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Shingles


EJR

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EJR Rookie

Just last week I broke out in a rash. It starts at my spine (waist level) and goes at an angle down

my buttocks and wraps around into my lower abdominal area. All of this is on the left hand side

of my body. Two doctors have confirmed that it is shingles. Apparently because of the location

it could be increasing my normal left-sided abdominal/rectal pain. Has anyone else experienced

this?

Today I finished a one week course of an anti-viral (Valacyclovir). It seems to have helped reduce

the redness and spread of the rash but the pain is not nice. Bowel movements are very painful.

I have been having some problem with this previously but seems even worse now. I have been

gluten, dairy, soy, and egg free for over a year. I am still having a lot of symptoms but this may

be because I am older (63).

I have had mildly elevated liver enzymes for about 4 months now. This may also have been caused by the shingles.

I do not have an official Celiac diagnosis but have positive results from Enterolab (IgA and

DQ8). Would really appreciate hearing from anyone who has experienced shingles in association

with Celiac / gluten intolerance. My doctor of course scared me by saying that because my liver enzymes are elevated and I have developed shingles that these are both signs of malignancy somewhere in the body. My understanding is that gluten intolerance can also be responsible for a depressed immune system and for elevated liver enzymes. My doctor is sending me to a colo-rectal surgeon for possible repeat colonoscopy and who knows what else. In our medical care system this probably won't happen for months yet.

Joyce


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ravenwoodglass Mentor

Boy doctors do like to throw the Big C in there don't they? I think it would be nice if they would hold off with this possibility until the really know what is going on. As hard as it is try not to worry about it too much.

Did you have a celiac panel done before you went gluten free? I know you mention Enterolab and they are pretty good at telling us that we are reacting to stuff. If that was the only testing you had done could you redo (or blood work) to see if gluten is sneaking in somewhere? The diet is a toughy to get used to and some of us do have to be much more careful than others and avoid items that are processed in the same plant as gluten foods and eating out can be real tricky. In addition not all companies will tell us on a label if there is a risk of CC so we can be got by items that are gluten free by ingredients but not by processing. The reason I am suggesting retesting is not because of the shingles but because you say you are still having issues and your liver enzymes are elevated. Celiac can cause that elevation in folks that are still consuming gluten. For many they go back to normal after a while gluten free.

I don't know a lot about shingles except that it is very painful. I have never heard of there being a correlation between having shingles and having undiagnosed cancer. I hope someone can give you some input on that.

EJR Rookie

Hi Ravenwoodglass,

Thank you so much for you kind and understanding reply. I'm really not too worried about the Big C. I have

been ill since Dec. 2007 when I had my gall bladder removed. This is when all of my serious digestive problems

and weight loss started. Right now I'm just trying to deal with the shingles pain and the constant gut/bowel

pain that I have had for 2 years or more now. I think I have worried so much already that now I have moved on to the acceptance phase. I just try to cope on a day to day basis and enjoy the small things in life.

Regarding the Celiac panel, in Dec 2007 I had an endoscopy and biopsy for celiac. It was negative but I had been

gluten free prior to the endoscopy for a month. The biopsy did show chronic gastritis and intestinal metaplasia in the antrum. I did not have the celiac bloodwork done at the time. In Sept. 09 I had the genetic and stool testing done by Enterolab. I had been gluten free since Dec. 07 (although I did re-introduce gluten briefly 3 or 4 times during this time period). The tests showed elevated Fecal Anti-gliadin IgA; Anti-tissue Transglutaminase IgA was negative. I haven't eaten dairy since 2005. I tested IgE allergic to soy in February of this year.

The shingles pain is ramping up today. I finished the anti-virals yesterday.

From reading on the internet the only tie-in between shingles and cancer is with Hodgkin's and non-Hodgkin's lymphoma (50% greater chance of shingles). I have no other signs of these. But apparently any condition that

depresses your immune system can lead to a break-out in shingles so I suppose the possibility is there.

Thank you again for taking the time to reply to my rather confusing query.

Joyce

Gemini Experienced

Just last week I broke out in a rash. It starts at my spine (waist level) and goes at an angle down

my buttocks and wraps around into my lower abdominal area. All of this is on the left hand side

of my body. Two doctors have confirmed that it is shingles. Apparently because of the location

it could be increasing my normal left-sided abdominal/rectal pain. Has anyone else experienced

this?

Today I finished a one week course of an anti-viral (Valacyclovir). It seems to have helped reduce

the redness and spread of the rash but the pain is not nice. Bowel movements are very painful.

I have been having some problem with this previously but seems even worse now. I have been

gluten, dairy, soy, and egg free for over a year. I am still having a lot of symptoms but this may

be because I am older (63).

I have had mildly elevated liver enzymes for about 4 months now. This may also have been caused by the shingles.

I do not have an official Celiac diagnosis but have positive results from Enterolab (IgA and

DQ8). Would really appreciate hearing from anyone who has experienced shingles in association

with Celiac / gluten intolerance. My doctor of course scared me by saying that because my liver enzymes are elevated and I have developed shingles that these are both signs of malignancy somewhere in the body. My understanding is that gluten intolerance can also be responsible for a depressed immune system and for elevated liver enzymes. My doctor is sending me to a colo-rectal surgeon for possible repeat colonoscopy and who knows what else. In our medical care system this probably won't happen for months yet.

Joyce

Hi Joyce......your doctor is a moron, if you don't mind my saying so. Shingles has absolutely zero to do with cancer and he should be slapped for saying so. Shingles occurs mainly because the chicken pox virus reactivates in your body when under stress or after having been sick. Your immune system can be depressed for many reasons other than a malignancy and this is when shingles generally strikes.

I had my first bout with shingles last September and it occurred because I had gone slightly hypothyroid, which in turn caused me to dip slightly into anemia again. I had a lot of stress in my life and wasn't paying attention to what it was doing to me. I am 50 years old. The doctor I saw for it was way younger than I am and she told me that she had a bout with shingles in med school because of all the crazy hours interns do. At the time she was in her 20's, so shingles can absolutely happen to younger people but is more common in those over 60 years old.

Your elevated liver enzymes could be from Celiac alone or other reasons not associated with cancer. The nerve pain associated with shingles is common and normal for the condition and can last for quite a while. Mine went 5 weeks and cleared up with no lingering problems. So this is normal and I wouldn't worry about it. Shingles is a jerk, in plain English, and expect to feel not up to snuff for awhile. Sorry, I wish I could have more positive news but one thing you should not worry about is cancer because I HIGHLY doubt you have a problem in that department. Have you lost any dramatic amounts of weight?

That is more of an alarm for cancer than shingles and elevated liver enzymes are.

I would seriously question anyone who wants to do a repeat colonoscopy. If you have had one and it was normal, you do not need another one done....unless you enjoy them and I would doubt that! :P My advice would be to see someone who is proficient in Celiac Disease and all the other autoimmune problems that are associated with it....like autoimmune liver disease. My liver enzymes were elevated until I went strictly gluten-free and they are always normal now. If yours stays elevated, then see a liver guy and forget the colonoscopy torture.

Hope you feel better soon.....I know how you feel!

EJR Rookie

Hi Gemini,

The description you used for my doctor seems to fit quite nicely. But perhaps she is correct, I'm not 100%

sure. I would suspect some other auto-immune disorder or liver disorder (I have 4 cysts on my liver which

they say are not something to worry about). Getting to see particular specialists here in the land of 'socialized medicine' is not very easy. You first have to convince your GP (the moron) to give you a referral.

And yes, I have had a dramatic weight loss. I went from 168 lbs. in Nov. 07 to 118 lbs. Nov.09. Since then

I have held at 117-119 lbs. I am 5'7" tall so this is quite thin. But as I mentioned I did have gall bladder surgery

(Dec.07) and have not felt well since....great difficulty eating....many, many food intolerances including wheat. Also had major problems with diarrhea for almost 2 years. I feel this is the reason for the weight loss. If I am able to eat a bit more I do start to gain weight so to me this doesn't look like weight loss associated with cancer but rather with a very disturbed digestive system and possible Celiac disease.

Regarding the colonoscopy (Jan 09), the previous surgeon stopped half-way through the procedure because he was unable to keep me sedated (my vital signs were too low to give more sedation). So half of my bowel is still suspect I suppose.

I am going to ask for a referral to an Internal Medicine Specialist here that has done extensive work in auto-immune diseases and skin disorders. I also have vitiligo and saw here about 5 years ago when that started.

My appointment letter for the General Surgeon / ColoRectal Specialist arrived. I have an appointment April 26th. I guess I will go but am not agreeing to any procedures without giving it a lot of thought.

Thank you so much for caring and taking the time to reply to me. It is very much appreciated.

Joyce

EJR Rookie

Sorry I didn't quite get the dates right regarding weight loss. Nov. 07 to Jan 09 lost 50 lbs. Holding at

117-119 since Feb. 09.

Gemini Experienced

Hi Gemini,

The description you used for my doctor seems to fit quite nicely. But perhaps she is correct, I'm not 100%

sure. I would suspect some other auto-immune disorder or liver disorder (I have 4 cysts on my liver which

they say are not something to worry about). Getting to see particular specialists here in the land of 'socialized medicine' is not very easy. You first have to convince your GP (the moron) to give you a referral.

And yes, I have had a dramatic weight loss. I went from 168 lbs. in Nov. 07 to 118 lbs. Nov.09. Since then

I have held at 117-119 lbs. I am 5'7" tall so this is quite thin. But as I mentioned I did have gall bladder surgery

(Dec.07) and have not felt well since....great difficulty eating....many, many food intolerances including wheat. Also had major problems with diarrhea for almost 2 years. I feel this is the reason for the weight loss. If I am able to eat a bit more I do start to gain weight so to me this doesn't look like weight loss associated with cancer but rather with a very disturbed digestive system and possible Celiac disease.

Regarding the colonoscopy (Jan 09), the previous surgeon stopped half-way through the procedure because he was unable to keep me sedated (my vital signs were too low to give more sedation). So half of my bowel is still suspect I suppose.

I am going to ask for a referral to an Internal Medicine Specialist here that has done extensive work in auto-immune diseases and skin disorders. I also have vitiligo and saw here about 5 years ago when that started.

My appointment letter for the General Surgeon / ColoRectal Specialist arrived. I have an appointment April 26th. I guess I will go but am not agreeing to any procedures without giving it a lot of thought.

Thank you so much for caring and taking the time to reply to me. It is very much appreciated.

Joyce

My goodness, Joyce, you have had a tough time of it! :o I am very sorry you have had to go through all this but you may be on the right track with a possible Celiac diagnosis. You have other autoimmune issues going on so that makes me suspicious with regards to Celiac Disease. They tend to go hand in hand so I really think that someone who specializes in Celiac should be your first priority. Yeah, I know, you have socialized medicine but the US may very well be forced into that boat also, after our President rammed it down out throats. It must be incredibly frustrating to have to wait for appointments but it does happen here also...if you want to see the very best of doctors. They have long waits too.

Unfortunately, once you pass the magic age of 50 (of which I did last year), they automatically think you are a cancer ball waiting to explode. Doctors tend to look there first, which can be incredibly annoying. It took you over a year to lose 50 pounds and now you are holding steady? I would think that if you had a malignancy, you would be a lot sicker by now, after a year of weight loss. Having gall bladder problems can really make eating miserable and you could also have pancreatic insufficiency, which could be contributing to your symptoms. It really sounds like a case of Celiac though....I was down to 97 pounds at time of diagnosis and would have disappeared if the problem had not been discovered.....by me, actually. I ended up having to tell the damn doctor what tests to run before I disappeared! Celiac is always the last thing they seem to look for and the most obvious.

Keep us informed of what happens with your appointments but I would tell them to run a full Celiac panel or do an endoscopy before you agree to any more colonoscopies. They make lots of money doing those so pressure people to have them. With your symptoms, it would be far more prudent to look at your stomach and small intestines than your colon again.....even half a colon again! ;) Good luck and hang in there....it will get better and I think you are on the right track with Celiac Disease.


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Gemini Experienced

Hi Gemini,

The description you used for my doctor seems to fit quite nicely. But perhaps she is correct, I'm not 100%

sure. I would suspect some other auto-immune disorder or liver disorder (I have 4 cysts on my liver which

they say are not something to worry about). Getting to see particular specialists here in the land of 'socialized medicine' is not very easy. You first have to convince your GP (the moron) to give you a referral.

And yes, I have had a dramatic weight loss. I went from 168 lbs. in Nov. 07 to 118 lbs. Nov.09. Since then

I have held at 117-119 lbs. I am 5'7" tall so this is quite thin. But as I mentioned I did have gall bladder surgery

(Dec.07) and have not felt well since....great difficulty eating....many, many food intolerances including wheat. Also had major problems with diarrhea for almost 2 years. I feel this is the reason for the weight loss. If I am able to eat a bit more I do start to gain weight so to me this doesn't look like weight loss associated with cancer but rather with a very disturbed digestive system and possible Celiac disease.

Regarding the colonoscopy (Jan 09), the previous surgeon stopped half-way through the procedure because he was unable to keep me sedated (my vital signs were too low to give more sedation). So half of my bowel is still suspect I suppose.

I am going to ask for a referral to an Internal Medicine Specialist here that has done extensive work in auto-immune diseases and skin disorders. I also have vitiligo and saw here about 5 years ago when that started.

My appointment letter for the General Surgeon / ColoRectal Specialist arrived. I have an appointment April 26th. I guess I will go but am not agreeing to any procedures without giving it a lot of thought.

Thank you so much for caring and taking the time to reply to me. It is very much appreciated.

Joyce

My goodness, Joyce, you have had a tough time of it! :o I am very sorry you have had to go through all this but you may be on the right track with a possible Celiac diagnosis. You have other autoimmune issues going on so that makes me suspicious with regards to Celiac Disease. They tend to go hand in hand so I really think that someone who specializes in Celiac should be your first priority. Yeah, I know, you have socialized medicine but the US may very well be forced into that boat also, after our President rammed it down out throats. It must be incredibly frustrating to have to wait for appointments but it does happen here also...if you want to see the very best of doctors. They have long waits too.

Unfortunately, once you pass the magic age of 50 (of which I did last year), they automatically think you are a cancer ball waiting to explode. Doctors tend to look there first, which can be incredibly annoying. It took you over a year to lose 50 pounds and now you are holding steady? I would think that if you had a malignancy, you would be a lot sicker by now, after a year of weight loss. Having gall bladder problems can really make eating miserable and you could also have pancreatic insufficiency, which could be contributing to your symptoms. It really sounds like a case of Celiac though....I was down to 97 pounds at time of diagnosis and would have disappeared if the problem had not been discovered.....by me, actually. I ended up having to tell the damn doctor what tests to run before I disappeared! Celiac is always the last thing they seem to look for and the most obvious.

Keep us informed of what happens with your appointments but I would tell them to run a full Celiac panel or do an endoscopy before you agree to any more colonoscopies. They make lots of money doing those so pressure people to have them. With your symptoms, it would be far more prudent to look at your stomach and small intestines than your colon again.....even half a colon again! ;) Good luck and hang in there....it will get better and I think you are on the right track with Celiac Disease.

lynnelise Apprentice

I had shingles for the first time when I was 18. This past year at 31 I had 4 outbreaks of shingles. In fact that is how I figured out that gluten was a problem for me. The doctor told me that repeated outbreaks were probably due to cancer, AIDs, or Hepatitis. Needless to say I was in a terrible panic. I got tested for everything under the sun (except celiac). I was desperate so my cousin had the GI doc she works for review my medical records and he said to stop eating gluten and see what happens. I've not had another outbreak since. I would suspect that your immune system is just very low due to damage caused by gluten and your gallbladder issues. Try taking olive leaf extract. It helps fight the shingles virus.

Gemini Experienced

I had shingles for the first time when I was 18. This past year at 31 I had 4 outbreaks of shingles. In fact that is how I figured out that gluten was a problem for me. The doctor told me that repeated outbreaks were probably due to cancer, AIDs, or Hepatitis. Needless to say I was in a terrible panic. I got tested for everything under the sun (except celiac). I was desperate so my cousin had the GI doc she works for review my medical records and he said to stop eating gluten and see what happens. I've not had another outbreak since. I would suspect that your immune system is just very low due to damage caused by gluten and your gallbladder issues. Try taking olive leaf extract. It helps fight the shingles virus.

Yup....that's what I mean. They are so focused on cancer these days that they overlook the most obvious thing.....a food issue. Meanwhile, they panic the hell out of people for no good reason.

Shingles can often happen when you become iron deficient as your body just cannot keep up with stress and being so run down. That's what bagged me. I've learned my lesson and pay more attention because I NEVER want to have shingles again. The rash wasn't so bad for me but the nerve tingling and aggravation was not fun. It's like being tasered on a regular basis. :o

Generic Apprentice

My daughter had shingles when she was 10 years old. The Dr. blamed it on stress. I really don't think she had the kind of stress that would trigger an outbreak. Her pediatrician had never seen any kids with shingles. And they didn't make a child size pill back then, so she had to take a horse pill for even an adult. She really was in pain even though they were giving liquid vicodin. No one ever considered Celiac. She still isn;t diagnosed officially but follows a gluten-free diet voluntarily since she gets so sick from it.

As for your health problems from your gallbladder being removed, I also had it set off a sleugh of health problems. Have you looked into problems with your pancreas or possibly spincter of oddi disfunction, if you continued to have pain? Lets compare notes. BTW I have been gluten-free for 22 years.

still tiredofdoctors Rookie

Hi Joyce,

I agree with Gemini -- your doctor is a moron. Shingles is EXACTLY that -- re-emergence of the herpes virus that causes chicken pox. I had re-emergence last year of mononucleosis (only having found out months before because of a titre done that I had actually HAD mononucleosis in the past) when I was changed from IV Rocephin to IV Doxycyclene due to Lyme, three other tick diseases and mycotoxicosis from toxic mold in our former house.

Any time your immune system is compromised, the herpes virus takes advantage and rears its ugly head.

As far as your antibodies? I have Neurogenic Celiac -- it affects ONLY my cerebellum -- and I have only elevated antigliadin antibodies. My endoscopy showed quite a bit of inflammation in my stomach, but my intestinal villi were pink and healthy.

My daughter had cysts on her liver -- they were attributed to autoimmune hepatitis. This was when she also tested positive for antigliadin antibodies.

Even in the states, it is incredibly difficult to find a competent physician. Don't give up, and hang tough -- demand that you be heard. Eventually you will be, and you will find a physician who will give you the correct diagnosis and treatment. Best of luck to you.

(((((hugs)))))

Lynne

kayo Explorer

I had shingles as a kid too and there were no meds and they didn't give me pain killers either. My mother insisted on scrubbing it with a wash cloth until it bled, convinced I was dirty. :o I still have the scars. I also had shingles in my teens and 20's but nothing, knock on wood, in a long time. Looking back I definitely think some of my shingles were actually dh but no one caught it. I have RA so there are times when my immune system just crashes, this is when a shingles outbreak is likely to happen. Like others have said it's the re-emergence of the herpes virus caused by chicken pox. Once you get shingles you're more susceptible of getting it again, typically along the same path of nerves it appeared before. For me it's my jawline, under arms and tailbone/butt crack ;) Now that makes for an interesting doc appointment!

  • 3 weeks later...
Kathy59 Rookie

You might want to get a complete blood panel completed to see if anyother viruses are active in your body...my neuro did that right off including celiac..wasn't positive for celiac, but every virus I had ever been exposed to was active: Epstein Barr Virus, Herpes Virus, Varcilla Foster Virus (chicken pox)and Mono.

All of these active viruses were attacking my nerves causing severe nerve pain (which I still have-sometimes not so bad sometimes very painful).

I had already had a colonoscopy and endiscopy (spelling), but it was to check if there was a reason I was not absorbing B12 (I was very deficient; imagine that).

At my Jan appt, I told the neuro, I was feeling better, but still had the chronic D..so bad, I was afraid to leave the house. He reviewed my bloodwork and stated that even though I tested negative to celiac he wanted to do genetic testing..guess what...I have the genes.

So currently my Dx is Celiac Disease, Mono, Chronic Fatigue Syndrome, Neuropathy. I have been gluten free since Feb 1. Take Acyclovir 3 times a day along with a host of other Rxs and supplements.

I am slowly getting better; just a shame I lost my job in the process-but it was high stress and not beneficial to getting my health back.

I agree with a lot of people on this site...I don't think anyone should eat gluten!!!

  • 3 months later...
bradsworld Newbie

Just last week I broke out in a rash. It starts at my spine (waist level) and goes at an angle down

my buttocks and wraps around into my lower abdominal area. All of this is on the left hand side

of my body. Two doctors have confirmed that it is shingles. Apparently because of the location

it could be increasing my normal left-sided abdominal/rectal pain. Has anyone else experienced

this?

Today I finished a one week course of an anti-viral (Valacyclovir). It seems to have helped reduce

the redness and spread of the rash but the pain is not nice. Bowel movements are very painful.

I have been having some problem with this previously but seems even worse now. I have been

gluten, dairy, soy, and egg free for over a year. I am still having a lot of symptoms but this may

be because I am older (63).

I have had mildly elevated liver enzymes for about 4 months now. This may also have been caused by the shingles.

I do not have an official Celiac diagnosis but have positive results from Enterolab (IgA and

DQ8). Would really appreciate hearing from anyone who has experienced shingles in association

with Celiac / gluten intolerance. My doctor of course scared me by saying that because my liver enzymes are elevated and I have developed shingles that these are both signs of malignancy somewhere in the body. My understanding is that gluten intolerance can also be responsible for a depressed immune system and for elevated liver enzymes. My doctor is sending me to a colo-rectal surgeon for possible repeat colonoscopy and who knows what else. In our medical care system this probably won't happen for months yet.

Joyce

I had to join this site because i could relate so much. i am 40 years old and have had shingles at least 10 times.I am still suffering nerve pain from the cast i had last year. The Dr. told basiclly the same thing as you. I had a colonoscopy and many many test. I have had the suspicion that i have an intolerance to gluten for many years. I use to get really dizzy and light headed after eating and it just took me years to figure out that is was almost always after eating wheat products. I was dx'd 8 years ago with menieres but i now know that is not the case. I have never took my diet serious so in the times i have gone gluten free i have not had shingles. I am glad i took the time to register for this site

  • 1 month later...
BStrong23 Newbie

Just last week I broke out in a rash. It starts at my spine (waist level) and goes at an angle down

my buttocks and wraps around into my lower abdominal area. All of this is on the left hand side

of my body. Two doctors have confirmed that it is shingles. Apparently because of the location

it could be increasing my normal left-sided abdominal/rectal pain. Has anyone else experienced

this?

Today I finished a one week course of an anti-viral (Valacyclovir). It seems to have helped reduce

the redness and spread of the rash but the pain is not nice. Bowel movements are very painful.

I have been having some problem with this previously but seems even worse now. I have been

gluten, dairy, soy, and egg free for over a year. I am still having a lot of symptoms but this may

be because I am older (63).

I have had mildly elevated liver enzymes for about 4 months now. This may also have been caused by the shingles.

I do not have an official Celiac diagnosis but have positive results from Enterolab (IgA and

DQ8). Would really appreciate hearing from anyone who has experienced shingles in association

with Celiac / gluten intolerance. My doctor of course scared me by saying that because my liver enzymes are elevated and I have developed shingles that these are both signs of malignancy somewhere in the body. My understanding is that gluten intolerance can also be responsible for a depressed immune system and for elevated liver enzymes. My doctor is sending me to a colo-rectal surgeon for possible repeat colonoscopy and who knows what else. In our medical care system this probably won't happen for months yet.

Joyce

Hi I found your post while searching the net to see if anyone has had shingles and celiac - looking for what I don't know. It just struck me that you have had to cut out alot of the same foods as me, dairy, eggs, soy, - and you said you had elevated liver tests; me too. I also have had to cut out tomatoes - what's left to eat?!

I am roughly half your age and I just was diagnosed with shingles yesterday. I am deprived of all foods because I am also nursing a seriously colicky baby. I have found that I can drink Kefir which is high in probiotics and is 99% lactose free.

I really really hope you are cancer free and feeling a lot better. This bowel stuff is for the toilet let me tell you!

Anyway, I just wanted to see how you recovered from the shingles. And also if there ended up being any link to the liver tests.

rosetapper23 Explorer

I'm not going to comment on the cancer possibility (which I've never heard of--and I have studied shingles and herpes viruses for many years). However, I WOULD like to advise you to begin taking L-Lysine on a daily basis (at least 2,000 mgs daily) because studies have shown that it cuts recurrence of herpes-related infections (and shingles is part of that class) by 99.9%. When L-Lysine is high in the body and L-Arginine is low, the imbalance keeps the herpes virus from raising its ugly head. So...take L-Lysine and stop taking L-Arginine (if you're taking it, which you didn't mention, so I assume you aren't). Hopefully, you won't ever get another shingles attack again.

Oddly enough, a number of my acquaintances with celiac in the past year or two have suffered from shingles. I don't know if there's a connection; it's simply an observation. My research over the years has led me to believe that there are many forms of herpes viruses--as yet unidentified--that trigger shingles and various forms of MS. With shingles, you must have had chicken pox in the past, and then you must be exposed to the virus that is circulating in the population that triggers shingles. As for the herpes viruses that cause MS and Lou Gehrig's Disease, they feel like regular viruses (coughing, runny nose, muscles aches, fever, etc.), but they also include an element of neuro involvement in that heat and flashes of "electrical" pain are felt in the extremities. It's fine if you catch it only once or many years apart, but if you catch this particular herpes virus twice in a short period of time, the protein in its DNA strand that mimics the protein in the DNA strand that protects our myelin sheath will be destroyed by your own immune system because it will recognize the virus as a recent intruder to be fought off. Eight years ago, five people I knew well contracted either MS or Lou Gehrig's disease within months of each other following symptoms of this particular type of "flu" virus." Of course, this is a theory based on many years of research and personal observation....so you won't find it easily in a Net search. I'm sharing it here because I'd like to emphasize that taking L-Lysine is extremely important if you wish to avoid both shingles and MS (and, no, I'm not saying that if you have shingles, you'll get MS--one has nothing to do with the other since they involve different types of herpes viruses).

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    • knitty kitty
      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
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