Joan Bundtzen

I think it's one of the most most missed diagnoses, and the science of it is relatively new--there are only about 20 experts around the country, like Dr Schievink at Cedars-Sinai, Dr Dillon at UCSF, Dr Kranz at Duke.  I've written a journal article about it that I've submitted for publication and it has all the references that matter.  I can send it to you--about 3 pages--if you tell me how to do that.   

Joan Bundtzen M.D.

On 11/20/2021 at 4:26 PM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

You might consider the possibility that you have a spontaneous spinal fluid leak--go to the website spinalcsfleak.org which is run by Dr Wouter Schievink at Cedars-Sinai in Los Angeles, an expert in the field.  I've read about it because I probably have it and am undergoing imaging now--but it can present with symptoms all over the body, usually with a postural headache but some people don't have headaches at all.  People with spinal fluid leaks often develop autoimmunity, like celiac and thyroid disease (I have both)--and I wonder if the leakage causes antibody formation?  Leaks can be due to trauma, pregnancy, surgeries in the area of the spine, or without any known cause and they can be present for years--the longest I found in the medical literature was 15 years.   Most physicians are unaware of spontaneous leaks so it is a diagnosis often missed.  Check out the website and see what you think.  Spinal fluid leaks are fixable. Joan Bundtzen M.D.