-
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
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- Jmartes71 replied to Jmartes71's topic in Doctors10Second chance
Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely... -
- knitty kitty replied to Jmartes71's topic in Doctors10Second chance
@Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors. -
- knitty kitty replied to HectorConvector's topic in Related Issues & Disorders330
Terrible Neurological Symptoms
@HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic... -
- HectorConvector replied to HectorConvector's topic in Related Issues & Disorders330Terrible Neurological Symptoms
This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I... -
- HectorConvector replied to HectorConvector's topic in Related Issues & Disorders330
Terrible Neurological Symptoms
So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Celiac.com Sponsor (A22):
-
Forum Statistics
-
Total Topics121.6k
-
Total Posts1m
-
-
Celiac.com Sponsor (A21):
-
Who's Online (See full list)
-
Upcoming Events
-
0March 10, 2026 10:30 PM
Until 11:30 PM
-
0March 18, 2026 10:15 PM
Until 11:15 PM
-
-
Posts
-
Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely changed.i wish I can upload my letter from KB -
By knitty kitty · Posted
@Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors. -
By knitty kitty · Posted
@HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency. These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says. Try taking 500 mg Thiamine Mononitrate and look for health changes. -
By HectorConvector · Posted
This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol) and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know. -
By HectorConvector · Posted
So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.