I so remember that first month of finding out both my girls had celiac and my son was going to get it someday. My feelings were so conflicted - sadness for my oldest (7.5 at the time) and joy for my youngest (1.5 at the time). Still, a year out, my husband and I go through conversations about how "it's just so weird that she won't be drinking cheap beer in college" and "how is she going to bring up celiac to boyfriends that want to kiss her?" We all do it.
But, nearly a year later, we live a much more joyful life. The oldest no longer complains of tummy aches and doesn't have to get up from a meal several times to relieve her bowels. The youngest (who was so, so sickly and thin and had no color to her skin) has cheeks now. Really, sweet, loveable cheeks! I've worked HARD over the last year to grow those cheeks!!
Yes, we plan out meals and snacks. Yes, we take alternative food to parties. Yes, we're different, but you know what, we are healthy and thriving. The oldest is so good about reading labels and taking control of her food. It's really awesome to see that she picked up the nuances early on. Only food restrictive kids would even pay attention that another kids stuck a dirty hand in the bag of food.
This year's teacher asked if my kid would like to give a little presentation about celiac to the other kids in the class. My kid is a total ham and can talk to a brick wall so she happily took that on. And she ended her little thing with handing everybody a gluten-free oreo. HUGE hit! It helped the other kids see that her food was just as good.
So, yes, you're here and you're going to rock this. We are all here to help. Vent, scream, cry and ask us lots of questions.
Oh, one last thing. Both of my girls got glutened once since all this started. And, truthfully, it was the best thing that could have happened. The older kid was up puking for ten hours straight. A long, miserable night, but she was 8 by that point and remembered every second of the horror. It totally helped so that she would take it seriously.
I have a working 504 for my oldest (3rd grade) and my youngest (pre-school that runs through our school district) - both are for celiac as the girls have no learning issues.
Number one thing - find out who your 504 liaison at your school and request a meeting *in writing/email* RIGHT NOW! It will take time to pull together their team and you can get all this done before school starts. Our team: Principal/VP, nurse, counselor, Medical Services Head (the person at the district that processes all these), classroom teacher.
I'll just go over the oldest's plan since the pre-school stuff won't matter to you.
* use of bathroom without restriction (which means that nobody can ask her to wait - if she asks then she can walk out)
* teachers (including specials) need to notify parents of all food, art supplies, etc (it's on me to contact them and ask)
* she has a "special" treat box for teacher to use for rewards, birthday parties, etc (all provided by me)
* allowed time to wash hands (no hand sanitizer) without restriction
* Chlorox wipes to be used to keep desk clean
* goes to cafeteria a minute early and Chlorox wipes down her seating place (we have other protocol, but this is the one in the plan)
* parent provided shelf-stable lunches (Go Picnic) left in the nurse's office in case lunch is forgotton that day - I think there were three boxes
She was DX in 10/2013 and hasn't been glutened at school. Luckily, she's not the only kid in her grade with food restrictions so the other kids don't pay any attention to her being "different" with these items.
1. Had one last "Goodbye to Gluten" party! Friends over to eat out our freezer and pantry. It was awesome fun for the kids. We had so many desserts of just gluteny goodness!
2. Got rid of all gluten containing food. Friends, food bank, a family on Craigslist took all the expired things. ANYTHING opened went away - spices, condiments, etc. I wasn't chancing anything with small kids.
3. Started cooking gluten-free with my regular kitchen items - all the while I was slowly paying attention to what I was using and replacing those things leaving them in the package in another room. Cutting boards, toaster, these gorgeous wooden/bamboo bowls, anything plastic/metal/silicone, pasta strainer, fry daddy thingy, knife block, silverware separator thingy, cupcake/cake pans. Some things I didn't replace b/c I realize that I never used them.
4. Once I had my bearing (it took less than a week to figure out what I was using) I had the Great Kitchen Clean of 2013. Yes, it was the cleanest my kitchen had ever been! Everything came out, cabinets scrubbed, refrigerator scrubbed. It was great! Then I opened all those lovely packages and had a new kitchen!
About 2-3 weeks after I did the kitchen I moved to the bathrooms. Every open medication was pitched. Shampoos/conditioners/body wash = swapped to gluten-free products. Toothpaste, chapsticks, hand lotions (we hit Winter shortly after this happened and finding a gluten-free hand lotion for our cracking knuckles was HORRIBLE!!). Right now I'm looking into sunscreen and bug sprays to use for the summer - this researching mom gig never ends.
I've been at this a while and have a completely gluten free house and car - with the exception of some beer and my husband's shaving cream. I am crazy, crazy about things coming in to the house. My youngest is still a toddler and would 100% eat something off the floor so friends just aren't allowed to bring food over. Also, I make every kid entering my house wash their hands. This is a hugely social house and nobody complains about hand washing.
ETA: If you're looking at a product and just not sure if you want to allow it in your house - call the manufacturer. Seriously, I'm the lady in the aisle at Target calling the company on my cell. And don't ever worry about asking questions from the slew of moms here. We totally get it!
Seriously, though, I just don't know how to get these doctors to listen.
I am a F'ing squeeky wheel that they tolerate to shut me up... Seriously, I don't ask for things - I explain what I would like and why (I'm midwestern so it's a skill to continue being polite while talking people into things). Over the years I've had physicians not work with me. So I ask for copies of my chart and fire them. I've fired a LOT of doctors.
I know way too much about TSH as a former thyroid cancer patient.
First thing - it's good practice to always get blood drawn at the same place to verify they're using the same standards and ranges.
Second thing - his TSH is shockingly high. "Old school" physicians tend to use the .3-3.0 range, but the common current standard (by thyroid specialists) is .1-1.0. Assuming these are not thyroid specialists it's pretty high to not medicate a person over 3.0.
I'd get a copy of both tests and find a good Endo. At this rate I wouldn't worry about a Ped Endo, just a good one. Work with that person for proper testing and then work on a Ped referral.
Hi Stacie - I'm Angela. Man alive, I so remember that feeling of "What the hell am I supposed to do now?!" along with "Thank god we finally know what to do now!"
I know it feels like such a huge change of life, but you'll get through this - just like we all are. You are going to have to overhaul a lot, but the good news is that the learning curve is pretty high and you'll eventually get to the point that you just *know* what you're doing!
My journey started with a DX for a non-verbal toddler. Her only clues of being glutened were blood curdling screams and foul poo. Oh, the joy. Which lead to the DX of a 7 y/o that loved pasta of all forms more than anything.
Because the DX process takes some time between blood work and biopsy I used that time to make a list in my kitchen of everything I needed to replace (toaster, cutting boards, plastic/wood/silicone anything) and started buying new. I left everything in the dining room until I was ready for "the switch!" Then I went through the food - anything not opened went to the food pantry, anything opened went to friends or the trash (think critically - condiments/spices *may* have been touched with a dirty gluten spoon so they were pitched).
Literally the day after the biopsies I SCRUBBED the kitchen (probably the cleanest it has ever been) - cabinets, doors, drawers, fridge, pantry, etc. Minutes before I scrubbed I boxed all the bad stuff and out it went to the garage. Once everything was clean I opened my packages and had a new kitchen.
About a week after I had the kitchen clean I moved into beauty products - shampoo, conditioner, soap, toothpaste, leave-in conditioner, chapstick, lotion, make-up (yes, I only use gluten-free make-up b/c I don't ever want to stress that one my kids will touch it), etc. Then the medicine cabinet (would you believe I had to throw out every single oral medication?!).
My route was to not overwhelm myself so I was slow and methodical. I didn't want to miss ANYthing.
Now I'm in a good place and only allow two gluten items in my house/car - beer and my husband's shaving cream. That's it.
My suggestion would be to make a plan. Just jot things down right now that you want to ask the doctor then you can organize later. Do the same for your house - do you want a gluten-free house or will you still allow gluten? Think about how you will keep your daughter safe and then what it will take to get there.
And we are a great group of parents - ask anything.
The best "kid fatten-upper" is coconut oil. When it's in the liquid form you can put it on a spoon and drink it - my two youngest will do that. You can also keep it in the fridge and eat it in a solid state. It really doesn't taste like anything. Toss it in a smoothie. Spread it on toast. Put it on cooked veggies like you would use butter. Seriously, it's liquid gold.
For reference, my youngest is 1.5 and has been gluten-free for a month. She hasn't gained any weight, but her face is looking fuller as if the weight is right around the corner. Right now I'm just letting her body repai itself, but don't withhold food when she wants more.
This is all new to me - the mother of a toddler celiac (and probably getting the DX for a school age celiac on Monday), but I think I'm going to scream bloody murder if one more person tells me it's not a big deal. Even my husband's aunt told us that since gluten-free food is easy to find that this is going to be easy.
In less than a month I've had my baby girl get DX, de-gluted my entire house and repurchased all the essentials, spent hours figuring out what I need to do with my beauty products (I'm still nursing) and had a meeting with the director of her early childhood center. Please allow me my freaking pity party and let me state that it's a very big deal!! I am the mother - it's MY job to make sure she gets better! And *I* am the one that hears my other kids get tearful when they really want a cheese-it or a spaghetio. So now I'm making it my mission to be better in the kitchen so I can help those kids not resent the baby.