Having Cholinergic Urticaria for 25 years, I’m now CURED! My experience and advice are below.
Edit: Always talk to a doctor before trying any diet or medication.
Hello,
This forum has been my support when things were so bad. And it led to find the root cause of my cholinergic urticaria (and my cure). Thanks, Hivesguy. I would like to share my story and cure in order to support and help others.
My Story of Cholinergic Urticaria
I remember that I started feeling symptoms of Urticaria when I was about 14. It was quite OK at that time, sometimes itching and pricking in shower, during exercising, and when I went from cold to warm.
As time went on it got continuously worse, with periods of better changing with worse. It was annoying, but I could live with that. And of course, I got no advice from doctors, as they “never seen something like that. It was 20 years ago, and I live in Czech Republic.
At that time, I tried only things like creaming my whole body (helped a bit). It was when I was at the university that it started to go worse (I was in a different environment). I used to sleep under a wide open window, without a t-shirt, even if it was freezing outside. Otherwise I wouldn’t sleep.
About 5 years ago, my kids were born (twins). I wasn’t able to play with them, laugh, etc. Every time I did, I got a rash with itching that was so bad that I couldn’t do anything but run outside or take a cold shower. It was frustrating to not be able to play with my kids. At that time, I started do something serious about it.
- I went to doctors – with no success – they only prescribed me antihistamines, which worked slightly for short interval.
- I searched web, medical papers. I found this site and realized that I am not the only one in the universe. That was relief!
- I started reading experiences of others and experimenting.
- I logged my own diary and tried to find some coherence with environment etc. I couldn’t find anything reliable.
- I didn’t want to get any drugs as I realized that it would not treat the cause and I believed that the cause must be something trivial.
After some experiments and reading I focused on two major issues: food and intake of chemicals (I mean everything like shower gels, processed food, etc.)
This was the same time when Hivesguy was posting about his diet. I decided to go on similar diet.
I studied various materials about food and the I decided to eat only rice, broccoli, carrot. I sustained 2 months. There has been no big change, but things went a little bit differently. Sometimes I was much better, sometimes it was again back or even worse. I wasn’t sure, but it seemed it caused SOMETHING.
Then I went to business trip and wasn’t able to stick with my diet. After 1-2 weeks, I was back to original state – there I started to be sure that there is something about the food. But I didn’t know what exactly.
So I continued with my diet again, made it a little bit wider, but tried to stick with “non-agressive” fruit and vegetables, meat, and rice. Nothing else. I also went to special cleansing diet, where you eat only one “normal” food a day (in the noon, only vegs, meat, rice) and breakfast and dinner are mixed (fluid) to allow better cleaning of organism.
Then it started to be better and better … with some days of frustration when things went again back or were worse for some short interval.
At this time I started visiting doctor specialized on digesting system. She did me various tests (everything was OK, of course 🙂 ). We were talking about the diet and somewhere in that I asked her to do me tests on coeliac disease (I looked at various similar diseases and tried to correlate my problems and the diet with it).
The test from blood was negative (also because I am missing IgA), various other tests too. So finally they did a test to my intestines and took parts of it to analyze (which is the only way now, how to really confirm coeliac). The result was, that there is some change on small intestines which is not what would you expect being a coeliac. We also discussed that I was practically 2 months on gluten-free diet (because my diet was also gluten free) and that time is sufficient to make some recovery.
So as a result I started keeping strict gluten-free diet. I started including more food (my diet that time was much more strict) and kept.
It started to be better over time, but very slowly (if I wasn’t be that decided I could easily give up, because the changes were so slow, that was almost unnoticeable).
After, say, 6 months, I was pretty sure that that was it! I would say that at that moment I was 90% cured.
Now I am more that one year on gluten-free diet and I could say I am cured. I don’t feel any itching, rash, etc. Only in times when I am sick or otherwise stressed I could feel something, but way lower than before.
Summary:
- try eliminating gluten
- avoid processed food
- limit also gluten-free food made from corn, etc.; stick with meat, vegs, fruit, rice and other naturally gluten-free food
- stress, sickness worsen urticaria – avoid it
- be prepared that during first month-two on the diet you will be nervous, wheat and other cereals affect brain (in some way) as addictive drugs
- especially at the beginning, try some cleansing diet
- don’t give up and keep it at least several months, be prepared that during first two months it could be sometimes worse; it should take 6-12 months to clean the body from rest of wheat hidden in fat, etc. (note that I almost don’t have fat – 190cm/75kg – and yet it took so long).
It may not be gluten in your case, but I believe that it is in more cases than we think. Don’t let you doctors belittle it. Anyway you won’t do anything bad if you try it, it would have also immediate positive impact on your health. So why not try it? 🙂
Edit: Always talk to a doctor before trying any diet or medication.
Good luck and don’t give up.
Tomas
Hivesguy says
Thanks so much for taking the time to share your experience, Tomas. That’s awesome that you’ve been able to essentially cure your cholinergic urticaria.
I, too, have had the greatest success and results from diet. For me, it isn’t gluten alone (although wheat and gluten certainly crank my hives up). I have to stay pretty strict on the diet that I talk about on the website and in the book I wrote. The few other things I do also help a bit.
I certainly think that diet is something anyone suffering with cholinergic urticaria should consider, as it is not only essentially free to try, but it is also probably much safer than any pharmaceutical drugs.
Anyway, I hope your hives stay gone, and thanks again for sharing. I’m glad you’ve found this website useful.
Tomas says
Thank you.
Should you or anyone have any question, don’t hesitate to ask.
I hope it helps at least someone.
Ryan says
Hi mate you have a very good point I have a very gluten rich diet I eat a lot of bread and use a lot of marmite which has yeast in and I mean I’m eating like 7 bits of toast a day and recently an article in the sun said how bad gluten is, I will try this and also see a doctor as I’m sure I also have a candida infection which apparently can’t be caused by excessive yeast intake, glad you’re hives free! I was cured for two weeks when I took up running till I started to swear everyday, I’m going to start it again soon
Tomas says
Hi, I have been also successful with exercising. It helped a lot to limit urticaria (usualy for 1-2 days after some sweat-extensive exercise). I realized that exercising is way to reduce symptoms, not the root cause.
Anyway, as I needed to exercise regularly, I am now used to it and run 2-3 times a week. Which isn’t bad and helps to clean organism and keep it more healthy.
Tomas
BillDozer says
I’ve been gluten free for a little over a week. I plan on sticking with it long term and see what happens. Many sites discussing Celiac disease suggest it could possibly take years before you get rid of all the gluten. Be advised, gluten is everywhere. Beverages, condiments, certain brands of pickles, many ice creams. Everywhere.
projectsapptest says
You are right. You have to carefully read all notes on food/drink. It is difficult at the beginning, but after some time you get used to it.
Good luck. Leet me know if that helped to you.
Tomas
BillDozer says
I’ve been gluten free for about two months now. I still get the hives, but when the hives come out I seem to have less itching/irritation and a lot of times none at all. The hives also seem to go away faster. Is this similar to how you progressed while on gluten free? I was curious because there seem to be so many variables that can either make CU better or worse that it’s hard to pinpoint what is actually causing my milder symptoms. Thanks.