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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,857
    • Most Online (within 30 mins)
      7,748

    Pam Ward
    Newest Member
    Pam Ward
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.