20 replies to this topic

[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.