Celiac And Shingle Vacine

[Coltsneck24]

On 6/23/2008 at 2:44 PM, wakefield said:

Sorry, I am still new at this and quess I have finally figured out that I have to press add reply to respond. Hope this works.

Anyway, my Father had shingles several years ago--there is a drug that you can take if you catch it within hours that really helps with the disease but it is still miserable and very painful. I have had friends with it and they have suffered for over a year. If cloths touch the spot with the shingle outbreak it is unbearable!! So that is why I am interested in the vacine even though it is a couple hundred dollars. I was concerned as Celiac is autoimmune and therefore more likely to "catch" things that are going around.

I have Celiac Disease and have primarily GI symptoms. But, I also have chronic skin itching, mostly along my spine and back.

I had a shingles vaccine about 8 years ago and had a very bad but localized reaction at the injection site.  Fast forward to 2019 with the introduction of the two part Shingrix vaccine. I had an even worse, but still localized, reaction which lasted three weeks. My doctor felt it was an allergic reaction and advised that I not get the second shot as he was concerned that I could have an anaphylactic reaction. I really don’t want to develop shingles (who does?) but I think I will take his advice.  That said, I would jump at the opportunity to avoid shingles and would advise people to stick with the science and avoid the rhetoric posted by the anti-vaxxers. Look at what’s happening now in our country with multiple measles outbreaks nationally after being measles-free for several generations due to mandatory vaccination of school children. 

[squirmingitch]

@Pauline12 and @Coltsneck24 You guys are replying to people who were on here in 2008. They have moved on & haven't posted here in years & years. Having said that, I will post about my experience with shingles vaccine.

I have dh, my hubby does also. I know, weird right? It happens. Once one knows the symptoms, one is able to recognize symptoms in others. We both got the Zostavax shingles vaccine 5 years ago & had no negative or side effects at all. We plan on getting the Shingrix since it is more effective. We haven't gotten it yet b/c of the shortage of the vaccine. We'll see how availability looks this fall.

[Coltsneck24]

Sorry. Thanks for letting me know. Next time i’ll Check the dates. 

[squirmingitch]

It's easy to make that mistake. I've certainly done it before.

[BuddyBoy]

On 4/7/2019 at 9:04 AM, Coltsneck24 said:

I have Celiac Disease and have primarily GI symptoms. But, I also have chronic skin itching, mostly along my spine and back.

I had a shingles vaccine about 8 years ago and had a very bad but localized reaction at the injection site.  Fast forward to 2019 with the introduction of the two part Shingrix vaccine. I had an even worse, but still localized, reaction which lasted three weeks. My doctor felt it was an allergic reaction and advised that I not get the second shot as he was concerned that I could have an anaphylactic reaction. I really don’t want to develop shingles (who does?) but I think I will take his advice.  That said, I would jump at the opportunity to avoid shingles and would advise people to stick with the science and avoid the rhetoric posted by the anti-vaxxers. Look at what’s happening now in our country with multiple measles outbreaks nationally after being measles-free for several generations due to mandatory vaccination of school children. 

I have Celiac Sprue, diagnosed in 2004. I have a horrific reactions to products containing gluten, mostly itchy blisters/sores that cover my head - scalp and face and fatigue. As hard as I try to steer clear of gluten it's not always easy. Case in point the Shingrix vaccine. I just had the two round vaccine and it was the worst decision I've ever made, next to accidental exposure to wheat product. The first round vaccine was not only painful for several days at the injection site, it has a laundry list of reactions (my reactions here): fatigue, headache, body aches, and a major breakout of large itchy blisters. Clearly a reaction to the vaccine. I dreaded the second vaccine and considered not getting it but I've had shingles before (on my lower lumbar area) which wasn't terrible but certainly I could get it again, magnified. So after the second vaccine (which I had read has a more severe allergic reaction) I am miserable. My entire scalp, ears, fingers, knees, buttocks, elbows, face, eyelids, and neck are reacting to the injection. My whole head is literally covered with blisters and scabs. The Shingrix vaccine should have a warning notice for those with Celiac Sprue Disease. I'm still recovering and it's VERY uncomfortable. When is the CDC going to wakeup and provide thorough information on possible allergic reactions to drug products? This product has been on the market for a few years now and still, nothing is provided regarding Celiac Sprue and possible allergic reaction that is potentially harmful.

[trents]

BuddyBoy, welcome to the forum!

How can you be sure that your reaction to the vaccination is related to your having celiac disease? Non-celiacs also sometimes have reactions like that to various kinds of vaccines.

Edited August 16, 2022 by trents

[plumbago]

I too have Celiac and I too received the Shingrix vaccine last year (thankfully) - ETA: 2nd shot actually in March of 2022. But I have never had shingles.

My reaction after the 2nd Shingrix was typically strong in terms of headache, myalgia, some nausea, slight fever. All of which was to be expected, but unpleasant. What you are talking about sounds different, and I'm not sure if you will be able to get the help you need from this site. Considering you had a somewhat unusual reaction after Shingrix #1, you probably should have talked to your doctor about it and gotten guidance on the 2nd shot. Your reaction after shot #2 is indeed unusual and very strong - please do talk to your doctor or the person who gave you the shot. It seems you need medical advice in this case.

Plumbago

Edited August 16, 2022 by plumbago

[Scott Adams]

There are always risks and side-effect associated with vaccines, but I can assure you that everything I've read here so far pales in comparison to getting shingles! I had a shingles outbreak at age ~45 which started in the area near my right temple, and proceeded from there behind my right ear to the top of my head, so basically the right side of my head. It lasted 10 days, and the best way I can describe it is that it felt as if someone had sprayed lighter fluid that area, lit it on fire, let it burn for 60 seconds or so, then put it out. In other words if felt just like the worst burn you can imagine, and sleep was nearly impossible. Pain killers did not do very much to ease the pain. I did go to the doctor on the very first day, got diagnosed, and was put on an anti-viral medication.

Interestingly I had a strange electrical tingling sensation that shot up the same nerves on the right side of my head for many years before this outbreak, which I always thought was a pinched nerve in my neck or something, but I was wrong--it was a shingles warning sign.

In any case, my insurance company would not cover the vaccine until I turned 50, but after arguing back and forth for a year or so I finally got the newer double vaccine with is over 90% effective at eliminating outbreaks. I will admit that I had no issues with the vaccine, but I can say that I would not wish actual shingles on anyone--it was the most painful thing I've ever experienced, and I've had several broken bones, acute appendicitis (nothing compared with shingles), etc. 

 

[BuddyBoy]

3 hours ago, plumbago said:

I too have Celiac and I too received the Shingrix vaccine last year (thankfully) - ETA: 2nd shot actually in March of 2022. But I have never had shingles.

My reaction after the 2nd Shingrix was typically strong in terms of headache, myalgia, some nausea, slight fever. All of which was to be expected, but unpleasant. What you are talking about sounds different, and I'm not sure if you will be able to get the help you need from this site. Considering you had a somewhat unusual reaction after Shingrix #1, you probably should have talked to your doctor about it and gotten guidance on the 2nd shot. Your reaction after shot #2 is indeed unusual and very strong - please do talk to your doctor or the person who gave you the shot. It seems you need medical advice in this case.

Plumbago

I spoke to both my doctor and the pharmacist. Both agreed that it was a reaction to the vaccine. The first vaccine triggered a response that was identical to duhring disease, dermatitis herpetiformis. My second vaccine which I'm struggling with at the moment has the same reaction with less severe rash but more headaches and fatigue. I have been on a very strict gluten free diet and gluten free body care products since being diagnosed. My Gastroenterologist practices out of the University of Chicago Celiac Center and she confirmed that my reaction is an autoimmune response. Shingrix also triggers a response in some folks who have Guillain-Barre Syndrome, another autoimmune disorder, as well as Celiac Sprue. Anyone taking a biologic for rheumatoid arthritis, psoriasis, psoriatic arthritis, ankylosing spondylitis or inflammatory bowel disease are taking drugs that work by suppressing the immune system, which can leave them at risk of infection. Also, in the same study on the safety for those with Autoimmune Diseases does not address the vaccine in patients who have weakened immune systems related to other causes. There is a need for randomized controlled trials to specifically address the safety and effectiveness of shingles vaccination among patients receiving biologics and on accounting for the type of immune disease, treatment, and use of arthritis drugs and steroids. I for one am not happy with what I've experienced and hope everyone consults their doctor prior to having the vaccine. 

[RMJ]

4 hours ago, BuddyBoy said:

I spoke to both my doctor and the pharmacist. Both agreed that it was a reaction to the vaccine. The first vaccine triggered a response that was identical to duhring disease, dermatitis herpetiformis. My second vaccine which I'm struggling with at the moment has the same reaction with less severe rash but more headaches and fatigue. I have been on a very strict gluten free diet and gluten free body care products since being diagnosed. My Gastroenterologist practices out of the University of Chicago Celiac Center and she confirmed that my reaction is an autoimmune response. Shingrix also triggers a response in some folks who have Guillain-Barre Syndrome, another autoimmune disorder, as well as Celiac Sprue. Anyone taking a biologic for rheumatoid arthritis, psoriasis, psoriatic arthritis, ankylosing spondylitis or inflammatory bowel disease are taking drugs that work by suppressing the immune system, which can leave them at risk of infection. Also, in the same study on the safety for those with Autoimmune Diseases does not address the vaccine in patients who have weakened immune systems related to other causes. There is a need for randomized controlled trials to specifically address the safety and effectiveness of shingles vaccination among patients receiving biologics and on accounting for the type of immune disease, treatment, and use of arthritis drugs and steroids. I for one am not happy with what I've experienced and hope everyone consults their doctor prior to having the vaccine. 

The Shingrix vaccine contains a protein from the virus, and an adjuvant.  Adjuvants are added to vaccines to increase the immune response.  Because of the specific adjuvant used (AS01B) there was a concern that Shingrix could cause flares of autoimmune diseases.  My doctor didn’t want me to have the vaccine until it had been around for a while - to see if such reactions were reported.  This type of reaction has been looked for in clinical studies both before and after FDA approval, and hasn’t been found.  However, the studies aren’t huge. There is always a chance of a rare reaction once a vaccine is used in a large number of people - and that appears to be what happened to you.  Most of your reactions (headache, fatigue, pain at injection site) are very common adverse reactions to the Shingrix vaccine.  But it certainly sounds like it also triggered a very unpleasant flare of your dermatitis herpetiformis. I hope you recover soon.

Have you considered reporting your reaction to VAERS? 

Vaccine Adverse Event Reporting System

[Maddie6332]

On 4/7/2019 at 12:36 PM, squirmingitch said:

@Pauline12 and @Coltsneck24 You guys are replying to people who were on here in 2008. They have moved on & haven't posted here in years & years. Having said that, I will post about my experience with shingles vaccine.

I have dh, my hubby does also. I know, weird right? It happens. Once one knows the symptoms, one is able to recognize symptoms in others. We both got the Zostavax shingles vaccine 5 years ago & had no negative or side effects at all. We plan on getting the Shingrix since it is more effective. We haven't gotten it yet b/c of the shortage of the vaccine. We'll see how availability looks this fall.

2008?!