A woman sits up in bed clutching her stomach.

My Experience With Digestive Issues and Lupus

Last updated: September 2022

As we all know, our lupus symptoms can vary so much and will effect us all differently.

I have found that it has played havoc with my digestive system over the years. I first started having issues when I was 21 - many years before I was diagnosed with lupus, although I believe that my body was showing some milder symptoms such as migraines and skin rashes.

Digestive issues on holiday

I recall being on holiday in Miami and just feeling "off." I’d lost my appetite and felt a bit nauseous. We were booked to go for dinner at a lovely restaurant, but I just couldn’t eat anything. Unbeknownst to me at the time, this was the start of pernicious anemia.

Pernicious anemia is a condition that is often linked with lupus. It happens when the stomach is unable to produce a substance called intrinsic factor and as a result our bodies can not absorb vitamin b12 which causes low red blood cells. It can also cause neurological symptoms as well. Treatment involves vitamin b12 injections.

After this was diagnosed and treated, I felt much better, but I was still suffering from sporadic episodes of diarrhea and stomach pains.

My mum suffers from colitis and I wondered if this was perhaps what I was dealing with as it tends to be hereditary.

Digestive disease doctor

I remember my gastroenterologist saying that my symptoms sounded more like Crohn's disease. Both Crohn's and colitis are forms of inflammatory bowel disease and they are autoimmune diseases. Interestingly, these conditions can cause similar lupus symptoms, such as mouth ulcers, fatigue, and an elevated sedimentation rate. This shows inflammation levels in the body. Once again, this is often raised with active lupus.

I had an endoscopy and a colonoscopy, but nothing was ever conclusive apart from removing some polyps in my stomach. When I started steroid treatment for lupus, I did notice an improvement in these symptoms.

Another culprit that has been with me for many years is GERD (gastroesophageal reflux disease). This is where the esophagus becomes inflamed, and the muscles used to swallow become weak. The muscle that connects the esophagus becomes weak, and this can cause the stomach acid to move up into the esophagus.

Being careful with lupus and digestive issues

A few weeks ago, I had the worst attack I’d ever experienced. I was sleeping, and it woke me up! I could feel a continuous flow of acid coming up into my throat and a taste in my mouth like I had vomited. It scared me as nothing I did could stop it. It was causing a mucus-producing cough. I ended up propping myself up with pillows because I could not lay down flat.

I find I have to be extremely careful with my diet as I have many triggers that can make it much worse including rich foods such as curry, chocolate, and gluten. If I do overindulge, I usually end up taking an antacid liquid to stop the burning sensation.

It can be hard to know if these digestive issues are due to lupus or a separate unrelated symptom. However, research has suggested it’s very common for these issues to occur with lupus.

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