Celiac Disease has changed over the last 20-30 years from a rare condition to one that can affects up to 1% of all Americans. Its presentation has also changed significantly, and the majority of cases have a range of symptoms ranging from anemia and peripheral neuropathy to infertility. Today fewer than 45% of adult patients have the classic presentation of weight loss and diarrhea.
At CTGI, we have physicians with special interest in Celiac Disease who facilitate the diagnosis and management of the condition, and have started a community outreach education program to inform and educate the general public about this disease.
Frequently Asked Questions about Celiac Disease
What is Celiac Disease?
It is a genetic disease that has a clinical trigger (often a gastrointestinal infection ) that leads to an immune reaction to wheat, rye, and barley (also known as Gluten ) that in turn induces damage to the lining of the small intestine. The immune reaction and small bowel injury are associated with a diversity of clinical manifestations and symptoms.
What are the symptoms secondary to Celiac Disease?
Patients can have foul smelling diarrhea secondary to malabsorption of iron, calcium and other nutrients.
Abdominal pain and weight loss
There are also a variety of non gastrointestinal findings such as infertility, liver disease, arthritis, neuro-psychiatric conditions, other autoimmune diseases and even some tumors.
Some patients have non-specific symptoms like fatigue or malaise or no symptoms at all.
How does one treat the disease?
The primary therapy is careful avoidance of Gluten ( wheat, rye or barley )or a Gluten Free Diet. There are no medications needed for the vast majority of cases unless they need nutritional replacement.
Today, many restaurants have gluten free entrees and grocery stores have extended selections of gluten free products.
How is it diagnosed?
Celiac disease can be considered on the basis of patient’s with appropriate clinical symptoms or in high risk groups.
Blood testing is the best method of screening for Celiac disease and can be confirmed with a very low risk endoscopy.
Why not start a gluten free diet to see if it helps your symptoms?
Once you are on a gluten free diet, the blood tests can no longer detect the disease.
Unfortunately, Gluten free foods are more costly and therefore proving that they are needed would justify the extra expense.
Furthermore, many people may feel better on the diet initially, which could represent a Placebo effect, but gluten is in so many foods and products ( for example, gluten can be in lipstick, medications and even envelope glue )that seeking a medical or dietary consultation would be the best approach to excluding gluten from your diet.
Proving that you have Celiac Disease would not only have implications to your health but since it is a genetic disease, your children and other relatives are also at risk for the disease and would benefit by being tested as a result of your positivity.
Who are at increased risk for Celiac Disease?
First and second degree relatives should all be tested because of an increased risk of the disease
Autoimmune diseases like rheumatoid arthritis, thyroid disease, type 1 diabetes, and inflammatory bowel disease
Irritable Bowel Syndrome-IBS has a 4 time increased incidence than the general public
Iron Deficiency Anemia
Neurologic conditions like peripheral neuropathy, seizures ataxia, possibly headaches, psychiatric disorders and even memory loss
Isn’t Celiac disease a disease of children and young adults?
Not any longer. You could be in your 60-70’s and be found to have Celiac Disease.
Why should I follow a diet if I have no symptoms?
Many Celiac positive patients find they feel significantly better on the gluten free diet despite thinking that they felt fine without it.
We encourage a trial of the gluten free diet because many symptoms are so non specific that a patient may not recognize their symptoms.
What could happen to me if I don’t chose to follow the gluten free diet? It is expensive and I don’t really have symptoms.
Recognized benefits of following the gluten free diet include feeling globally better, reversing osteopenia, infertility, liver test abnormalities, or iron deficiency
Unfortunately some symptoms may not reverse like microscopic colitis or neurologic symptoms especially if unrecognized for a long time.
There are also increased risks of some autoimmune diseases and certain tumor with untreated Celiac disease that reverts to the same risk of the general public if you follow the gluten free diet.
Can I cheat on the diet occasionally and still be ok?
The immune response to even tiny amounts of gluten are significant. A normal small intestinal lining on a gluten free diet can deteriorate within 24 hours of ingesting gluten.
Where do I go to be evaluated for Celiac Disease?
You can start by seeing your Primary Care Physician or calling Connecticut GI for a consultation.
How else can I learn more about Celiac Disease?
Connecticut GI and Hartford Hospital have sponsored educational talks with question and answer sessions and samples of gluten free foods in West Hartford, Avon and Glastonbury over the last several years and would be happy to provide additional meetings. Please contact Ms. Machado at 1 800 CELIACS if you are interested in this venue for your community or group.
The Celiac section of the NIH.gov website is a well written and easy to understand resource as is the book on Celiac Disease by Dr. Peter Green, a Professor of Medicine and Gastroenterology in New York City.
Shelly Case, a Canadian dietician, also has written a great reference on the essentials of a gluten free diet
There are also support groups in various CT communities that can be very informative and helpful if you are looking for practical assistance to manage your Celiac Disease.