I've Been Diagnosed With Hives

[Guest kim07]

I was diagnosed with Celiac Disease about 2 1/2 years ago, after a pretty routine stomach surgery. Before that, I had no problem with eating wheat. I guess the gene for 'celiac sprue' was dormant or something, and I'm guessing the surgery brought it out.

After I was diagnosed with Celiac Sprue, if I accidently ate gluten I usually got the same symptoms, joint pain in my legs, and feet severe to where I would have to put a heating pad on full strength on my feet and legs, and some abdominal pain, some unpleasant (bathroom issues), a mouth crack (like a little sore) occasionally right where my my lips seperate. And, (That was about it).

Occasionally I would cheat, I guess feeling sorry for myself, (not being able to eat bread and stuff), thinking I could deal with the symptoms, I obviously was in denial over the seriousness of Celiac Disease.

I tried to stay on a gluten free diet for the most part, but I probably cheated every 3 to 4 months or so. And during that time, I was still trying to learn how to read labels, so I'm sure even when I was trying my hardest to be gluten free, mistakes we're made.

The last time I ingested gluten was different. I had ordered a gluten free meal from one of my favorite restaurants (one I will never go to again!), and I think they gave me real soy sauce with my meal, instead of the gluten-free sauce they usually give me by accident. I just remember it seemed to taste a lot better than usual, but I didn't catch it.

The next day I had the worst ITCH all over my body that I have ever felt in my life! It was a "travelling itch", I litterally had to remove all my clothes except my underwear and the only blanket that feels decent against my skin is this velour throw. I thought I would go mad (Insane), it wouldn't stop itching and it kept me up at nights. After seeing a dermatologist who was absolutely no help, I looked for one who specializes in Celiac Sprue. I found out it wasn't DH, which is good, but Chronic Uticaria Hives. They are these tiny little red bumps (the same size as goose bumps that flame up and down, mainly on my arms, shoulders, scalp, and neck. It doesn't fit the profile of DH because they aren't that big, and I don't have the characteristic blisters of DH.

She gave me Zyrtec and these 3 numbing creams, and I had peace for about 3 days, before it came back.

2 doctors have told me now they think its related to my Celiac Disease. I've never had hives or any other kind of skin condition before, besides the usual light teenage acne. I'ts miserable, and nothing seems to be working. I have good doctor's though trying to figure it out. All I know is it has changed my outlook on ever ingesting GLUTEN again!!! I will never ever ever eat it again, at least not purposefully. Everything gets looked up on Delphi list or the Company called before it gets put in my mouth!

I guess I'm wondering has anyone ever heard of a really bad case of hives with Celiac Disease???

[jerseyangel]

I don't get hives associated with my celiac disease, but I do have eczema and when I was still eating gluten, I would get these little red, itchy bumps (like the ones you described) on my inner forearms. I had no idea what they were but I've been gluten free now for 5 months and have not had them in quite a while. It was another one of those things that, looking back, I say "oh,yeah--now it makes sense!" I also had the cracking on the sides of my mouth--gone now. I find that the longer I'm gluten-free, the more sensitive I am with regard to my skin.

[Guest kim07]

I don't get hives associated with my celiac disease, but I do have eczema and when I was still eating gluten, I would get these little red, itchy bumps (like the ones you described) on my inner forearms.  I had no idea what they were but I've been gluten free now for 5 months and have not had them in quite a while.  It was another one of those things that, looking back, I say "oh,yeah--now it makes sense!"  I also had the cracking on the sides of my mouth--gone now.  I find that the longer I'm gluten-free, the more sensitive I am with regard to my skin.

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[Guest kim07]

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Hello,

Thanks for writing back so fast, I'm new to this forum.

2 dermatologists pretty much think its hives, but you never know.

What exactly do you mean the longer you remain gluten free the more sensitive you are with your skin??

Do you mean your skin is more sensitive? Or in general, you notice things about your skin more, and try to take care of it more??

Also was the eczema a travelling itch (like it felt like liny bug feet are crawling down your arms, and did the goose-bump size bumps come and go, change color, from brown to bright red, and include flushing over large parts of your chest?) Did you have a very itchy neck and scalp? Sorry to bombard you with a million questions I'm just going through hell right now with this Hives, or what-ever it is.

[jerseyangel]

Sorry you're feeling so bad. My eczema is only on my eyelid--I've had it for many years--when I went gluten-free, it got better for a while but keeps coming back. Yes, it itches like crazy. I've tried many things for it including RX steriod creams and different moisturizers and nothing works for very long. The red bumps on my arms would appear and be itchy for maybe a week or so and then subside--they did not change color--and would return without apparent reason. My skin is more sensitive the longer I'm gluten-free. I used Cetaphil Cleanser on my face a while back and my skin got red and burned for several days. Things I never had trouble with bother me now. I've been using products from The Gluten Free Savonnerie (1-888-6GF-SOAP). The shampoo, conditioner, bar soap, and lotion have no scent and are pretty good. I've been using them for a couple weeks and have had no problems. Maybe while you're having these issues, it would make sense to follow a very simple diet ie: fruit, veggies, fresh meat, rice, lots of good water etc. until you get a handle on what you're reacting to. Keep in touch--hope you feel better soon

[kelliac]

Hello,

Do you mean your skin is more sensitive?  Or in general, you notice things about your skin more, and try to take care of it more??

Also was the eczema a travelling itch (like it felt like liny bug feet are crawling down your arms, and did the goose-bump size bumps come and go, change color, from brown to bright red, and include flushing over large parts of your chest?)  Did you have a very itchy neck and scalp?  Sorry to bombard you with a million questions I'm just going through hell right now with this Hives, or what-ever it is.

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My family and I have had hives off and on all our lives. Told it was a reaction to medicine, reaction to poison ivy, reaction to soap. . . Mine is typically on my face and neck/chest when I get glutened. My daughter gets it on her knees and hands. My other daughter gets it on her forehead. Sometimes it is just on our stomach. It really doesn't have a rhyme or reason. It stinks.

[Guest kim07]

Sorry you're feeling so bad.  My eczema is only on my eyelid--I've had it for many years--when I went gluten-free, it got better for a while but keeps coming back.  Yes, it itches like crazy.  I've tried many things for it including RX steriod creams and different moisturizers and nothing works for very long.  The red bumps on my arms would appear and be itchy for maybe a week or so and then subside--they did not change color--and would return without apparent reason.  My skin is more sensitive the longer I'm gluten-free.  I used Cetaphil Cleanser on my face a while back and my skin got red and burned for several days.  Things I never had trouble with bother me now.  I've been using products from The Gluten Free Savonnerie (1-888-6GF-SOAP).  The shampoo, conditioner, bar soap, and lotion have no scent and are pretty good.  I've been using them for a couple weeks and have had no problems.  Maybe while you're having these issues, it would make sense to follow a very simple diet ie: fruit, veggies, fresh meat, rice, lots of good water etc. until you get a handle on what you're reacting to.  Keep in touch--hope you feel better soon

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[Guest kim07]

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"UHG help me learn how to use this dang forum for gosh sake

Jersey Girl- I'm sorry about your excema issues, skin issues are not fun! I guess I learned the hard way! If I would have been more careful on my gluten-free diet, I might not be going through this horrendous hives condition now! Anyway, thank you for sharing where you get your natural/gentle products, I think I'm going to have to start using products like the ones you use (like gluten-free shampoo, face soap, etc.) You know, it's not cheap being a celiac!!! has anyone else noticed that??

My doctor has me on steroids, just prednisone, sorry unsure of spelling, plus zantac, plus zyrtec, to keep me sane. I'm pretty miserable right now. I'm just praying that as long as I keep gluten completely out of my diet, it will get better. I have also decided to stop dairy (for a week or two), I felt it was making my skin itch after I drank it, so I'm experimenting life with out dairy right now as well. Today is the 1st day of dairy free.

Anyway, thank you for your friendly advice on where you get your products! I think I will order some tomorrow, that's when my husband get's paid.

kim

[Rachel--24]

"UHG help me learn how to use this dang forum for gosh sake

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Kim, If you want to reply in quotes it will automatically quote the post you are replying to when you hit "reply" button. You can delete anything out of the quote that you dont want to include.

If you DON'T want any quotes in your reply just go further down to where you see a button that says "add reply"....there will be no quotes in your reply.

Hope this helps.

[Guest kim07]

Kim, If you want to reply in quotes it will automatically quote the post you are replying to when you hit "reply" button. You can delete anything out of the quote that you dont want to include.

If you DON'T want any quotes in your reply just go further down to where you see a button that says "add reply"....there will be no quotes in your reply.

Hope this helps. 

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Rachel- Thanks for your help, in help me navigating, this new forum. I'm slowly learning , !

My name is Kim, brand new as I you can see, and about 2 1/2 years a diagnosed Celiac (after a stomach surgery, to repair severe gerd). I never had problems with my body tolerating gluten before, until after the surgery. I'm 34, and right now dealing with a brand new symptom that 2 dermotologists think is related to my celiac disease which is uticera hives, (I'm currently on a lot of meds to help me just not be so misserable, and help get some sleep). I'm not a 100% sure on the correctness of the diagnosis because of the severity of the itch, but am pretty am hoping and pretty sure that it probably is that.

Anyway, I just wanted to tell you a little about myself, since you we're kind enough to write to help me with the board,

nice to meet you, Kim.

[Nickie]

Rachel- Thanks for your help, in help me navigating, this new forum. I'm slowly learning , !

My name is Kim, brand new as I you can see, and about 2 1/2 years a diagnosed Celiac (after a stomach surgery, to repair severe gerd). I never had problems with my body tolerating gluten before, until after the surgery. I'm 34, and right now dealing with a brand new symptom that 2 dermotologists think is related to my celiac disease which is uticera hives, (I'm currently on a lot of meds to help me just not be so misserable, and help get some sleep). I'm not a 100% sure on the correctness of the diagnosis because of the severity of the itch, but am pretty am hoping and pretty sure that it probably is that.

Anyway, I just wanted to tell you a little about myself, since you we're kind enough to write to help me with the board,

nice to meet you, Kim.

Ask about DH or Dermatitis herptiformis, related to gluten intolerence

[TestyTommy]

I've had 'chronic idiopathic urticaria' and 'chronic idiopathic pruritis' for 8 years. I know exactly what you're going through --- try to imagine living with it for all those years!

A few months ago, a new doctor suggested this (and my other problems) may be celiac. I've been gluten-free for about 6 weeks, and I've felt significant improvement with my stomach problems and some with my sleep difficulties. No change in the skin condition, so I'm still not sure it's celiac related. But I'm hoping it will go away in time.

Stay away from prednisone. I know it helps, but that is nasty stuff!

[Nickie]

I've had 'chronic idiopathic urticaria' and 'chronic idiopathic pruritis' for 8 years. I know exactly what you're going through --- try to imagine living with it for all those years!

A few months ago, a new doctor suggested this (and my other problems) may be celiac. I've been gluten-free for about 6 weeks, and I've felt significant improvement with my stomach problems and some with my sleep difficulties. No change in the skin condition, so I'm still not sure it's celiac related. But I'm hoping it will go away in time.

Stay away from prednisone. I know it helps, but that is nasty stuff!

I agree prednisone is very nasty stuff. I use to take it when I had bad asthma attacks, but now I tell my doctor go ahead and prescribe it, I won't take it.

[jerandjan]

Hello,

Thanks for writing back so fast, I'm new to this forum.

2 dermatologists pretty much think its hives, but you never know.

What exactly do you mean the longer you remain gluten free the more sensitive you are with your skin??

Do you mean your skin is more sensitive? Or in general, you notice things about your skin more, and try to take care of it more??

Also was the eczema a travelling itch (like it felt like liny bug feet are crawling down your arms, and did the goose-bump size bumps come and go, change color, from brown to bright red, and include flushing over large parts of your chest?) Did you have a very itchy neck and scalp? Sorry to bombard you with a million questions I'm just going through hell right now with this Hives, or what-ever it is.

Hi Kim 07

My first time here. I read your post about the itching - this is exactly how my son has described his problem he has had for about 2-3 months now. The itching is like something crawling under his skin, his scalp and neck itch furiously at night, but can be through the day as well. The itching is getting worse, all over his body, but worse on his neck/scalp at night - which keeps him awake. The doctors have put him on prednisolone 25mg once a day. This helps reduce the itch, but when he has tried to reduce the meds the problem just increases. We've tried all the usual stuff, changing washing powder, soap, now looking at going gluten free. Has going gluten free stopped your itching? I am worried about him, he's always been really healthy, and fit. He has lost heaps of weight and the incessant itching nearly drives him crazy - it's reduced him to tears (24 y.o.). Just in the last week, the skin on his forearms has become rough looking, sort of scaly and rough to touch.

It sounds like what you have described. if you have found anything that has fixed the problem or at least stopped the itch, could you please let me know. \

Any information we can gather will be greatly appreciated. Thank you so much for taking the time to read this.

Jerandjan