingredients was gluten related.  And for the record, they were identical rocket popsicles too.  Even potato chips contain milk.  Like who knew salt and vinegar had milk??  Not me and I have ate them my entire life!

I did a major purge in our house and got rid of almost all of the gluten.  I kept a basket for Finley with her poptarts, her cheerios and her triscuit crackers and the bear paws until they run out.  They are kept high out of reach so Penelope doesn't sneak the bear paws.  She typically doesn't like triscuits or poptarts but you never know what she might wanna try to sneak.  I will continue to buy the poptarts, cheerios and triscuits for Finley becasue she is really picky when it comes to snacks and lunches.  We are also keeping regular tortillas and bread.  I don't mind the gluten free bread but Greg will not eat it and Finley hates bread.  

So as you can see it has been a crazy couple of weeks and we are slowly adjusting to our new normal around here. Penelope is handling it pretty well right now but I am not sure that she understands yet that this is a permanent change - at least in regards to the gluten - because she keeps talking about eating fruit loops in 6 months.  I have tried to explain to her but we will have to take it day by day.  Fingers crossed though that she heals her lactose intolerance and we only have to worry about one dietary restriction.  She did try to cut out pork the other day but Greg and I told her that she was already restricted enough and wasn't allowed to cut out anything else so everything is now chicken haha.  Apparently pigs are too cute to eat or something.  

If anybody has any brand suggestions or recipes or ideas for lunches please let me know, I would appreciate all the help we can get.  

Also, I cannot emphasize enough that you know your child best and if you think there is something wrong or not right, you have to fight for it.  It took us 5 years to figure out what was wrong with Penelope. She had 2 negative celiac tests before she got a positive and why had we never tested for lactose before now?  Had I not insisted that we get all these tests this time who knows when we would have found out what was wrong with her because I am positive that our doctor thought i was crazy. You are your child's best advocate and never forget that. 

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