autoimmune and hives/rashes

[m starr]

Have had problem with sudden an unexplained rashes/hives for over 2 yrs. Usually rash looks like bad bout with poison ivy on front of shins. Itches like crazy. Then something more like hives...red, sandpaper like skin on chest, armpit area, chin and face appear. Also itches like crazy. Allergist says not an allergy. Says is autoimmune problem. History: have type 1 diabetes and was diagnosed with non-Hodgkins lymphoma 1 1/2 yrs. ago and treated with chemo. Are there any other diabetics, cancer survivors who have chronic, itchy rashes?

[Azaral]

I don't know if this helps you but Celiac disease is linked to high rates of type-1 diabetes and non-Hodgkins lymphoma. Some diabetic medical organizations suggest all Type-1 Diabetics should be ELISA tested for Celiac every year because of how commonly they co-exist.

Some Celiac patients have stomach pain/problems but digestive symptoms are less common in Celiacs who have a chronic and incredibly itchy skin rash (I'll say from experience its worse than poison ivy or the chicken pox, and it just doesn't want to go away).

Celiac is an auto-immune condition caused by ingesting wheat protein and although it hasn't been thoroughly examined scientifically, the anecdotal evidence suggests that other foods can cause nearly identical auto-immune problems.

These will not show up on a typical allergy test, unfortunately. The chemical reaction is like a slow acting allergy catalyzed by IgG or IgA rather than the 'standard' allergy immunoglobulin, IgE.

[Idiopath]

I have Common Variable Immunodeficiency and have had horrible hives for the past 7 months. My doctor believes that they are autoimmune. Haven't found a good solution yet.

good luck in your search for an answer. You can read my blog about my search at http://idiopath.wordpress.com

[abbyG]

I agree with Azoral in picking up on the Celiac angle. My itchy horrid rash turned out to be Dermatitis Herpetiformis (DH), the "skin" form of celiac disease. The lesions had been variously diagnosed as allergies, psoriasis, shingles, dry skin problems (Oh, really!!). Only after the the intestinal and malabsorption complications caused me to lose 35 pounds did we finally figure out I had celiac disease. It then took me nearly 1 1/2 years to get anybody to biopsy one of the lesions. Thank heavens our new family practioner has an aunt who is celiac. As to the celiac disease, I had been variously diagnosed as depressed, anxious, questioned as to the possibility of being anorexic, and had been told I had a compulsive eating disorder (I was eating over 4500 calories a day and still losing weight). My doctor had prescribed Effexor, Lexapro & Wellbutrin on the assumption that I must be mental if I could eat that much & still get skinny. I finally figured out, I've had DH for 20 years--probably it and the celiac disease were triggered by chemotherapy for ovarian cancer at that time. I've been gluten free for 1 1/2 years. I have gained a whole whopping 3 pounds, my BMI is around 17 (eeek!!). But I have my strength back, my migraines are gone, and the DH is 80% healed. You may have trouble getting a doctor to test you for celiac or biopsy a lesion for DH, but it's worth the fight! Sorry to go on for so long! Hope this is of some help. AbbyG

[Unregistered]

Abby G.,
I have a question. The lesion of DH that you refer to, what does it look like? My son and I got ill in Hawaii in 7/05. I think we either got a EBV (virus) or poisoned by the pesticides used in the apartment. Anyway, my son has since been diagnosed with celiac disease. I felt like I was going to pass out after eating for months after our illness began. I just sort of figured out that I could not eat certain foods. I had the celiac blood test and biopsy that were both negative. But had only gone off a gluten free diet for five days before the biospy. Anyway, my son has horrible itching at times and seems to be better after being GF for about 9 months. I have had alot of small scabs, they started out larger but became smaller and almost invisible. Initially the dermatologist told me to quit picking which I insisted I did not. My doc now can not see them but I can feel them. I still think I have CD as my aunt was also diagnosed years earlier and since she has cancer and diabetes now, I am GF with my son. do these scabs seem like the lesions you are referring to?

[Unregistered]

Have had problem with sudden an unexplained Rof shins. Itches like crazy. Then something more like hives...red, sandpaper like skin on chest, armpit area, chin and face appear. Also itches like crazy. Allergist says not an allergy. Says is autoimmune problem. History: have type 1 diabetes and was diagnosed with non-Hodgkins lymphoma 1 1/2 yrs. ago and treated with chemo. Are there any other diabetics, cancer survivors who have chronic, itchy rashes?

I was diagniosed with hep c about 3 yrs ago but they say my body has gotten rid of it bec. I have such a low viral load. I have been having fevers for about 10 yrs. and my body aches. I feel just like I have the flue. I break out in a rash all the time for no reason, mostly on my back arms and legs. I keep a really dry skin rash on the tops of my feet. Recently my doc. recomended that I go to a rhymatoid doc. and says what ever I have is an autoimmune disease. Its been 10 yrs and I dont know what it is. The ovious would be hep c but they tell me that is not the cause. I dont know what help this is to you but maybe shareing my story will help us both.

[cully04]

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 **** 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

[Unregistered]

So, I started with hives about 2 and a half months ago and have been seeing an allergist ever since. I tested negative for allergies, everything but weed and pollen and I've always had those allergies. The hives are horrible, and if I don't take Zyrtec and Benadryl, I can't function. Even with the medicine I have breakouts that are unattractive and cause people to ask questions. I've also been on steroids. I lost a child in my 7th month of pregnancy and they initially thought perhaps it was a thyroid problem but everything came back normal. One of my auto immune anti-body test results came back a little high but not positive for auto immune disease. The allergist referred me back to my OB knowing we want to get pregnant again, and my OB didn't seem concerned, but said she would run it by a rheumatologist just to be sure. So of course I’m nervous about getting pregnant and think there must be an answer.

Seems like maybe I should try going off of Gluten based on other postings. Any help would be appreciated.

[C. Medos]

I have been dealing with hives going on 8 1/2 years. A month after I had my first child is when it appeared. I had been in the emergency room more times than I can count and have had to answer the same questions over and over again.... "what are you allergic to?" "What did you eat different?" " Have you changed soaps?" etc. I had a doctor tell me that he didn't want me to see an allergist because he was affraid that taking me off all medications would trigger another episode. He also told me that if I keep "playing around" with my condition it will kill me. My hive progress very fast now, with in a half an hour with it starting on my wrists it goes to my face and starts to swell my windpipe shut..... I have learned not to panic because it makes it spread faster but I am terrified that this condition what ever it is, that I have passed it to my kids.

I take 150 mg of zantac plus a clariton daily, this has been keeping it away but I think that when I catch a germ from my kids I get hives instead of the flu or strep...

[Loves Purple]

I have been dealing with hives going on 8 1/2 years. A month after I had my first child is when it appeared. I had been in the emergency room more times than I can count and have had to answer the same questions over and over again.... "what are you allergic to?" "What did you eat different?" " Have you changed soaps?" etc. I had a doctor tell me that he didn't want me to see an allergist because he was affraid that taking me off all medications would trigger another episode. He also told me that if I keep "playing around" with my condition it will kill me. My hive progress very fast now, with in a half an hour with it starting on my wrists it goes to my face and starts to swell my windpipe shut..... I have learned not to panic because it makes it spread faster but I am terrified that this condition what ever it is, that I have passed it to my kids.

I take 150 mg of zantac plus a clariton daily, this has been keeping it away but I think that when I catch a germ from my kids I get hives instead of the flu or strep...

Hi C. Medos – I too have been dealing with hives. It started about 4-5 years ago. One morning in October, when preparing for a trip, I saw a patch of what I thought was a rash on my back. I really didn’t think anything about it, took 2 Benadryl. I packed the rest of the Benadryl and off we went. Thank God I packed that Benadryl. A few hours into the trip, my lips swelled so big, and a few bumps started to pop up on my body. I took 2 more Benadryl and it seemed to help. By the time we reached our first stop, I found these bumps (now I know they were hives) all over. I continued to take the Benadryl the entire trip, and all that did was keep them at bay for 3-4 hours and they would come back. Taking a show seemed to escalate the amount of hives. On the way home, I called the doctors and got in right away. Steroids and Benadryl was prescribed. Less than 48 hours later, while at work they started up with a vengeance, even though I was on this medicine. I left work for the doctors and on the way, they started to go into my mouth and I was afraid the next step would be my throat, so I went to ER. They immediately took me in and started IVs of steroids and shots of Benadryl. In the words of my Mother, she said my face was so engulfed with the hives I looked like a monster. If you can find any humor in this, it was Halloween. So that’s were they started, and ever since, I too have been dealing with hives. I can’t even tell you how many steroids I’ve been on. I asked my doctor what the ramifications were, and he said we couldn’t worry about that right now. After a few years, when I continued to break out I wanted to refuse steroids, but my doctor said that was not a good idea. I’ve been on Singular, Zyrtec and steroids all at the same time. Not too long ago, I asked if I could drop the Zyrtec and we did. I actually went for a short time with no break-outs and we hoped it was over. But it wasn’t I continued to have break-outs. As long as I caught the onset right away, it seemed we could better control them, but there are times, when I wake up in the morning that my body is engulfed with them. Because they seemed (and still do) to attack my mouth, it was decided I should carry an epi pen with me. That way if I felt I could not breathe, I could give myself a shot, rather then trying to make it to the ER. I’ve been to an allergist and through extensive allergy testing, but nothing was found. Both my doctor and allergist said we may never find what the cause is. The best diagnosis is that my body is trying to fight something and is over producing antihistamines, which is causing the hive reactions I experience. About a year ago, my doctor said he had another patient with the same hive issue that I was experiencing. I believe he said a university in Michigan was doing work related to hives and found some success with patients that were prescribed Doxepin, which is a anti-depressant. I’ve been on that and Singular for about a year. I haven’t had any skin outbreaks, but my mouth still seems to be under attack. When that gets bad, and if Benadryl does not control this, I go back on the steroid pack. I didn’t mean to make this so long, but I wanted to let you know, it seems our issue is very much the same. They too asked me what I had changed in my life, any soaps, cleaning agents, powders, etc. Nothing had changed, nothing. I was so tired of that question. I still get very, I guess upset is the correct statement, that no one can find what the problem is. And I wonder sometimes what my body is trying to tell me and what are we masking by taking these medicines. But like you, my doctor does not want to take me off any medicines. About 2 weeks ago, I requested a blood pull to check for Celiac disease, which has some of the symptoms we both have experienced. While he does not feel that is it, he agreed to check. I hope to have some results next week. The blood was sent out of state for testing. I continue to do Google searches and try to find new information, which is how I found this site. I hope someday, they will find the answer, or this will go away!