Autoimmune Dysmotility and Me

Last year, I found a doctor who finally believed me. She believed I was always low grade nauseated, I was typically not hungry, etc. I was miserable.

She sent me for bloodwork and scheduled other tests. The bloodwork contained a marker suggesting I might have a GI autoimmune disorder. Then, pandemic.

She thought I might have a relatively newly understood autoimmune disorder. Essentially my stomach doesn’t process food at a typical rate. It is called Autoimmune GI dysmotility AGID

 The term “dysmotility” refers to abnormal movement of food, nutrients and waste through the digestive tract. With AGID, the presumption is that the nerves controlling the GI tract are being targeted by immune cells, resulting in altered neural function and thus, altered GI transit.

So I basically waited an entire year. I switched from dairy to oat milk which helped a lot. I didn’t eat much because we didn’t go anywhere. I avoided spicy foods altogether.

Then I learned my doctor was now doing research, but she handed me off to someone who also believed me. #miracle

They’ve ruled out IBS and celiac. I’m not diabetic, my thyroid has always been fine, etc.

I have to complete a food passing test where they feed me Egg Beaters with radium and scan my gut every so often for four hours. Colonoscopy, endoscopy. Then they send me for more bloodwork that requires enough blood to insist I have a ride home. Then another specialized blood test ordered from the Mayo Clinic. Then?

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If my stomach isn’t doing its thing, I have to work with nutritionist and eat like 8 meals a day. If I have this AGID, there are other scary treatments. But no cure.

Why share now? I’ve been in pain all week in my abdomen. Tests showed no cause. Had my appendix and uterus removed. No  sign of stones. But I really hurt and can’t sleep or eat.

It is likely related to this GI issue, not my kidneys or urinary system. And after days, I feel invisible. I can’t say “Hey, it is this generally acceptable medical diagnosis.”

Days blend into night. I wake up far too early. I have no energy. Laura convinces me to eat. I’m living on one yogurt per day. But most people just chalk it up to my mental health. My mental health is impaired because I’m eating one yogurt a day, not the other way around.

Hint – stress is another way to say crazy.

Jagoffs make comments like “Hey at least you lose weight.” As I search for insurance approved nutritionist, I keep bringing up body neutrality and anti-diet culture. It doesn’t seem like Blue Cross is into that.

I went through a half dozen doctors until someone believed me. Proportionally, it makes sense that most of my friends and colleagues would prefer to think I’m nuts than discuss gastric matters.

But I’m genuinely hurting. Have to wait for Highmark to approve the tests. I’m sick of yogurt. I’m sick of pain. And I’m sick of trying to explain this.

It’s hard to function on one yogurt a day. My thinking is fuzzy. My bones hurt. I have no strength or stamina.

But don’t send a casserole. Maybe juice?


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