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About this blog
3 years after diagnosis and I still don't have a clue!
Entries in this blog
Is Kraft peanut butter gluten free or not???
I called them, they told me that it is, then my daughter
calls and tells me it's not!
I re-read the ingredients...what am I missing?
I don't get it - not only did they miss my diagnosis for 20 years, apparently the "complete" hysterectomy that I had 22 years ago - wasn't complete! They told me they took "everything" out.
While doing the tests for the other problems I am dealing with at the moment they happened to find something that appears to be an ovary! So why give me breast cancer causing drugs for the last 20 years (HRT) if I never needed them? What am I missing here? So if it turns out to be true, and it is an ovary.............OH MY!
For 20 years they never saw it? All the tests and nothing revealed it until the catscan? Come on, what the hell is going on - is there no recourse for this kind of abuse - as that's how I see it. I feel like I have been lied to from day one - a guinea pig is how I actually feel....They told me they didn't know what was causing my pain so they did a "complete" hysterectomy - I was 22!
No more kids (thank god for my daughter) But they took the option away from me - and I was only 22...and to find out now it may not have been needed.....How do you go back on this kind of stuff...who gets held accountable? Do we just move on and not mention to the butcher of a doctor that he made a mistake? Hope that by not brining his error to his attention he may not hurt someone else?? I wonder how many mistakes he's made over the last 20 odd years....I wonder how many people are aware of his mistakes? Thought it was something else? Are doctors not goverend like that? Are they so far above the law that no one confronts them? Or helps them to learn from their mistakes?
Why couldn't I have found all this stuff out years ago.....
I had to go for another test as they needed to see something else. I asked her if there was anything showing
on the left side as I spent most of the weekend in bed (last weekend)She said yeah, a lateral blah blah -
I missed it. So I called her the next day to clarify...something about a 2nd hernia is what I got out of that call.
So I made an appointment to go and see my family gp and get the results from him...which I should
have by days end tomorrow. Then on Tuesday I have to go to the hospital for another test...but those reaults
I'm not that concerned about. To me just the ct result should be the ones to watch! The are they performed
the test on is where I have ALL my issues...so we'll see..
get the results by wednesday....Well wednesday came and went with no call,
so Thursday afternoon I call the doctor's office and tell the lady why I'm calling
she says she will look into it and call me back....
Friday at noon I still hadn't heard so I called the office again, this is what I got
"Thank you for calling the Doctor's office, if this is between Monday to Friday
9:30 am to 5pm we are in the office except between 12-1 for lunch. Otherwise we are
here but can't get to the phone...if this is an emergency contact the hospital...blah blah"
So nowhere to leave a message and no one answered the phone all day??? What a crappy
way to run an office - leaves me hanging all weekend stressing out over these results
Now, I've got something happening on the left side, feels like my hip joint, it's extremely
hard to lift just that leg. I spent most of yesterday on the couch as the pain was intense when
I was moving around....my left side near the pelvic area is so tender I can't even touch it....
and my ctscan would have showed what was going on there, but no...they don't answer their
phone and don't call me back - how rude is that???!
back to the couch till monday.......
take the time to make that stuff Telebrix taste better. Would it be that hard?
Seriously, I don't know!
The CTscan was nothing like I expected.
I had an 11 am appointment, I wasn't allowed to eat 4 hours before the test
so at 6 am - I was sleeping anyway Then at 9 am I had to mix the Telebrix
with 450ml of water. So I got up at 8:30 and had 2 cups of coffee one after the other,
I'm a self admitted coffeeholic and I had to stop drinking coffee by 10 am anyway.
Then at 9 it was time to mix it up and drink it.
Which I had to do within 10 mins. I used really cold water (big mistake) and mixed it
together....YUCK - can you say YUCK - OMG even though it was clear, and it didn't make
it that thick OMG it was nasty! So I struggled to drink this stuff, can't drink it fast cause
it made be gag As soon as I finished it I jumped in the car and went to Tim Horton's for
my last real drink for an hour or so....
Ok, so I get to the hospital at 10:15 am, sign in and have to change. Then at 10:30 the guy gives
me a big cup of this stuff again, I almost gagged at the thought of more
and again, I had to drink it within 10 mins. Well! I started to drink it and was actually surprised,
it didn't taste as bad as the one I made at home - the difference? the water warm warm, not cold!!!
You'd think they'd tell you that! So I drank it, still tasted nasty but didn't make me gag
and then at 10:55 I went in to the room. The guy was very nice and explained what he was going
to do and what I should expect during the test. Then he tells me I have to have an intravenous dye
injected in my arm they never told me that before
anyway, he told me the dye would burn once it's injected and it'll make me think I have to - or rather
have already pee'd myself Man he wasn't kidding
So after I lay down and the machine starts, it starts instructing me when to breath and when to hold it
and the table moves forward and backward while taking pictures...
Then the dye is released into my arm and wwwwwwooooooooaaaaaaaa, he wasn't kidding when he said
it'll make you think you have to pee But the burning sensation is what was weird, it was so hot, all
the way from the tips of my fingers to the tips of my toes, I'm not kidding you, this was the STRANGEST
sensation I have ever felt! If it was a match on my hand, it would hurt...but this was on the inside, and you can
definetly feel it, but oddly it didn't hurt - what a feeling.
Then it was over, he took the needle out of my arm, sat me up, told me my doc will have the results by
wednesday, told me to drink lot's of water, asked if I had any questions, wished me a good day, and it was done!
Just like that, not what I expected at all...the worst part was the cold water mixture...and the waiting of course!
I will update through the week when I learn more.....
Well I never
It apparently is better than the ultrasound I was supposed to be setup for.
Never had one before so it should be interesting.
I have another issue going on in my life, a pretty big one - which may take time to work through!
There was an incident where my father is buried and it's pretty creepy and extremely upsetting,
needless to say I'm not having much luck being "good" with my diet. I'm trying, but there is so
much emotion involved I go for my comfort food, cheese sandwich's ... mmmmmm
Well I haven't yet, at least not a sandwich but I really want to, you can only :cry: so much before comfort
needs to be found one way or the other.
My mom is nearby but this other issue is affecting her as well, which narrows my support group [b]to a big fat 0![/b]
Does it ever get easier? Will there ever be a time when I don't want to cheat?
OMG my life is complicated, and I like everything simple....Who's life am I living?
to repair an insitional hernia I got when I had the last surgery to remove part of my bowel.
which came about in the first place when they discovered I had celiac disease... the irony of it all...
Now keep in mind, I have been sick and undiagnosed for 20 years, so imagine...if they caught it earlier
all this crap now would have been avoided....OMG I'm furious!!!!!
And since my last surgery I haven't really healed completely, my stomach is very tender, when others
touch it, I don't... :hehe: my own stomach...
so work has been minimal (thank goodness for an understanding boss) and the type of work I do...
so I can only hope that once this big hole in my stomach gets fixed I can start getting my life back to
whatever normal is...Maybe I'll even have energy...enough energy to learn and retain information about
my disease so I can live a healthy gluten-free life....HAHAHAHAHAHAHA
Don't get me wrong, I haven't learned to cook or anything simple like that!
But I've been working and I never really had the chance to cheat, BUT I didn't cheat cause
I managed to eat only 1 meal a day! It was always dinner and even though it was pretty much the same thing
twice chicken and potatoes and veggies for 2 dinners and fish potatoes and veggies for the other 2....
But at least it's a start on not cheating...and I felt like crap so it didn't really bother me not to eat.
But now I feel better, more energy..mentally I'm still lazy
So I'll try and experiment for a few more days, I'll add some eggs for breakfast and see how that does
I'm not a big egg fan
Yeah, I'm in a weird mood...hence all the smilies
I don't want to sound like a wimp or anything but this sucks!
3 years and I can't figure it out!
I have alot more information available to me now but it's got to be simple
I can't say that enough! I don't want to make 3 course meals with fancy
schmancey food and sauces. I want a fast great tasting meal at least 4 times a week, rest
of the time I don't care - there is always fish - or eggs...but summer is coming and time for
the BBQ, which will be a lifesaver...Q and salad! Done...for the summer anyway...
hopefully by next fall I can have a simple meal plan in place and yes....I'm lazy!
I have so much going on in my life that I just don't have the time to rearrange it all...
and personally for not having ANY support at all I think I've come along way!
well, far enough to survive anyway..
There are words I have never even heard of, words I cannot pronounce..... :eek:
I had a guest come into the motel where I work and she told me she has a daughter that is Celiac. She had some great cookie recipes - but again - I can't cook! So she made them for me and left them at the office when she checked out. they were great! I tried to bake them not a chance - I must have missed something...DEFINETLY!
As you can see by my posts I have a sweet tooth - which is sometimes bigger than my whole head....
Honestly, do you guys actually stick to this FAITHFULLY, be honest? Anyone that is like me - and I'm sure I'm not the only one who can't cook...so WHAT DO YOU DO?
I am sooooo sick of rice - I haven't made it right yet!
I can go for a couple of days when my willpower is in gear, I won't cheat, I'll
just wait till I'm finally hungry enough and I'll make fish and veggies and of course RICE!
But when I have brain fog and I just don't care, I'll break down and eat a burger or
something...I figure I'll pay for it later - I do ... but at the time it seems worth it!
and then of course later I kick myself for being such an idiot for giving in, and SWEARING
to myself that I'll never do it again!.............Till the next time
Sheesh for the life of me I can't figure this stuff out...it seems unless it's in simple step by step instructions - I can't seem to comprehend it
I don't mean things like you can use this product or that product - what I need is ready to prepare meals - kinda like the way I have them on my website (www.theceliac.com) under easy meals...but you get what I mean right? Step by step to the oven or table...not step by step to the grocery store, damn I'm lazy eh? You'd think that because this is a lifetime thing - required for survival, that I'd try to figure it out!
I was a already cooked - just heat up/microwave kinda gal...ya know - the simple life.....
Man this sucks
Everybody wants to go out and get "pizza" or "burgers", even after repeatedly telling them about being celiac.
The worst....a family member....living with a person who watched what you went through for 20 years, and now on the road to recovery - a total 360 life change - and they still ask "WHAT DO YOU WANT ON YOUR PIZZA"? OMG - come on!
This is hard enough...help me out!
story in a nutshell...but I want to start at the beginning and end up where I am today! I am still having issues
BIG issues! I have had surgery (I'll get into that) as a result of the celiac disease, and I'm still not done!
Talk about poor health! You live your life thinking things will get better then BAM poop happens!
I want so much to have a normal life again...I say normal cause I know I've changed and I don't like who I am
now! I was a happy free spirited child and an ok teen era (I kept getting myself in trouble)
But since the birth of my daughter (I was 20) it's been downhill health wise. Gradually affecting every aspect of my
life so as not to pin it to one thing...and Doctors??? Well, proof is in the pudding! They read your chart...they don't
listen to you...one doctor says it's in your head...they all do..I mean it's in your chart...right? so it's gotta be right! Right?
I moved across the country and saw a doctor without my previous chart in hand (they wanted too much money to transfer it)
so I told him my symptoms and he listened...he sent me to a specialist...and he listened....he sent me for tests...and voila!!!
Celiac disease! and so it begins.....