Vitamin D Deficiency & Supplementation for Cholinergic Urticaria
Post by: liness on February 28, 2009, 12:43:37 PM
Hello all,
I am still new to the forum and have been going over most of the older postings today. It is interesting that the fairly common theme of the sunnier months being the best time to deal with Cholinergic Urticaria comes up so often. This is a bit of a stretch but while checking out a few of the medical websites I came across a recent article at emedicine.com that suggests Vitamin D is much more effective on preventing colds than Vitamin C due to it’s ability to boost the immune system.
Since there seems to be some thought that Cholinergic Urticaria can be related to immune system issues I was thinking that there could be a link with ‘D” and the alleviation of symptoms. Regardless, here in the Northwest we usually have quite a wait for consistent sun so it will probably be awhile before I get to test this one out.
Also, I have noticed that as I have increased my running distances in the early morning, it is becoming a bad news/good news issue. Near the end of the run as I work up a good sweat, the burning around the face, neck, and upper chest becomes pretty intense and most of the back is very red by the time I stop. But later in the day the flare ups seem less severe unless I am overly tired – then all bets are off.
It sure is frustrating trying to figure a pattern to this condition. That’s all.
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Title: Re: More on Vitamin D
Post by: ww2 on February 28, 2009, 08:29:52 PM
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Hello liness, some people have noticed, including myself that having an initial full on episode makes subsequent episodes much less severe or even gone for the remainder of the day. Dont know why this happens, but probably because all the histamine has been released from the initial attack.
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Title: Re: More on Vitamin D
Post by: HivesGuy on February 28, 2009, 09:11:33 PM
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Hello liness,
I agree that there seems to be a connection with more sun exposure helping or even eliminating the hives. I know vitamin d may play a small role, but I did recently take a vitamin d3 supplement for hives for a few weeks, and it did not help the hives at all.
The sun does so much more than just produce vitamin d. It has various wavelengths of ultraviolet radiation, produces vitamins in our bodies, helps us to sweat, and much more.
I can’t wait to get out some this summer! Just gotta watch for sunburns and skin cancer though.
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Title: Vitamin D Deficiency & Supplementation for Cholinergic Urticaria
Post by: MastCell on June 29, 2009, 10:19:48 AM
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Hello. This is my first post and not sure if I’m doing it right so bear with me..
I have struggled with bouts of Cholinergic Urticaria and photodermatitis off-and-on, since my teens.
Due to the sunrash (photoderm), it has been increasingly difficult to go into the sun and I was diagnosed in February with Vitamin D deficiency. My rheumatologist prescribed a megadose therapy to get me back up to normal and I just completed it here in June.
While I personally believe the Vitamin D helped with the sunrash, its’ main benefits are the immune-system support and general health benefits. It also regulates calcium which supports/regulates the endochrine system and is an anti-cancer agent.
I write this post because I am concerned that most everybody in the forum, including Hivesguy, are likely also Vitamin D deficient.
I had to ramp-up quick and learn about Vitamin D because of my diagnosis and want to share my experience. My disclaimer – as always, I’m not a doctor or medical professional. I am just an average Joe who has done some thorough research and have first-hand experience regarding this topic.
I was skeptical at first but once I did the research and started the therapy I am thoroughly convinced of the benefit. Because of recent studies released in health-journals outlining the insufficient intake of D here in the U.S. (due to sitting indoors on computer, sedentary, improper nutrition, etc.) there is a lot of “buzz” about dosage.
I noticed Hivesguy purchased a “400 IU” dosage of a cheaper D3 supplement and mentioned taking 1 @ day. There has been a big push for some time to recommend “2000 IU” @ day as the “standard” for average Americans, who actually get some sun and it only recently is becoming the standard quickly (up from recommended dose of 600 IU).
I summarize with the single-most point of this post:
PLEASE CONSULT WITH YOUR DOCTOR TO PERFORM A STANDARD BLOOD TEST FOR VITAMIN D DECIFICIENCY TO DETERMINE THE BEST DOSAGE AND TREATMENT METHODS FOR YOU!
While my sunrash continues to hang around, I feel about a million-times better physically, mentally, and emotionally. I am curious also, if others have some success with Cholinergic Urticaria / photoderm mitigation as a result of D-supplementation.
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: HivesGuy on June 29, 2009, 04:16:20 PM
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Hello,
Excellent post & welcome to the forum!
I really find your post interesting, as I have really been considering the Vitamin D thing for a few months now.
I first started thinking of a connection when I thought about the periods I had hives. The times when my Cholinergic Urticaria was terrible, I had almost NO sun exposure. The times when my hives went into remission, I was outside almost daily.
I have been getting a lot of sun the past few days, and plan on continuing more sun exposure throughout hte summer as much as possible. I have no doubts I am probably majorly deficient on Vitamin D, although I did not go to get tested. But considering I didn’t drink milk for the past year, and went outside very rarely, I can’t imagine how I wouldn’t be terribly deficient.
It really excites me that your vitamin d supplementation has helped, and I really hope you keep us updated on how you progress (as well as the hives). There has been at least 1 other post indicating a vitamin d deficiency:
As you said, I think it isn’t unreasonable to assume that vitamin d could have role in this. Many people on the forum have indicated very little sunlight exposure.
I would love to get tested, but hope to get a house within the next 2 months. So my wife & I have been really tight with money. Plus, my insurance only covers so much after a deductible.
Anyway, thanks for the awsesome post. I am excited to hear of anyone else with experiences of vitamin d. I hope you continue to get well, and please keep us updated.
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: jga on July 01, 2009, 04:42:50 PM
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I tried Vitamin D pills from Walgreens, didn’t help. But I did learn somewhere that Vitamins from the store are of very poor quality and that to see the benefits that studies show, you need the high grade stuff, so I’m still open to Vitamin D as a solution.
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: HivesGuy on July 02, 2009, 02:31:19 PM
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I too tried the supplements JGA, and it didn’t help nearly as much as actually going in the sun. Plus, there is always a risk of overdosing with the supplements, and you can never overdose with sunlight witih vitamin d.
There may be other benefits of sunlight exposure beyond just vitamin d. It is known to help regulate hormones, and all sorts of things.
Also, it takes a very long time usually to get your body back up to proper vitamin d levels in the case of a prolonged deficiency. Supplements tend to take a lot longer than sun exposure, and it could take months to get it back up.
So Vitamin D is something to really think about. It may not be the only factor, but based on a lot of anecdotal evidence, it seems to help many people to get sun exposure on the forum.
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: kluger on July 03, 2009, 03:50:41 PM
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Hi, I thought I’d give a quick update on my Cholinergic Urticaria, and it seems related to this thread.
It has been mostly gone… 🙂 I can tell it’s not completely “cured”; it lurks, I get little tingles, but I am sweating more or less normally and haven’t had a bad outbreak in months. I stopped taking the ranitidine (gen Zantac) as it started wreaking havoc with my stomach (would even *cause* heartburn) but still take the loratadine (gen Claritin) and vitamin D3 [and Zoloft]. However, I am fairly sure that the significant amounts of sunlight I’ve enjoyed are the primary factor in the Cholinergic Urticaria remission.
Still wondering if the D3 level is a cause or symptom (or both). The other forum thread that really interests me is digestion… I certainly have also had issues with indegestion, but it’s mostly gas/bloating, sometimes heartburn, but usually not IBS/diarrhea/constipation. I might look into Digestive Advantage Gas Prevention.
Like HivesGuy I am optimistic about staying Cholinergic Urticaria free for the summer…and hopefully beyond!
current daily regimen:
morning—loratadine, Vitamin D3 (1000), Vitamin C (1000)
evening—sertraline (50mg), sometimes more D3; often enough simethicone for gas
getting direct sunlight pretty much every day
drinking plenty of water
working out a bit…will increase!
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: HivesGuy on July 04, 2009, 02:14:14 PM
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Thanks for that update Kluger.
I too find a lot of Cholinergic Urticaria people seem to have similar digestion problems. I too get bloated/gassy many days. I can get the IBS symptoms too, but sometimes it is just extreme gas (seems like every 5 minutes sometimes), and bloating as well.
The digestive advantage helps with that a lot too. Some foods (like beans) can still give me incredible amounts of gas, and I will usually take beano or Gas X. It seems Gas X helps more than the beano. But before I took Digestive Advantage it seems like everything would bloat me up and cause gas. Now, only certain foods will do it.
That is great about your hives being much better. I too think eventually we will all be able to put this behind us. It may take a while to get everything back to normal, but I think we will all be hives free eventually.
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Title: Re: Vitamin D Deficiency & Supplementation
Post by: gottatry on November 11, 2009, 06:49:41 AM
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very interesting…i was just prescribed a very high dosage of Vitamin D. i’ve suffered with this condition for over 30 years…no fun. it’s a very emotional topic for me for obvious reasons. i have to keep trying.
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Title: My story and possible Vitamin D solution
Post by: Crabman on December 10, 2009, 04:01:56 PM
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I’m glad I found this site. I thought I was the only one.
I’ll just make my story short:
– Grew up in the Philippines where its sunny and hot
– Moved to Seattle in 2000 for a computer job for an IT company
* Seattle = good summer but not much sun thoughout the year (9 months of grey skies and rain)
* Being a computer programmer, you rarely see the sun.
– In 2003, I started having hives that were “heat” activated, but very minor.
– In Dec. 2009, my symptoms got worse so I went to the doctor
– Doctor did various test including blood test
– Blood test showed everything normal except Vitamin D (extremely low)
– Doctor prescribed Vitamin D capsules. Each capsule is 50,000 IU to be taken once a week for three months. Thats like 7,000 IU each day.
So that’s my story so far. I’m on my first week of the Vitamin D. I seem to be improving a little but we’ll find out after 3 months.
I’ll keep you guys/gals updated.
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Title: Re: My story and possible Vitamin D solution
Post by: Crabman on December 14, 2009, 11:44:19 AM
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Well, it’s been almost a week now. I’m still getting some hives but not as much or severe as before (very minor). Tomorrow I’ll be taking another 50,000 IU Vitamin D for the second week. Remember, I will be doing this for 3 months.
BTW, I’m also using an ointment for my hives that my dermatologist prescibed. It’s been very helpful, I just apply it to the affected area and the hives dissappear in about 5 minutes, and no more itching as well. The name of the ointment is called Triamcinolone Acetonide.
More updates to come…
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Title: Re: My story and possible Vitamin D solution
Post by: Crabman on December 16, 2009, 11:04:21 AM
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Today is my birthday! ;D
About a week now and I’m like 99% hives free!
Aside from taking my Vitamin D and hives treatment, the only thing I’m working on right now is fixing the “battle scars” left over from all the scratching I did way back then.
Right now I’m just so happy with the progress!
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Title: Re: My story and possible Vitamin D solution
Post by: dice on December 19, 2009, 10:06:18 AM
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Thanks for posting these updates. I find exercise to solve my problems but I’ll certainly keep this in mind to try out.
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Title: Vitamin D, Vitamin C, Niacin, Thiamine and Cholinergic Urticaria Hives
Post by: shbrown on December 26, 2009, 08:10:31 AM
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I joined this forum because a member of my family is suffering from hives.
I used vitamins to dramatically improve my health and decided, like Ben, to share my knowledge on the internet. I blog about vitamins.
Vitamin D proved critical to improving my immunity to respiratory infections and other illnesses. I’m a research scientist and used the access I have to scientific search engines to study up on vitamin D and other vitamins.
I get into the sunshine for between 10 and 40 minutes between 11 and 1 (mid day) most sunny days. It is so important to my health that I’ve been doing this in the winter. I have only the faintest tan as I am making an effort to maximize vitamin D production in my skin. I started using vitamin D 2.5 years ago and I believe that I still have not achieved full benefit. Vitamin therapy acts slowly and requires patience.
While researching and using vitamins, I noticed that vitamin C, niacin (vitamin B3) and vitamin D had been particularly effective. These three vitamins are associated with the named pandemic deficiency diseases scurby, pellegra, and rickets respectively. It turns out that there is only one other named pandemic deficiency disease (at least in Western European languages). This is beriberi which is caused by deficiency of vitamin B1. Is it possible that these four vitamins are especially important nutrients?
Ben – thanks for starting this site and posting on vitamin D and hives. This will make it easier for me to recommend sunshine as a treatment.
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Title: Re: Vitamin D, Vitamin C, Niacin, Thiamine and Hives
Post by: HivesGuy on February 17, 2010, 06:51:39 AM
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Hello shbrown,
I just wanted to drop by and thanks for the post. Sorry it took so long for a reply. Sometimes I get busy and forget to comment on posts here, but I always try to hit the ones I missed.
I agree that the sun is very important (in safe doses) to our overall health and well-being. Just as long as people don’t overexpose, the sun is a great way to feel better, and enjoy better health.
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Title: Re: My story and possible Vitamin D solution
Post by: Crabman on February 23, 2010, 02:55:12 PM
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Hi everyone,
It’s me again. Sorry for not updating you often about my condition, but I’ve been hives free for many many weeks now. The change was gradual but well worth it. I already finished my vitamin D treatment and will be switching to a lower dose (about 1,000 IU per day).
This might be my last post but I’ll try and visit this site ever now and then.
I wish you all the best on your heat hives battle.
Oh by the way, here’s a pic of my 50k vitamin D taken a few months ago:
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Title: Re: My story and possible Vitamin D solution
Post by: HivesGuy on February 23, 2010, 04:24:21 PM
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Hey Crabman,
Wow, that is very interesting indeed. Thanks so much for sharing that. So did you for sure have cholinergic urticaria? Were your symptoms that you got itchy and prickly when you got hot?
Thanks so much for sharing!
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Title: Re: My story and possible Vitamin D solution
Post by: Crabman on February 24, 2010, 10:05:51 AM
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Well, I don’t know if my symptom was officially called Cholinergic Urticaria, because my doctor never really mentioned those words. However, just like everybody else who is a member of this great forum, we wouldn’t have landed here if we didn’t have that problem.
There were indeed desperate times, and I’ve spent hours researching online until I found this site and realized I was not the only one who had this problem (after reading other peoples stories).
Yes I did get very itchy and prickly whenever I get hot. A few years ago when this problem started, it was tolerable and I never really paid attention to it, but a few months ago it was unbearable, so I went to the doctor.
I cannot guarantee vitamin D will solve everyones problem here. All I know is that it did solve mine.
Aslo, during the past three months or so, I didn’t do anything different. Same diet, same routine, jogged once a month, and that’s it. I spent most of my time sitting down doing work in front of a computer…….creating software for the telecom industry. ;D
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Title: Re: My story and possible Vitamin D solution
Post by: HivesGuy on February 24, 2010, 10:10:22 AM
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Thanks so much for the follow-up.
It is really great to hear this has helped you, and I think that vitamin d looks like a potential solution for us. I hope to definitely get some more soon (both via the sun and possibly supplements).
Thanks again for sharing that.
If the hives ever return, please drop by and let us know. Best of luck to you, and thanks again!
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Title: Re: My story and possible Vitamin D solution
Post by: thecheezit on February 24, 2010, 02:51:22 PM
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Interesting your hives went away with vit D. The guy I’m working with is big into the vit D thing and also thinks because of my low vit D that it could be causing this. I have been taking 6,000iu a day for the past week and a half, not to sure if it has helped much but one thing I noticed is I havent been getting itchy when laying out in the sun.
Usually when I am outside I get kind itchy but I havent since I started vit D, also I did sweat a little bit just from laying out in the sun for 45 minutes, which is surprising. I plan on laying out as much as possible and continuing to take a daily dose of vit D.
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Title: Re: My story and possible Vitamin D solution
Post by: HivesGuy on February 24, 2010, 03:07:04 PM
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Sounds interesting Cheezit.
Definitely keep us up to date on how your vitamin d supplementation works out. If it helps your hives, it may very well have something to do with Cholinergic Urticaria. I am interested to find out. I have started taking supplements myself, albeit it is only 800iu. Probably not nearly enough. I may buy more.
Just don’t overdose on the stuff. I heard that you can actually get too much Vitamin D.
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Title: tests for vit-d, ige
Post by: Chrissy on October 27, 2010, 12:12:26 PM
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So based on what everyone else had said in the forum, I went to my doctor and asked for a bunch of tests…
My Ige was high… but I already knew that b/c I have a ton of allergies.
My Vitamin D was low. So My doctor told me to take 2000iu for Vit D3.
We tests for thyroid… that was fine.
I went to my allergy specialist & he basically told me that cholinergic urticaria is not a symptom of another disease/disorder. And he said I just have to wait it out to see if it goes away on its own.
Two doctors have also said that cholinergic urticaria shouldn’t trigger any anaphylactic reactions. So I guess I’ll continue exercising through the discomfort. I still work out with my husband, just in case.
I know this isn’t new news… but eh… its all I got. I already take 400iu of vitamin D. I’m gonna bump that up & see if anything changes… either way, I’ll try to remember to post the results. .
I don’t think anybody should add vitamins/supplements into their diet unless their doctor tells them to… just sayin’
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Title: Re: tests for vit-d, ige
Post by: HivesGuy on October 27, 2010, 12:23:18 PM
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Hey Chrissy,
Thanks for that update. I am sorry to hear they couldn’t help. It is interesting about the vitamin d, and I hope maybe that helps over time. It is frustrating having to wait, but unfortunately, I too have come to accept that there is little I can do but wait.
Please let us know if anything changes, and best of luck to you.
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Title: Re: tests for vit-d, ige
Post by: jessamine1 on November 15, 2010, 10:51:35 PM
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Hi Chrissy and hives guy,
My Cholinergic Urticaria journey is continuing too….I posted probably a month or so ago that ige is high….still havent found if i’m allergic to something specific. And today just got test back for VIT D, turns out im deficient too and have to take vit d tablets….so same two factors as yourself Chrissy.
I asked my doctor whether the low vit d could be causing the hives but he said no. I think doctors really have no idea when it comes to Cholinergic Urticaria……but anyways….
all the best guys…. update soon
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Title: Re: tests for vit-d, ige
Post by: HypoHives on February 11, 2011, 07:32:09 AM
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I went to doctors, got all allergy tests done seems that my IGE is to low for there to be any allergies, I also got a RAST test and still came back ok, I think stress has been a major cause.
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Title: Re: tests for vit-d, ige
Post by: HivesGuy on February 11, 2011, 07:35:33 AM
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Hey Hypohives,
That is interesting that your IGE was low. Most people I have seen post about it said they did have elevated IGE. But who knows, maybe it was just a coincidence for them and the IGE was in related to some other allergy besides Cholinergic Urticaria.
At least you aren’t allergic to anything else.
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Title: Vitamin D and hives link article
Post by: jessamine1 on March 14, 2011, 02:01:10 AM
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Hi there guys, as has come up on the board before some of us here are Vitamin D deficient. Although we have no definitive proof this causes the hives, it could be a contributing factor. This articles suggests there is a link. I myself was serverly deficient in vitamin D and have been taking strong dose of vitamin D, hives are better, not gone….but I am yet to get my vitamin D levels checked again.
I have also tried gluten free, and still am…but my hives vary. I must say however they are much better than when I first got them in July 2010. I can cope with them now….is it the vitamin D? Maybe.
Sorry if it’s been posted before.
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Title: Vitamin D
Post by: Blade_27 on July 19, 2011, 06:07:15 PM
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Not sure if it’s the vitamin D that I’m now taking or my immune system recovering from a bad cold but this last weekend seen temps hovering around 33c {91f} and my attacks have been none existent.
I started taking the vitamin D and my flare ups were no where near a severe as they were just a month ago. I quickly stopped/forgot about taking the vitamins and the flare ups intensified. I got back on them fortunately I did when I did for the last weekend was fairly hot and I had little to no issues.
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Title: Re: Vitamin D and hives link article
Post by: Cathie on November 23, 2011, 09:42:29 PM
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I also read an article about a Vit. D deficiency being linked to chronic hives. Since I noticed many of us in the symptoms forum don’t get a lot of sun, it may be worth trying.
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Title: VITAMIN D HELPED ME!!!
Post by: klen89 on December 06, 2011, 02:04:59 AM
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I had my first run with chronic urticaria my sophomore year of high school. I got one hive, woke up and had over a hundred. They didn’t go away. I had them until August of this year. I went to the hospital multiple times with swelling and anaphylaxis. Saw specialists all over the state, different docs, the works. Then I talked to someone who said they had the swelling and it turned out to be a vitamin d deficiency. Coincidentally, I just had labs come back that said I had a low hemoglobin count–often linked to low vitamin d. THEN my mom found out she had a vitamin d deficiency (can be genetic). Low and behold the thing they NEVER tested me for was the culprit.
Many of you may experience the other symptoms I had:
raynauds syndrome (poor circulation)
anxiety
depression
allergies
mood swings
Well guess what? I started taking vitamin d supplements and all of this has gotten better. I thought all of the other symptoms were because of the hives. I was on immuno suppressents, overloads of steriods and antihistamines. All I needed was vitamin d from the drug store. I was so relieved. I thought NOTHING would fix this. If you have not been tested for low vitamin D, GO DO IT!!! If it comes back low enough you might have to get a shot but it is so worth it to fix this problem!
GOOD LUCK!!! 🙂
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Title: Re: Vitamin D and hives link article
Post by: klen89 on December 06, 2011, 02:07:44 AM
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I am vitamin D deficient too. The sun made mine A LOT worse, something to do with the heat I assume. I found out that vitamin D worked for me by accident. Then got tested and was able to quit all my other meds. Cured my mood swings, depression and anxiety that I thought were stemming from the stress of the hives too. It took me a bit to get it adjusted but then one day they were just gone!
Best of luck to you!
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Title: Re: VITAMIN D HELPED ME!!!
Post by: HivesGuy on December 06, 2011, 04:42:37 PM
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Hello klen89,
Thanks for your post and welcome to the forum!
Your story was fascinating to read, and I am really glad to hear that vitamin d seems to do the trick. There have been a couple of other mentions on the forum of it helping people as well, so this is interesting. I take it myself too.
Just out of curiosity, how long did you take it before it went away, and how many IU’s per day?
Thanks again for sharing that with us, and I hope this continues to work for you.