Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

What if I hadn’t been a smart GF cookie who knew how to find information online about how to live gluten freely? What if I couldn’t read? What if I had not been sent to him by a dermatologist because skin biopsies diagnosed me with dermatitis herpetiformis and so I was a little prepared for what it meant to have celiac disease?

A year later I saw a woman doctor in the same practice. She was so good I had to wait three months for an appointment. Follow-up appointments, even for acute symptoms, couldn’t be scheduled for any sooner than two months out because she was so booked with clinical and teaching responsibilities. That’s a long time to wait when you’re in pain or spending most of your time in the lavatory.

Once I knew I had celiac disease, I overhauled my whole life and house to ensure I was gluten free. I bought all new cookware, serveware, tableware, toaster, microwave, colander, etc.. If food ever touched something, I replaced it. I replaced all my makeup, bath and body products, hair care products, medications, and cleaning supplies. Even the cats went gluten free.

I got better so I went five years without seeing a gastroenterologist except for the one who performed an endoscopic exam in 2014 as part of a clinical research trial. That endoscopy and blood tests for the antibodies associated with celiac disease found I was too well to participate in the research trial testing a new drug to treat celiac disease. I’d been so gluten free, I didn’t have active markers for the disease. Joy!

And then in August 2015, I had a hysterectomy and oophorectomy for several good reasons. None of the masses removed were cancerous. Hooray! Some of my pain turned out to be from adhesions and endometriosis. In fact, my appendix was stuck to the side of the abdominal wall.

Over the next year, the abdominal pain persisted. The ob/gyn suggested a GI consult. I found a new gastroenterologist who carefully reviewed my tests and history, listened attentively, and tried to make sense of everything I was experiencing. I left feeling heard and hopeful: maybe she was my doctor.

She ordered a CT with contrast. The procedure is not painful, but the radioactive contrast they inject is not pleasant. After a ten-minutes in the box-sized waiting room, I went back for the test. In a monotone, the rad tech recited instructions to me, including the part about how the dye might make me feel warm (understatement). She didn’t ask me any questions before the test or attempt to discern why I was there. When the test was over, she removed the needle from my arm, slapped a bandage on the injection site and said, “You’re done,” before walking out. She didn’t ask how I felt or if I needed help getting up or finding my way out. I had to find my way out of the room and to the exit. I felt dehumanized.

A nurse called me the next week and said, “Your CT was negative.” I asked what that meant and she helpfully said it meant it was negative.

I was scheduled for a colonoscopy the following week so I thought I’d ask the doctor then. After two hours sitting in the cramped and packed waiting room of the endoscopy/colonoscopy center, I was called back. I was given a gown to change into and a locker to jam my clothes into. I then followed a  nurse into the “holding area” where I clambered onto a gurney bed and they started the IV. The nurses were brusque and no-nonsense, although some made me feel uncomfortable in ways I couldn’t explain. The doctor was as kind and friendly as I remembered, so I felt reassured. When I woke up, she said the colonoscopy found no masses or signs of disease. What a relief! I asked what I should do next, and she said I should go home and see how I felt for the next several weeks.

That’s it?

Long story short, I had a second surgery in November 2016, performed by the same ob/gyn who performed the hysterectomy. He removed “significant” scar tissue or adhesions. The appendix again was bound by adhesions to the abdominal wall and the intestines also had adhesions on them, all of which explained my ongoing pain. I felt relieved to know there were real reasons for my real pain and I felt glad I persisted in getting treatment.

The pain improved over the next few months. And then in March, it started again. This time my abdomen kept swelling and I kept breaking out in rashes. I felt so tired all the time and so unwell. My pants didn’t fit because my gut swelled so much. After two months of this, I needed to see a gastroenterologist because the rashes looked like my old friend DH and the symptoms felt eerily familiar. I went to a different gastroenterologist and the first thing she did was order blood work to check my celiac antigens.

I was shocked when the nurse called and said, “The blood work shows you’re still ingesting gluten. Do you want a referral to a dietician?”

What?  I know all about gluten. I know how to check labels and when in doubt, do without. I check everything: food, drinks, makeup, hair and body products, pharmaceuticals, cleaning products. Everything is gluten free. I think. I even have the new Nima sensor so I can test food on the very rare occasion we go out to eat.

But I’m still getting glutened. Next post I’ll tell you how and what I investigated as the source(s) of gluten.

Oh, and here’s an interesting tidbit. Yesterday’s newspaper carried a story about a nurse being arrested for sexually assaulting patients while they were undergoing GI tests. He worked at the endoscopy/colonoscopy center of the GI group where I went and felt the nurses were a little off but couldn’t explain why.

Lesson learned. Always listen to your gut and never give up until you find the cause of your pain.