Transverse Myelitis from Celiacs

[theParaplegicCeliac]

Hi y’all. 
This August I was diagnosed with celiacs disease after becoming paralyzed from the chest down from transverse myelitis. I was additionally severely malnourished due to lack of villi. I’m getting better, the GI team thinks celiacs was clearly the cause of the transverse myelitis because it was caused by an autoimmune process. The neurology team is full of imbeciles who don’t think celiacs is a big deal and still think my case is idiopathic. Are all non-GI doctors imbeciles who don’t think celiacs disease is a big deal? Or are there some non-imbecilic doctors? Idk what they teach in the doctor schools, but it’s mostly bias. I had pericarditis a year earlier and had abnormal autoimmune markers in my blood. And I went to a rheumatologist and told him my aunt had celiacs and he said “nope that couldn’t cause this” & sent me on my way. And now I’m paralyzed  so happy insurance/me had to pay for their wonderful services. 

[trents]

Welcome to the forum, the ParaplegicCeliac!

Your story is a heartbreaker but I urge you to keep in mind that the GI doc's opinion is just that, an opinion, even though the circumstances suggest it might be correct.

Most of us lived with celiac disease for a significant number of years before being diagnosed. In my case, my first symptoms were elevated liver enzymes that went on for 13 years before I got my celiac diagnosis. Those enzymes normalize within 3 months of eliminating gluten. I was spared permanent liver damage by the grace of God. But by the time I was diagnosed I had already developed osteopenia and kyphosis of the spine.

Yes, it is very frustrating to run into all the ignorance found in the medical community with regard to celiac disease. It is slowly improving, however.

[knitty kitty]

Welcome to the forum! 

I agree that current medical training leaves a lot to be desired.  

Doctors are trained in medical training institutions funded by pharmaceutical companies to dispense pharmaceuticals.  Doctors are given about fifteen minutes of education about vitamins and nutrition in seven years of med school.  

How are they correcting your severe malnutrition?

I had vitamin and mineral deficiencies that were ignored.  

I found an article that may be of interest.....

B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6930825/?report=reader

 

[shadycharacter]

2 hours ago, theParaplegicCeliac said:

Hi y’all. 
This August I was diagnosed with celiacs disease after becoming paralyzed from the chest down from transverse myelitis. I was additionally severely malnourished due to lack of villi. I’m getting better, the GI team thinks celiacs was clearly the cause of the transverse myelitis because it was caused by an autoimmune process. The neurology team is full of imbeciles who don’t think celiacs is a big deal and still think my case is idiopathic. Are all non-GI doctors imbeciles who don’t think celiacs disease is a big deal? Or are there some non-imbecilic doctors? Idk what they teach in the doctor schools, but it’s mostly bias. I had pericarditis a year earlier and had abnormal autoimmune markers in my blood. And I went to a rheumatologist and told him my aunt had celiacs and he said “nope that couldn’t cause this” & sent me on my way. And now I’m paralyzed  so happy insurance/me had to pay for their wonderful services. 

Found an example of nutritional deficiency (b12) causing transverse myelitis. A possible cause of b12 deficiency is of course malabsorption due to celiac disease, so clearly there is a possible connection.

Myelopathy due to vitamin B12 deficiency presenting as transverse myelitis

Good to hear you're getting better.

[Scott Adams]

I would definitely look into supplementation, and this article may be helpful:

 

[Russ H]

On 5/1/2023 at 7:27 AM, theParaplegicCeliac said:

Hi y’all. 
This August I was diagnosed with celiacs disease after becoming paralyzed from the chest down from transverse myelitis. I was additionally severely malnourished due to lack of villi. I’m getting better, the GI team thinks celiacs was clearly the cause of the transverse myelitis because it was caused by an autoimmune process. The neurology team is full of imbeciles who don’t think celiacs is a big deal and still think my case is idiopathic. Are all non-GI doctors imbeciles who don’t think celiacs disease is a big deal? Or are there some non-imbecilic doctors? Idk what they teach in the doctor schools, but it’s mostly bias. I had pericarditis a year earlier and had abnormal autoimmune markers in my blood. And I went to a rheumatologist and told him my aunt had celiacs and he said “nope that couldn’t cause this” & sent me on my way. And now I’m paralyzed  so happy insurance/me had to pay for their wonderful services. 

I did a quick search and found a couple of cases of transverse myelitis associated with coeliac disease, so it is not unheard of. I had a heart arrhythmia that has gone since I was diagnosed. I also used to get bad chilblains, which are also associated with autoimmune antibodies. How are you getting on?

[Guest 648]

FWIW, I've come across too many imbecilic 😉 doctors across the spectrum of those I've required services from.

Best of luck theParaplegicCeliac

......648