[blueeyedvegan]

I have not been diagnosed w/ Celiac disease at this time.

I began getting blisters when I was twenty-five years old and they continued for 16 years. I thought it was because I contracted chicken pox when my son was around 8 years old. I thought the blisters were shingles. They began on my leg just a single blister that was blood red. Then they moved to to the inside of my right elbow. The blisters were a cluster of blisters that grew on top of one another until it became on solid blister the size of a quarter I would have to wait until the blister became this size to release the fluid from it. It became red and inflammed around the blister w/ red lines that spreading out from the blister (almost like a spider bite). Eventually the blisters would travel along different sites on the right side of my body. Always with excruciating sharp pains in the elbow and shooting down the arm.

The more I read about celiac disease I wonder if this was the result of gluten in my diet. This year the blisters have stopped and have not returned. My diet consists of vegetables and fruit without gluten in my diet. I am very allergic to soy. If I eat the smallest amount of soy I have night sweats and inflammation throughout my body. On a vegan diet I am losing weight, the inflammation in my intestines are going away

Has anyone experienced the blisters I have discribed above? If so, I know I am on the right track.

Thank you for your help.
Blue Eyed Vegan

[Wolicki]

blueeyedvegan, on Oct 13 2009, 07:12 PM, said:

I have not been diagnosed w/ Celiac disease at this time.

I began getting blisters when I was twenty-five years old and they continued for 16 years. I thought it was because I contracted chicken pox when my son was around 8 years old. I thought the blisters were shingles. They began on my leg just a single blister that was blood red. Then they moved to to the inside of my right elbow. The blisters were a cluster of blisters that grew on top of one another until it became on solid blister the size of a quarter I would have to wait until the blister became this size to release the fluid from it. It became red and inflammed around the blister w/ red lines that spreading out from the blister (almost like a spider bite). Eventually the blisters would travel along different sites on the right side of my body. Always with excruciating sharp pains in the elbow and shooting down the arm.

The more I read about celiac disease I wonder if this was the result of gluten in my diet. This year the blisters have stopped and have not returned. My diet consists of vegetables and fruit without gluten in my diet. I am very allergic to soy. If I eat the smallest amount of soy I have night sweats and inflammation throughout my body. On a vegan diet I am losing weight, the inflammation in my intestines are going away

Has anyone experienced the blisters I have discribed above? If so, I know I am on the right track.

Thank you for your help.
Blue Eyed Vegan

I am pretty sure that Shingles is just chicken pox revisited. The virus lives in your system and sometimes pops up again as Shingles. Here's a link to an article on DH, and is has pictures. Is this what your rash looks like?
http://www.aafp.org/...ap/pruessn.html

[jststric]

I read something not too long ago that possibly linked shingles with at Celiacs...or at least gluten-intolerance. I can't recall now for the life of me where I saw it or what exactly it said, I just remember thinking about my brother-in-law that had a horrible bout of shingles when he was younger. It IS related to chicken-pox and I don't know how they would make the jump from chicken-pox to Celiacs, but I did read something about shingles. If you find out, let us know!!

[ravenwoodglass]

Did they actually diagnose you with shingles? This sounds like it could be DH. The gluten free diet wouldn't have any effect on shingles, AFAIK, but it would have a postive effect on DH.

[blueeyedvegan]

Thank you for your replies it was definitely shingles. They have stopped since I have become vegan and cut the wheat and gluten from my diet.

Blue Eyed Vegan

[nb-canada]

I have had Shingles 7 times in 18 years. When I get them I usually get them twice in a year about 4 months apart. But in the last year I had them 3 times in a nine month period. I have been gluten free for 19 months. So, I had them more often since going gluten free.

You cannot get Shingles if you have never had Chicken Pox sometime in your past. The virus stays dormant in you body. The older you get the more apt you are to get Shingles. It is believed that an autoimmune disease (like Celaic) can lower your immunity and make you susceptible to Shingles. Stress is also believed to be a factor. You cannot catch Shingles but if you have never had Chicken Pox you can get it if you come in contact with the fluid from the Shingles.

The one symptom of Celiac that I still have is fatique so that could be why I had them so many times in the last year. But they aslo tell me that the older you get the more often you can get them. I took an extra months supply of meds this last time to try to keep it away. Hopefully it works!

I have always had my Shingles in the same spot on my neck. It starts as a red mark which looks like a pimple. I get a picky feeling in that area and as the day goes on there is nerve pain. The last time I had them I had 5 lesions within 12 hours of noticing the red mark. The blisters had also started by that time. Within a day or so the blister breaks and the fluid drains. Then a scab forms. The shingles follow a nerve ending. The pain follows the nerves also. Once the pain followed the nerve to my ear causing earaches which I had never had previously. Another time the pain ran down my arm and then another time into my breast. There is also itchiness. I think that the tiredness is the worse. I am tryng to get some energy back now that I am gluten free but getting the shingles puts me right back to square one. I have noticed that a day or so before I get the shingles I get so tired that I just what to cry....just sit down and bawl....not fun!

I have always received medication within 72 hours so it stops it from spreading. Sometimes I wonder if that is why I keep getting them - maybe I should let it run its course. But since it is so close to my face it is dangerous that it may spread to my eye and cause blindness.

"Blueeyedvegan" - did you get medication for your shingles? How many times have you had them?
Are they itchy?

I have had them so many times that I have even diagnosed them on other people a couple of times and advised them to see a doctor.

Take care

[LDJofDenver]

I think a lot of celiacs get/have had shingles multiple times (had them 5 or 6 times myself).

It make sense in that they occur when your immune system is in the toilet, and celiac disease is an autoimmune disorder. Our immune system is already stressed. Diabetics often have higher risk of getting shingles for the same reason.

You can have shingles one time, however, and dermatitis herpetiformis next time around -- the elbow incident sounds like a pretty common DH site (I once had DH on both my knees, thought it was hives at first).

[blueeyedvegan]

I have never been diagnosed for shingles. Every time I had a breakout I would make an appointment to see the doctor and explain the blisters. By the time the appt. arrived the blisters disappeared they ran a battery of tests on me and my pituitary gland was over active. They thought I had breast cancer or a brain tumor. That was 10 years ago and I have neither. I have had shingles for every month for 16 years - sometimes twice in a month. All of your emails are very comforting because when you bring up shingles to an outsider that don't even want to shake your hand. If it is celiac disease I would find comfort in knowing. It's strange my body has always been extremely hot not to the point that I sweat but like a furnace. I always contributed it to having a high metabolism. Here's a list of health problems if someone has experienced these as a celiac please let me know.
Cluster migraines, shingles, very hot body, extreme depression, extreme weight loss, discoloration of nails, peeling of layers of nails and loss of toenails. The past two years I have experienced night sweats, inflammation, intestinal inflammation, rapid weigh gain. I have issues w/ the following foods: Soy foremost, synthetic estrogens, estrogens from meat, shellfish, fish, all dairy, wheat/gluten. I eat only fruits and vegetables and read all labels.

Fore those of you experiencing shingles you may find comfort doing this - I let hot water run over the site to ease the pain and itching and then I used carmex. The carmex brings great comfort. Carefully watch your sodium intact.

Thanks again!
Blue Eyed Vegan

[Gemini]

blueeyedvegan, on Oct 16 2009, 10:24 AM, said:

I have never been diagnosed for shingles. Every time I had a breakout I would make an appointment to see the doctor and explain the blisters. By the time the appt. arrived the blisters disappeared they ran a battery of tests on me and my pituitary gland was over active. They thought I had breast cancer or a brain tumor. That was 10 years ago and I have neither. I have had shingles for every month for 16 years - sometimes twice in a month. All of your emails are very comforting because when you bring up shingles to an outsider that don't even want to shake your hand. If it is celiac disease I would find comfort in knowing. It's strange my body has always been extremely hot not to the point that I sweat but like a furnace. I always contributed it to having a high metabolism. Here's a list of health problems if someone has experienced these as a celiac please let me know.
Cluster migraines, shingles, very hot body, extreme depression, extreme weight loss, discoloration of nails, peeling of layers of nails and loss of toenails. The past two years I have experienced night sweats, inflammation, intestinal inflammation, rapid weigh gain. I have issues w/ the following foods: Soy foremost, synthetic estrogens, estrogens from meat, shellfish, fish, all dairy, wheat/gluten. I eat only fruits and vegetables and read all labels.

Fore those of you experiencing shingles you may find comfort doing this - I let hot water run over the site to ease the pain and itching and then I used carmex. The carmex brings great comfort. Carefully watch your sodium intact.

Thanks again!
Blue Eyed Vegan

This does not sound like shingles at all and I would suspect another problem. Shingles takes about 4-8 weeks to go away, on average, depending upon the severity of the case. If the rash is going away faster than you can have a doctor look at and diagnose it as such, then it isn't shingles.

You also would not be able to run hot water over a shingles rash....the ensuing nerve pain and burning would prohibit that.....trust me, I know. You also do not have shingles all the time. It's a virus and will start out strong and slowly get better and better. You would not be having new outbreaks all the time unless you have no immune system left.

Shingles is not a symptom of Celiac disease but a person with Celiac, in recovery and not healed or run down in general, is more likely to pop with shingles. You only get shingles if your immune system is compromised or you are run down....burning the candle at both ends, so to speak. You also have to have had the chicken pox in order to get shingles. It's a re-visit from the same virus. It is only contagious to people who have never had chicken pox and they would have to come in contact with the fluid from one of the blisters.....which does sound gross but that's how it works.

Sounds like a DH outbreak or food related issue, from your symptoms. I hope you are able to get to the root cause of your problems!

[Fiddle-Faddle]

I wouldn't be so quick to rule out the likelihood that it is shingles, as there are ALWAYS exceptions to every rule as far as diseases go! 99% might get typical shingles--and one person might have an immune system gone kaflooie, with ensuing shingles episodes that break all previous "rules."

I wonder if vitamin deficiencies might be playing a role in the recurring episodes? If you have celiac, that greatly increases the likelihood that you either have or have had some major deficiencies going on (due to malabsorption), and if you are vegan, then you are at much greater risk of B12 deficiency. Double whammy!

I'm wondering if your episodes clear up due to either your eating things that might be helping you fight off the herpes zoster virus, or if you are getting more sunshine during the times that you are better (the vitamin D you synthesize from the sun helps fight viruses).

There is an amino acid called L-Lysine that is supposed to be very effective against all herpes viruses (and shingles/chicken pox is the herpes zoster virus): http://www.advance-h...sineherpes.html. You might try that to see if that helps.

[nb-canada]

Gemini, on Oct 16 2009, 12:19 PM, said:

This does not sound like shingles at all and I would suspect another problem. Shingles takes about 4-8 weeks to go away, on average, depending upon the severity of the case. If the rash is going away faster than you can have a doctor look at and diagnose it as such, then it isn't shingles.

You also would not be able to run hot water over a shingles rash....the ensuing nerve pain and burning would prohibit that.....trust me, I know. You also do not have shingles all the time. It's a virus and will start out strong and slowly get better and better. You would not be having new outbreaks all the time unless you have no immune system left.

Shingles is not a symptom of Celiac disease but a person with Celiac, in recovery and not healed or run down in general, is more likely to pop with shingles. You only get shingles if your immune system is compromised or you are run down....burning the candle at both ends, so to speak. You also have to have had the chicken pox in order to get shingles. It's a re-visit from the same virus. It is only contagious to people who have never had chicken pox and they would have to come in contact with the fluid from one of the blisters.....which does sound gross but that's how it works.

Sounds like a DH outbreak or food related issue, from your symptoms. I hope you are able to get to the root cause of your problems!

I agree with Gemini - it doesn't sound like shingles to me. The closest I've had mine is 4 months apart. For instance the last episode was August 24 and I still have a red mark where the shingles were. It is fading but still very noticeable. In fact the previous episode was in March and you could still see a faint mark in August. You also still get the occasional nerve pain for awhile after the shingle itself is gone.

As for DH, I am not sure it would be that either. My son gets breakouts when accidentally glutened. It then takes quite a few weeks for the rash to go away and it usually leaves scarring. It also seems to come on both sides of the body at the same time. I always get my shingles in the same location on one side of the body.

One doctor (he actually did not see my shingles) suggested to me that it could not have been shingles that many times - maybe it was Herpes Simplex (a cold sore). Maybe that is what you get - if you can get cold sores on your body. If you did not get medication for the shingles I don't think it would go away that fast - it would continue to spread for at least a week then go through the stages of draining, drying up, scabs, etc. My mum's shingles lasted a long time because in those days there was no medication for them and she really suffered. But, she only got them once.

I would suggest that the next time you get this blister that you see a doctor within the first 72 hours and then hopefully they can diagnose it.

Good luck on getting this resolved.

[Skye_N]

To me, it sounds more like DH, but I am not an expert on any of this. My DH has always been more like acne/cysts on my arms and sometimes blisters with itching. I've had it as long as I can remember, until I quit eating gluten. It always comes back with even the slightest bit of gluten. I have 2 other celiac friends who's DH looks totally different: one is more rash like and the other gets huge, oozing, open wounds. Mine always goes away in about a week but my arms are pretty scarred up after years of breakouts.

Do you think that there could be something in your lotion?

I've been vegetarian for most of my life and was vegan for a while too. I got so paranoid about everything that I ate because I was so sick to my stomach from anything that was hard to digest. Now that my stomach has healed, I don't seem to have any problems when I eat. My "alternative doctor" who has celiac's has been making me eat more foods and gives me different supplements periodically and I always feel better with every time I see her. Perhaps you are still suffering the effects of malnutrition even though you have cut out the culprits. I say this because you have so many of the same symptoms that I used to have. For example, my adrenal glands were totally "out of whack" which was affecting other organs.

I hope that you start feeling better soon.

[blueeyedvegan]

Skye_N, on Oct 20 2009, 04:09 PM, said:

To me, it sounds more like DH, but I am not an expert on any of this. My DH has always been more like acne/cysts on my arms and sometimes blisters with itching. I've had it as long as I can remember, until I quit eating gluten. It always comes back with even the slightest bit of gluten. I have 2 other celiac friends who's DH looks totally different: one is more rash like and the other gets huge, oozing, open wounds. Mine always goes away in about a week but my arms are pretty scarred up after years of breakouts.

Do you think that there could be something in your lotion?

I've been vegetarian for most of my life and was vegan for a while too. I got so paranoid about everything that I ate because I was so sick to my stomach from anything that was hard to digest. Now that my stomach has healed, I don't seem to have any problems when I eat. My "alternative doctor" who has celiac's has been making me eat more foods and gives me different supplements periodically and I always feel better with every time I see her. Perhaps you are still suffering the effects of malnutrition even though you have cut out the culprits. I say this because you have so many of the same symptoms that I used to have. For example, my adrenal glands were totally "out of whack" which was affecting other organs.

I hope that you start feeling better soon.

[blueeyedvegan]

Thank you for replying. Your message describes exactly what I believe I am experiencing. I have also cut everything out of my diet. I am sitting at my work station wondering where I can possibly go for lunch....and there's no where. I figure eventually I can begin to introduce foods back into my diet. I was a vegetarian and then became a vegan and then I removed the gluten/wheat from my diet. I was improving on the vegan diet but when I removed the wheat/gluten the inflammation is going away. I also do not get as depressed anymore. I know the depression deals with malabsorbtion and that's improving. I just hope there will come a day I can introduce foods back into my diet. I recently threw away toothpaste, lotions, makeup containing soy and gluten and feel better. After reading all labels I realized how much of the soy and gluten I was absorbing through my skin.

Thank you
Blue Eyed Vegan

[Gemini]

blueeyedvegan, on Oct 21 2009, 01:44 PM, said:

Thank you for replying. Your message describes exactly what I believe I am experiencing. I have also cut everything out of my diet. I am sitting at my work station wondering where I can possibly go for lunch....and there's no where. I figure eventually I can begin to introduce foods back into my diet. I was a vegetarian and then became a vegan and then I removed the gluten/wheat from my diet. I was improving on the vegan diet but when I removed the wheat/gluten the inflammation is going away. I also do not get as depressed anymore. I know the depression deals with malabsorbtion and that's improving. I just hope there will come a day I can introduce foods back into my diet. I recently threw away toothpaste, lotions, makeup containing soy and gluten and feel better. After reading all labels I realized how much of the soy and gluten I was absorbing through my skin.

Thank you
Blue Eyed Vegan

Gluten cannot be absorbed through your skin. The molecule is too large. You would have to be ingesting it through your mouth, nose or eyes, in large enough amounts, to spark an autoimmune reaction. Many people also have a topical wheat allergy, which is an entirely different animal than a Celiac reaction. If you are reacting on your skin, it's either a topical reaction (wheat allergy) or you are being glutened as mentioned above and are having a DH outbreak.

According to the most prominent Celiac researchers and doctors, even people with DH can physically touch wheat and not have a reaction causing DH.
You have to ingest gluten for that to happen and it can take months for a DH outbreak to calm down and go away. This is why so many are confused about the cause of a DH rash......it can be from something you ate weeks ago.

I would recommend reading Dr. Peter Green's book called Celiac Disease: A Hidden Epidemic. It goes into detail about Celiac reactions and what is true and what is myth. An excellent read!