Morning everyone. I’ve been a regular visitor to this hives forum after suffering with this condition since I was 20 (I’m 24 now). You can find my first blog post by searching ‘different causes for Cholinergic Urticaria‘ back in 2014.
I’ve controlled my hives by using Telfast 180mg. However, I had a major health scare last year. My whole body was twitching/aching for months and I ran my mind into the ground thinking I had motor neurone disease or MS. Thankfully, it wasn’t until a third doctor picked up that I was practically overdosing on antihistamines! It all made sense. As my cholinergic urticaria was getting worse, the antihistamines were losing their effect. When I went to my dermatologist previously, he told me it was OK to take up to 4 180mg tablets per day. But what he didn’t tell me was to space them out evenly throughout the day. My body went into overdrive and now I’m doing all what I can to stay off them and only resort to them if I really need to.
No matter what the dermatologist told me, I’ve always been a firm believer that my hives are due to something in my diet. Before I had my first case of cholinergic urticaria, I interned in America for a couple of months. The weather was 33 degrees so I was sweating every day, and my diet was vastly different compared to at home and, safe to say, I became a sugar addict when I was over there (though I’ve always had a sweet tooth – it’s my downfall!). My CU started 3 weeks after coming back to the UK.
Reactions have always been worse for me if I drink wine or if I have a lot of ice cream, for example. I’ve tried multiple elimination diets but I just couldn’t see improvement. When I cut out dairy, my skin would go worse and I’d go straight back onto the milk/ice cream.
When I was 18, before I even had cholinergic urticaria, I took a food intolerance test as I suffer from a lot of bloating and stomach noises, especially at night. The test came back positive for: wheat, gluten, cow’s milk, yeast and a borderline reaction to peanuts (in that order). At the time, I didn’t really benefit from it as I didn’t want to cut out those major food groups and, at 18, I just wanted to have fun and eat whatever I wanted.
Sorry I’m rambling a bit but over Christmas, I was so incredibly tired of having a reaction. I started to reach for the antihistamines once again, and then that’s when I thought enough is enough. I ordered a food intolerance test through the same website I had used previously. I was swayed as I’ve always believed it’s due to my diet, and they had a testimonial on their website (I think she’s called Ellie Mason) who suffered CU too. She saw major improvements since taking the test (she was intolerant to beef, amongst other triggers). They tested me for 158 ingredients. However, I believe now that they test for 200 plus after they released a new programme (ordered it at the wrong time clearly!)
I was shocked at the results. In order, I was intolerant to yeast, cow’s milk, wheat, kale and gluten. I also had a borderline reaction to aubergine. With the programme, you have a telephone conversation with a BANT registered nutritional therapist. I explained my symptoms and she gave me some really great alternatives, whilst admitting that it would be a challenge to cut those major food groups out together. She explained that my hives might not be caused my all of the food triggers but it could be a combination, for example: wheat, cow’s milk and kale.
It gave me a good basis for learning what works for my body without going through a timely and exhaustive elimination diet. Before I had CU at 18, yeast wasn’t high up in my intolerance test but now it trumped the other food groups I was intolerant to. Cows milk moved up the list, also. I was also surprised at kale. I had introduced kale into my diet a few years’ back as I didn’t want to eat spinach due to the high histamine count.
I’m 3 weeks into my diet. However, for now I’ve only cut out cow’s milk and baker’s yeast. I thought it would be best to start slowly rather than all at once and then crave every bad food thing imaginable. Unfortunately, my skin has gone slightly worse. But, what I have noticed is that when I do have a reaction, I don’t get the burning/tingling pain. It only takes a few minutes for my body to become flushed with hives. I no longer have the agonising pain associated with a flare-up. I believe that my body is going through its own detox – I hope anyway! The nutritional therapist also told me to take a decent probiotic and also l-glutamine to help with healing the gut.
There are a lot of food intolerance companies out there. I’ve done my research and some are bizarre as testing to see if hair can determine a food intolerance! The test I used on both occasions are called YorkTest. They are Europe’s leading provider in food intolerance testing. You can also read Ellie’s, or Elle’s testimonial on their website, too.
I’ll provide an update in 1 to 2 months’ time and hope I can come back with some good news!