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

Double Dq3


cwj-tlj

Recommended Posts

cwj-tlj Rookie

Just back from Mayo...Forget going there for help unless you have the classic celiac genes. I am having severe reactions with each accidental glutening. Neuro symptoms worsening with also now BiPolar symptoms . Anyone know about this? Thanks

Bx neg after gluten-free 8 mo

Blood neg after GF8 mo

enterolab + caseine and gluten DQ3/DQ3


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Doctors are idiots in this country. The majority of them do not even realize that there are neurotoxic features to gluten intolerance. You have got to help yourself unfortunately. The only thing you can do is to do your best to be as gluten free as you possibly can. Do not take any chances on CC issues, many can but you can not. At least not now. Go with as much pure unprocessed food as you can and for right now you should consider dropping dairy (casien as well as lactose). After you have been neuro symptom free for a couple of months then challenge dairy and make sure it is not having a similar effect.

My DS is now showing strong bipolar symptoms, I have at times also. I was actually diagnosed with a rare seizure disorder, sub-illeal seizures, I spent years on a very toxic antiseizure drug that caused my hair to fall out and almost destroyed my liver. I have no seizures gluten-free, period. In doing research I found that a lot of brain disorders seem to be relieved by the gluten free diet. You may want to consider googling bipolar and celiac or gluten intolerance. You will be surprised by how much comes up, you will most likely not be surprised that most is not from the US.

One more very important thing to check is all your meds, every last one. OTC and script meds have NO labeling laws in effect. Generics are particularly dangerous. Do not trust that your doctor or pharmacist has checked. Do it yourself and do it by contacting the company that makes the drug as many gluten-free drug lists are not as accurate as we would like. Not their fault, binders change and any gluten-free list is only accurate the day it is made. This applys to food also. Oh and make really sure you have eliminated it from toiletries and personal products also.

Wish I could be of more help, both for you and for me. My sons situation is getting critical and I am helpless right now until he decides to help himself.

One more thing that I want to note. If your bipolar features are not relieved by making your diet very strict and eliminating casien also please do not hesitate to talk to your doctor about this. Give it a good shot but if you start becoming suicidal or violent you can not ignore it and hope it goes away. In my case it was extremely tied to my gluten consumption and once gluten free I would show symptoms for only 1 to 3 days after a glutening then it would lift. I chose not to medicate because the problem is so limited. It the problem is more long lasting with you or never really seems to lift you should consider talking to a doctor about getting more help. Once we form lesions in the brain they are not always resolveable by just the gluten-free diet.

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. - trents replied to Ginger38's topic in Related Issues & Disorders
      17

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Wheatwacked replied to Ginger38's topic in Related Issues & Disorders
      17

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - cristiana replied to Ginger38's topic in Related Issues & Disorders
      17

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      17

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,078
    • Most Online (within 30 mins)
      7,748

    macjunomelon
    Newest Member
    macjunomelon
    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

    • trents
      When you say you didn't think twice when it was offered to you, are you meaning that you dismissed it or that without hesitation you got the vaccination?
    • trents
      I would note that the article linked here is putting forth a hypothesis, not presenting a scientific conclusion. And the one about zinc as a treatment for shingles is careful to say that the evidence is weak. It gets a "Source of validity" science rating of 2 out of 5.
    • Wheatwacked
      When I had my Shingles attack in 2019 my vitamin D was at 49 ng/ml.  Doctor gave me an antiviral shot and 2 tubes of lidocaine. Sufficient intake of vitamin D and the antiviral essential mineral Zinc can help reduce risk of viral infections.   I've been taking Zinc Glyconate lozenges since 2004 for airborne viruses. I have not had a cold since, even while friends and family were dropping like flies. Evidence supporting the use of: Zinc For the health condition: Shingles  
    • cristiana
      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
×
×
  • 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.