What are peoples experiences with vitamin D supplements and hives

I am looking into vitamin D

Hi everyone. I am looking into vitamin D, as I am wondering if I am low in it. I am a vegetarian and this week have had the first hive flare up I’ve had in 3 years since being vegetarian. I just wondered what are peoples experiences with vitamin D supplements, lamps or vegetarian food sources? I have read that supplements and lamps may help but also that they don’t help and that lamps may be harmful. Such mixed statistics that I’m now confused. I’ve read mushrooms have vitamin D, also eggs and I like both, plus some almond milks. Would love to hear people’s thoughts.


Discussion


Elise Rappoport
I’m largely plant based now. Low D caused me to have miscarriages before I discovered the cause. I had to take vit d oral spray in high dose but I don’t think it was veggie sadly. I needed it though. D is best absorbed in sublingual form rather than through the gut. Looking back, at the time the sign was that I craved fish, particularly salmon, caviar & kale like my life depended on it. Though I don’t like to eat animal products and I do better without I think you have to listen to your body when you have deficiencies caused by autoreactive diseases like ours. Often it gives us signs.

Cassandra Pandolfi
Elise Rappoport can I ask how low you were? Having just suffered my third miscarriage is a row (1st and this one ending with me in emergency due to hemorrhaging) and I did test low for Vit D but my Dr said it was only a mild deficiency. I think it was 39 from memory

Elise Rappoport
Hey Cassandra, how you doing? I’m so sorry for ye. I know how awful it is. I cannot remember what it was now as it was well over 4 yrs ago but it was quite low and I was also low on iron. Those 3 miscarriages were odd – not at all like my first miss between my 1st and 2nd children – and the flares after were vicious. Hope you’ve been ok on that front? The yolk sac hadn’t developed properly so i was pregnant with a big empty amniotic sac when I started bleeding around the 13wk mark. I also craved salmon and kale with soy sauce during and after those pregnancies. I’d buy and scoff jars of caviar- no jokes!! My youngest was 3 back in April and I got pregnant with him 3 months after supplementing with vit D and iron. Pregnancy depletes our vitamin/ mineral stores, so does autoimmune disease, particularly if you have coeliac or CU. I’d take a break for 3 months. Get the holiday season out the way, eat really well, take your prenatal supps, get yourself some d spray – 3000 iui will probably do it – and get any other tests done. Then give it a whirl again no pressure in the new year. An October baby is a lovely thing. I have everything crossed for you.

Bella Donna
Elise Rappoport I’ve found myself fancying a yoghurt today. I don’t often get strong good cravings.
So sorry for your struggle with the miscarriages. 😢❤️
I am not craving fish or any kind of meat though.

Bella Donna
Elise Rappoport I just looked up sublingual and saw its under the tongue application for vitamins. I have seen a vit d supplement called “better you” that comes in a spray bottle that you spray under the tongue. Maybe I could try that.
The thing I always worry about though is getting too much of it. If I’m taking a supplement but getting some other vit d from cheese and yoghurt say will I be getting too much? I think the body can dispose if excess if its getting it naturally in food can’t it?

Elise Rappoport
Louise Love it would take an awful lot for you to OD on it. I usually do it for a few months dosing once a day or every other day, then I give myself a break. I always took it in pregnancies though in addition to the prenatal vits. The misses were a long time ago for me now thankfully – my hands are full and my pockets are empty 😊. I was so desperate to have my last baby as I felt a little robbed after my previous child. My son was prem and v sick – 24 hrs after we finally got him home and I’d sighed from relief my short pregnancy remission ended in a hive explosion. I had to stop feeding and was in and out of hospital. He was a little angel through it but it was definitely the worst post natal experience from a hive perspective. I tell you what though – I went on some high dose full spectrum resin and went into remission fastest of any of my flares that time. 11 month I think. Normally I’m 2 yrs in, 2 yrs out unless this flare busts my record. I have some of that stuff on order at the moment.

Anne Camille Jongleux
I took Vit D3 for awhile. Some people, apparently, just don’t metabolize it the same. I was on 5000IU for 3 months and it raised my levels only 3 points. I live in a warm, sunny climate and I’m outside every day. So I am adequately exposed to natural levels of Vit D from sunlight and foods. And I still have low levels. But that’s just me. There have been studies that have found an association between low levels VitD and hives. Why not try it? It may work for you!

Renee Dixon White
I have been low vitamin d for years. And taken supplements for years. And vegetation less than a year. But didn’t start that til after Xolair got my hives under control.

Colleen M Walker
I am not vegetarian. I had extremely low VitD levels which caused stress fractures in both hands and feet. I was put on 50,000IU pills 1x a week for 12 weeks, and am now on a maintenance dose of 4-5,000IU daily. My numbers are in an okay range now, but even those dosages haven’t moved my numbers real high. Definitely get your level checked, as you don’t want to take too much if you don’t need it. As Anne said above, some people just don’t metabolize it well. Low VitD can cause all sorts of odd symptoms and complications. My low D levels were a few years ago, and have been ok for a few years now. I developed CIU about one year ago. I don’t think they’re related, but who the hell knows with this freaking condition.

Lynn Sands
Where do you live? I am in Scotland ans we are all low in vit d because its very difficult to get enough through food and we have a severe lack of sunlight. I was very deficient but after 800iu daily from doc, I’m back to within normal levels. My all round general health has improved enormously xx

Kayleigh Johns
Lynn Sands never heard that before my mates are scottish all work colleagues Scottish none are vitamin d deficient. But we all are pretty active and are outdoors in all weather. Vitamin D isnt direct sunlight its natural sun which comes through clouds as well

Lynn Sands
Yeah, my doc says more than half the country is deficient and don’t know it. I only found out through a full blood count for something else, or I’d never have known. Mainly in the winter months when it’s so dark all the time, and then gain it back it winter months. He also told me mushrooms are good for vitamin d, as long as you don’t cook them. I dunno really, I do know that here in the Highlands it’s dark nearly all day and night in the winter, so seemed to make sense x

Kayleigh Johns
Lynn Sands have to disagree with him. My doc says its bollocks as we get enough as i thought i was deficient for certain reasons. But im outdoors every day running or walking so i get more than enough

Lynn Sands
I’m not saying it’s the only reason, there are many, was just sharing my experience. I have no idea why you are deficient in vit d, it was just a potential option. If you’re outdoors plenty, then obviously that’s not the reason

Kayleigh Johns
Just be very careful as too much vitamin D can cause hypocalcaemia which can be very dangerous. Go get blood tests before taking it.
Im from UK lived up north all my life. Im not deficient. Most people get enough through life.

Thea Wells
Kayleigh Johns I accidentally poisoned myself with 2 much vitamin D. I accidentally bought 10,000IU instead of 1000IU and took 2 per day for several weeks. The nausea, loss of appetite, mood swings, and confusion were intense. I’m still coming back to life.

Thea Wells
Be careful with too much D! I accidentally poisoned myself with 2 much vitamin D. I accidentally bought 10,000IU instead of 1000IU and took 2 per day for several weeks. The nausea, loss of appetite, mood swings, and confusion were intense. I’m still coming back to life weeks later. I can’t believe with all the other problems I have that I did this to myself.

Jaya Phillips
I’ve been going to tanning beds and that helps. It doesn’t make them totally go away but it def helps! Start slow. I’m also a member of Planet Fitness gym. For 25 a month I get the gym plus unlimited tanning and they have a vibrational plate red light therapy stand up non UV lights device also!

Samantha Christine
I incidentally had my vitamin D status checked in 2015. My vitamin d status was on the high end of normal and my hives were in remission at the time.
After 2 years of suddenly drastically decreasing the amount of time I spent outside my hives started to slowly return over the course of a few months until becoming an full blown severe chronic flare.
I happened upon a bunch of research on vitamin D supplementation for various conditions while completing an assignment for school earlier this year. I finally asked my immunologist what she thought about vitamin D supplements for CIU. She said pretty much what I found in the research… it’s controversial and there’s not enough evidence to recommend it. However, those with higher vitamin D statuses tend to have fewer symptoms for various inflammatory conditions like hives and IBD. She was thrilled I asked and without skipping a beat she ordered to have my vitamin D status checked. I was practically vitamin d deficient. After a week of supplementing with 4000 IUs of oral vitamin D3 I have been largely hive free for about 4 weeks now. When I do get hives they’re pretty mild. It’s hard to tell if it’s actually the vitamin D at this point but my hives haven’t been so controlled over the past year without prednisone until now. It could be worth a shot!

Kayleigh Johns
Samantha Christine yes but you got blood tests to check and was prescribed them. Shouldnt take without knowing youre deficient.

Samantha Christine
Exactly. You’re spot on. That’s why I wanted to be clear that I did get my status checked.

Sophia Sonya Sanchez
I’m on vitamin d 50,000 units twice weekly

Colleen Mcquade
My doctor reccomends taking 2000 units D3 a day,

Kayleigh Johns
I will say actually that normally i get hives when my bodies under stress. High altitude mountaineering is about as stressed as my body will ever get physically. But I never ever get them while doing it. Is it because im out 8hrs a day in the sun/cloud at altitude being blasted by radiation? Possibly. When i usually get back im knackered and sleep in bed and develop hives, but i spent week in Kathmandu relaxing outside on loungers instead of coming home to sleep therefore more vit D.
I have found the more active and outdoorsy i have become the less hives ive had. However i was originally tested for vit D deficiency even though i had no symptoms (other than hives) and was found to be normal.
Maybe some need more than others

Elise Rappoport
Kayleigh Johns sounds wonderful. Physical helps me a lot. Put me in a 90min strong core yoga class and my hives will be over 75% less next day. I’m sure mountaineering would settle your parasympathetic nervous system – breathing will be consistent, steady, full. I find that my weekly group class is more effective than my daily home practice and I’m sure it’s because the teacher is guiding our breath and poses and pushing me to my edge physically.

Kayleigh Johns
Elise Rappoport breathing is rapid and laboured due to 40% oxygen available instead of 100% at sea level

Elise Rappoport
Of course it does . vigorous activities seem to have this overall effect.

Kayleigh Johns
Elise Rappoport high altitude has that effect. Sea level i have urticaria

Sue Bellamy
I had my Vit D status checked and it was low – a course of vitamin D followed, but had NO effect on CIU

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