Celiac Disease Triggered By Campylobacter

[AmyCrawford]

I thought I would make a thread based on this subject, as it is something I am heavily researching right now. I thought I would summarize the research and then talk a bit about my person journey so far.

 

There is research and case studies out there that connect a campylobacter infection to celiac disease.

 

The first is a case study of a woman who had a bad bout of campylobacter. Months after getting it, she continued to have symptoms of GI distress - bloating, nausea, pain. Long rounds of testing for various GI problems, and nothing was positive. One year after her illness, they finally tested her for celiac disease through blood and biopsy, and found it...negative! So they sent her on her way. Five years later, after finding no relief, a follow-up blood test and intestinal biopsy were positive for celiac disease. The authors of the study connect her campylobacter to the onset of the celiac disease, though they make a general connection between all infections and the potential trauma they induce

 

The next  study takes it one step farther and directly connects Campylobacter Jejuni to Celiac Disease. It's a bit dense, but the long and short of it is that certain strains of Campylobacter infect the GI cell structure in such a way that it causes an autoimmune response that ultimately leads to the development of Celiac.

 

Here are links to both studies:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657967/

http://www.ncbi.nlm.nih.gov/pubmed/17729402

 

On a personal note:

Two years ago I got SEVERE food poisoning from milk that was tainted with campylobacter. A multiple day stay in the ICU and weeks of horrible pain left my body a mess - I was told by my doctor I was extremely lucky I didn't come out with bad damage to my liver.

 

I slowly got better for a few months, and then I started to have these "episodes". Vomiting, diarrhea, chills, nausea. They only happened once or twice a month, and my doctor wrote them off as "post infectious IBS". As time went on, the episodes got closer and closer together. We began testing - H Pylori, gastroparesis, blood work, endoscopies - besides finding high inflammation in my stomach, nothing was positive. Eventually they blood-tested for celiac, which was negative. They were stumped. Meanwhile, I was literally wasting away - down to 83 pounds.

 

In desperation, I reached out to a nutritionist, who put me on a very strict elimination diet. I immediately began to feel better. Within a month, I started gaining back weight, and my energy came back. We began introducing foods back. Everything was fine- until we reached gluten. One cracker, and I was back to where I started. The intense abdominal pain, the vomiting, the diarrhea, the chills, and a week of general misery. We took it back out, everything cleared up, and re-tested again 2 months later. Same result. This time, an odd rash down the back of my neck joined the other symptoms.

 

Because the blood test for celiac disease we took back when this thing started was negative, we assumed that the campylobacter must have just damaged my stomach and I simply had a hard time digesting gluten. So out of my diet it went. However, with every accidental glutening the symptoms got worse, as did the rash.

 

Finally I went back to the GI a month ago after a particularly bad "glutening". He took one look at the rash and said it was clearly dermatitis herpetiformis. The problem at this point is that besides the glutening, I had been off gluten for a year and a half. We just adopted four kids, and for me to go on gluten for 2 weeks to do the test properly would be devastating - I would be unable to care for my family in any way for potentially a month due to the severity of the symptoms. So while it is technically undiagnosed, based on the rashes, symptoms, and preceding factors, he was able to say with good confidence that I am developing Celiac.

[Sarahsigston]

My daughter had severe food poisoning in the Dominican Republic 3 years ago. She lost a ton of weight in the two. Collapsed and started fitting in the restaurant and since returning from that holiday had numerous stomach problems which Doctors said was stress and anxiety due to a levels. She felt that no one believed her. We were going to Doctors and hospitals continuously and somethings she had to come home from school in the afternoons as her stomach problems were so bad, even the school didn’t believe her and were sending letters to us stating that she seemed to be fine in the mornings (obviously the stomach pains started after lunch as she was having sandwiches or pasta and pesto)  anyway she was found out to have neutropenia last June and put under the care of lymphoma team!!! She explained the things that had been happening so they decided to do some further blood tests one of which was for coeliac disease. Her results were off the scale positive for coeliac >128 

i am absolutely mortified to think that a holiday may have caused my daughter to have a lifelong illness . 

[Ennis-TX]

  On 4/30/2018 at 7:38 AM, Sarahsigston said:

My daughter had severe food poisoning in the Dominican Republic 3 years ago. She lost a ton of weight in the two. Collapsed and started fitting in the restaurant and since returning from that holiday had numerous stomach problems which Doctors said was stress and anxiety due to a levels. She felt that no one believed her. We were going to Doctors and hospitals continuously and somethings she had to come home from school in the afternoons as her stomach problems were so bad, even the school didn’t believe her and were sending letters to us stating that she seemed to be fine in the mornings (obviously the stomach pains started after lunch as she was having sandwiches or pasta and pesto)  anyway she was found out to have neutropenia last June and put under the care of lymphoma team!!! She explained the things that had been happening so they decided to do some further blood tests one of which was for coeliac disease. Her results were off the scale positive for coeliac >128 

i am absolutely mortified to think that a holiday may have caused my daughter to have a lifelong illness . 

Expand Quote  

You might want to start up a new topic, but this type of incident is not uncommon. Fact she probably had the genes for the disease, many of us had the gene activated due to a stress/shock to the immune system. I think yours is the fourth? case I have heard of on these forums of it being with food poisoning, other times it can be pregnancy, virus, bacterial infection, or in my case my symptoms were suddenly changed and made apparent after a extreme alcohol binge as a young adult. The shock to the immune system either changes symptoms to make them more apparent/worsen, or causes the dormant genes for the disease to activate. Either way the issue becomes a life long issue, that can easily be dealt with with strict diet (NO CHEATING). Most here life a otherwise healthy life we just have to plan our meals, and often make our own.

I take it she is kept on gluten and got the endoscope to? Anyway here are some links how to manage this disease and common overlooked issues, and a link of hope to some gluten-free alternatives to common foods..
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

[HannahBick]

Do realise that she may have developed celiac disease anyway, even had she not encountered the 'food poisoning' incident. I heard from an MD friend of mine that a recent study showed that infections did not seem to influence celiac risk.