What is Gluten?

Gluten is a mixture of proteins found combined with starch in the endosperm of some cereal grains. In particular, the Wheat, Rye, and Barley grains. Gluten comprises approximately 80% of the proteins found in these grains. The gluten in the grains gives the dough made from those grains their elasticity, allow for leavening (rising), and the chewiness in some baked goods. Gluten that has been extracted from the grains is commonly used as a thickening agent in many foods, particularly vegetarian dishes where a protein supplement is needed.

Why Gluten Free?

In some people, an intolerance or sensitivity to Gluten exists. The most common of the Gluten in tolerances is Celiac Disease. Celiac affects an estimated 1 in 133.  For many with a gluten intolerance or sensitivity, the only treatment is the complete removal of gluten from the diet, and in some cases, from the persons immediate environment as well. Gluten intolerance is hard to diagnose and in many cases is diagnosed by removing gluten from the diet and observing the results. If the results are favorable, then the permanent removal from the diet is often recommended.

Others remove gluten from their diet as part of a diet called the “Gluten Free Diet.” While these people generally do not have an intolerance to gluten, they receive a positive effect from the removal of processed flours that are common in many breads as well as a reduction of carbohydrate intake.

Dr. John J. Zone M.D.
University of Utah

Skin Manifestations of Celiac Disease

Starting off by polling the crowd on different skin disorders and whether they are related to Celiac or not. Seems to be quite a few who likely have DH (Dermatitis Herpetiformis), but maybe don’t know it.

Auto-immune diseases “travel in families”, if you’ve got the genes for one, you may get other auto-immune diseases that are in the same “family” of auto-immune disease. You may not have Celiac, but may have a thyroid disease. About 20% of Celiac sufferers will have thyroid disease.

Over a lifetime, women eat pounds of lipstick. What you lick, you swallow. What you breath in, you swallow. Shampoo; there is no evidence that gluten in your shampoo will affect you, through absorbtion. Unless you have a sore or lesion in your scalp. Gliadin is too large to be absorbed through the skin.

Don’t assume that it can’t be transferred however. Anything that hits a mucous membrane is likely to be absorbed. So, transfers from shampoo to hands to mouth, eye shadow that gets in the eye, etc, can be absorbed and could affect you.

HLA and Celiac Disease

90% of CD and DH patients express HLA DQ2
9% express DQ8

1 in 3 people who were self diagnosed Celiacs, were tested and did not have the gene, and could not have had the disease. (From a study of 69 people Dr. Zone tested in his lab)

It’s a lifetime disease, take the test and be sure.

Dermatitis Herpetiformis

DH is a cutaneous manifestation of cd that is best diagnosed by identifying granular IgA in dermal papillae. All DH patients have some degree of CD and DH patients are likely to reflect the entire spectrum of histological and clinic CD in adults.

*Editors note. I had an appointment to keep, so had to leave the conference a bit early, and so missed the latter few minutes of Dr. Zone’s session as well as the last session of the day. Once I get a bit of time, I’ll be doing some quick articles on some of the vendors (new good food!) and on the conference overall.

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!