GERD, autism, hypermobility

Something that is not an April Fool’s joke.

As of April 1, my insurance company now needs prior authorization to fill a prescription for Omeprazole.

In the autism spectrum disorder/Ehlers-Danlos (EDS)/Mast Cell Activation Syndrome (MCAS) nexus, most patients have to manage GERD. Unmanaged GERD leads to asthma and other respiratory problems down the road. Two days of untreated GERD for me feels like a heart attack. Not figuratively, actually. The pain is intense and it radiates up into my jaw. Sleep is not an option. The physical stress then sets off even more allergic responses.

You can’t cure GERD in an autistic patient. Onset for me started at 10-years old. I’ve had a hiatal hernia repair to fix this 11 years ago. You can treat it with H1 and H2 antihistamines, sodium cromoglycate, ketotifen, omalizumab and leukotriene receptor blockers, and proton pump inhibitors. Omeprazole (proton pump inhibitor) works just fine. It’s not suggested for long term use because it can result in malabsorption of necessary vitamins and minerals like B12, iron, and magnesium and can lead to gut health problems.

Autistic people tend to have malabsorption and gut health problems already. I take methylated B Complex, chelated magnesium, and a probiotic. But I’m doing this on my own without doctor supervision because it takes functional doctors to actually see the bigger picture. The studies are all out there for practitioners to read, but only if they have access (which a lot don’t) and time (ha ha haaaaaaaa).

So here’s me stumbling in the dark to manage one long term problem and prevent future long term problems and also mitigate problems caused by said management while health practitioners still don’t know, understand, or believe that the connection between autism, connective tissue disorders, and histamine response exists. Just because they didn’t learn in med school.

Know what they did learn in med school? To spot a woman presenting with too many complaints. Well guess what? They’re all the same complaint. They all have the same genesis. You just need practitioners to spot the forest when they’re hearing about the trees.

What am I seeing in social media posts by practitioners and patients about the connections between hypermobility, MCAS, and POTS? That the myriad of symptoms aren’t just experienced by autistic patients. They are shared by patients who identify as having ADHD. So either you have undiagnosed autistic patients who only know the ADHD component OR this is a broader neurodiversity issue OOOOOOR the present paradigm is failing to capture what the underlying issue really is.

Eventually the answers will come and practitioners will take all of this for granted. Not because the arc of medical history bends towards justice, but because enough advocates will force it to bend.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s