going to the doctor tomorrow, maybe she can confirm. we got my blood test results back the other day and there was a note saying i probably have it

which would potentially explain the fatigue

here's the thing the doctor sent

Dear Almaas, (Plurk Paste)

can't believe it's taken 9 years to test for stuff like that. SOME DOCTORS ARE TERRIBLE USELESS PEOPLE

from what wikipedia says about coeliac disease, basically i'm probably not absorbing enough nutrients from food

and if I have it then I need to go gluten-free and lactose-free for life

also this week: have not been able to move or think; exhaustion has resulted in autism flaring up, causing random bouts of fury that make me smash things and scream, particularly when I have to eat

I'm a total utter mess and I can't wait for this to be over

still getting nightmares where I wake up screaming

on the other side, though, I've managed to read two whole 200+ page books, which is more than I read in the entirety of the past six months

one was "the life-changing magic of tidying up" because oh my god I cannot live in this mess any more, it's driving me crazy

I spent a day cleaning out my wardrobe, boxed up half of my old clothes - then of course spent two days in bed exhausted

then over the course of three more days (spread out) I cleaned out my bedside table - I found letters to RavensIvy and biteymoose I wrote in 2011, and a Merlin fanfic Wilfred_Humbug wrote me around that time

essentially I think my life halted in 2011 because I have stuff piled up from 2011 but nothing after then, nothing moved for 4 years. 4 years of dust and debris. ugh

but it's all clean now!! the top of the table is empty and there's finally space for the fluffy green plant in a gold pot I've been fantasising about for the past few years

the rest of my room is still a tip, of course, but I'm desperately hoping I can work through it soon. I'm too sick to write and it's the worst feeling ever. I had oNE JOB and my superpower is gone

people keep sending me lovely messages and questions on tumblr and I can't even open my inbox

SOON

today the one thing I did was sort through ALL the pens I used for writing my diary since 2011. (all of them.) collected up all the ones that don't work any more

look at this shit

I don't know why I find it impossible to do nothing but I think this is what people mean when they say they're going "stir-crazy". I have NOTHING to do so I continue to do everything.

I keep looking at things where people try to tell other people how to get through difficult times and generally people say "reward yourself"

Your face is cute

(thank you!!!!!!!!!!!!!) =u=

--but how does one reward oneself when I can't do anything, and the only things I want are the things I can't do??

le problem

Oh shit. Once you get the results let me know. Not Celiac, but I'm intolerant through my hypothyroidism so I can give recommendations about

What foods and brands are best

Since gluten free food is fucking awful

oh shit yep

thats celiac

also you are in fact hypothyroid. your tsh is far too high

it should be below 2 tbh

i would focus on getting gluten free as soon as its confirmed by a doctor and then try get thyroid labs done again afterwards to see what impact its had

as the celiac could be affecting your thyroid and supressing it rather than it being a cause in the first place

if you and Amara want I can get you invited to the celiac nz facebook group on Amaras account :3

saw the doctor today and she said my thyroid is fine?

but she warned me not to eat raw kale because it would mess with my thyroid

also I don't think I can do the test, i'd rather just go on the diet and see if it helps

you're technically euthyroid. most doctors go by the standard lab ranges but they're very out of date and based on normal people. ironic she tells you you're fine but dont eat kale.

eat the kale you want lol

at the end of the day you have high TSH and low T4. I'd keep an eye on it because celiacs is very common in people with autoimmune thyroiditis, and Amara told me you have family history of autoimmune thyroid

disease

yeah the test is awful. its basically a biopsy

they stick a camera in one of your ends so they can see what the internal damage is in your gut

I think its barbaric personally

If you have the aniboides, you have the diease. End of story IMO

So I'm gonna say something and its going to suck and you've probs read about it

But litterally you are going to end to be gluten free for the rest of your life

You, or family and friends are going to have to pay attention to what you eat and what you are exposed to. Gluten hides in everything.

Some brands of fucking shampoo have gluten in it!

Crazy shit man. Hopefully you dont react to external sources, rather internal.

The biggest advice I can give is focus on what you can eat.

But I really really pray eliminating gluten will help

Even though I'm intolerant I noticed my symptoms going away in a few days. I know some with celiacs have had a few months of continued symptoms as their bodies detox

One of the other things is SAN REMO GLUTEN FREE PASTA IS AWFUL

like fuck man

It's gloopy and just noooope

Bariella (sp?), in the blue box is by far the best pasta I've ever tried

And it may be worth joining the Ceilacs NZ organisation as they provide support and gift boxes I think?

end rant

bless you for this help. UM YES I WILL NOT BE DOING THAT TEST THANK YOU

the doctor said it might be required for winz but seriously fuck that nope nope nope

Being gluten free is so hard but it's worth it

Yep winz requires it for sickness benefit or any financial assistance they give

well the doctor didn't put 'coeliac disease' on the form so hopefully that circumnavigates that?? she put chronic fatigue, [something?] and social phobia (because "autism" apparently raises awkward questions)

This whole gluten free thing will suck, but I really hope it helps! It really sounds like the doctors in your like have let things slip through the cracks. it's so awful seeing that happen.

one doctor in particular, dr. martin harris of the terrace medical centre. Andromz and my sister both go to a doctor in the next room along and /that/ guy is fine? just my one was a total dud ffs

over the past 9 years i've told him every single symptom and he's always said i'm fine/making things up/need to see a psychologist/specialist/try going to school

and never even did a blood test beyond basic iron levels? even though i've passed out in his office twice ??? and been referred back to him through other people saying "please check this"???

he always just smirked at me with this contemptuous look and the worst thing is that for 9 years, me and everyone i know /believed his shit/ and took him at his word because he's a ~doctor~

i only transferred away because it was too far to travel

it's such a relief to find a doctor who cares. and it's kinda weird, like... wait, i wasn't wrong this whole time?? cool

well, i think i also transferred away because i was sick of looking at the guy's stupid smirk, but still

Ugh I know that smirk. I didn't have him but I know it. It's the "I know you better than you do"

I respect anyone whose undergone that level of education but there comes a point when it's like "I'm dying"

Feeling like you can't trust this person who you're meant to is an awful feeling

I have no time for bullshit doctors. As soon as my old doc pulled that crap on me, I found a new one. And he had been my doctor since BIRTH

I am of the firm opinion that you deserve to be respected /treated, so find someone you like/treats you well. Btw my doc is Julian Foster

He's really lovely

he is. he's Amara's doctor too c:

and she keeps being baffled as to why she can say to dr. foster "i need this tested in a blood test" and he does it, rather than me and dr. harris and "you need to see a psychologist instead"

oh my god i'm still so mad about that

these people work in adjacent rooms, employed by the same company, and they're so different

let me just paste a thing i typed out to a tumblr friend earlier tonight when she asked "coeliac disease? shouldn't that have been easy to diagnose?"

um. yeah. i've been going to doctors for the last ... (Plurk Paste)

Ilu.

Have you started cutting gluten out?

hugs

my mother made me gluten-free banana pancake mix yesterday! i liked those more than normal pancakes

not completely gluten free yet because there's still cereal i want to enjoy before it's gone forever. but probably by next week i'll be gluten free. tbh i never ate that much gluten products to begin with

once we've gone to countdown and bought gluten-free stuff, i think that will be the point of no return

I prefer gluten free baking so much. It's amazing just how groggy gluten makes my tummy feel

i'm gonna miss jaffa cakes