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!
Thanks,
Lauren
Anonymous says
Hi,
I found your post very inciteful and will be heading over to the YorkTest website for more info.
I’ve cut back on dairy for around 2 years now and noticed a tremendous difference in the severity of my hives. They still come up but it’s much more manageable so hopefully you find some relief soon!
Olivia
John Wilson says
Hi Lauren – Like you I also use Telfast only but sparingly. A few months ago I gave up all grains, so bread, pizza, rice, pasta. Sometimes if I’m in town and hungry I’ll grab the first thing which may be a bread roll, but I reckon I only eat about 10% grain to what i used to. It hasn’t eliminated the rash’s but has calmed them down by at least 50%. Plus I feel a lot healthier anyway as you have to find substitutes, so I now eat a lot of fruit and vegetables.
One big tip though. I bought a couple of cold packs which i keep in the freezer. If I feel a rash coming on I plant the frozen cold pack on top of it and it’s generally gone in less than a couple of minutes. If I’m out I take one in the car, wrapped in newspaper. It lasts for a couple of hours. Best instant relief yet.
dhruv says
The problem is, a lot of us assume we are intolerant to these foods and that they’re the reason we get hives or CU. But I have a strong belief, we became intolerant to these foods after we got CU, not the other way around. I used to drink milk, eat bread and intake multiple other foods which I was never allergic to in my whole life. So suddenly at 18 after getting CU I became allergic to them? CU is basically a strong sign something is wrong with our stomach and because our stomach holds 80% of our immunity, it has impacted that and that’s why our body is producing an autoimmune response causing CU/Hives. No doctor or any other pill will ever help you, cause it’s never attacking the root of the problem but just clearing the air on the surface. I’m researching on how to cure this problem, I hate the word treat or the phrase “reduce the symptoms”. It’s annoying cause everyone is just trying to sell a product or mislead you into taking 5 different pills for the rest of your life. I’m going to post an article talking more about this soon, I wanted a cure but at this point I might have to search for it myself.
Lauren says
Hi all,
I’m glad you all found this post helpful and inciting. I’ve always wanted to try and find my own ‘cure’ or relief and i genuinely think this is one way of doing it. On their website they say everybody has their own ‘food fingerprint’ and they’re not wrong! Who would have even thought you could be intolerant to kale?!
Dhruv – completely understand your point. However everyone is different and i know that the majority or many people with CU also complain of stomach problems. I mentioned in this post that luckily i had done a food intolerance test before i got CU because of bloating and stomach noises and the new test has shown that these intolerances havent gone away… just got worse! As well as some new ones.
For me, i just wanted to share this because i tried to eliminate foods myself and i just couldn’t pinpoint it. This place is a fast track solution in a way. I’m not cured yet by any means but i feel a lot healthier in myself, my gut is healing and they give you support through nutritional consultations. Something i found incredibly interesting. Since taking the test my mum has taken a test also (i believe it was the premium 208 ingredient one) as she’s been having terrible digestive issues and it turns out she’s intolerant to linseed. She sprinkles flaxseed on her porridge every morning!! Yeast, saffron and açai berry. She was fine for wheat, cows milk, gluten, the usual culprits. Just proves that the blood doesn’t lie!
I check this forum relatively often so I’m happy to answer any questions you may have ☺️ If anybody is interested I’m more than happy to refer a friend and you get £50 off a test! But i would like this to be approved by hivesguy first as i wouldn’t want it to look dodgy in any way haha!