Autoimmune Gastrointestinal Dysmotility

[Zebra]

Hi, Comrades,

If you suffer from upper or lower GI dysmotility, I hope you will check out this post.

The Mayo Clinic has identified a distinct autoimmune form of GI dysmotility and offers a panel of antibody testing to confirm the diagnosis.

Presumably you and your GI doctor would go through all the GI medical tests necessary to identify upper or lower GI dysmotility and then you would probably have to bring the Mayo Clinic GI Dysmotility antibody blood test to your doctor's attention, as it does not appear to be well-known condition.

Why is it worth asking for? Because instead of just symptom support, you would qualify for immunotherapy to address the root of the problem.

Here's some info from the Mayo Clinic and a link to the aforementioned testing.

Improving patient outcomes with targeted antibody testing​

Autoimmune gastrointestinal dysmotility (AGID) is a clinical and limited manifestation of autoimmune dysautonomia typically associated with syncope, neuropathy, and sweating problems, but may also involve chronic gastrointestinal dysmotility.

Identifying gastrointestinal dysmotility as autoimmune-mediated is extremely important because patients treated with immunotherapy can see a dramatic improvement — going from persistent nausea, vomiting, and weight loss to feeling normal within a few weeks. Our algorithmic approach to AGID testing uses multiple methodologies to identify antibodies associated with the illness. Test results can direct a search for an underlying cancer and guide treatment selection.

Useful for investigating unexplained weight loss, early satiety, anorexia, nausea, vomiting, constipation, or diarrhea in a patient with past or family history of cancer or autoimmunity.
Can direct a focused search for cancer.
Can help differentiate AGID from the effects of chemotherapy.

LINK TO TEST: https://www.mayocliniclabs.com/test-catalog/overview/92120

 

[Zebra]

Hey, @Howard

I'm tagging you in case this is of interest to you. Perhaps it's worth ruling in/out?

 

[Zebra]

And now for a rant:

My ME/CFS (or whatever it is) presented as a "virus" and immediate difficulty passing food through my esophagus and stomach. Within 4 weeks I couldn't eat solid food at all and was hospitalized for that (as well as other issues).

After an endoscopy revealed nothing other than mild gastritis, I was "lucky" in that I got hooked up with a GI motility specialist right away.

After 15 pound weight loss and much testing we learned that 90 percent of my swallows were ineffective (esophagus failed to contract), my stomach wasn't stretching to accommodate food, and I had SIBO.

I was then MISDIAGNOSED with Scleroderma Esophagus.

This diagnosis made no sense to me as I was negative for Scleroderma antibodies and had zero signs of Scleroderma anywhere else on my body. Furthermore, I questioned that Scleroderma Esophagus would present so rapidly, over the course of just 4 weeks. After pushing this GI motility specialist for a differential diagnosis beyond Scleroderma Esophagus, I got labeled with "severe underlying anxiety disorder". Haha!

Anywho, there is much more to the story, but the point I want to make is that I sure wish my GI doctor had kept up with the latest research in her field and had thought to test me for Autoimmune GI Dysmotility. Perhaps things could have turned out differently for me (if I had a positive antibody titer, of course).

When this happened to me 10 years ago, I didn't even know it was possible for one's esophagus to essentially stop contracting. I didn't know that the entire gut was controlled by the nervous system. I had never heard of the autonomic nervous system and I certainly didn't know that it could fail to work properly. I was blissfully ignorant.

I want to share this hard-earned information and potential diagnosis with you all in case it can be helpful to current or future members.

 

[andyguitar]

If you suffer from upper or lower GI dysmotility, I hope you will check out this post.

The Mayo Clinic has identified a distinct autoimmune form of GI dysmotility and offers a panel of antibody testing to confirm the diagnosis.

Looks interesting @Zebra and could be worth checking out @Howard

 

[Howard]

Hey, @Howard

I'm tagging you in case this is of interest to you. Perhaps it's worth ruling in/out?

Thank you. This is very interesting, especially considering my swallowing difficulties (problems with liquid only).

My immune system is seemingly hyperactive as well ... and beyond original attempts at categorizing me as having anorexia, they also went with the anxiety diagnosis as well (by default, I am quite sure).

At this point the Mayo Clinic won't see me (no longer take my insurance), but I'll check to see if there's a potential workaround / if I can get my doctor to do anything. If the test is affordable, I might be able to work something out.

 

[kangaSue]

Athena Diagnostics (a division of Quest) are also proficient at testing for these antibodies (that are found in both Autoimmune Gastrointestinal Dysmotility (AGID) and Autoimmune Autonomic Ganglionopathy (AAG) - AGID is considered to be a lesser form of AAG).

Dr Steven Vernino at UT Southwestern is also expert in this area and his lab can test for these antibodies too.

Another entity dubbed 'Neurogenic Gastrointestinal Dysmotility' (dysautonomia-related GI dysmotility due to celiac plexus nerve inflammation or compression by the median arcuate ligament) can cause similar GI tract issues, but esophageal dysfunction is a less commonly encountered symptom in this one. A celiac plexus block (CPB) is a helpful diagnostic measure for this and possibly a way to differentiate this from an autoimmune thing.

If it's of any help, regular CPB's (along with the vasodilator nicorandil) have become my mainstay treatment for significantly moderating my chronic gastroparesis symptoms seeing as my doctors don't believe in my GI dysmotility being dysautonomia/neurogenic related.

https://pubmed.ncbi.nlm.nih.gov/35995120/
CT-Guided Celiac Ganglion Block for Neurogenic Gastrointestinal Dysmotility(2022)