Thank you so much, you have no idea what it means to me.
I've been living off of the rest of my student loans for this semseter. Currently i'm not even on campus (i've been doing online courses because i've been really sick), so i'm at home. When i visited campus on the 24th just getting down their nearly killed me (had to use my inhailer twice). My school is about 60 miles away from home.
I just have no idea what to do. My new primary doesn't know what to think about this (she won't say as she doesn't know too much on the topic), my old primary was the one that dx'd me (ended up switching because she wouldn't listen to me). I even had to go to a nurse practitioner (who my mom really likes) and she originally dx'd me with gluten intolerence. My GI doctor won't listen because i didn't have any evidence of it in my intestines (once again you know how i feel about this), and i've yet to go back to see him since i had the gene test done (due to gallbladder surgery and such). He said if my anxiety continues he'd put me on a medication for it (no thank you).
I'm so tempted to do the gluten challenge just to show them how sick i get and to prove to them that this is what is going on. Despite the fact that i came home almost every weekend last semester, they really didn't see how sick i was.
They seem to think my blood test was positive because i had been and i quote "eating so much gluten at the time and thats the only way it would". I've tried to show them, and to no regard.
As for the milk thing, my throat has yet to fully heal (thus why i'm on a bland diet). It is very very raw.
As for a job, i don't even think i'll be able to get one. I have a very hard time doing something for the first few times (for example putting up dishes in a new house or mowing the yard). I forget things very easily no matter how hard i try. It dirves me mad and i know it will drive any potional employer mad as well.
Even if i do the challege (to which i know i'll get very sick from it), i really have nothing to loose. If anything this will stop their commenting and such, and maybe get my doctors to listen too. Right now i'm just taking 4 online courses, outside of that i'm sleeping :/
Why is it everything here lately seems to be against me?
First off, my family. At first they were all aboard, looking researching, etc. But once they learned of the possibility that it might not be Celiacs, their attitude did a 180. Now its "well the doctor said" (the doctor said NOTHING, he has no idea what is going on (or so he says)), and "you just need to tred the waters a bit" (in reference to gluten). I flat out told them no.
I mean how could it not be?
I've had D since i was 12. I used to have to take a pepto bismol just to be able to go somewhere. There were times when that didn't work as well. I used to get sooo sick after eating anything gluteny from a resturant/fast food place (bloating, D, etc) or even from home sometimes.I used to CRAVE it on a daily basis (no joke). My skin was absolutely terrible. I have some sort of condition they have no idea what it is (at one point they thought it was achne, but all treatments for that did not work). From the time i was 12 till just recently i would have to go to the bathroom every 30mins or so or i'd have an accident. No idea what that would be caused by (stress they said ).Indigestion. Knee pain from heck. Massive weight gain. Throat damage from acid.
I could go on, but i think you get the idea.
Now right before i was DX'd my D became uncontrolable, daily event (which was really hard as i was living on campus at my school at the time). I would vomit on occasion (i was never one to do this unless i had the flu). My skin would start burning, nothing would help it. My insomnia reached a peak. Indigestion would get so bad that i could not breath.
All the while the doctors thought it was either the flu, a virus (to which i was told to suck it up), athsma, and panic attacks.
It only started getting bad after i got the flu really bad (and had an allergic reaction to an antibiotic a week later).
But yet, after going gluten free:
My D stopped completely (i've had maybe 4 instances in the last 5 months?). My skin stopped burning. My anxiety went down some. I've lost a lot of weight (~40lbs). My knees don't hurt as bad anymore (only when a storm comes in). My skin is clearing up (!!!!), i no longer get those cycst things i used to get.
But, yet, they don't believe me. I was positive on the blood test, had both genes on the genetic test, yet was negative on the biopsy (GI doctor swears up and down he did my whole intestonal tract, i call bs), and i have done sooo well on the gluten free diet i have no desire to go back to that crap. I did try it again when i was still being tested, the first time was okay, body screamed at the second and third time.
And apperently its my fault that they can't eat the way they used to anymore with buttery sauces and all that crap. I told them if they want it they can have it, but no they would feel guilty, and thus choose to remind me of it. :anger:
I told them i would cook my own meals, but nooooo i can't do that.
They get on my case of eating. "Well there is no way you are eating enough for a proper diet"... Sorry, but i eat better than you do (i said this as well).
They keep trying to get me too eat foods i know will come back up on me: eggs, nuts (except peanut butter), beans and lentils. I have textural issues with those foods, i cannot handle them (yes i have tried many a time...).
How i'm not getting enough dairy (i drank a glass of milk yesterday, it irritated my throat so bad ).
I finally figured out what was wrong with my bread, i didn't even realize that i couldn't share a breadmaker (my fault). Now i know if i bring it up i'll get my head bit off ("Well why can't you? blah blah blah"). And yes, the breadmaker has a major scratch in the container and grandma doesn't clean it that well. And no i can't bake in the bread for heaven forbid i turn the oven on when its hot outside. I've been wanting to get my own strainer (and other things) for quiet some time. Nope not allowed.At least i have a toaster
I eat things plain jane (maybe a little salt and pepper), i can't handle anything else at this point. But of course i get nagged about that as well.
At this point in time, i don't know what to do. I cannot move out due to physical and psycological issues. I don't know how to drive (i get really panicy when i'm in the car not to mention motion sick). I have tried anti anxiety meds, i flipped out on the lowest dose of the mildest one they had. i don't know if i'll be able to return to school next fall, and i might end up transferring to a local university.
My dad is not an option, as he and his wife eat out on a near daily basis (not to mention my stepsister's three young children and my half brother).
My cousin was DX’d with it, yet three months afterwards her doctors said she was “fine”. She still has stomach issues (in my opinion, I believe this is wrong. She’s skinny as a stick, very small, etc. My dad did say she had a hard time on the diet because she wanted donuts and such).
Any comments would be appreciated. This is more of a rant than anything, but if anything I thought you guys would understand.