Dr. Joseph A Murray MD – GIG Educational Conference – Fargo/Moorhead 2011

Dr. Joseph A Murray
Mayo Clinic (mayoclinic.org)

Complications and outcomes of celiac disease
What happens after diagnosis

Before 1950
-key role in gluten in celiac disease was unknown. Therapy was low fat diet and vitamins
-Death was common
-emaciation due to persistent diarrhea
-dehydration and severe malnutrition
-high mortality in childhood
-mortality was approximately 36%, now, at about 0.4%

Howland, and 3-stage diet was done in 1929 and excluded carbohydrates rigorously. Was beginning of suspicion that there was something in carbohydrates. Before Gluten was discovered.

Because of villi damage, and inability to digest other foods after damage, many other foods have been blamed for symptoms. Carbohydrates aren’t to blame, Gluten is.

After 1950

-After description “wheat factor”: Mortality ~1%
-Malignant Lymphoma in CD (1957,1962)
-Cancer: big killer
-Death during adulthood
-Celiac not used as cause of death

Outcome is better now.
-recognition of gluten intolerance as a chronic and persistent order.
-discovery of gluten as the environmental factor responsible of celiac diseas

Self injury, willful ingestion of gluten is possible reason for increased mortality ratio.

Anger, denial, etc are part of the grieving process, but working towards an acceptance stage is necessary. Mental symptoms like ataxia are common symptoms and can cause psychological regression through process.

Patients die often from cardiovascular reasons. It’s no longer ok to just avoid gluten. You must avoid gluten healthfully. Be aware of ingredients other than gluten. Especially those high in salt, sugar, fat.

Older patients should get pneumonia shot at 50 and likely again at about 65 as risk of respiratory issues is higher in celiac. Shingles shot is important.

Lymphoma in Celiac
-2 studies
— Italy: increased risk of 3%
— Europe: increased risk of 2.6%

Standard of Care
-strict gluten free diet

Gluten free diet could be protective
-Improvement seen in biopsies after just a year
-Children heal faster, adults heal slower
-Healing is gradual, not all at once.
-Failure to heal can cause further issues

Undiagnosed mortality
-Warren Air Force Base Cohort
-8916 subjects
-Increased mortality rate of 4X in those with undiagnosed celiac

In another study, patients with undiagnosed celiac after age 50 had virtually no increased risk of mortality.

Only about 5% of undiagnosed celiacs will be diagnosed.

DQ2/8 test positive does not mean that you have Celiac.

Conclusions:
-Gluten Free diet “changed the game”
-diagnosed celiac disease is associated with modest excess mortality

Q+A

How to convince relatives to be tested?
Carefully. They don’t have a choice in whether they have Celiac or not, but they have a choice in whether they know or not.

Thanks Dr. Murray!

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My wife has Celiac Disease. I started this website as a way to record some of the information that I am learning along the way, and to help others who suffer from Celiac Disease by having a dependable resource for that information.
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