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ReneeMartin added a post in a topic 3.5 Weeks Off The Gluten And Man! Am I Frustrated!
ReneeMartin added a topic in Celiac Disease - Coping With3.5 Weeks Off The Gluten And Man! Am I Frustrated!So I posted here a while ago with symptoms and my doc kept putting me off the tests for various reasons. However I finally got them done and after what felt like a century they all came back positive! I have no idea as to figures and whatnot he just talked me through them and told me to go completely gluten and dairy free for three months at which point he would try re introducing dairy and see how that went. If it went well then that's fine and i can eat dairy but if not then i'd have to come off it again for a while and reintroduce it a wee bit later and see what happened again. This all seems to go with the advice I've been given so far...
There's just two problems... I have now been gluten free for 3.5 weeks (even though yesterday i was absent mindedly decidedly making a sandwich and boom i ate 'normal' bread! Ooops. Which may explain how rubbish i feel right now?) And at first when I was saying no to Pringles and stuff that i was offered it actually made me feel really proud of myself, however now it's driving me INSANE! I just want to eat like a normal person! I have no idea what I can eat I'm constantly checking labels and questioning things that people offer me cause I'm not sure and I'm sure i can see them rolling their eyes!
I get that people are not necessarily going to understand it and whatnot but UGH!
I'm really struggling to stick to it with work and college and everything! I just want to be able to grab something and go! but no i have to think about it all the time and everything.
I also can't find anything to eat for breakfast which is killing me! and Im sick of eating gluten free pasta with cheese sauce (which i make from scratch so i know its gluten free)
I know i should get online and find out some recipies etc and im probably edging towards being a martyr but it I can't be the only one that is fed up and just wants to eat like i did before!?
Sorry for ranting, and thanks for listening/reading
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ReneeMartin added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsAwaiting Results!Hey there so after all the encouragement I got the other day I made an appointment went in and basically told my doctor to shut up and listen... maybe not quite "shut up and listen" but words to that effect.
I sat and read through everything and explained it all in what I'm almost certain was excruciating detail for him haha! He then responded with a barrage of questions some of which baffled me some what! "how easily do you bruise" my honest reply was "eh?" Then he spied the bruise from my previous blood test and his exact words were "holy cow! that's just from a blood test?" haha
Any way the questioning continued and he asked if I had any idea as to what I thought was going on so I told him about the conversation with my work colleague and he said that now he's got a full picture of everything he was going to do some more specific blood tests. He pulled the blood results that had been taken previously and babbled a bunch of medical talk and on seeing my bewildered face explained in plain English thank God!
It turns out that I am anemic, vitamin D and C deficient and have elevated levels of something or other in my liver. (apologies for the lack of liver info if I'm honest I was still trying to make sense of the babbling that he did previously) Whatever is going on there isn't serious though.
So he rattled through some more questions diet, exercise etc etc and finally sent me through to the nurse. After the bloods were taken he was quite intrigued to watch my arm bruise up. Even though the pinprick was TINY the bruise is unbelievably black/purple! He then went on to explain that what I am experiencing is "almost certainly coeliac" and commiserated + apologized for having missed it before. So the blood tests have been sent away and he said depending on the results I may have to have the biopsy done.
QUESTION - Should the biopsy be done regardless of the result. The way he was talking was that if it was positive he would not do it?
He then concluded the visit by saying "young lady, you have my full permission to go and eat as many McDonalds and other gluten offending foods as those days are likely to be coming to an end!" For as much as I understand the seriousness of the illness I can't help but feel that he was being pretty lighthearted with it all and the attitude he approached the whole subject with was refreshingly humorous!
I am also to carry on eating as I would normally until the results come back. These are expected to come in on Monday or Tuesday (which seems pretty quick!)
So until then what can I do to stop these stomach cramps dizziness and sighing/inability to catch a breath? Because I am currently unable to sleep even though its 02:11 AM. I'm also sat on the sofa, with my laptop on the floor typing this since I can't bring myself to sit up straight!
Thank you all again for your kind words the other day <3
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ReneeMartin added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsAt My Witts End!Hi there guys! I'm brand new here, and found you're wonderful community after being told to research the gluten free diet.
To be honest things are starting to make sense! After 5 years of confusion (total and utter confusion) it was mentioned to me that I was showing signs of gluten intolerance. This was mentioned by a friend at work. She herself is celiac and after I had a panic attack she was helping me to recover a normal breathing rhythm when we started to get into the discussion of how crappy i constantly feel. And I kid you not, she is the first person to have listened to me without assuming I am a raging hypochondriac!
Basically I'm looking for some pointers as to how to get the doctor to listen to me the way my friend did! In the past year I have moved twice, but I am now settled so I can finally speak to a doctor without thinking about what a waste of time it is when I'm just going to have to explain it all again...
I'm just going to go ahead and have a whinge about what bothers me, and I'll put in there if anything seems to make it any better!
-bloating (like I'm 6/7months pregnant!) my stomach, thighs and face are most noticeable. i often cant gem my jeans on for the swollen legs... -daily this has become a joke among my friends but is very uncomfortable
-stomach cramps which are too high to be anything menstrual -daily
-aching joints ( currently having blood tests for arthritis)daily
-insomnia - day/nightly
-muscle ache -daily
-headache, which often turn to migraines -daily
-dizziness -daily (usually in the evening)
-constant fatigue, it makes me feel so week that the thought of going to the shop (just down the stairs) or anything like that fills me with dread as i know how getting back up the stairs will render me useless when i get in the door. -daily
-aching back -daily
-inability to catch breath or fill my lungs completely. This often starts my panic attacks cause i get the feeling i cant breath properly. my friends also pointed out that they hear me 'sigh' a lot. I'm actually asked several times a day why I'm sighing.
-woolly head, I'm not sure what to call this but to me it feels like my brain has been replaced by cotton wool! -weekly sometimes worse than other times and some weeks it can be all week others just once or twice a week.
-constant need to pee -daily
-very painful wind that i can feel breaking up inside me
-need to sit/lie down often
- gut pain, like I'm just about to have real bad diarrhea but then nothing happens
- usually unbalanced/uncoordinated due to dizziness
- i find it almost impossible to sit for any length of time... like at the cinema
- mood swings
- and to top it all off my stutter which had improved has started getting really bad again. Although I put this down to confidence dropping because i feel so crap all the time.
So does any of that make sense to people or is it just all in my head as one of the doctors had suggested? I'm at my wits end, I'm 20 and feel like I'm just about to celebrate my 100th birthday not my 21st! I cant believe after 4/5 years of feeling so rubbish all the time there is still no clear reason!
I'm ever more emotional these days cause i just want to be able to go out and do normal things. I'd like to go to work and not feel like I'm going to fall apart at the end of it especially since my shift are only 5 hours at a time. Id like to be able to wake up one morning and not feel like the day is going to be a battle from start to finish!
Thank you in advance if you read through this it means the world to me to just have an inkling as to what may be going on or on the other hand be able to rule anything out!
- 7 replies
- 784 views