Discussions By Condition: Medical Errors

hives and celiac

Posted In: Medical Errors 10 Replies
  • Posted By: Anonymous
  • January 30, 2008
  • 10:59 AM

Hi everyone,

I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely.

For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that ***l than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! Tina

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10 Replies:

  • Thank you for this post! I broke out with hives in September a year ago, and I assumed it was another allergy (I'm prone to them). I tried eliminating one thing and another, but couldn't pin down the cause. In the meanwhile, the scratching was causing little broken places in my skin, resulting in tiny scabs, which was very unattractive looking. I never got them so badly that I had to go to the hospital, but they were driving me crazy, and were all over my torso and legs. I went to an allergist and a dermatologist, and was perscribed prednisone and zyrtec. Nothing helped more than a tiny bit. Then my mom had an operation to correct a twisted intestine, and while in there, they tested her for celiac due to some other intestinal problems she was having. She tested positive on three different testings. She told me that skin rash was a symptom of celiac, so I decided to cut out gluten, and within days the hives eased off, and were gone altogether in a very short time period of being gluten free. I get a patch every now and then, but never like it was before. Eating a little gluten may or may not cause me to get any hives; apparently there has to be quite a bit in my system to get the hives started seriously. My family is prone to auto immune disorders, and I read that people with celiac risk getting other autoimmune disorders if they eat gluten. I also read that a doctor tested his patient for celiac because he suspected it because of her extreme sensitivity (allergies). I wonder if gluten causes celiac sufferers to be more allergy prone. If I get one allergic reaction, it "stirs up" something in my system, and I'm suddenly more prone to other allergic outbreaks. By the way the wheat germ oil baths may not have been doing as much harm as you would think, because I read that gluten is not absorbable through the skin. Although of course something you get all over your body will probably wind up in your mouth, at least a little of it anyway.Samantha
    Anonymous 42,789 Replies
    • November 11, 2009
    • 04:32 PM
    • 0
    Flag this Response
  • Hi everyone,I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely. For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that ***l than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! Tinathank you so much for your post! i had urticaria for 5 years!! Goiter(enlarged thyroid) muscle weakness and pain, neuropathy, fatigue..you name it! I saw every specialist and my dr. had every part of my body scanned! Nothing..finally I was in the ER because i couldnt breathe...went to my dr who mentioned celiac disease because her best friend recently went through the same thing...only gluten free for 5 days..living on kix cereal, but hopeful!!!
    Anonymous 42,789 Replies
    • November 25, 2009
    • 09:02 PM
    • 0
    Flag this Response
  • Hi everyone,I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely. For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that ***l than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! TinaThank you for this post!! I have had chronic hives for over ten years and have only recently found a holistic doctor who has checked my thyroid and has me on a trial dairy-free, grain-free diet. I also have acne and this paleo diet I'm on is clearing up all my skin problems. I also was recently diagnosed with Hashimoto's because I too had high levels of thyroid antibodies. It seems celiacs and autoimmune thyroid problems are linked. There is, however, one more piece to my puzzle which is that my new doc (who I respect and trust) wanted to get to the bottom of what was causing these problems for me and he did a heavy metals testing which we saw that i have extremely high amounts of mercury and lead in my system. Chronic exposure to mercury can cause autoimmune disorders. So now I m in the process of chelating (detoxing) but feel very lucky and thankful that I found a doctor who was interested as I was to get to the bottom of what was causing my hives and a whole lot of other symptoms.
    Anonymous 42,789 Replies
    • January 23, 2010
    • 08:08 PM
    • 0
    Flag this Response
  • Hi everyone,I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely. For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that ***l than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! TinaWow! I come across your post in looking for information for celiac for MYSELF. However, my 3 year old has had "chronic hives" for last 3 months. An allergy test revealed a milk protein allergy, but the doc was certain that was not the cause of hives. He's been taking Xyzal for the last 6 weeks. The hives improved for a little bit, but are getting bad again. We just tried a stint of antibiotics to treat a microbial infection that may not exist. Still no improvement. Your post prompts me to call the doc again and get him tested for celiac. Thank you!
    Anonymous 42,789 Replies
    • August 25, 2010
    • 08:03 PM
    • 0
    Flag this Response
  • Interesting post - my husband had celiac symptoms of dermatitis herpetaformis (DH) rash, but very few digestive problems other than diarrhea & gas after meals. He fought with severe DH, and we doctored for over a year, before finally going to a dermatologist, who recognized it for celiac at first glance. He lived gluten free for 2 years, and just this summer has had severe breakouts of DH again - and along with the DH he loses hearing in one ear (which happened before his original diagnosis 2 yrs. ago also). EENT dr. says they aren't related - HA - too coincidental. In some individuals, there IS neuro symptoms and involvement as well. He too has had unexplained hives over the years - but never as severe as this episode or with the water blisters of DH.The dermatologist has explained that with true celiac disease, the longer a body is gluten free, it can develop a more severe presentation of symptoms as time goes on. This dr. has just now started him on the celiac anti-infective drug Dapsone, which has really calmed down his severe MISERABLE latest outbreak of DH. Dapsone is very ******n the liver, so they don't recommend taking it unless you have been gluten free and are still struggling with symptoms.So I am interested in any of the symptoms that others have with celiac. Symptoms are so varied and affecting different body systems - so this type of chat board can be very helpful to those struggling to identify and/or understand their symptoms! Thanks all!
    Anonymous 42,789 Replies
    • August 26, 2010
    • 05:07 PM
    • 0
    Flag this Response
  • Interesting. I'm 19 and have never had a hive in my life, but the last four days has been tsunami of hives that come and go. I'm on the Atkins diet where you eat NO bread, but Thursday, I had a Hamburger, Friday, I had another hamburger and then Saturday and Sunday I had sandwiches. Before we started this diet, about a month ago, I was eating bread at least twice a week.The hives will cover my head, arms, chest, thighs and legs, then disappear with no medicines. But then come back again with a vengeance.My grandpa has celiac but before now there was no indication that anyone else in our family did. I also have a bad chest cold and we thought I was allergic to the Robitussin I was taking. So now I'm taking whiskey and honey and am still getting them.Beside cutting out all gluten and getting blood work done, is there anything else I can do maybe to rule out other possible causes to figure out what this is?Thanks
    Anonymous 42,789 Replies
    • October 25, 2010
    • 07:43 AM
    • 0
    Flag this Response
  • OMG. My big sister has Celiac and suggested my hives were a symptom and I should be tested as it runs in families. It's late and my itching is keeping me awake. Can teh ER diagnose or does it have to be my family doctor whom avoided the subject when I brought it up last that I wanted a test for Celiac. : (I need a new Dr. I think.
    Anonymous 42,789 Replies
    • December 14, 2010
    • 06:14 AM
    • 0
    Flag this Response
  • Thank you for your post. I'm 46 and have suffered cronic hives and sometimes itching with no hives for 1 year. I cut wheat out of my diet for 2 weeks with no change. Do you think there is still a chance I have Celiac? I also have cronic uncontrollable diarrhea, severe joint pain and blurred vision.Thanks, ConnieI just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely. For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that ***l than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! Tina
    Anonymous 42,789 Replies
    • January 16, 2011
    • 08:20 PM
    • 0
    Flag this Response
  • I thought I would share a couple of things: (1) one person mentioned having a sister with celiac. if you have an immediate family member with it, you have a 1 in 10 chance! you should definitely be tested. and (2) if you suspect food is your problem, there is a very easy way to figure it out. eat and drink absolutely nothing but lamb and white rice and water for a couple of weeks and see if you get better. if you do, start adding food back one at a time until you figure it out. all testing is inherently unreliable. check out allergiesexplained.com, written by a real, certified allergies who has been practising for decades.
    Anonymous 42,789 Replies Flag this Response
  • Thank you for this post! I broke out with hives in September a year ago, and I assumed it was another allergy (I'm prone to them). I tried eliminating one thing and another, but couldn't pin down the cause. In the meanwhile, the scratching was causing little broken places in my skin, resulting in tiny scabs, which was very unattractive looking. I never got them so badly that I had to go to the hospital, but they were driving me crazy, and were all over my torso and legs. I went to an allergist and a dermatologist, and was perscribed prednisone and zyrtec. Nothing helped more than a tiny bit. Then my mom had an operation to correct a twisted intestine, and while in there, they tested her for celiac due to some other intestinal problems she was having. She tested positive on three different testings. She told me that skin rash was a symptom of celiac, so I decided to cut out gluten, and within days the hives eased off, and were gone altogether in a very short time period of being gluten free. I get a patch every now and then, but never like it was before. Eating a little gluten may or may not cause me to get any hives; apparently there has to be quite a bit in my system to get the hives started seriously. My family is prone to auto immune disorders, and I read that people with celiac risk getting other autoimmune disorders if they eat gluten. I also read that a doctor tested his patient for celiac because he suspected it because of her extreme sensitivity (allergies). I wonder if gluten causes celiac sufferers to be more allergy prone. If I get one allergic reaction, it "stirs up" something in my system, and I'm suddenly more prone to other allergic outbreaks. By the way the wheat germ oil baths may not have been doing as much harm as you would think, because I read that gluten is not absorbable through the skin. Although of course something you get all over your body will probably wind up in your mouth, at least a little of it anyway.SamanthaHi,I really don't mean to correct you, but I was just to my Doctor on Friday, and he told me that It was important to get rid of Make-up, Lotions and any body product including Hair spray and tooth paste and Mouth Washes that have gluten and soy ingredients. I personally am very sensitive to Gluten's and yes I am Celiac too. And yes, My Doctor Confirmed that yes the Wheat proteins and Soy Protiens can both be absorbed into skin and cause problems. I personally believe my Doctor, who is up on everything, and just want to alert others, who might be as sensitive as I am. The hassle is finding products that are Gluten and Soy Free. It's almost next to impossible, but I have found somethings that I am just starting to use, and are really quite effective. Anyway, I hope this will help some who are still strongling with Glutens and you can't figure out where you got them.
    Anonymous 42,789 Replies Flag this Response
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