I am in New Zealand and being diagnosed with CIU and heat urticaria 12 months ago affecting my body, face and eyes. I have had 18 months of daily hives. I am taking daily 40mg loratadine, 20mg cetirizine, 10mg montelukast/singular. For my eyes I am using Pred Forte, FML, and Patanol drops. Topically I am using cetamacrogol as a moisturiser, eumovate, mometasone and dermol. I have been tested and found multiple allergies to grasses etc but DR thinks they are not the cause. I have tried multiple drugs, and even a naturopath with no relief. I have also had eczema my whole life.
Following research online and through this page I have been learning more about leaky gut and its relation to autoimmune conditions. So, a month ago I started a gluten free and alcohol free diet and have increased probiotics. For the first week I had a particularly bad flare up, then the last three weeks I have been 95% hive free which I think is AMAZING after 18 months and pills not solving anything. I am still on all my medications however have reduced topical applications as I don’t need them.
I aim to slowly wean myself off medications with the guidance of my doctor and see how I go. I have posted a number of photos (even though are ugly to look at) to hopefully help someone and give some hope that things can get better. My today pics are at the end.
Thank you to this group for sharing your stories and helping me find this relief – I will be forever grateful!
Charley Charvat What kind of probiotics are you taking? What do you mean “alcohol” free diet? I’m going to try this. Can you give me some guidelines? I have Cold Urticaria, which is the literal opposite of your heat urticaria. Been like this for 5 1/3 years. And I break out in hives from the top of my head to the bottoms of my feet every single day. I hardly leave my house anymore and have developed severe anxiety over it. I’ve tried every medicine in the market, and NONE have worked for me.
Rachel McRae Hi Natalie, by alcohol free I mean drinking no alcohol as it seems to be quite bad for gut health. I don’t know how much the alcohol free compared to the gluten free is doing for me (hard to work out which is providing the benefits) but I hope to eventually be able to have a drink again occasionally. I’m using Go Healthy Probiotics 40billion and taking double recommend dose and on an empty stomach instead of with food. Also trying to increase intake of acidophilus yoghurt and reduce stress as this also impacts gut health according to the research.
Rachel McRae Mine has kept me in the house too as you feel so irritated/uncomfortable/ugly and just have to keep trying different things. I hope it helps you too
Charley Charvat I don’t really drink. Maybe a glass of wine for dinner once a week, if that. (Pretty much got my drinking stage out of my system before I even turned 21, I’m 25 now).
I’m really going to try this. I hope it helps on some level. I break out multiple times a day, every day.
My doctor has even suggested getting a service dog to help with the anxiety. My Great Dane is so in tune with me that he can tell when I’ll have a hive attack about 3 minutes beforehand. He gets really antsy and clingy when it’s about to happen.
But this seems like a really good plan; I never really thought about how the gut can be a link to it.
Rachel McRae I never thought about gut health and autoimmune conditions before this page either and was never mentioned to me by my specialists. Google it you will be amazed what you find. I also am drinking more water aiming for about 3litres per day.
You sound similar to me, I am 29 and not a big drinker either but ended up drinking a glass or two most evenings at work functions so have stopped that. My hives were so constant I couldn’t tell one flare up from another (always there) they just moved places. Would love to hear if you have any success
Shannon Price Hi I am in nz also 😄 I have had every drug imaginable and currently on.. Loritadine, montelukast, polaramine and ranitidine. I take Apple cider vinegar twice a day and gone gluten free. I have also stopped eating anything processed and drinking almond milk etc instead of milk. I have had a nightmare with this and since doing all this together I have about 10 spots max and no swelling. I had a rebound coming off ceterizine so keep that in mind. Maybe try change it to polaramine. It is another unsubsidised drug but it works good for me
Rachel McRae Hi Shannon, this is awesome you have had some relief with your diet and nice to know you are in NZ. How long have you been doing your diet for? Thanks for the heads up on cetirizine, did you taper down when coming off yours? And how long did it last for?
Shannon Pendlebury Marshmallow root, slippery elm, L-glutamine, are all great for healing the gut. Keep up the great work! I want to believe with all my heart that these supplements, clean eating (gluten free, organic) and drinking tons of water were the reason for my relief. I guess only time will tell. I pray you are all are freed from this soon!!
Rachel McRae Awesome to hear thanks Shannon. How long have you been clean eating for and how long have you been hive free?
Shannon Pendlebury I started loosely about 6 months ago. But I just became more strict with it as time went on and that’s when I started to see results. I have been hive free for about 2 months now. I pray to god it stays that way. Im so afraid I’ll jynx it sometimes (lol) but I also love to share what has seemed to work for me. I also take bentonite clay or activated charcoal. Those are really important if you ask me. They’re binders that help remove toxins from your system. I’m happy to share with you all that I take if you’d like me to. Feel free to send me a private message. I don’t bombard people with info because some get upset for recommending products without clearing them with a dr. In my experience, no dr was able to help me. So I had to do what I felt was the best for me. Sometimes you gotta go with your gutâ€¦no pun intended
Rachel McRae Shannon that sounds great thank you. I too tried everything docs suggested with minimal relief. I will look into the clay and charcoal you have mentioned and will send you a private message thanks
Sue Elshire Hargrave It is always amazing what works for a person! I am so glad this is working for you! Yay!