1. It's hard. It's really bloody hard.
It isn't okay just because there is a load of gluten free alternatives out there. If I had a euro for every time someone has said that to me over the last 6 months. Don't get me wrong, I have completely come to terms with my diagnosis (maybe after crying my eyes out for a week or 2) but being constantly told that it's not so bad really grinds my gears. I will never not crave a big gluten filled deep base Goodfellas pizza but that's just something I have to live with. It's hard.
2. It's not all about the food.
If I just couldn't eat gluten again and be perfectly fine that would be okay. It's all the additional things that I now need to think about that I require in my diet to prevent other problems. Osteoporosis - from lack of calcium which is another thing a lot of us have to avoid - if only during the recovery process, alternative sources of fiber, adequate protein and all the extra vitamins.
3. 'You look fine.'
This 100% annoys me the most and when people now ask I just say I'm fine to avoid going into detail so they immediately assume I look fine so I must be. I'm not fine. Some days I barely have the energy to get out of bed, have a shower, make myself food. My whole body twitches for no reason. My hand randomly goes numb and I don't have half the strength or stamina in body that I used to. I am constantly fighting a battle to recovery every day and have lost all confidence in my bodies ability..you might have caught me on a good day, but I know you don't want to hear about that so I tell you I'm fine.
4. Making plans for the future is hard.
Nothing makes me feel worse than when someone asks if I want to go somewhere in a couple of weeks time. I wish more than anything that I could give an answer and stick to it but I have no idea how I am going to be from one week to the next, I am constantly holding out hope that I will be better and nobody feels worse letting people down than I do myself.
5. Cross Contamination
It really bothers me when someone says oh sure a crumb won't do you any harm. Yes. Yes it will. Quite a hell of a lot actually. When someone close to me responds with something like this it genuinely breaks my heart, the fact that all this time you have been watching me go through this and you have absolutely no idea how I am affected.
Please if you know someone who is coeliac take the time to listen to what is actually wrong and take into consideration how things feel for them. They are constantly the one's that feel excluded and awkward and a nuisance no matter where they go. It isn't fair that somebody has to be made feel that way just because they have developed an illness they have no control over.