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.
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Sorry to hear that you are still having such a tough time with your health.
Perhaps it would be a good idea to get your possible rosacea check out by your doctor ASAP?
It’s difficult to advise you on whether to push for a CD diagnosis or not. If your new doctor is open to discussion, perhaps it’s a possibility... the other possibility is non-Coeliac gluten sensitivity.
Have you looked at a Low FODMAPS diet to give you some relief for IBS? It involves cutting out gluten, amongst other things.
Thanks, Penel, I appreciate you taking the time to reply to what is really rather a lot of vague symptoms! I have used FODMAPS before and did find them very useful for calming down IBS. However, it's a tough diet and I'm not keen to subject myself to yet another restrictive diet (I've spent my entire life doing one form of food restriction/policing or another!) I'm thinking I might just bite the bullet and go gluten free for a while to see if things like these constant allergic reactions and the high level of muscular pain/tendon injuries I'm having dies down. If it does then I'll either just accept that I will never be diagnosed and go permanently gluten-free myself or I'll go to my docs and push to have full testing done, much as I don't want to (because I have quite severe oesophagitis I'm worried about damage and irritation to the oesophagus from the endoscope).
The reason I'm really concerned about this is a combination of the incessant nature of these health problems combined with the incredible sense of well-being I got on steroids. All my aches and pains went away but I also felt fabulously upbeat for the first time, I realised, since my 30's. As I'm now 61 you can see why that was both uplifting and depressing. That more than anything made me wonder if I've been accepting not-so-very-low-grade illness as my norm and if there is an underlying reason for it.
I wish I could speak to someone knowledgeable on whether the steroid thing was normal, i.e. everyone feels fabulous on steroids, or if my sudden wellbeing on them does indicate a case of inflammation throughout my body that might suggest something else is going on.
I think it sounds as if you may be right and there is inflammation. Finding the cause is difficult though.
Gluten is now known to worsen auto immune conditions whether or not you are coeliac. I accidentally cut out gluten while trying to lower a very high cholesterol level (cause not discovered) and had a lot of improvement with continual migraine and vomiting.
As far as lowering inflammation goes, personally I take a herbal Cox 2 supplement from Swanson and it really helps enormously with several issues.
So there are things you can try which may help but you should definitely try to get a proper medical diagnosis if you can.
Thanks, Frodo (never thought I'd say that sentence!) Gluten does seem to be a real culprit when it comes to allergens, intolerance and autoimmune issues. However, it's always blighted by the food fashion problem, i.e. it's fashionable to give up wheat or claim to be gluten intolerant, so it's always hard to sort the facts from the fables. It's also REALLY hard with myriad symptoms and the complicated nature of the average diet to sort out which thing caused which problem!
I know food intolerance testing would be the sensible route to take, but at present I'm trying to work my way through very old, steadily-worsening eating disorders so any form of dieting and food restriction feels counterproductive. It's difficult, for sure!
I will check out the Cox 2 supplement you mention - many thanks for the recommendation.
Swanson Ultra Cox-2 Combo. I got them at Victoria Health (online). They're quite expensive. I don't know what I'll do if I ever can't get them anymore - I rely on them now (it's an American company). Make sure they are suitable for you - look up the ingredients and check with your GP if you're in doubt. My GP approved because they contain Turmeric.
Yes, I've been taking probiotics every day since I had to take 3 courses of antibiotics, one after the other. That's why I'm not dead keen on taking this 'Rosacea' to the doctors - the idea of more antibiotics, even topical ones, makes me uneasy. Ever since I had the antibiotics I've had one thing after another go wrong. Each drug I take causes another drug reaction, which in turn creates a new problem. I do wish doctors could be a bit more stringent with 'First do no harm'. But I suppose it's really hard. After all, I would have been really screwed without those antibiotics!
I agree with Penel, if you can afford it try Symprove. I did one course and I have to say I felt somewhat worse while taking it but much better after I finished (as in, better than before I took it!)
i would take your bad face to the doctor whilst it is bad so that they believe you and take some photos too. It may be that you have other food problems other than gluten, I have salicylate sensitivity which causes me to go very red and itchy and my father had it too. His face swelled up and went red when ever he had aspirin. I found that my thyroid was under-active and I was low on b12 and vitamin D which made all the urticaria and "allergies" much worse but they are mostly better now I'm treated properly but it has taken a long time.
I had a huge positive blood test to gluten and then a negative biopsy (which was a horrid thing to have done and not recommended unless you have to by the way) and carried on with gluten for four years before getting really ill and appearing to be "allergic" to everything.
Food intolerance is very very hard to diagnosis the best way is just with elimination diets and re-introduction / challenge so don't spend lots of money on home "allergy" tests as they may not be helpful but testing your thyroid and vitamin status may give you some clues. Any blood tests or help you can get out of your GP would be another place to go but in my experience anything to do with food problems is usually just labelled IBS and your are assumed to be able to live with it!
If you feel better without gluten then also stick with that as it is a lot easier than it was 20 years ago but be careful as many commercial gluten free foods have a lot of chemicals in which you may be reacting to, you may for example have a problem with the preservative in the bread not the bread but no blood test will help you sort that out. You can not be tested for gluten problems when on a gluten free diet so if you do follow the diet without a diagnosis and it helps you are unlikely to ever have a diagnosis.
See fedup.com.au for advice on how to eliminate and then challenge. It does mean a restrictive diet but may also sort you out better than anything eventually though if thyroid / vitamins are off you need to sort at the same time too. Good luck and hope you feel better soon.
Many thanks for all the sound advice! I actually have Salicylate sensitivity. I've had it since I was a small child. I can't use aspirin or Ibuprofen, and in fact it was those drugs that started all this off. I got a really bad back injury, at the same time as a UTI that wouldn't clear up, and I was taking irregular doses of Ibuprofen (no more than twice a day and I tried to alternate days, because the drug doesn't agree with me). I was also drinking cranberry juice plus taking it in tablet form. Unbeknownst to me they are very high in Salicylates. Then an ignorant young doctor at an out of hours clinic gave me Voltarol, assuring me it 'wouldn't upset my stomach' because it went on my skin. I found this odd because it's absorbed through the skin, but I took her word for it. Big mistake, I got a severe drug reaction, needed steroids, and here I am today...
My thyroid was tested recently and I get 4-weekly B12 injections, so that isn't the problem. I think I will just have to bite the bullet and either see the doc to be tested again, or just go gluten-free myself.
ps there is a thyroid / adrenal connection and feeling so good on steroids may indicate that your problems are with hormones of one kind or another as well as inflamation
Yes, I'm seriously thinking of going onto one of the forums where steroids are used routinely, like the skin problems forum, and asking if this 'high' on steroids is just normal and therefore indicative of nothing, other than feeling good. I know they are considered potentially addictive, and I can completely understand that, as I would have been tempted to keep taking them if offered! However, having now acquired possible Rosacea from them, it's probably a good job I didn't get tempted. There's always a downside to spoil the 'fun'!
Yes ibuprofen was my first "reaction" but the next was to sulphites in paractamol which I was taking for a sprained ankle, you can get sulphite free brands which are worth chasing down, the other thing I have to watch is reactions to azo colours. Some anti histamines have azo colours so undoing their antihistamine effect on me! I also have to watch salbutamol which is otherwise known as ventolin as it is made from salicylates (I can't get a doctor to believe this one but I have not had an asthma attack since I changed my diet and inhaler which is four years!).
It sounds like that you basically clobbered your body with too much at once that it couldn't handle but four years down the line from having done the same it is beginning to get a little better and I am less sensitive to amines and sometime salicylates especially if I use chilli (see the food intolerance network for how to do this it works for me but has to be done exactly as they say).
The main thing with all these intolerances is that they are cumulative so it is very hard to work them out. One day an apple is fine another when you have had a carrot or some curry will tip you over and give you a reaction. The only way of sorting it out is with a detailed food / activity / household chemical diary and lots of lists of salicylate (and maybe histamine / amine / glutamate) contents of foods. I find I get a very sore bloated tummy from salicylates so your bloating / IBS is not necessarily gluten.
If you do try elimination then be aware that you may get very sensitive to salicylates and other food chemicals (including perhaps gluten )as your current tolerance to them in food is built up very slowly with lots of small doses and you lose this when you cut the chemicals out (which is why elimination and challenge works to find your problems). It can take months to build up the same tolerances again and you may never reach the level where you can eat anything.
Try the the thyroid and B12 forums too. It may be that your B12 injections are not enough and you need to supplement with more yourself (drops under your tongue may work) and what means "normal" for thyroid is a disputed point in the uk with many people needing treatment long before the doctors give it.
Really good luck with it all, the beauty of diet is that you can fix yourself but it is very hard too!
Thanks for all that sagely advice - really appreciate it! I've started a mini-gluten-free regime and been staggered by how quickly my severe bloating has dropped, so all the (white!) wheat I've been eating recently has definitely played a part, I'd say. I'll keep going a while and then try reintroducing it and see how it goes. After that I'll have to face the demon decision of whether to go down the doctor diagnosis route once more or just stick with gluten-free under my own steam. It's a tricky decision, with plusses and minuses on both sides, unfortunately!
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