Chronic Urticara

[lesleyag]

Hi,

I was diagnosed with Celiac last December and have been gluten free since then and feel great. However I have suffered with chronic urticaria (hives) for years. No-one has ever been able to figure out why I get them. I naively hoped that celiac was the problem but unfortunately they haven't gone away. I keep them somewhat under control by taking Allegra in the morning and Zyrtec in the evening. I get them all over the body but the worst are on the soles of my feet, if you want to know what it feels like, trying walking on golf balls in your bare feet for an hour or so!! I am curious whether anyone else has this problem. I have been having a really bad outbreak, which is annoying as I feel so well otherwise!

Thanks in advance for any help.

Lesley

[seeking-wholeness]

Lesley, I don't have any insight, unfortunately, but I was wondering if you have had allergy testing. You probably have, but I consider it an obligatory question when someone mentions hives!

[jillcole]

my son had hives ALL over his body for about 3 months. They started last Ocotber as little pimple like things here & there on his body. they continued to spread until the hives hit. He had both the test scratching and the rast testing for food and all came back negative. He even had a bowel sample testing for parasites which was negative. Anyway the allergist told him he had an autoimmune disease and told him would would be on steroids off & on for the rest of his life! @@!!!@ doctor! Not my son. since that doctor doesn't have the knowlege to help, only harm my son we have never been back. We tried another doctor, more along the lines of a naturaopath & he put him on an illimination diet & about 1000.00 worth of testing & supplements. He did get alot better. His hives went back down to welts & a rash but nothing completely got rid of it. We could not afford the doctor anymore & my son went off the illimination diet. He still had a few welts & rash. The more research I have done on celiac disease (2 years now) I believe both my son & myself have a intollerence to gluten. I put him back on a gluten free diet for about a week now. The 3rd day his welts started to clear up. I have heard of doctors who do 'live blood' tseting. A couple drops of blood and under a microscope they evaluate your blood and are able to tell all sorts of things. I have a girl friend who swears by it. 1 & 1/2 years ago she was in a wheel chair if there was any walking to be done & had lupus. Today she can walk miles & has no sign of lupus. I'm taking my son to him. sorry to solutions but at least there is someone else in your boat with you. Good Luck.

[lesleyag]

Hi,

Yup, I've had allergy testing, nothing definitive resulted. I have had this problem since I was about 15 and I'm now 54. I have been on all kinds of stuff including steroids which I now avoid like the plague. I have been on Zyrtec once daily for about 2 years and that helped for a while, then they came back with a vengeance and the Dr. added Allegra once daily about a year ago. All the research I've done points to the fact that they have no clue why some people get them. I have a rare blood type and I have come to the conclusion I just have a weird body - I have reactions to foods ranging from vomiting, headaches and hives for a year or two and then can go back to them and I'm fine ( the latest is shrimp which I love, can't wait for that to go away!!!). Getting diagnosed with celiac last year was the best thing that ever happened to me, all kinds of strange symptoms cleared up just can't shake those hives!!! Thanks for the input - I may well try live blood testing if I can find someone to do it. As I said I feel so good after going gluten free I just want to get hive free as well.

Lesley

[aliza marie]

Hi Lesley...

I have just been browsing this site for about a week trying to find some insight on my ill health and tring to find answers...

I saw your post and I had to respond...I am 29 and I have had problems with hives since my freshman of college.

It started out with your typical hives...I would get them on my arms at first. When I went to the college clinic they had no clue what was causing them but would give me a shot of adrenaline that would clear them up within minutes. I later took prednisone too especially when they lasted longer than usual...but that's all that have ever done for them. I do not like taking medicine much...and I didn' t want to go down the frustrating doctor road!

I noticed that staying out in the cold would sometimes trigger them as I had them several times after prolonged cold exposure, i.e, football games, etc. I also think they are in my case, triggered by emotional stress as well.

I use to get them all over...arms, legs, thighs...but the last few years I have mainly had problems with getting them on the soles of my feet...which I have NEVER heard anyone ever describe! YOU are the first!!

And it is TRULY frustrating at times! -Not just because of the problem itself; when I tell anyone about it they kind of give you that "yeah... that's a little strange IF it is true" look. It's hard to prove because you cannot really see them on the soles of your feet. There will sometimes be some localized redness but rarely enough to really see it....and you cannot really see the swelling.

I, as usual will notice my foot start to itch a lot...shortly after my foot will swell and it will be uncomfortable to walk for hours. It literally feels like you have a rock taped to the bottom of your foot. It is always crazy that you can experience that much uncomfort...and not really see a visual of it..it IS strange and THAT is frustrating!!

I wish I had more inforamtion for you...I can only commensurate and tell you that you are not alone! I too was hoping that if I do have Celiac...or gluten sensitivity that maybe it would clear up when I went gluten-free.

How often do you have it and how severe is it...is it limited mostly to your feet now or do you still have it all over as well? What if any triggers have you noticed?

I now know that some one else has the same problem as I do....though I am sorry either of us has to deal with this...as I am also that so many have to live with Celiac. May God bless us all.

Thank you for your post!!

Lisa

[webgyrl]

Woo hoo! Hives! lol. I too get hives from everything under the sun, all over my body. I'll be on allegra for the remainder of my life. I went to the allergist and found out I have something called "dermatographism." (The name of this rare condition literally means to "write on the skin." When pressure is applied to the skin or the skin is scratched, raised lines appear on those areas due to allergy-based angioedema that leads to swelling beneath the skin.)

If I go more than 24 hours w/out a dose of Allegra my palms start to itch as well as the soles of my feet...and here I thought I was the only one to suffer from itchy, swollen feet! I've had dermatographism for over 10 years and was told that in most cases, it clears up w/in 6 months - 1 year. Since I've gone well past that, I'm stuck with it now...forever.

I cannot go into a perfume shop or a store that sells highly scented candles or toiletries or my entire body breaks out immediately into tiny hives and I have a hard time breathing. If I get my hand stamped at a show or something that requires stamping for re-entry, I end up with a huge hive/welt in the exact shape of the stamp. The list goes on and on...

Thank God for Allegra. That keeps the itching and swelling under control although I do still welt up when scratched. I had hoped that being gluten-free would help with this condition but I'm just as bad now as when I went gluten-free last February.

I wanted to post to let you know you're not alone. The hives I get are only stopped by zyrtec and the allergist could find no rhyme or reason for them. Just said I had hyper sensitive skin and a slightly odd body. lol.

Funny story...about 8 years ago I was in a store and saw a face mask for diving. Decided to try it on. To make sure the seal is good, you're supposed to put it on and suck in, see if it sticks to the face. After a few seconds of good suction, I pulled it off and continued to wander about the store. My mom was with me and about 4 minutes later, she comes up and says "what did you DO to your face?!" I went a mirror and hahahahaha. Every place that mask had made contact with me had welted up HUGE. I had a perfect outline of the mask welted onto my face. lol. It took about 20 minutes to calm down. At the time, I was mortified with embarassment...now it's just a funny story about me and my wacko skin :-)

Hive sufferers...unite! lol.

[lesleyag]

Hi Fellow Feet Sufferers,

I hate to tell you I have had this problem ( you are right - dermatographism) for close to 40 years, I know they say it usually clear up in 6 months or so, right!!! My experience is that I have it for a few months, it goes for a few months and usually comes back worse than ever !! However recent years have been by far the worst. Mine started with lips and eyelids swelling, then graduated to everywhere else. I know that itchy palm feeling well. I was at my allergist the other day and he is substituing my Allegra to Zantac. I had been taking Allegra and Zyrtec. I am trying to reduce the amount of medications I am taking, I take Nexium for GERD, so I am stopping that hoping the Zantac will do double duty!! He also gave me the name of a Doctor out of Columbia who is supposed to be cutting edge on this kind of stuff - I'll keep you posted on whether he comes up with anything. I just find it hard to believe that they can't figure out why this happens. I know the triggers, cold, heat , pressure etc. but why do some days my feet become affected by pressure and not others, my walking habits do not change significantly from one day to the next. Ah well, I suppose it is not life-threatening, just as annoying as hell. Hang in there guys.

Lesley

[tmb]

I see this thread has been inactive for a few years, but I thought I would add my experiences with gluten and cold water hives. I have been reacting to cold and cold water for around 12 years. As I lived alongside a cold sea (10 centograde) and spent quite a bit of time in it, I noticed swelling, redness and itching of the skin. I tried various remedies, homepathic histamines, rhus toc, urticaria urens, eventually gave up trying to solve the mystery and either stayed out of cold water or wore thick wetsuits. I see from this forum and some research that there are a significant numbers of linked cases of celiac disease/GI with cold urticaria. I am only properly gluten-free for the past 3 weeks, with patches over the past 6 months so have not much experience to speak of any improvement.

I see some of the posters report their hives not clearing up after some months gluten-free, however some of the formal research on the connection reports around 7 months showing the hives improves. Has anyone got updates on being gluten-free with improvement in hives? Mine appear to have improved to some extent (with the ice cube test) over the past few months with a candida/yeast free diet for around 6 months and I am interested in what I might expect with being gluten-free. I generally have a recative skin, to shampoos, dryness, soap, deodorant, chlorinated water (this appears to be clasic DH). DH symptoms appear to take quite a while to clear after becoming gluten-free (from what others report).