Celiac disease and dermatitis herpetiformis

 

 

 

Your doctor says that you have celiac disease.  Celiac disease is also known as gluten sensitive enteropathy (GSE).  Dermatitis herpetiformis (DH) is a rash that some patients with celiac disease get.  All patients with dermatitis herpetiformis have celiac disease but only about one-third of patients with celiac disease will have the dermatitis herpetiformis rash

 

• Patients with Celiac Disease must eliminate all foods from their diet which contain gluten.

 

• Gluten is a protein that is commonly found in wheat, barley, and rye.  There are many byproducts of these substances such as food starch which may also contain gluten.

 

• There are many sources of "hidden" gluten in a modern-day diet.  You should consult a dietitian to help you design a diet that meets your needs.  Support groups (see below) have compiled lists of "safe" foods.

 

• You can completely control the manifestations of Celiac Disease if you maintain a strict gluten-free diet.

 

• You don't need chemotherapy, radiation, or surgery to control celiac disease as you might with other serious diseases.

 

• Medications are sometimes used to control the itching and rash of dermatitis herpetiformis.  Most patients can stop these medications if they maintain a strict gluten-free diet.

 

• By controlling your diet you can reverse most if not all of the damage caused by Celiac Disease.

 

• Most patients with Celiac Disease report that they feel much better after a period of months on the proper diet.

 

• You must stay on a gluten-free diet everyday for the rest of your life.

 

• There are serious conditions such as osteoporosis (thinning of the bones), neurological damage including epilepsy, and certain cancers which are much more common in patients with GSE.  This is the reason that you must avoid even small amounts of gluten in your diet.  The risk for these serious conditions is greatly reduced by staying on the diet.

 

 

What causes celiac disease?

 

Scientists currently believe that you inherit a risk to develop celiac disease.  Everyone with this risk does not develop celiac disease.  Some scientists think that a trigger sets off Celiac Disease in susceptible persons.  Examples of such a trigger might be a virus infection, major surgery, or extreme stress.  Gluten sensitivity is not the same thing as wheat allergy although some people have both conditions.

 

Your parents and siblings have about a 1 in 10 chance of developing this condition.  Other relatives also have a smaller chance of having it.  You should inform your relatives so that they can discuss it with their doctor.  The doctor may recommend a blood test to screen for the disease.  Other medical conditions such as thyroid problems and insulin dependent diabetes are correlated with Celiac Disease.

 

 

What are the symptoms of Celiac Disease?

 

Infants with Celiac Disease often have severe diarrhea and failure to grow and gain weight.

 

Older children and adults may have diarrhea or constipation.  Sometimes there are no intestinal symptoms other than gas or bloating.  Other symptoms may include abdominal pain, nausea, reflux, mouth ulcers, fatigue, bone pain, teeth which break easily, and many other symptoms.

 

Many patients with Celiac Disease are found to have anemia, particularly iron deficiency.  They also commonly have osteoporosis or "thinning of the bones".  They sometimes have a rash called dermatitis herpetiformis (because it looks like the rash caused by herpes).  This rash is related to Celiac Disease and not related to herpes.

 

 

How can I be sure that I have Celiac Disease?

 

Major advances have been made in the diagnosis of Celiac Disease.  There are several blood tests which are very accurate.  Your doctor may recommend that you see a specialist and have an intestinal biopsy.  This is done during a procedure called endoscopy where your doctor inserts a flexible tube through your mouth into your stomach.  The doctor is able to examine your small intestines and take biopsies.  If you have the rash, dermatitis herpetiformis, your doctor can perform a skin biopsy and this can give an accurate diagnosis.

 

 

 

What resources are there for patients with Celiac Disease?

 

The Celiac Sprue Association is a national organization which supports people with celiac disease and related conditions. 

 

Celiac Sprue Association/United States of America, Inc.

PO Box 31700

Omaha, NE  68131-0700

Phone:    402-558-0600

Fax:         402-558-1347

E-mail address: celiacs@csaceliacs.org

Web Page: http://www.csaceliacs.org

 

 

The Internet contains numerous valuable resources.  Start with:

 

http://www.fastlane.net/homepages/thodge/archive.shtml

 

 

The National Institutes of Health has an information sheet located at:

 

http://www.niddk.nih.gov/health/digest/pubs/celiac/