Gluten Intolerance & Ulcers?

[VioletBlue]

I'm trying to solve a family medical mystery. Any theories would be appreciated.

My father was diagnosed with bleeding ulcers in the early 70's, had surgery etc. He began to have symptoms of bleeding ulcers again in the late 80's. It is now known that ulcers are caused by a type of bacteria, Helicobacter pylori in the intestine. Most people have this bacteria in their stomach and under ideal conditions the stomach can handle it. It's only when the stomach lining is compromised in some way that H Pylori becomes a problem. They figured all this out a few years after my father died.

In addition to the bleeding ulcers, in the late 80's he began to have other problems, which now, having been diagnosed as Celiac sound familiar. He would become lethargic and exhausted after a meal. He would often vomit after meals. He suffered from severe brain fog and the shakes and loss of coordination. From what the doctors clumsily described during his last hospital stay it sounds like he also had leaky gut. He went into a coma and then died two days after he was admitted from heart arrhythmia. His blood gases were way off which was what they blamed the coma on. They said there were high concentrations of ammonia in his blood. We came to suspect that he died of complications of Hepatitis C, something for which they did not develop a blood test until seven or eight months after he died. Now of course I wonder if it was Autoimmune hepatitis rather than Hep C, or if it was just advanced untreated gluten intolerance?

My father died at 69. His father died of complications from intestinal surgery for diverticulitis at 70. My father's brother died at 68 from intestinal cancer.

So I guess my question is, are ulcers somehow related to Celiac Disease? Does untreated gluten intolerance compromise the small and large intestines and make them more vulnerable to H Pylori? Has anyone seen any research? Does anyone have any personal experience?

[SpikeMoore]

Hi

I have a very similar medical mystery to solve. My mother died in 1982 at 42 years old from a liver condition, undiagnosed. She was a nurse and began having trouble in the mid 1960's, got better for a while. She had 3 children, and then one of my earliest memories is her eyes turning yellow.

She had ulcers and this progressive liver condition. Her bones broke from osteoporosis and she had low iron and was bright yellow and digestive issues. I have been told that she most likely had contracted Hep C from a needlestick injury at work. But as you point out, the test did not exist then.

A couple of times I wondered if I had the same thing because my stool looked like hers. Shorlty after going gluten free, my GP tested for H Pylori in the blood. It was inconclusive. 2 months later the repeat test was negative.

I think that if you have chronically inflammed intestines it follows that it would be an easy route for bacteria to get in and make ulcers. I think in the case of a celiac, it would be more likely to be in the duodenum, and ulcers are certainly possible there.

So am am wondering more that my mother didn't have PBC, which is linked to celiac. Also 2 of her siblings had juvenille diabetes, a niece has Downs and one more sib has epilespy, all things linked to celiac.

My blood work was negative, but I don't care. I am astounded by the improvement in health.

I realize this doesn't help much as it is not research based, but your story was so similar, I had to respond.

[VioletBlue]

Hi

I have a very similar medical mystery to solve. My mother died in 1982 at 42 years old from a liver condition, undiagnosed. She was a nurse and began having trouble in the mid 1960's, got better for a while. She had 3 children, and then one of my earliest memories is her eyes turning yellow.

She had ulcers and this progressive liver condition. Her bones broke from osteoporosis and she had low iron and was bright yellow and digestive issues. I have been told that she most likely had contracted Hep C from a needlestick injury at work. But as you point out, the test did not exist then.

A couple of times I wondered if I had the same thing because my stool looked like hers. Shorlty after going gluten free, my GP tested for H Pylori in the blood. It was inconclusive. 2 months later the repeat test was negative.

I think that if you have chronically inflammed intestines it follows that it would be an easy route for bacteria to get in and make ulcers. I think in the case of a celiac, it would be more likely to be in the duodenum, and ulcers are certainly possible there.

So am am wondering more that my mother didn't have PBC, which is linked to celiac. Also 2 of her siblings had juvenille diabetes, a niece has Downs and one more sib has epilespy, all things linked to celiac.

My blood work was negative, but I don't care. I am astounded by the improvement in health.

I realize this doesn't help much as it is not research based, but your story was so similar, I had to respond.

Thanks for sharing. It kind of reminds me of bearskins and stones something when I think about the medical community. What will we know twenty years from now we don't know now?

Our theory was they Dad had contracted Hep C from a blood transfusion a year and a half prior to his death. They transfused him after he lost a fair amount of blood from the bleeding ulcer. There's no real relavant medical history that I can find outside of what I mentioned. No history of auto immune diseases of any kind on that side of the family.

When I think of all the blood tests and barium scans etc. they ran prior to his death, surely there must have been a liver function panel in there of some kind. If his liver was failing so badly why wouldn't it have shown up in one of the blood tests. The whole experience frustrated us so badly because it seems that Kaiser HMO just didn't want to know or invest their time. I had his primary physician tell me "Honey, your father is old, things happen to old men." That was their whole attitude back then.

Anyway, thanks again for sharing. It's just hard to leave alone sometimes when you've lost someone you love and there are no explainations.

violet

[SpikeMoore]

One other condition linked to gluten that comes to mind when re-reading your post is ulcerative colitis. Do you know where the ulcers were with you dad, eg, stomach, small or large intestine?

[VioletBlue]

One other condition linked to gluten that comes to mind when re-reading your post is ulcerative colitis. Do you know where the ulcers were with you dad, eg, stomach, small or large intestine?

I know when he underwent the original surgery they removed about a third of his stomach. The second go around I believe was in the same place. A doctor who did a scope thought that the problem, this was in 87, was that the first surgery had left too clear a path for the bile ducts in the stomach and that was what caused the last round of ulcers. I now know that's not really the case, but that's what they believed then.

[debmidge]

I am going to throw this in as it's my husband's experience. When his GI did endoscopy Dr. found an ulcer in duodonum (spelling?) -- and it was not a result of the pylori bacteria. Dr. stated that he believed it was due to years and years of the misdiagnosed celiac wearing away at the lining of the small intestine. Since at the time of the endoscopy my husband had been gluten-free for 9 months, the celiac damage had healed and the ulcer was resolving on its own.

So yes, there's a connection between non- h.plyori ulcers and untreated celiac.

[Guest cassidy]

My grandfather died of stomach cancer in 1987. He had bleeding ulcers and then the cancer got him quickly. I was very young and don't remember much but I know that we never knew why this happened. I think he is the root of celiac in our family. He would lay down after eating and always seemed to have stomach/intestinal problems. My mother and her brother have celiac along with a few cousins, so it would make sense that he passed the gene along. So, not exactly the same situation, but I bet a lot of us have relatives that died from celiac complications back when it was even harder to recognize.

[VioletBlue]

I appreciate all your responses. You've given me some things to consider. I think I'm on the right track. I am feeling a little like an adopted step sister these days. My siblings don't want to hear about Celiac Disease, or genetics or family history. It's as if we don't share the same genes or something. Anyway, thanks for the responses.

[jayhawkmom]

I am going to throw this in as it's my husband's experience. When his GI did endoscopy Dr. found an ulcer in duodonum (spelling?) -- and it was not a result of the pylori bacteria. Dr. stated that he believed it was due to years and years of the misdiagnosed celiac wearing away at the lining of the small intestine. So yes, there's a connection between non- h.plyori ulcers and untreated celiac.

That's similar to our daughter's "diagnosis." Our GI connected the duodenal ulcers with "gluten issues" and recommended a gluten-free diet.