What aspect of living with Coeliac Di... - Gluten Free Guerr...
Putting in 110% effort, every single day, for almost 6 years, and getting very little return on my investment.
I am so fed up with never feeling 100% well no matter how careful I am
I agree with Liana and Mia. However careful you are - and having blood results say you haven't ingested any gluten - you never feel what I would call "well".
I too have never felt 100% in all the years I have been a coeliac, also I haven't had any check-ups in 11 years !! so I will be seeing my doctor about it.
i agree with everyone since i was 16years old and i am now in my 50s i dont know what feeling really well is.so i have just change doctors and these know alot more about celiac.or at least they dont brush it under the carpet.i now have blood tests every 12months and i remind them i am celiac.
As undiagnosed - dieticians telling me I'm missing whole food groups and it isn't good for me. They don't want to listen to the benefits I've had since being gluten and dairy free.
I still have the same issues of not feeling well - as in the other comments - but really wish listening was part of the medical profession training
Agreed. Having felt poorly since my early 20s, and then briefly feeling excited and inspired when diagnosed (ah, at last: a reason for why I feel rubbish) and now the feeling rubbish is starting to creep back in again, despite adherence to a gf diet...That's the most frustrating thing!
I think the worst thing is whe you eat at a friend's, they've gone to a lot of trouble, then you watch them cut the cheese with a knife with breadcrumbs on it, & you know they haven't understood! And you've just eaten the meal they cooked with love for you!
I am not celiac but suffer with a very under active thyroid.Within a week of eliminating gluten I stopped feeling so lethargic and generally felt much better.My daughter however is diagnosed celiac so the food change wad quite easy.I am due another blood test soon which I do privately through my nutritional therapist due to the G.P saying take thyroxin for the rest of your life and not considering a natural way to wellbeing.
Feeling unwell for 3 or 4 days as a result of the tiniest bit of cross contamination in restaurants or from food that doesn't have gluten listed in the ingredients.
I find the site amazing..we are all saying the same things...we dont feel well...I have a "specialist coeliac Dr" believe me he is so out of touch it is unreal....you would think with the amount of people suffering someone somewhere would know what they are doing...or is it just me?
Having to read labels, menu limitations, high cost of GF products , and the planning and prep required when travelling all rank high in importance to me.
The planning and prep required when travelling wins my vote, just, because it makes it awkward when travelling on business, and when travelling for pleasure it takes some of the spontaneity out of it, reducing that pleasure you used to get when holidays and days out were easy and carefree.
That aspect of travelling for pleasure is slowly being replaced by the satisfaction that I get when I find that I can find things that are gluten free when travelling. The cloud has a silver lining, but it takes some finding, and my wife isn't always happy about eating in some of the places that I have no choice but to go to.
I really wished we could forward the link to this site onto the medical profession and may be they might then understand a little of what being a coeliac is really like.
It is amazing at how many questions come into the mind when dealing with day to day chores like shopping. For instance I sometimes wonder whether when I have a rogue symptom appear from out of nowhere that appears to be from gluten just how could I have found myself to be affected. I then wonder if the packet of rice that I picked up at the supermarket may have been handled by someone who had just come off their break and perhaps not washed their hands after having perhaps a flour covered roll ... sometimes you see people chomping cakes and they pick things up and put things down - do they leave minute traces behind on the packaging of something that is picked up in all innocence? Of course, we can't afford to think that way can we? And yet their are times when I have suddenly overwhelmingly had a headache andnbillious attack come from out of nowhere and I have'nt ventured outside - just a simple breakfast of perhaps rice and fruit and a lightweight lunch of perhaps an omlette .. then out of nowhere a gluten attack ..
i thought i was the only one still feeling rotten after sticking to a strict gluten free diet, & trying to eat healthy & exercise, i feel like a right moaner at the doctors when the blood tests come back ok, even though the nurse bet her pension that my thyroid wasnt working properly,as i seem to hit a brick wall some afternoons & its really hard to summon up enough energy to make some tea.
sometimes it just dosnt seem worth it to stick to the diet for no results.
Everything on the list above is a complete pain in the bum.. and tummy.. and head! But for me the most annoying thing is trying to get people to understand! Even my mother was offering me bread a few days ago. She had made up sandwiches for herself and had one left over so asked me 4 times if I wanted it! I had to keep telling her I cant have it but she kept asking even though she claims to have a slight intollerance to gluten too and should understand!
Also my friend and her family came to stay with us for a couple of days over easter there and my husband watched her make toast then scrape the crumby knife on the butter dish! He didnt want to upset her so he didnt say anything to her he just cleaned it up when she went into the other room. its things like that that no one takes into account!
Thanks for all your comments - keep them coming! It's interesting to see that many of us don't feel a 110% on a GF diet.
As many of you have mentioned one of the biggest problem is not feeling there's a great return on your investment. After all we'd expect to feel 110% GF wouldn't we? The problem is we can't actually see the damage in our bodies pre- GFD and after GFD so it can seem like a lonely fruitless path at times. It's especially hard for the silent coeliacs who didn't feel that ill before being diagnosed. Perhaps we all need to create some kind of virtual calendar and treat ourselves for each month gluten free? 'Maybe we need a gluten free me' celebration day. Or a diagnosis day. If they can celebrate name days in Greece why don't we create diagnosis celebration days? After all no-one else will praise us if we don't! The plus side is our heads reminding us that the science & health research shows the longer we're GF the less likely we're going to develop any form of cancer due to the coeliac disease which is a positive. I've met two people recently who mentioned their relatives had died from undiagnosed coeliacs and that certainly puts things into perspective.
Personally I find that reading the labels becomes second nature but the forward planning and thinking where to eat is what I find hard. As someone who likes to visit cities and just find a little cafe or restaurant that takes my fancy that seems long gone as a coeliac. How have others managed to plan yet combine being spontaneous at the same time? Or is that an oxymoron?
Initially wanted to ask if it would be okay to tick all of the options in the poll! But wondered if I would just be labelled a 'nutter'..
Biggest problem for me is the constant tiredness/always feeling as though I'm in the early stages of a flu type bug.
Despite being GF for almost 7 years.
Totally fed up of taking/relying on daily medication.
As now have severe asthma, rheumatoid arthritis, anaemia
, low ferritin count, gyny problems.
Hate the fact that colds & everyday bugs that the rest of the family have from time to time-
Mean a couple of days of being off colour for them.
Weeks of illness, or hospital admissions for me.
Feel that not only has having Coeliac Disease changed my life style
I has also changed my personality.
Used to be bubbly & out going.
Now have regular bouts of low mood/depression.
Winge/moan over!
; D
<3
Reading these comments has been a real eye-opener for me. I have never felt very well, even though I stick to the gluten-free diet. When it all gets too much, I go to my GP and have blood tests done, and they all come back okay. So why do I feel so awful - tired, aching arms, headaches, eczema etc. And it appears I'm not alone in this experience, which is some consolation I suppose!
I'm not trying to frighten you but have you thought you may have another autoimmune disease? Your symptoms remind me of how I felt before I was diagnosed with Churg- Strauss Syndrome, form of Vasculitis (where the body attacks itself)
Feel free to contact me if you need to. 
Wow! Everyone here really does have the same problem of feeling tired. An ongoing theme! Having this has made me take a step back. But I do miss going on weekends away to visit friends. I stopped drinking which helped a lot.
There has to be something to do to beat the tiredness! I have too many things I want to do
I get fed with hearing people say 'can you have that' and other annoying phrases like that. It really does take over life and is on my mind all day every day but still trying to eat out is a bind and is even worse when it's work event and I'm with 50 other people.
I don't mind explaining it to family and friends, its trying yo explain to a complete stranger when I see them put my jacket potato on to a bread board, cut it with a bread knife and then use the butter that they have been buttering the bread with!!Aaaaaaaaaaaaah!!
The constant worry I feel everytime I feel remotely sick.
The fact everyone things I am just picky.... why would you not eat cake unless it was serious.
The tiredness that lasts a month when my housemates use my butter.
The fact I am constantly struggling to loose weight because it is impossible for me.
The fact I can't eat drunk food with my friends.
I can relate to many of these comments - particulaly about the not feeling well. I'm having awful problems at the moment with blurry eyes and muscle weakness.....The way that I try to cheer myself up is to remember there are many more folk worse off than us - cancer patients, people in a wheelchair, the blind etc. I wouldn't cope with with either of these 3, so I thank god its 'only' coeliac that I have!! It helps me to think this way - sometimes!
Also - one of my biggest frustrations is the limits on eating out BUT recently, I have been finding the odd good restaurant here and there that caters well for us, and now I get so excited when this is the case, I'm like a kid with a new toy. The latest restaurant is The Old Orleton in Wellington, near Telford - they offer an interesting menu and the owner is coeliac, so his chefs are fully aware and prepared....I shall be going there very soon
Why didn't they have a space for " all of the above"!!!!!?
I developed a gluten intolerance because of my autoimmune condition (Churg-Strauss Syndrome). So I have a gluten intolerance on top of that, oh and heart failure and asthma as a result of the CSS! Isn't life grand?
(Actually, only joking, it really is!) 
Defo agree with all of the above!
So tired, always tired, could sleep any time, any place, any where!
I also agree, I was really ill and down to 6st hardly able to walk, before I was diagnosed but since then have put weight on and also now am lactose intolerant, I sometimes feel I can not eat anything without it making me ill, and I feel tired all the time, have hay fever sometimes I feel like not getting out of bed, but have to go to work, and today was feeling really down until I read the comments, I am not alone, thank you. I seem not able to eat GF free products my Dr has never suggested I have a blood test or any test for that matter, and with the added Lactose intolorance find it hard to eat anything unless it swims, or flys. Hey ho, as my Drs said "look on the bright side it good be worse." Feel better now as have had a moan. thanks.
The price to eat gluten-free really gets on my nerves! I have however made a twitition to see if i can get that changed..Anyone with twitter is welcome to sign twitition.com/n88gu/
The combination of Type 1 diabetes and Coeliac is most exhausting. The cost of gf when they are so limited in our small market town is prohibative, the never being able to eat with others at village hall do's,or having to make incredible arrangements to organise food if anyone asks us out, they do this less and less now because of the gf, the fact that no one understands the combined effect of being gf and basically sugar free, the tiredness, lack of energy. I so, so, so wish I had never been diagnosed, I had my 'IBS' beautifully controlled, led a normal life and was happy and not tired, now I am miserable, broke, working too hard, fed up, fed up, fed up with the whole coeliac thing.
Other: People how don't understand that it isn't just a fad and I am not just fussy.
