Hives Angioedema Liver And Celiac

[hiveman]

Ok... I'm new to this whole thing but here goes. I'm hoping somebody out there has a similar situation as I am going nuts with my problems. 37 year old male with development of severe chronic hives in December of 2004 (yes, I'm still suffering). Also accompanied by terrible angioedema to the point that sometimes my arm could use a sling for the pain and I actually carry a cane in my car for the pain in my feet/legs. Spent one year searching with more than useless doctors but eventually referred myself to a GI doc for liver function tests going crazy. In February of this year I did have an Upper Endoscoppy and the biopsy as well as bloodwork identified me as a positive Celiac. The only thing the doctors did was said "avoid wheat" and sent me a card indicating I should look at this site. Nice, huh? Anyway, I've been gluten free since February and been a psychotic fanatic trying to maintain my gluten-free status even down to researching the chemical make-up of some foods to make sure I'm not getting gluten. Here's the problem... I still have hives and angioedema. I never had any intestinal symptoms before my diagnosis nor did I have weight loss and boy did I enjoy my daily bread rations. The only problems were hives/angioedema/liver enzymes going crazy. Anyway, here it is June and I actually feel no better (sometimes worse) and have a constant feeling of fullness on my right side of the abdomen... the GI and Rheumatology and Allergy doctors say it is nothing based on my MRI, Ultrasound, CT scan and blood work... It all boils down to what? I just did more bloodwork last week and I still am producing antibodies to gluten... my doctors don't believe that I am gluten free but if I were any more gluten free I'd just be eating tree bark. Does ANYONE have anything like this? I fit every symptom of pressure urticaria... maybe it isn't related to my celiac problem and they just happened to find that. I appreciate your help.

[Ursa Major]

Ugh, those dumb doctors! Just to make sure, of course you aren't just avoiding wheat, right?

Have you considered cross contamination, personal care products, vitamins and medications as potential sources of gluten?

Have you replaced your toaster (you can't possibly get all the crumbs out), your plastic strainer, wooden cooking spoons, wooden cutting board? Did you check all your soap, shampoo, conditioner, lotion etc. for things like wheat germ oil, barley extract, oat bran?

If you've done all that, you need to consider other intolerances. Have you tried eliminating all dairy? Soy can also cause much the same symptoms as gluten, including stunting of the villi. Corn is another thing that's in a lot of stuff.

Really, there are many things that could be the culprits. You may need to have allergy/intolerance testing done, and/or do an elimination diet.

I hope you figure it out soon, you sound miserable! Don't give up, though. I'll be praying for you, hope you don't mind.

[evie]

Ok... I'm new to this whole thing but here goes. I'm hoping somebody out there has a similar situation as I am going nuts with my problems. 37 year old male with development of severe chronic hives in December of 2004 (yes, I'm still suffering). Also accompanied by terrible angioedema to the point that sometimes my arm could use a sling for the pain and I actually carry a cane in my car for the pain in my feet/legs. Spent one year searching with more than useless doctors but eventually referred myself to a GI doc for liver function tests going crazy. In February of this year I did have an Upper Endoscoppy and the biopsy as well as bloodwork identified me as a positive Celiac. The only thing the doctors did was said "avoid wheat" and sent me a card indicating I should look at this site. Nice, huh? Anyway, I've been gluten free since February and been a psychotic fanatic trying to maintain my gluten-free status even down to researching the chemical make-up of some foods to make sure I'm not getting gluten. Here's the problem... I still have hives and angioedema. I never had any intestinal symptoms before my diagnosis nor did I have weight loss and boy did I enjoy my daily bread rations. The only problems were hives/angioedema/liver enzymes going crazy. Anyway, here it is June and I actually feel no better (sometimes worse) and have a constant feeling of fullness on my right side of the abdomen... the GI and Rheumatology and Allergy doctors say it is nothing based on my MRI, Ultrasound, CT scan and blood work... It all boils down to what? I just did more bloodwork last week and I still am producing antibodies to gluten... my doctors don't believe that I am gluten free but if I were any more gluten free I'd just be eating tree bark. Does ANYONE have anything like this? I fit every symptom of pressure urticaria... maybe it isn't related to my celiac problem and they just happened to find that. I appreciate your help.

hiveman; sounds like you are having problems!! Sorry, you too. Many people on this forum have had or have either constipation or diarrhea, I am wondering if possibly you are somewhat constipated that causes the fullnes on your R. side. I went from "D" to "C" after being gluten free for a few months, now am m ore the way I want to be (nearly 1st time in my life)!! Celiac disease is known to cause liver problems, and edema (I had much swelling for a few months, just a bit in my feet now after nearly 6 mo.)

Also if you are on any medications you could be glutened by prescription or OTC meds, could be in toothpaste, shampoo, getting crumbs from family on counter, silverware drawer, dishes, dishcloth, resturants

or old toaster. there are so many ways to be glutened unknowingly, we have to be so careful. Hoping for the best. stay with this forum, people are so very helpful; I have learned so much here and still learning.

evie

[hiveman]

Thanks for the responses... I did do the elimination thing with all foods but I didn't try the soy thing yet (if it is soy it would be small amounts since most things I eat do not have soy/soy products... I'm getting good at reading the labels). I checked all shampoos, deodorants, toothpaste etc. and nothing there. I will change my toaster but I haven't found a bread worthy enough to have toast on any regular basis... my kids made me some bread last week that was pretty good, though. When I did try toasting it I made sure to use a piece of tinfoil in the toaster oven before putting the bread in... I burned it Argghhhh.

My cooking utensils are either metal or plastic so I don't think I'm getting gluten there.

I don't seem to be constipated either but I'm assuming most of my problems are due to a change in diet. Of course I had some of this fullness back before changing my diet too... it is almost like a cramp you get in your side after running too much or swimming too much... hard to describe.

My swelling is probably the most problematic of all issues... I don't get generalized swelling but instead see very point specific "welts" that are really painful. Usually they end up in my feet/thighs or hands/forearms and make it very painful to walk, drive, use the lawnmower, etc. <p>

We are having our water checked now to make sure I'm not gettnig some weird unrelated thing from the water.

I'm also taking a 2week break from work (the first in 8 years) to see if it is something in that environment that is causing my hives.<p>

I tend to think the celiac is just something the doctors happened to find because I kept on pushing them. In the past year and a half I have been to the ER 3 times, seen my family doc so much that I can't keep up with the co-pay, seen an allergist (great guy and probably the most interested in my problem), a Rheumatologist, another allergist at the university research center, a GI doctor (kind of a jerk that just wanted to start exploring internally), a Liver specialist at a different university/medical center that put together the possible celiac link, his associate that performed the upper endoscopy, his associate Rheumatologist, and have had test after test after test. The better GI guy that did the endoscopy actually came in to my room with his resident doctor and they both said they didn't think my hives/edema/welts/pain was related to the celiac after this much time. I almost wish they had just held that to themselves to let me think there was an end in sight. <p>

The pressure urticaria site indicates that a cause may never be found but I'm hoping celiac is the answer. The lack of descriptions of my problems in everything I read makes me wonder if it is or isn't related... I've bought the books, I've searched the web, I've talked to too many docs.<p>Thanks for letting me vent...

[trents]

How are your liver enzymes doing since going gluten-free? Have you had allergy/food sensitivity testing done? It is well-known that Celiacs typically develop other food sensitivities because of the leaky gut issue. Also, the anti glidden antibody tests can be falsely positive, that's why they do the small intestine biopsy to confirm what the antibody tests show. I think there are other enterological conditions that can produce the antibodies: Chrones?

Steve

[hiveman]

My liver enzymes are for the most part better but my alk phos level is still around 320 when I'm told it should be less than 180 or so. I hope it isn't Crohn's... I would think it would have occured to one of these GI guys so far... I've been using the docs from the University of Vermont / Medical Center of Vermont most recently... there really aren't any other place to go other than on to Boston and I don't know who in Boston.

I haven't had food/allergy testing as I am so reactive to even a skin scratched with a fingernail causes my skin to get red... the allergist has thought I shouldn't test until my hives calm down. I don't know... Do any doctors know what to do? Thanks.

[Green12]

My liver enzymes are for the most part better but my alk phos level is still around 320 when I'm told it should be less than 180 or so. I hope it isn't Crohn's... I would think it would have occured to one of these GI guys so far... I've been using the docs from the University of Vermont / Medical Center of Vermont most recently... there really aren't any other place to go other than on to Boston and I don't know who in Boston.

I haven't had food/allergy testing as I am so reactive to even a skin scratched with a fingernail causes my skin to get red... the allergist has thought I shouldn't test until my hives calm down. I don't know... Do any doctors know what to do? Thanks.

Hiveman,

I have angioedema, and have for several years. It is excruciatingly painful. I have not found one doctor that knows how to treat it, let alone what it is or why it happens. Alot of the research I have done recently on the internet has led me to believe there is a connection to the liver due to the fact that there are a few pharmeceutical companies in Europe developing a drug treating angioedema and cirrhosis.

[hiveman]

Hiveman,

I have angioedema, and have for several years. It is excruciatingly painful. I have not found one doctor that knows how to treat it, let alone what it is or why it happens. Alot of the research I have done recently on the internet has led me to believe there is a connection to the liver due to the fact that there are a few pharmeceutical companies in Europe developing a drug treating angioedema and cirrhosis.

Do you get it in localized areas too? Today I have a welt/hive/swelling just above my kneecap that is so painful I lift my leg with my hands and then limp around... this is pretty typical. By tomorrow it will probably be gone and I'll have a different one on my foot or somewhere else. To look at me you wouldn't notice the one on my kneecap but on occasion you can actually see the raised/swollen area... in my forearm it feels like it is broken at times. Awful feeling.

[Green12]

Do you get it in localized areas too? Today I have a welt/hive/swelling just above my kneecap that is so painful I lift my leg with my hands and then limp around... this is pretty typical. By tomorrow it will probably be gone and I'll have a different one on my foot or somewhere else. To look at me you wouldn't notice the one on my kneecap but on occasion you can actually see the raised/swollen area... in my forearm it feels like it is broken at times. Awful feeling.

I have a severe case. I get an outbreak every month without fail. it starts out small in one area, or a few, like the hands, elbows, ears, etc. and then they grow and get bigger and bigger covering a large area, deeper set into the layers of tissue, and redder and more painful. They also generate a lot of heat. My outbreaks last from 7- 10 days. One month I had an outbreak that lasted 21 days and my whole body was covered.

It can be fatal if it gets into the throat, so you should be aware when you have your outbreaks and go to the E.R. immediately if you feel a swelling/closing in your throat.

[Jestgar]

Hi Hiveman,

I have contact urticaria (not pressure) and have been gluten-free for two months. I've noticed that the reaction has been lessening, but if I get a little bit glutened the reaction is back to severe. Fortunately (?) I also get a headache when glutened so I have been able to clearly identify all sources. Even so, I itch all the time, even when gluten-free. It has become much easier to deal with, however. I think the urticaria sites also say that frequently urticaria eventually goes away, so maybe once you get your body straightened out you will at least be able to get rid of that annoyance...

J

[Girl Ninja]

Hives are my main symptom. For 6 years, I got them all over my body every day. They would mostly be deep in the tissue of knees, hands, feet, elbows, shoulders, etc. Those ones are super painful and leave me with a chronic fatigue-like fog from trying to function through the pain. I would get pressure hives from sitting or standing for too long or clapping. I couldn't buy a new pair of shoes for years. It made my feet swell so bad I couldn't walk for days. I would get patches of hot, super itchy surface hives that covered my entire back, stomach, or legs for days at a time. Sometimes, when my son was a baby, I wouldn't leave the house because they were so bad on my face I was sure everyone would think I was being abused and try to intervene to protect my son. Sometimes I was afraid to sleep for fear I'd wake up and they'd be even worse.

All of my doctors were stumped. I was put on Benadryl (no help), Claritin (stupid head, no help), Zyrtec (no difference), and Prednisone (helped 1st day and then made them go NUTS), and some otc homeopathic stuff(no help). Then they just gave up.

Mine are clearing up now. Have you tried a cortisol blocker? I tried Relacore on the off chance that they might be stress related and it helps immensely. I took it daily for about a year before my hives let up without it. At first, the relief would be brief and then more suffering until I could take more. The longer I took it, the longer the relief seemed to last. It has rice flour in it. That or Cortislim (same basic premise, costs more) are the only thing in pill form that have ever helped. Heat packs or super hot showers sometimes helped. No lotion or cream of any sort ever helped (several prescriptions there too).

I still get them a few times a month or if I get gluten, but they're nowhere near as bad. I've got them this week from some chicken salad that I shouldn't have eaten on Saturday.

[hiveman]

Hives are my main symptom. For 6 years, I got them all over my body every day. They would mostly be deep in the tissue of knees, hands, feet, elbows, shoulders, etc. Those ones are super painful and leave me with a chronic fatigue-like fog from trying to function through the pain. I would get pressure hives from sitting or standing for too long or clapping. I couldn't buy a new pair of shoes for years. It made my feet swell so bad I couldn't walk for days. I would get patches of hot, super itchy surface hives that covered my entire back, stomach, or legs for days at a time. Sometimes, when my son was a baby, I wouldn't leave the house because they were so bad on my face I was sure everyone would think I was being abused and try to intervene to protect my son. Sometimes I was afraid to sleep for fear I'd wake up and they'd be even worse.

All of my doctors were stumped. I was put on Benadryl (no help), Claritin (stupid head, no help), Zyrtec (no difference), and Prednisone (helped 1st day and then made them go NUTS), and some otc homeopathic stuff(no help). Then they just gave up.

Mine are clearing up now. Have you tried a cortisol blocker? I tried Relacore on the off chance that they might be stress related and it helps immensely. I took it daily for about a year before my hives let up without it. At first, the relief would be brief and then more suffering until I could take more. The longer I took it, the longer the relief seemed to last. It has rice flour in it. That or Cortislim (same basic premise, costs more) are the only thing in pill form that have ever helped. Heat packs or super hot showers sometimes helped. No lotion or cream of any sort ever helped (several prescriptions there too).

I still get them a few times a month or if I get gluten, but they're nowhere near as bad. I've got them this week from some chicken salad that I shouldn't have eaten on Saturday.

Thank you, thank you, thank you... you just described me perfectly (even though you were describing yourself, ha, ha)... Everything you mention has been my problem. I actually sat in a meeting one day with hives all over my face, limping because of my legs with welts/swelling and a blown blood vessel in my eye (ever have that happen? I think it was that I had hives near my eye... awful pain and then the blood vessel popped... CT scan was negative and doctors said "you're fine... it'll go away).

The only thing I haven't tried on your medicine list is Relacore/Cortislim... maybe that will help. I have been on and off prednisone since this all began and yes, it eventually made no difference in relief but made the hives/swelling/etc. even worse. Right now I have been about 1.5months prednisone free and for the most part have hives and swellings every day but within tolerable limits. I was afraid last Saturday that they were back for good as I really had a bad time... forearms/hands/feet/knees/thighs were covered and it just made me sick/tired/in pain... Fatigue is something I get to the point that I can fall asleep while looking at ebay auctions which should otherwise keep me awake.

Hot showers feel good to me too... everyone says "NO hot showers with hives" but that is completely the opposite for me. I too wake up in the morning with them in odd places... usually the bottom of my feet... like I'm walking on marbles/golfballs and wickedly painful ones. Creams/lotions/etc. don't do any good and just make my skin feel weird (hairy legs and lotion just don't mix...) How long before you were diagnosed with celiac? You mention 6 years of suffering... I haven't seen that many yet (1.5years for me)... I'm just hoping that, since I found out about celiac this year maybe I will get a jump on the hives/swelling stuff. Now that I think of it I probably have had symptoms longer than 1.5 years as I remember working under my house on the foundation (old stacked stones) and had wicked pains in my hands when I tried to grip the rocks... probably a precursor to my big flare up.

Here's the obvious/interesting thing: I have worked for the past 12 years at the same hospital in the x-ray department. In December of 2004 I moved my office and took over Administrative management of Outpatient Services... three and a half weeks later I was in the ER with hives everywhere and I could barely walk with the pain in my legs. I guess it wouldn't take a rocket scientist to figure that stress must have figured into my full blown flare up.

Here's another confusing thing to me... I haven't seen any gluten that I know of since February. I see a lot of people mention that they know instantly they've had gluten... headaches, stomach problems, etc. I used to eat a sandwich everyday and plenty of Oreo cookies at night. Sometimes I would buy a loaf of bread at our local bakery and some cheese and that would be lunch... It never bothered me in any instantaneous way... in fact, other than the hives/swellings I had never seen any problem that I knew of. Maybe I'll notice more once the hives are gone, though I don't think I'll actively seek out gluten (no more Milky Way candy bars).

How about the right side discomfort? Anything like that? The prednisone didn't take it away and the CT/MRI was negative other than celiac changes. I'm thinking that I had gained 20 pounds on the prednisone and now I've lost it... it almost feels like I am aware of my fat layer... I'm 6'4" and about 198pounds so I'm not overweight... I used to be a really skinny tall guy.

Thanks again... I knew I couldn't be the only one in the country/world with the same symptoms. My doctors seem completely stumped by me too.

[Girl Ninja]

How long before you were diagnosed with celiac? You mention 6 years of suffering.

I first started getting hives in June of 1999. I am self diagnosed (this April) and have only been gluten-free for about 2 months, but the difference is tremendous. I sort of wish I had tried for a real diagnosis before I tried the diet, but I feel so much better now there's no way I'm doing a gluten challenge. Maybe in a few years when I forget how crappy I felt.

I too wake up in the morning with them in odd places... usually the bottom of my feet... like I'm walking on marbles/golfballs and wickedly painful ones.

Golf balls is exactly how I described it. I was always scared to death that they'd be in my throat!

The only thing I haven't tried on your medicine list is Relacore/Cortislim... maybe that will help.

My trying Relacore was really a fluke thing after I watched a commercial about how it worked (WAY before I ever heard of Celiacs). I know another guy (friend's father, suspected Celiac) who also has the very same hives issues and when I talked to him he was taking Relacore too. Cortislim doesn't work as well and sometimes gives me a reflux sort of feeling so I don't take it unless I'm desperate. Where are you located? Relacore is cheapest at Kroger or Walmart if you have those (or eBay ). Seriously, get some as soon as you can.

Hot showers feel good to me too... everyone says "NO hot showers with hives" but that is completely the opposite for me.

You can pretty much ignore what "everyone" says about hives. I know lots of people who will go "Oh, me too! I just take Benadryl. Clears them right up. It's happened like 5 times!!!" I've given up trying to explain the difference.

I have a reusable hot/ cold pack (it's like a tube sock full of rice) that helps (hot) with really stubborn hives (mostly feet, knees, or shoulders). I got it at Walgreen's for like $6. It's called Bed Buddy.

I really think the Relacore "retrained" my body as to cortisol levels, sort of how antidepressants teach your body to level out serotonin. That's probably why it took so long before I didn't have to have it in my system all the time. I doubt I would have had such a good result from going gluten-free had I not had the Relacore.

I still get them if I'm way tired or sick or if I have gluten in any way. I've gotten them on my head from wheat in shampoo and on my fingers after making my son a sandwich. Extra stress will cause them or make them worse.

Here's another confusing thing to me... I haven't seen any gluten that I know of since February. I see a lot of people mention that they know instantly they've had gluten... headaches, stomach problems, etc. I used to eat a sandwich everyday and plenty of Oreo cookies at night. Sometimes I would buy a loaf of bread at our local bakery and some cheese and that would be lunch... It never bothered me in any instantaneous way... in fact, other than the hives/swellings I had never seen any problem that I knew of. Maybe I'll notice more once the hives are gone, though I don't think I'll actively seek out gluten (no more Milky Way candy bars).

I have noticed a lot more symptoms since the hives have subsided. Migraines, brain fog, more digestive issues, etc. Someone else said that hives are a relatively rare symptom. But I guess you already figured that out. Even if you don't have any other digestive symptoms, you are still damaging your intestines each time you have it. Be glad you caught it before you had a laundry list of symptoms like some of the others in here.

[Green12]

From the research I have done, uticaria and angioedema are not one in the same. You can however have both conditions at the same time overlapping. I have tried cortisol therapy for 2 years and it did nothing for my angioedema outbreaks.

If you try what Girl Ninja suggested hiveman, I do hope you get relief with it. These outbreaks are so painful and debilitating I don't wish them upon anyone. Good luck to you

[Green12]

You can pretty much ignore what "everyone" says about hives. I know lots of people who will go "Oh, me too! I just take Benadryl. Clears them right up. It's happened like 5 times!!!" I've given up trying to explain the difference.

Girl Ninja,

This is so true. Angioedema and some other skin type outbreaks are so different from hives, they don't respond to antihistamine meds like Benadryl, and yet they continue to lump these conditions with hives like they are related.

I used to just say to everyone I get really bad hives, but now I say I have angioedema because they are two totally different things- they still don't get it though.

[Girl Ninja]

I actually never heard of angioedema before this thread. I just looked it up and I guess I had both all along too. I just figured some hives were "surface hives" and the other swelling was still hives, just deeper. Ya learn something every day, huh? I think it would have freaked me out a lot more to have the severe joint pain/ swelling without hives. My doctors (LOTS over the years) have never given me any idea what the cause could be and have mostly just shrugged off my symptoms. The doc I see now said "That sucks. I don't know what to tell you." And we never discussed it again. I cannot stand her.

[Fiddle-Faddle]

Is there a clear-cut difference between hives and DH? Just wondering.

Also, a friend of mine who had hives for months (rather like yours), all over her trunk, trace them to a hair-coloring she was using. Interestingly, she didn't get hives anywhere near her head, but as soon as she switched to a different brand, they went away and never came back

[hiveman]

You've been very good about helping me realize I'm not alone in this condition. I too get both angioedema and hives... I limped around at work the other day because the pain was so great. I am sick of trying to explain this to people so I just tell them I bumped my knee on the table... it is much easier.

My first major outbreak was angioedema only and I walked around like frankenstein because everything hurt to bend. I went to a rheumatologist and he said "oh well... just hives". Another allergist said "simple hives... they'll go away" I am in the medical field (x-ray/CT tech originally) and I have to do continuing education credits to keep my license... you'd think these guys would at least read up on these symptoms and give us all some hope... idiots. I know now after many years that it mainly takes a lot of money and the desire to become a doctor more than it takes extreme intelligence (of course, I'm sure most doctors would disagree because they are always right... ha!)

Well... I am obviously hurting tonight as my sarcasm is coming through... sorry.

I built a small dog fence today and now I am suffering in my hands... going to rest up tonight as I have a "gig" tomorrow night playing guitar and I have to get rid of these as soon as possible... I usually try and play through the pain but it doesn't always work.

I guess the difference between DH and hives is the blistering rash that you get with DH. Hives just (well, not just) are welts that swell up on your skin and can be itchy or painful. I've read about DH but do not have those symptoms.

I've been gluten free since February and I guess I can say I'm at least not on prednisone anymore but they are always there... hovering... lingering... waiting to raise their ugly heads like demons beneath my skin... Ah. ha, ha, ha...ok, now I'm getting into diabolical laughter mode... Spanish inquisition anyone? My wife tells me I am too much of a Monty Python nerd.

I had a lady at work tell me last week: "here's what you do... wake up and take two benadryl every morning and they'll go away within a week completely... that's what worked for me when I had them." I told her that I took 2 in the morning and 2 at night along with zyrtec and cimetedine and it didn't do anything. She told me I must not have taken it long enough. Arggghhh! I know they're trying to help but sometimes it gets so annoying.

Good news... a different doctor called me the other night and told me my diet must be working as I do not have the antibodies to gluten anymore (contrary to what I thought before)... she just said "keep up the good work and hopefully this hive thing will go away".

Bye for now.

[Girl Ninja]

The doctors will pick every little milestone and use that as your next "hives will go away" deadline. Mine were supposed to stop after my son was born, after I stopped nursing him, after I increased my exercise, after I changed jobs, etc. They have no idea.

[Green12]

I actually never heard of angioedema before this thread. I just looked it up and I guess I had both all along too. I just figured some hives were "surface hives" and the other swelling was still hives, just deeper. Ya learn something every day, huh? I think it would have freaked me out a lot more to have the severe joint pain/ swelling without hives. My doctors (LOTS over the years) have never given me any idea what the cause could be and have mostly just shrugged off my symptoms. The doc I see now said "That sucks. I don't know what to tell you." And we never discussed it again. I cannot stand her.

That is one of the differences between uticaria/hives and angioedema, that uticaria/hives is on the surface and angioedema goes much deeper into the tissue (thus the reason it is so painful).

Yeah, those doctors sure are something else. I have had some wonderful experiences too

Is there a clear-cut difference between hives and DH? Just wondering.

Fiddle Faddle,

I don't know much about DH so I don't really know what the difference is between the two.

I went to a rheumatologist and he said "oh well... just hives". Another allergist said "simple hives... they'll go away" I am in the medical field (x-ray/CT tech originally) and I have to do continuing education credits to keep my license... you'd think these guys would at least read up on these symptoms and give us all some hope... idiots. I know now after many years that it mainly takes a lot of money and the desire to become a doctor more than it takes extreme intelligence (of course, I'm sure most doctors would disagree because they are always right... ha!)

Well... I am obviously hurting tonight as my sarcasm is coming through... sorry.

I built a small dog fence today and now I am suffering in my hands... going to rest up tonight as I have a "gig" tomorrow night playing guitar and I have to get rid of these as soon as possible... I usually try and play through the pain but it doesn't always work.

I had a lady at work tell me last week: "here's what you do... wake up and take two benadryl every morning and they'll go away within a week completely... that's what worked for me when I had them." I told her that I took 2 in the morning and 2 at night along with zyrtec and cimetedine and it didn't do anything. She told me I must not have taken it long enough. Arggghhh! I know they're trying to help but sometimes it gets so annoying.

I understand your sarcasm hiveman, no worries. The pain is severe during reactions and there isn't anything to do to for relief. It's good news you are on the right track with your gluten free diet and hopefully you will continue to improve in that area.

Doctors will not be of any help because they don't even know what it is, their solution is to treat with prednisone (like you said) or shots of epinephrine and taking antihistamines. Angioedema does not respond to these things, it may be suppressed for a short time but it will not make them go away.

My favorite is "they'll eventually burn out", well I had them for 2 years staring in 1995 and then they returned with a vengeance in 2002 and haven't gone away since.

[Guest Robbin]

omg, I have had itchy hives for years and painful lumps I associated with fibromyalgia. I blamed so much on fibromyalgia and thought my life was reduced to constant sickness hell. My doctors all would say, Oh, its an allergy or it's from fibromyalgia. Always wanted to know what stress I was under and if I need an antidepressant. Like who doesn't have any stress ? I've been on prednisone and creams and soaks and so much crud that I am stunned to hear your symptoms and that it actually has a NAME. I thought it was some weird form of dh or something. Thank you for posting this. It has been one of many "AHA" moments in this celiac journey. I hope you get relief soon. I have been gluten-free since Jan. At that time I had severe hives/rash on the side of my thighs and abdomen. It strangely moved up slowly to my neck over the next couple of months and disappeared. The hard painful lumps under the skin( I am not sure are the same as what you describe -these are big, like an inch and a half diameter?), have been slowly dissolving. Keep us posted on your recovery and take care. Thank you again for sharing also, I have had up and down liver enzymes too--is this related to the liver not removing toxins maybe?

[hiveman]

Another joins the ranks of those of us with weird hives and swellings... welcome Robbin... I too wondered about fibromyalgia. The angioedema thing is what my allergist called the swellings... again, deep tissue, painful, under the skin welts with our without discoloration... and yes, sometimes small 1 to 2.5 inches and other times a little larger. The one on my foot that has developed since about 6pm is visually almost not noticeable but when I step... ouch... another golfball.

I don't know about the liver enzyme thing. The doctor that did my endoscopy and found the celiac by biopsy mentioned about 3months later that I could be getting hives on/in my intestines. I had asked others before him and they all said "no way" but I knew I must be getting them internally somewhere. My only thought is that the hives are somewhere in the duodenum near the spot where the common bile duct enters and is causing some restriction there. My gallbladder is huge but apparently still within the upper limits of normal. I had an MRI to look for primary sclerosing cholangiitis but that was negative.

everything we seem to be describing is definitly an auto-immune disorder... My body reacted to something and hasn't stopped since (I'm hoping it is just the gluten)... now, I'm trying to get the autoimmune response to stop.

Prednisone slows/stops the immune response which is why it may/can work but it has so many nasty side effects that I prefer to steer clear of it. I only went back on it in February as I was really suffering. I weaned really slowly to try and keep the reactions at bay.

Good news... my dog appreciates the new fenced in area I made for him today so I guess the swelling tonight is worth it in that respect... We are going away for the 4th weekend and it was either stick him in a cage at the local vets or build a fenced in running area and have family stop by and feed him/let him in at night... I opted for the nicer situation.

Let's keep this post going and see if more people like us pop up. Maybe when I return I will print some of this out and give it to the various doctors I've seen so that down the road when someone else shows up with the same problems they will know to tell them there are others out there.

Another thought from the denial stage of this celiac stuff... I had read so much about hives/angioedema/pressure urticaria that when the doctor mentioned Hives could be found in the intestines I began to wonder whether he found celiac sprue or just hives copying the appearance. I couldn't get a straight answer out of the doctor on this one but my blood work and antibodies showing up combine to make it positive on the celiac thing... he even said he couldn't be more positive. Anyway, that was a thought at one time... I'm wasn't willing to jump off the gluten-free wagon for a thought... I was (and still am) really missing pizza from a place I found 1 month prior to going gluten-free.

Today I found great oreo style cookies... Kinnikinuck (or something like that). $4.25 for three rows but a far cry better than those glutano versions.

[mommida]

I love the K-innik-TOOS!

I just wanted to add (since you are a monty Python fan and all) watch the kissing! You can get glutened by lipstick or lipgloss.

L.

[hiveman]

Thankfully my wife doesn't use lipstick so no worries there but I have read about that... good advice for those who use it.

I had another thought last night... it looks like Juliem is avoiding soy and Ursula mentioned soy as well. Add to that Girl Ninja mentioning that she gets migraines and we come to my next observation. Yesterday I ate at a Natural food market that has a nice selection of gluten-free stuff on the shelves and apparently features gluten-free Mondays at the hot/salad bar. I was starving and couldn't eat anymore cookies and I am sick of those little breakfast bar things (about 2 inces long and look like something my cat would leave on the rug... sorry, a bit disgusting I know). Anyway... I put together a salad and found a vegetarian tofu something that had all of the best ingredients (they actually list the ingredients for each of their dishes)... organic this and that and nothing with gluten in it so I bought some. It was one of the tastiest lunches I have had in a while. I only used oil and vinegar for the salad as I was not sure about the dressing.

So, to get to the point...

I'm thinking the soy thing may be a connection or I got glutened somehow anyway as I developed a severe headache on the way home. I never made a connection with celiac and headaches but, now that I think of it, I've always had headaches off and on... sometimes the kind that make you close one eye, tilt your head, and walk really slowly... the kind that hurt so much you can't brush your teeth. I gave up caffeine a few years ago because of the headaches and that actually made an improvement (caffeine has the opposite effect on headaches for me). But now... I'm going to watch that soy thing for a while too.

[Green12]

I'm thinking the soy thing may be a connection or I got glutened somehow anyway as I developed a severe headache on the way home. I never made a connection with celiac and headaches but, now that I think of it, I've always had headaches off and on... sometimes the kind that make you close one eye, tilt your head, and walk really slowly... the kind that hurt so much you can't brush your teeth. I gave up caffeine a few years ago because of the headaches and that actually made an improvement (caffeine has the opposite effect on headaches for me). But now... I'm going to watch that soy thing for a while too.

hiveman, with auto-immune conditions it is common to have multiple food, chemical, environmental allergies. There are many other threads on this board that address soy allergies that might be helpful to you, as well as other food allergies like dairy.

Here are some angioedema links. I find them to be really vague about the condition and not really helpful, but here they are:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link