Organ affected: pancreas

Four patients share the winding road to diagnosis with pancreas/bile symptoms and what effective management looks like.

Pancreas and bile duct involvement in IgG4-RD creates common but differing stories

Pancreas involvement in IgG4-related disease (IgG4-RD) means the immune system causes swelling and scarring in the pancreas (and sometimes nearby bile ducts).

When IgG4-RD affects the pancreas, the symptoms people encounter can be very different from one person to another: some feel pain, some feel almost none, and some notice changes first in urinary flow. Yet, they often share a common story of a long, winding road to diagnosis.

A common theme is that pancreas IgG4-RD can look like other serious problems—especially cancer—on scans. That can lead to fear, urgent tests, big decisions, and sometimes even surgery discussions before the full picture is clear.

In the stories below, you’ll hear how symptoms began, what was most concerning, and what helped each person finally get answers and better control.

The pancreas has two big jobs: it helps you digest food (by making enzymes) and it helps manage blood sugar (by making hormones like insulin).

Patient stories

Henry Danforth: IgG4-RD connected the dots from allergy symptoms to dangerously low blood sugar

“I’ve been diabetic for 40 years, and that had never happened before.”

Henry’s earliest IgG4-RD symptoms didn’t show up as pancreas or bile duct issues. Years before pancreas symptoms had him seeking explanations, he had head pain, congestion and a runny nose. He was treated for allergies, even though tests were negative. Then, in 2011, the picture changed: his pancreas stopped making enough digestive enzymes (exocrine pancreatic insufficiency), and he developed frequent diarrhea. What made this especially confusing was that he had no abdominal pain, even while his digestive system seemed clearly impaired.

Because Henry was also living with type 1 diabetes, the digestion problems affected his blood sugars in dangerous ways. He describes severe blood sugar lows that were unlike anything he’d experienced before. Over time, different doctors began wondering if his pancreas issues and later lung issues might be connected by an immune problem, but it still took time to “connect the dots.”

Eventually, a key moment came when his doctor (and his wife) recognized the pattern after reading about Dr. Stone’s work, and Henry was able to get into specialty care and move toward more targeted treatment.

“I still remember looking at you the first time and I said yep [ that’s IgG4-RD] because you had lacrimal gland and submandibular gland enlargement,” said Dr. John Stone, rheumatologist with Mass General Hospital and founder of the IgG4ward! Foundation.

Fred Zucconi: Nearly had major surgery before getting the right diagnosis

“A surgeon came in talking about Whipple surgery.”

For Fred, IgG4-RD didn’t announce itself in his abdomen first, either. It started with sinus trouble, and only later revealed itself through jaundice and a frightening cancer-like workup. The concerning warning signs were classic “bile flow” clues: dark urine and pale, clay-colored stool.

Imaging showed a blockage with swelling in the pancreas area. Because this happened during the early COVID period, Fred went through his hospitalization unable to have visitors, adding enormously to the isolation and fear of his journey to diagnosis.

At one point, his doctors told him he would need a Whipple procedure (major surgery often used when cancer is suspected). Fred describes an emotional moment when a clinician, nearly in tears, offered him a hug, because the team believed he has a very serious cancer.

Later, the message changed to “it’s not cancer,” and the story shifted toward IgG4-RD as the true cause of the blockage and inflammation. Fred’s journey highlights how fast things can move when pancreas disease looks like cancer, and how important it is to get the diagnosis right.

“Patients develop allergic symptoms, sinus symptoms, asthma, sometimes skin rash, eczema… there are clearly some allergy pathways that are important in IG4 related disease,” said Dr. Stone.

Cecilia Wainoga: From sudden weight loss to jaundice, a cancer scare and finally the true cause

“I was eating, but I would lose a lot of weight.”

Cecilia’s story began with a confusing mismatch: she was eating, but she kept losing weight. Over about four months she lost around 25 pounds, and she also noticed dark urine and frequent loose bowel movements. She became very tired, so tired she felt like she was “dragging” herself through daily life.

When her eyes turned yellow (jaundice), she knew it was serious, but like many people, she wondered if it was a liver problem. Imaging found a “mass,” and the word “tumor” immediately raised the fear of cancer. Cecilia describes how the waiting, especially waiting for biopsy answers, felt unbearable. Eventually, she received a diagnosis of IgG4-RD.

Treatment helped, including prednisone, though it came with side effects and later required changes in strategy (using B-cell depletion) to protect her pancreas and prevent further damage.

“[She’s] done well with the B-cell depletion…it’s been more than a year and [she hasn’t] had to be retreated… and [has] not had any recurrence,” said Dr. Stone.

George Paparis:

“Years of tests… and the pancreas was the clue”.

George first noticed gastrointestinal symptoms that felt like a persistent stomach bug. He then began losing weight (over 20 pounds) and had significant diarrhea. His primary doctor’s main concern was cancer because of the weight loss, which led to a full workup of tests: colonoscopy, upper endoscopy, CT, MRI, X-rays, blood tests, and later an endoscopic ultrasound that confirmed that there was scarring on his pancreas, but without providing clear answers.

A gastroenterologist finally suspected pancreatic damage and prescribed pancreatic enzymes, which helped stabilize weight by improving digestion. A pancreas specialist considered autoimmune pancreatitis, and George recalls that his IgG4 blood level was measured and found to be extremely high, yet the connection still wasn’t fully made at that time.

Over time, treatment (including prednisone) brought his IgG4 level down significantly, and George continued enzyme therapy to support digestion. His story shows how pancreas IgG4-RD can be “sneaky”—progressing while symptoms feel vague—and how symptom control (like enzymes) can be life-changing even while diagnosis is still unfolding.

“Well, we're not at a place with this disease where we have a cure for this. It's a matter of treating, controlling the disease, and then monitoring carefully for disease response,” said Dr. Stone.

Common themes among pancreas patients

Many people with pancreas involvement in IgG4-related disease (IgG4-RD) tell stories that echo one another, even when the details are different. A common pattern is symptoms that start in one place (often sinuses or “allergy-like” inflammation), then later shift into a much scarier chapter, such as jaundice, a “mass,” or digestive failure that can look like cancer or chronic pancreatitis.

Some people feel pain, but many don’t, which makes the illness easier to miss. And then there’s the emotional whiplash: urgent scans, urgent conversations, sometimes even surgical planning, followed by the slow, careful work of getting the diagnosis right and building a long-term plan.

You’ll often hear people describe:

• A “before the pancreas” phase with symptoms that seem unrelated (sinus trouble, congestion, allergy-like inflammation) and are treated as more common problems.

• Bile-flow clues that appear suddenly and feel alarming: dark urine, pale/clay stools, jaundice, itching, and abnormal liver tests.

• Digestion falling apart quietly, with diarrhea, weight loss, and greasy stools, sometimes without abdominal pain, even when the pancreas is already struggling.

• Diabetes getting harder to manage, especially when digestion changes make calorie absorption unpredictable and blood sugars swing low or high.

• A cancer scare moment, when scans show a “mass” and conversations turn quickly to major procedures, followed by relief (and new confusion) when biopsy or specialist review points to IgG4-RD instead.

• A long diagnostic road, with many doctors, many tests, and many “almost” answers before someone recognizes the pattern and connects the organ dots.

• Relief when the illness finally has a name, because a name usually brings clearer options: targeted treatment, monitoring, and a plan for preventing further pancreas damage.

In these pancreas stories, the turning point is often the same: a clinician who says, “Let’s slow down and look more deeply at this,” using the right combination of imaging, blood work, and—when needed—tissue sampling to name the disease and protect the pancreas for the long run.

Summary

Pancreas involvement in IgG4-RD can disrupt digestion, bile flow, and sometimes blood sugar, and it can do so quietly. For some people, the first signs are changes in stool, urine, weight, or energy rather than sharp pain. Because IgG4-RD can form mass-like swelling, it may look like cancer on imaging, which can accelerate fear and big decisions.

These four stories show different paths to the same turning point: a correct diagnosis and a treatment plan that protects the pancreas and the rest of the body. If you’re living this story now, you deserve careful evaluation, a team approach, and a plan that addresses both the medical problem and the emotional weight that comes with it.

References

1. Stone JH, Zen Y, Deshpande V. IgG4-Related Disease. N Engl J Med. 2012;366:539–551.

2. Peyronel F, Della-Torre E, Maritati F, Urban ML, Bajema I, Schleinitz N, Vaglio A. IgG4-related disease and other fibro-inflammatory conditions. Nature Reviews Rheumatology. 2025;21:275–290. doi:10.1038/s41584-025-01240-x