Friday, January 31, 2014

Confirmation

This is just a quick update that I now have confirmation that I have celiac disease. Yesterday, I went for an endoscopy. It sounds a lot more complex than it was (for the person who has been hospitalized 3 times - twice for childbirth and once for a tubal). Basically, they gowned me up, gave me an IV, and off we went to the procedure room. Just after they started the IV sedation medication, they asked me to lay on my side and put a thing in my mouth to keep it open after I fell asleep. I don't remember a thing after that until a nurse was asking me to wake up.

The IV meds wear off very quickly and the gastroenterologist came in with lots of not-so-gorgeous photos of my esophagus, stomach and duodenum area of the small intestine. He confirmed that I have grade 1 esophagitis from GERD (reflux). I knew I had GERD since I was diagnosed with it about a year or so ago. Then he showed me area of the duodenum that were "scalloped" and "compatible with Celiac Disease". They took a biopsy which gets sent off to a lab for a final result but based on the bloodwork and the photos he took he is 100% confident I have celiac.

By the time I got home, I was feeling pretty much like my normal self - maybe a tad more tired the rest of the evening but as if nothing really ever happened!

I am going in for a follow up in 2 weeks to go over the lab results and blood work I also had done and being referred out to a dietitian.

So...it's a gluten free life for me I guess! It could be a lot worse. I'm not a huge bread eater anyway - never have been. I do like sweet breads but I shouldn't be having a lot of those anyway given all the type 2 diabetes in my family. I see there are a lot of options for gluten free pasta, etc. out there. And the world is all okay because my all time favorite restaurant, Pei Wei/PF Changs, has a gluten free menu. I can live with out breadsticks and pasta. I'm not sure I could live without  a treat of Pei Wei once in a while!!!

I have a lot of supportive family and friends. This just is additional confirmation for me that I CAN AND WILL conquer my unhealthy eating habits and maybe without gluten in my diet, I won't be so darn tired all the time.

Friday, January 17, 2014

How do you like THEM apples?

The kids came home with report cards this month. For the second quarter, Alex received straight As!!! It was so awesome to see her excited little face. And, for me, it illustrates just how much difference a teacher can make when it comes to handling a child with diabetes in the classroom. 

Last year...
  • Alex was struggling in almost all of her classes, even her usually "easy" A in reading (she reads about 2 grade levels ahead).
  • Alex was receiving a LOT of zero papers - for missing or incomplete work. She said she was in the health room for a lot of it and didn't get a chance to make work up. 
  • We had to meet with Alex's teacher several times to review her IEP and discuss the challenges with little improvement.
  • I had a child who started to "hate" school.
  • Alex was punished multiple times for not having her agenda filled out (because she was in the health room when the rest of the class was filling it out) and for having trash under her desk (kicked there by her neighbor after she left class for the health room at the end of the day).
  • I had to play nice but feel frustrated at the teacher's excuses that there are too many kids in the classroom (indeed 38 kids is a lot) AND that she couldn't possibly always catch Alex's missing work as being excusable - it was Alex's responsibility to speak up AND that it's okay for kids to grade Alex's papers which is where a lot of zeros came from because kids didn't care that she was in the health room!
 This year...
  • I've met with Alex's teacher THREE times total and all were for normal conferences, etc. - no necessary meetings because of a problem with her IEP being followed.
  • Alex LOVES school again.
  • Alex has not received a negative in her binder since day one - she had never had a negative before last year either. So were back to what I knew to be true about Alex's good behavior in school.
  • Alex received 1 B and the rest A's for first quarter and ALL A's for 2nd quarter! 
I am thankful for an understanding teacher and an awesome school nurse. I'm also thankful to have a daughter that genuinely cares about doing well in school. Her dad had promised her a new American Girl doll if she came home with straight A's about a year ago - trying to encourage her especially in math where she was getting a C for a while. This week...she got her doll. 

Wednesday, January 15, 2014

An Autoimmune Disaster

I've decided that is what we are around here. 

I haven't written in a long time. Honestly? I haven't wanted to? I think year 2 with diabetes has been a year best defined as wanting to NOT think about diabetes as much as possible. And since diabetes HAS to be thought of all the time around here when it comes to site changes, BG checks, dex changes, exercise, parties, sleepovers, stress, sleep, eating in, eating out, etc.? That doesn't leave me a lot of room to NOT think about it. So me taking time out of my precious day to blog about it? Yeah, forget it!

I think we are at a point now where sometimes it seems like there was never a time Type 1 wasn't a part of our everyday life. That can be good. I don't spent crazy amounts of time figuring out how to handle carb counting. I don't obsess over measuring every item down to the last morsel. I don't completely go batshit crazy when Alex gets a party invitation. We try to deal with it and move on. But...it can be bad. When I'm not policing the kitchen, I find Dex alarming that Alex is 350 and she SWEARS she hasn't eaten anything. Yet...I find the remnants of wrappers in her room behind dressers and such. I sometimes sleep through a Dex alarm screaming that Alex is 250 and instead of racing to bolus..I roll over and go back to sleep and kick myself in the morning for letting her run high longer than I should. I'm just being honest. 

It is what it is. I hate that I have to battle with my daughter who has gotten to a point in the d-world of growing weary and resistant. I too am weary and resistant. But I KNOW she can't have a box of Mike and Ikes and "forget" to bolus. I KNOW she can't reach into a potato chip bag and not count the chips...or at least try to bolus for an estimated amount. I KNOW she herself can't make educated guesses on dinners or snacks out with friends. "But mom...YOU GUESS," she says. Yes, I do sometimes...but based on the fact that I've become a damn good carb counter in 2 years. She hasn't. She wants to bolus 30 grams for a popsicle or 2 cups of rice. She figures 30 is good all the time, right? NO!!!

So here I am weary and tired. Not so much resistant...just weary I guess. I've been really really tired lately. I chalk it up to crappy sleep patterns - after all, I don't roll over and ignore Dex all the time you know! I was diagnosed with GERD last winter. You see, I was doing super awesome on my diet last year. I lost over 30 pounds. I was walking and even running daily. I was feeling GREAT. I was eating alot more whole grains, fruits and veggies and a lot less refiner sugars. I especially latched onto fruits. When I had a sweet craving, I ate fruit. Pineapple was one of my favorites. It was working. And then...I started getting some awful stomach pains. Heartburn. Indigestion. It got to a point that I decided something was wrong. Maybe I had gallstones? I went to the doctor. After running tests for h.pylori, gallstones, ulcers, etc. I came back positive for acid reflux disease. The first 2 weeks I was on prescription meds I threw up almost every night in the middle of the night - mostly stomach acid. It wasn't pleasant. I was told to refrain from lots of the foods I had clung to on my diet plan.

I started eating lots more yogurt and breads. In my head I thought, bread would be helpful and "soak up" the acid. It seemed to help in my mind. In my icky feeling state, my annoyance at giving up my favorite fruits and "go to" foods, I fell of my diet wagon. 

While the acid reflux got better, I continued to have some stomach problems of which I don't really care to detail. I chalked it up to my lot in life - I'm stressed. I was eating more sugar again and breads. I gained some weight back (dammit!). I felt defeated.

Back when Alex was diagnosed with Type 1, we started going to support groups. It was then I think the first time I'd heard of "celiac". I'm sure the kiss of death for me was thinking "man, I hope we never get that shit!". I mean I'm exhausted as it is counting carbs and making sure we steer clear of non-whole grains.

Alex gets a blood test every year for celiac. Twice now...it's been negative! Whew, right?

Everything I read about it talks about malnutrition and weight loss as a symptom. So I laughed and thought well that's not MY problem then! Then someone sent me an article about a link between celiac and obesity. What are the odds, right? I mean how fucking unlucky can I be that I get all the shitty symptoms (no pun intended) of celiac except weight loss???? Could I at least have that "symptom"? I mean, I'll take that one over "blood bowel movements", right???

Anyway I had to go to my doctor for a med check for ADD and he asked me about my stomach issues which I confirmed weren't much improved but as long as I stay away from my precious pineapples and tomatoes, it isn't unlivable. After some discussion he decides to run a celiac panel. 

2 days later, I receive a call that the lab work is positive. I most likely have celiac disease. I'm scheduled to go for a biopsy in 2 weeks for confirmation but from what he said and what I've read based on the type of blood work they did, it's all but a given. 

I'm a bit over the initial shock. I've been reading alot and I understand it's manageable. And, I'm sure it will help me feel a lot better. I'm sick of being tired all the time and just figuring I am a lazy person who has no willpower for anything. I don't WANT to get type 2 diabetes. I don't WANT to have an increased risk of cancer. I WANT to feel better. I want to figure out a way to eat that I can live with and is healthy - whatever that is.