I have had an atrocious last couple of months, with one illness after another and, in fact, often several of them occurring at the same time. To make a very long story short(ish) I had a severe drug reaction, which brought on the worst attack of urticaria I've ever had. I was given corticosteroids for it, a five day course, which cleared it up. However as part of the MANY side effects (both good and bad) I got a big round red face, which was itchy and sore. As it said this was a possible side effect I wasn't too worried.
It's now 3 weeks and 3 days since I finished the steroids and suddenly 2 days ago, during the very hot weather, I woke up one morning with the exact same red burring face. It's 3 in the morning at time of writing, and I am sitting with a frozen paper-cup of water on my chin and cheeks trying to stop the itching and pain.
I suspect this may be Rosacea, which I've never had before, but I assume has been triggered by the steroid use. Apparently not unusual, but surely unusual to have it flare up again after only one 5 day course of steroids?
I just read a scholarly article tonight that linked Rosacea, along with urticaria and other dermatological conditions, to CD. They happened to mention in the article that people often get used to feeling so chronically ill they don't notice they have CD. This describes me so well it made me tear up. I'm at my wits end with everything going wrong and constant not-so-low-grade aches and pains.
For the longest time I made a nuisance of myself with my doctor asking for CD testing because I was SURE I had it; it fit so well. The blood tests were always negative, then I found out I had partial IgA deficiency and I was sure if I could only get the right testing I would definitely be found to have coeliac disease. I got the correct IgG testing - still negative.
It's now some 4 years later and my health is just going completely down the toilet. The reason I've come back to CD is because I don't normally eat bread much as I'm not a fan. Recently though, while trying out different dietary measures, I decided to try white bread as I found that my usually preferred wholemeal tasted very unpleasant. So the last couple of days I've been eating white breads for breakfast and then again for supper. So I wondered if that has acted as a trigger (perhaps along with the heat) to bring on the suspected Rosacea.
Further incriminating evidence comes in the shape of Sphincter of Oddi ‘sensitivity’. I have had my gallbladder removed and I can no longer use codeine because it brings on severe Sphincter of Oddi spasms. Tonight, both times after eating a Danish Pastry, I got immediate spasms in my back. Not as severe as the ones I get with codeine, but it has made me wonder - is it possible that my old paranoia about having undiagnosed CD isn't paranoia?
I hated all the arguing with my doc last time, and I felt stupid for pushing the CD 'agenda' because I felt I was just trying to find a justification for my illnesses. I have a new doctors’ practice, but should I ask to be retested, with the correct test this time (IgG), and if I did and the test was negative again, is it worth putting myself through the ordeal of asking for a biopsy - that's assuming I could get anyone to take me seriously and allow it. I know biopsies are not without risks and I REALLY do not need anything more to go wrong with me. These last couple of months every single drug I have used has brought on severe side effects. My body seems to be super-sensitive to everything. It has left me frightened to try anything. Even the idea of putting an antibiotic cream on this Rosacea frightens me in case I bring on some other incurable condition.
I apologise most humbly for the length of this post, but I am really floundering here. Anyone who can offer any clarity on my options, or whether I’m barking up the wrong tree entirely, will be most gratefully received. thanks.
P.S. Just to give some history I have Trigeminal Neuralgia, a rare neurological condition, and IBS which is, nowadays, constant and debilitating. These are the two main things which make me feel CD might be a possibility.