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Celiac Crisis: A Rare but Serious Complication of Celiac Disease in Adults


Clinical Gastroenterology and Hepatology research on celiac crisis

Celiac.com 08/02/2010 - Celiac crisis is a rare, poorly understood, but potentially deadly condition in which patients with celiac disease suffer from severe diarrhea and other serious metabolic changes.

Celiac crisis is specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or supplemental nutrition.

In an effort better understand celiac crisis, and to improve diagnosis techniques for the condition, a team of researchers reviewed cases of celiac crisis to identify presenting features, formulate diagnostic criteria, and develop treatment strategies.

The research team included Shailaja Jamma, Alberto Rubio-Tapia, Ciaran P.  Kelly, Joseph Murray, Robert Najarian, Sunil Sheth, Detlef Schuppan, Melinda Dennis, and Daniel A. Leffler. They are affiliated variously with the Celiac Center of the Beth Israel Deaconess Medical Center at Harvard Medical School, and with the Mayo Clinic.

The team reviewed cases of biopsy-proven celiac disease, specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or parenteral nutrition.

The team found twelve patients who met preset criteria for celiac crisis; eleven patients who developed celiac crisis before being diagnosed with celiac disease; eleven patients with increased titres of transglutaminase antibodies; and one patient with low levels of immunoglobulin A. Duodenal biopsy samples for all patients were consistent with a Marsh 3 score; 33% showed total villous atrophy.

All patients showed signs or symptoms of severe dehydration, renal dysfunction, and electrolyte disturbances. All patients required hospitalization and intravenous fluids, six patients required corticosteroids, and five required parenteral nutrition. All patients showed positive response to treatment with a gluten-free diet.

Even though celiac crisis is a rare condition that strikes adults, it is nonetheless serious and carries a high risk of death. In most cases, patients with the condition present clear signs and symptoms, such as severe unexplained diarrhea and malabsorption. Doctors should test such patients for celiac disease, and consider treatment with systemic steroids or oral budesonide, in addition to providing short-term nutritional support until the patients respond fully to a gluten-free diet.

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13 Responses:

 
Rosemary
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said this on
06 Aug 2010 7:03:53 AM PST
Good information for sufferers.

 
brian blair
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said this on
06 Aug 2010 10:35:55 AM PST
That describes exactly what happened to me, sans the parenteral nutrition.

No mention was ever made of Celiac crisis, just the fact that I had celiac disease. A few days in the hospital, the endoscopy and diagnosis, then on with the new way of life.

 
C. Brown
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said this on
06 Aug 2010 10:54:18 AM PST
That's what happened to me. That is why I was finally was diagnosed. I was told by one of the moderators that I greatly exaggerated my symptoms. Thanks a lot for the support....

 
Pamela
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said this on
10 Aug 2010 6:19:52 AM PST
I starting getting stomach aches & diarrhea after every meal at the age of 12, never went far from a bathroom, hospitalized and diagnosed with everything but celiac (dairy problem, not). Fiinally at the age of 52 my sister-in-law got sick with the same symptoms and was diagnosed with celiac. I went off of gluten myself, gained 20 pounds (I was really thin) and haven't had a stomach ache or diarrhea since, I work in the health-care field and saw every gastro doctor in Philly, I thought I was dying, shame on them!

 
Julie
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said this on
10 Aug 2010 9:58:14 AM PST
I never had the diarrhea problem...but I have severe fluctuations with my blood pressure and heart rate.
I have gone off celiac for my nausea and general stomach upset that doesn't result in diarrhea but sometimes loose bowels and then constipation. I do feel much better but haven't heard a connection with blood pressure and heart rate issues...just wondering.

 
Peggy
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said this on
10 Aug 2010 8:15:53 PM PST
I do also suffer with heart palpitations as soon as I eat something with gluten. I can tell you by my heart reaction that I know almost immediately I have ingested gluten and as I start reading labels, always find the cause. Does not happen as often now that I have a better handle on foods containing gluten. I will say that the heart response had started to become quite severe before I realized what was causing it including heavy chest and pain. Apparently people who have the heart involved are true allergy responses and not just a sensitivity. Hope this helps!

 
Jennifer
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said this on
16 Aug 2010 10:50:25 AM PST
I had issues with very low blood pressure and occasional racing heart. Saw a heart specialist who thought I should be on beta blockers. Glad I didn't listen. Finally diagnosed with celiac 9 years later!

 
Meschelle
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said this on
10 Aug 2010 10:46:42 AM PST
Same thing happened to me prior to my diagnosis...my doctors didn't have a clue what was wrong for months...even the gastroenterologist I was referred to failed to make the diagnosis. By the time I was finally diagnosed, I had lost 70 lbs and was unable to digest any food. Sadly, many doctors have very little knowledge about Celiac disease. I suffered needlessly for about a year.

 
Sally Dellas
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said this on
10 Aug 2010 2:35:32 PM PST
I've had bouts of diarrhea off and on for ages. Been treated for IBS since 1990. I believe I had a celiac crisis around 1997 when I had to go into the ER for rehydration due to a long episode of diarrhea. The doctors talked about "dumping syndrome" --everything was going through me in minutes. But nobody even thought of gluten. In 2002 I believe I had another when I was up all night, with diarrhea every 20 minutes on two occasions a few days apart. I'd eaten spaghetti and garlic bread the first time and the leftovers the next, but didn't make the connection. I finally diagnosed myself a couple of months later, after seeing a nutritionist who mentioned wheat or gluten allergies. Duh--my daughter was diagnosed with celiac in 1959. Never knew adults could get it.

 
MATTMD
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said this on
13 Aug 2010 10:38:31 AM PST
This is a great read, four years ago I suffered from coeliac crisis, upon going to hospital I was told it was food poisoning, the more attacks over the next 8 months and I decided to go to my doctor and demand a test for coeliac, he refused and told me I most probably had Gilberts Syndrome, a totally unrelated disorder. in the end after dozens of other tests over the course of three years I was forced to take matters into my own hands, switching my diet following the Gluten Free plan and I have been fine since.

 
Marsha
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said this on
20 Aug 2010 8:55:50 PM PST
The racing heart thing was one I did not know about but remember it happening many times before my diagnosis. Since diagnosis and going gluten free, I seldom have the palpitations anymore.

 
Louise
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said this on
18 Jun 2012 5:15:31 PM PST
34 years of people thinking I was crazy. Let's hope this gluten-free plan will heal me up.

 
Shelly
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said this on
12 Oct 2012 4:25:08 AM PST
After reading this, it answers the question of my father's cause of death in Nov 2007. He was in a nursing home and went from 165 lbs in July to barely over 100 lbs at this death. He could not tolerate food at all and we literally watched him starve to death. One week before he passed, the doctors offered a feeding tube, but not knowing he had celiac, he and we declined. I found out 2 years later that my father was diagnosed with celiac sprue via biopsy just 1 month before he passed. What a shame that we didn't know and just eating right would have saved him from years of misery.




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