Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Had Hoped To Never Return To This Place


zus888

Recommended Posts

IrishHeart Veteran

So did he do a scraping?

It's only necessary when the doc cannot distinguish it from other rashes.

If both docs say it's shingles, it's probably shingles. :(

We could speculate all day long whether or not resuming the gluten was the catalyst for it, the point is, it's here now.

SUZANNA---With the addition of antivirals--- and I believe you said antibiotics as well??-- into your system--I hope you take some probiotics as well to help out your gut.

Autoimmune diseases run in packs....this thing may have erupted from chronic stress and a compromised system. Reintroducing gluten has not done you any favors, IMHO.

Having to wait a few weeks before procedures is a very good idea. Again, IMHO. Your body is run down apparently and an active virus needs to be treated.

I still do not understand why you are doing this gluten-challenge right now, after being gluten-free for so many months, but like everything else you do in your life, it's your decision.

Rest up & Good luck.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 106
  • Created
  • Last Reply
zus888 Contributor

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).

pricklypear1971 Community Regular

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).

If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.

Gemini Experienced

If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.

You do not need a smear or scraping for the diagnosis of shingles...only if, like IrishHeart said, it's hard to distinguish from other rashes. Shingles only ever appears on one side of the body...not on both sides at once so that's a huge clue. You can also run fevers with it since it is a virus. Other rashes do not usually come with fevers. You cannot have surgery if you have an active rash on your body. It needs to heal. I know it can be annoying to have to wait but you cannot heal well from surgery with a possible virus or something else going on.

domesticactivist Collaborator

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

YES!!! <3

IrishHeart Veteran

from herpes zoster clinic.

"It is not clear what prompts the virus to reactivate or "awaken" in healthy people. A temporary weakness in immunity (the body's ability to fight infection) may allow the virus to multiply and move along nerve fibers toward the skin. Although children can get shingles, it is more common in people over the age 50. Illness, trauma and stress may also trigger a shingles attack.

People with a weakened immunity for any reason are more prone to develop shingles. They are also more likely to have a serious form of it.

How is Shingles diagnosed?

The diagnosis is based on the way the blisters look and a history of pain before the rash on one side of the body. The dermatologist may scrape skin cells from a blister onto a glass slide for examination. The glass slide is then examined under a microscope for changes characteristic of zoster. If there is any doubt, blister fluid containing virus can be sent to the laboratory for special testing."

Just FYI :)

Marilyn R Community Regular

Interesting. I have been plagued by the herpes virus since I was 16 years old. I've always wondered if it was from sharing lipstick with a friend (still rememeber her name) or my Aunt Crystal (she had it too). For the first time in well over three years I felt like I was getting a herpes sore on my lip. I applied ice twice, then took am anti-anxiety medication. The sore never appeared, and I slept like a log. The silver lining in the sow's ear appears too be that we never get sick from common illnessess. Our defense system is up to British Standards. I think the anti-anxiety medication simmered my system down, don't use it often but was happy with the outcome this time.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

    3. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    5. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.