Recurring Shingles

[britbrighton]

I am new to this forum so please bear with me...I saw the other shingle post but I wondered how many people with celiac-disease have gotten shingles more than once, and at an unusual age (under 50)? I am on my third break-out at 36. My doctor was completely disinterested in the fact that I have celiac-disease and that I thought it could very well relate to my shingle out-breaks....nonetheless he threw an HIV test at me, which I am annoyed and upset about because I have been faithfully married for 15 years, besides having those tests done during my pregnancies by routine. All were negative. Nonetheless, that was his only answer for me...I am so upset, so I was wondering how many others with celiac-disease have suffered multiple recurrences of shingles...the Dr is making me feel crazy...thanks in advance...

[ravenwoodglass]

Are you sure what you are suffering from is shingles? Have you seen a dermatologist? If you haven't you may want to see one. Some of the pictures I have seen of shingles bear a strong resemblance to DH lesions. Both cause a blistering rash. A dermatologist can tell you if you have DH by biopsying the skin next to the rash and looking for the antibodies. Be sure to tell the derm that you are celiac and want to make sure these outbreaks are not DH. One clue it may be DH is the scars the rash leaves. They are purplish red and take a very long time to fade.

[britbrighton]

Are you sure what you are suffering from is shingles? Have you seen a dermatologist? If you haven't you may want to see one. Some of the pictures I have seen of shingles bear a strong resemblance to DH lesions. Both cause a blistering rash. A dermatologist can tell you if you have DH by biopsying the skin next to the rash and looking for the antibodies. Be sure to tell the derm that you are celiac and want to make sure these outbreaks are not DH. One clue it may be DH is the scars the rash leaves. They are purplish red and take a very long time to fade.

Raven-I am definitely certain they are shingles, besides the textbook symptoms (one side of body pain, neuralgia, blisters etc) I was tested a few times and it came out positive for the chicken-pox virus. I do get celiac rashes which are different than the shingles for me. I just wonder if celiac's are more prone to shingles, especially if they get gluten-contaminated, as I often do, no matter how careful I try to be...

[cassP]

yes yes yes, i second ravenwood- as soon as i saw this post title- i thought: "i wonder if she's confused with DH... A LOT of pics look similar"... in fact- ive been on google pics a lot- and i swear a lot of those pics are mislabeled- OR the people didnt know what the rashes were.

im not a doc, but i thought that people only got chicken pox once... and only got shingles once... but i could be very wrong. my mom had shingles before age 50.. and only once. i understand your doc suspecting HIV... but it's not the only thing that would compromise your immune system. if you are complying to the gluten free diet, i would assume you are not immunocompromised... HOWEVER- if you are Iga Deficient- then that could make you vulnerable... but again, i dont know a lot about shingles except that it's supposed to be excruciating and that you probably will only get it once, and it should only last 3 weeks or so.

again, im wondering if you actually have DH ??? i have it, and it is itchy, but not excruciating... and it's been here for almost 6/7 weeks now... maybe you could post a pic ??

[cassP]

One clue it may be DH is the scars the rash leaves. They are purplish red and take a very long time to fade.

do they always leave scars?????

[ravenwoodglass]

Raven-I am definitely certain they are shingles, besides the textbook symptoms (one side of body pain, neuralgia, blisters etc) I was tested a few times and it came out positive for the chicken-pox virus. I do get celiac rashes which are different than the shingles for me. I just wonder if celiac's are more prone to shingles, especially if they get gluten-contaminated, as I often do, no matter how careful I try to be...

It is possible that since you are often getting gluten your system may still be fighting those antibodies and making you more prone to these repeat outbreaks. You may want to do your best to eat only whole unprocessed foods for a while to give your system the best chance to heal. Are you being careful about CC issues in the home and in your toiletries etc.? If you are new to the diet there is a lot to learn about being safe.

[ravenwoodglass]

do they always leave scars?????

Usually yes but for some folks the scars may fade quicker than for others.

[kayo]

I had shingles multiple times all under the age of 30, maybe even under 25. First outbreak I was around 11 or 12. Looking back I think at least one outbreak was DH and not shingles. The doctor was young, confused and gave me an RX for a pain killer as there were no meds for shingles at that time. If I ever breakout again I'll go to a dermatologist.

[modiddly16]

You can definitely get shingles more than once. My boyfriend who is not a celiac has gotten three cases of shingles in the past year, which is rare but it is possible.

[EJR]

Yes, I have had shingles twice now. The first time when I was about 40 years old. And then I had a very bad outbreak last February (I am now 64). They were on my lower back (buttocks area) and wrapped around into my abdominal/pelvic area.

I was diagnosed with gluten intolerance by Enterolab and a specialist where I live agrees with the diagnose due to positive response to the gluten free diet. The shingles occurred about a month after eating a lot of gluten as a trial around Christmas time. Is there a connection....I'm not sure? My liver enzymes were also elevated at the time. I'm still having some post-herpetic pain from the last shingles outbreak.

Joyce

[britbrighton]

There is a forum on recurring shingles and you would not believe how many people, mostly women get it year after year, sometimes month after month in their twenties and thirties. I have had rashes from Celiac and it is NOT the same. With shingles I end up in the ER with intense body pain, inner mouth blisters and neuralgia, etc..I have never had any diseases, or issues besides chicken-pox and was just tested during my outbreak and it came back positive for chicken-pox/shingles virus. I have been on the gluten-free diet for about 12 years and 15 people in my family have it so I am VERY educated on the diet and VERY careful. Gluten in any form is simply not allowed in my house, period. So I was wondering about this shingles thing because there are MANY reasons you can get immunity issues, not just HIV, but he only tested me for THAT, not any other test and certainly did not acknowledge my celiac, anxiety and depression as factors for compromised immune system... thought there may be a link to celiac disease...

[lynnelise]

My first outbreak of shingles was when I was 18 years old. After that I was good until last year when I got shingles 4 times. In less than a year. The doctor also tested me for HIV and various cancers. I was not gluten free at the time however. Once I stopped eating gluten the shingles outbreaks stopped.

I also get DH and can tell the difference because of the searing nerve pain that only a shingles sufferer could know!

As a side note my doctor recommended olive leaf extract to prevent outbreaks. Not sure if it really works but I take it daily just in case!

[LDJofDenver]

I've had shingles 4-5 times over past 5 years.

I was initially told by Dr. that you only get them once. Then after 2nd and 3rd time was told "well, that was generally speaking." Argh! Majority was pre-celiac-diagnosis, and part of the long familiar story of failing to get diagnosed by my doctor. Very frustrating. When I said something to him about getting shingles multiple times he, too, suggested testing me for HIV! God! I'm in my late 50s and with husband 25 years. Dr. was totally missing the boat, except that both involve immune system. My gosh, my body was just screaming IMMUNE SYSTEM problem!

Many doctors just aren't that knowledgeable about Celiac Disease, it's not even the last thing that comes to mind for them. Hopefully that is changing as awareness grows and more and more are being diagnosed.

Once diagnosed, it explained everything that had been happening with me over the years.

[lynnelise]

The funniest part for me was that I had been seeing my regular doctor for digestive issues, fatigue, and body aches as well as the repeated shingles outbreaks and he was all gung ho about cancer and HIV tests because of my weakened immunity...well I broke out with shingles on the weekend and had to go to a generic walk-in urgent care center and the lady there who knew nothing of my history said immunity starts in your digestive system and that she'd suggest that my regular doctor start looking into that first! That was my first clue to what the real problem was!

[LDJofDenver]

Me, too! (digestive issues, fatigue, and body aches...repeated shingles outbreaks - plus weird rashes, bruising, thin skin, ataxia, on and on).

Was not connecting the dots!

I'm just thankful that I'm diagnosed and now I know what I have. And we're lucky that what we have is treated by diet.

[Gemini]

I am new to this forum so please bear with me...I saw the other shingle post but I wondered how many people with celiac-disease have gotten shingles more than once, and at an unusual age (under 50)? I am on my third break-out at 36. My doctor was completely disinterested in the fact that I have celiac-disease and that I thought it could very well relate to my shingle out-breaks....nonetheless he threw an HIV test at me, which I am annoyed and upset about because I have been faithfully married for 15 years, besides having those tests done during my pregnancies by routine. All were negative. Nonetheless, that was his only answer for me...I am so upset, so I was wondering how many others with celiac-disease have suffered multiple recurrences of shingles...the Dr is making me feel crazy...thanks in advance...

It sounds like you have shingles and not DH as shingles will definitely be on one side only. I had one bout of shingles last year, which has not recurred. Shingles generally only happens when you become run down or the immune system is compromised...which Celiac Disease is not. However, Celiac Disease can cause you to become run down and then you could pop with shingles.

A couple of things.....my bout was caused by my thyroid going hypo again for about 6 months. I had a shift and was hyper-thyroid and then swung low, which in turn caused me to become slightly anemic. Hypo-thyroid will cause anemia. That's when I popped with shingles. It took me about 6 months to regain control of my thyroid, with a different thyroid hormone. I am no longer anemic, either.

Pregnancy will also suppress your immune system and that's why so many expectant mothers develop shingles. It is NOT unusual anymore for younger people to develop shingles. Stress, being run down....you name it, if it suppresses your immune system, shingles can occur. I was 50 years old when I had my first, and hopefully, last bout.

You may want to consider getting the vaccine for it because of the number of outbreaks. Otherwise, get tested to see if you are anemic. Having Celiac can make a person prone to anemia....just because you follow the gluten-free diet doesn't mean you

won't run into small problems now and again. That could explain the on-going outbreaks. They usually do not give the vaccine to younger people (under 62) but if you keep having the problem and no direct cause can be found, I would consider it myself.

Doctors are a pain in the butt, at times, and I limit my exposure to them. They are often clueless about autoimmune issues and do not generally think outside the box. I take responsibility for my health issues and do my own thing and it has never failed me. My PCP never looked into why I popped with shingles because they just don't. It took my homeopathic, thyroid physician to figure it out, along with my input on what was going on.

I am careful now about becoming anemic again and so far, so good. Hope you feel better because shingles totally blows. I wasn't in a lot of pain like some but the nerve issues were annoying to no end.

[erinecox]

I know this post is a few months old, but I did want to jump in and second the recurrent shingles with Celiac. I was dx'd with celiac disease 3 years ago. Within the first year of my dx, I had shingles twice... on my face... on each side. It was definitely shingles and not DH. I am googling and ran across this post because I am sitting here, quite confident that I've developed shingles on my left side. My entire side is burning, searing and aching with a few bumps popping up. The pain is identical to the bumps and sensation I had on my face... just x10. I've been beyond super stressed out for several months b/c of financial problems and have not stuck to my diet like I should, therefore I'm certain my imuune system is super depressed right now. On top of all that, I don't have health insurance right now so this is going to suck really really bad. I'm pretty sure I don't have anymore neurontin or zovarx :-(

boohiss... someone needs to do a study on herpes zoster and celiac apparently.

Erin

[Lady Sky]

I know this post is an old one but I have reoccurring shingles and have had them since 1989. I have had the first doctor shame me for having "herpes" on my arm. I have been faithful to my husband so I was horrified when he misdiagnosed me with that STD on my arm no less.

Another doctor said it was "shingles" and gave me the standard medicine for it. The medicine does not work. The lotion does, not the pill. I have "shingles" now on my palms of my hands as it has traveled. The last year I was diagnosed with Celiac Disease, which for me is a very bad autoimmune disease. If I eat any...breathe any..or get any Gluten on me in me or anywhere near me, My immune system "crashes" and I get an out break of "shingles" which now I am learning are not related to the Herpes Zoster Shingles but my body sending me a signal that my small intestines have had enough and I have been accidentally contaminated.

Hope this helps you....

Sky

[dropwiser]

My Wife has Celiac and has been on a strict diet for years now. She has had skin problems and shingles at least twice (confirmed by culture both times we are sure about). Dr called her a picker and gave her antidepressants. Finally went to a dermatologist that specializes partly in DH and celiac, and he did several tests, confirmed she DID NOT have DH, and that her skin issue was actually foliculitus. She went back last week and tested positive for shingles for the 2nd time. So don't let these people make you believe it's just DH, and ignore you because you have Celiac. More to come. I'm sure my wife will have a field day when she finds that I registered at this site. I just had the same question as the person that started this post, and was fairly frustrated by the answers which my wife has proven to be incorrect with her. Just our 2 cents.

[Gemini]

My Wife has Celiac and has been on a strict diet for years now. She has had skin problems and shingles at least twice (confirmed by culture both times we are sure about). Dr called her a picker and gave her antidepressants. Finally went to a dermatologist that specializes partly in DH and celiac, and he did several tests, confirmed she DID NOT have DH, and that her skin issue was actually foliculitus. She went back last week and tested positive for shingles for the 2nd time. So don't let these people make you believe it's just DH, and ignore you because you have Celiac. More to come. I'm sure my wife will have a field day when she finds that I registered at this site. I just had the same question as the person that started this post, and was fairly frustrated by the answers which my wife has proven to be incorrect with her. Just our 2 cents.

I am sorry to hear about your wife's suffering...shingles is no fun. I would highly recommend taking the antiviral Acyclovir for it as it helps cut way down on the length of time the outbreak occurs. However, you have to begin the antiviral within 72 hours of first break-out or it doesn't work that well. Also, use the straight up Acyclovir as it is an older anti-viral and much cheaper than the newer ones like Valtrex..... the newer ones are extremely expensive. You have to take Acyclovir 5 times per day but for the difference in cost, it was worth the effort.

You do not need a culture for shingles....any first year med student can diagnose shingles as it only ever appears on one side of your body. I knew what I had immediately and it was my first outbreak. The doctor took one look at the rash I had and confirmed MY diagnosis! She was a great doctor. I took the anti-viral immediately and it made the outbreak MUCH less painful and shorter in duration. I hope she doesn't have another outbreak!

[Maria Russell]

Please bear with me, I started having this big painful rash in my back. My sister at that time had been diagnose with shingles in 1993. She was working in Chicago with a Dr.that studied shingles. I did not go to the dr. right away, so when I went the dr. said it wasn't shingles. It was so pain and it seem like little needles were sticking in my skin. Thru out the years, I have seen so many dr. with other ailments but the rash by then had spread to my scalp and my neck and the my ears. Then POW! it hit my back and then my waist and stomach. Wierd, I keep telling myself, all this rash is in my left side only. In 2010 I was diagnose with having the celiac anitibody and RA. Then my rash really went haywire. My quality of life when to -O-. I did go gluten free, and I notice that the rash did went to mild. I have genital herpes since 1978,wonder if thathad something to do with that. The Dr. said NO!,I had a prolapse colon and incontince repair in 2010, the first work for the incontinece. SO, I opt for the PC, nerve stumilation for my bladder. Then, after three weeks of that procudure, I have gone from worse to, I NEED HELP!!! I have been prescribe Presidone for RA, so that helps. I know there is nothing to take care of my problems with shingles, but maybe this might help other people with the same problem.I have read your blogs and there is nobody with a problem like mine. Thanks,

Maria