I was diagnosed with lactose intolerance in 1990, but still had severe stomach pain. After reading your column, I went on a gluten-free diet and have been on it for a year. I am a new person.

I think I have probably had this all my life, and many times I have been very sick. I have had tests on every internal digestive organ and was always told there was nothing wrong with me. I have spent 10 years paying off all those tests that past doctors ordered with negative results.

Before starting the diet, I weighed 110 pounds, and my skin was hanging from my bones. I had lumps on my forearms and looked older than my nana did at age 100. I now weigh 115 pounds but have gained mass between my skin and bones. I have lost a lot of my wrinkles and look 20 years younger. I even found out that my eyeglass prescription was now too strong when I went for an exam because I could no longer read road signs.

I have spent hours researching celiac disease on the Internet but cannot find information on how far I might expect my body to heal. I have osteoarthritis, osteoporosis and was in need a hip replacement. I can now walk farther and faster before the pain starts than I could before starting the gluten-free diet. I just wanted to thank you for helping me so much.

DEAR READER: I am glad to have helped and am pleased to learn of your increasingly better health.
Celiac disease is a common genetic disorder caused by malabsorption of nutrients (owing to damage to the small intestine) and intolerance to gluten (owing to an allergy). It affects about one in every 133 people in the United States. Those with a first-degree relative who has been diagnosed are more likely to develop the condition. Of this group, about one in every 22 people has the disorder. It affects children and adults and occurs in every nationality. Celiac is also more common in those with other genetic disorders.

Gluten is a type of protein commonly found in wheat, barley and rye. Any products that contain these grains will also contain gluten. Some unexpected products that may contain gluten include medications, lip balms or vitamins.

Not all sufferers experience symptoms, which can occur within the digestive tract or other parts of the body, or they may be so mild that they are not troublesome. For others, they may be severe and debilitating. Children may have different symptoms than adults, experiencing weight loss, constipation, chronic diarrhea, abdominal pain and bloating, vomiting, irritability, growth and development delays, delayed puberty, dental enamel defects of the adult teeth, and pale, foul-smelling or fatty stools.

Adults often experience nondigestive symptoms, which may include seizures, arthritis, bone or joint pain, unexplained iron deficiency, canker sores, missed menstrual periods, fatigue, depression or anxiety, tingling/numbness of the hands and feet, infertility and an itchy rash known as dermatitis herpetiformis.
People who have no symptoms may still develop complications over time, such as malnutrition leading to anemia, osteoporosis, liver diseases and intestinal cancers.

As I am sure you know, following a gluten-free diet can be difficult and must include diligent label-reading and the purchase of special gluten-free products. Unfortunately, diet is the only way to control celiac disease. For most sufferers, this will stop symptoms, heal damage already done to the intestines, and even prevent further damage from occurring. It may take several years for the damage to be reversed in adults. In children, it may take three to six months. In some instances, the damage is so severe it will not heal. When this occurs, it is known as refractory celiac disease and can usually only be helped by receiving intravenous nutrients that are strictly gluten-free.

The best way to avoid gluten is to avoid all processed foods. Stick with lean meats, fresh fruits and veggies, and grains and starches, such as arrowroot, wild rice, soy, corn, rice and others that do not contain gluten. In this way, you can avoid encountering hidden gluten or foods that may have become “contaminated” when processed in a shared facility. It is also important to be diligent about what supplements, medications and products you use.

Anyone who wants to learn more about this condition should visit the National Institutes of Health’s Celiac Disease Awareness Campaign website at www.celiac.nih.gov.

I want to share my own sickness with you in the hopes that my experience can help someone else. I have Celiac Sprue and went through years of not feeling well and seeing many doctors before I got any answers. I learned that it is an allergy to the gluten in grains such as wheat, rye, oats and barley. I love baked goods and bread and baking was a family activity. I had to stop and learn how to use new ingredients.

In my town there is a “Sprue Club”. Many hospitals and libraries also have a lot of information for sufferers. I have found several excellent cookbooks written by Betty Hagman. I have also learned to read every label on store bought foods since I never know where I might find products with grains, flours and gluten.

DEAR READER:
Celiac Sprue can be a difficult condition to diagnosis, especially because symptoms are often embarrassing for patients to discuss with their doctors. Gas, bloating, abdominal pain, and diarrhea are common symptoms for many disorders. Therefore it is important to get a diagnosis.

You were right to continue looking for the answer despite several failed tries. Your persistence paid off and now you appear to be leading a healthful, productive life. I have published your letter to show other readers that help can be found and a normal life can be had, despite having this troublesome condition. I am also glad you mentioned reading labels because, in today’s society, gluten can be found in several unusual places such as soy sauce.

Any person who suffers similar symptoms should see his or her primary care physician for an exam and testing. These same symptoms can be the result of benign conditions such as irritable bowel syndrome or the result of more serious conditions such as ulcerative colitis or cancer. Knowing the cause and finding it early can make the difference between minimal or aggressive treatment, especially for potentially severe conditions.

Thank you for writing to share your experience and providing possible resources for help. For those with computers and internet connections, resources abound. Simply “googling” a medical condition can provide several reliable information websites and even link you with support groups, both virtual and in real life.

To give you related information, I am sending you copies of my Health Reports “Irritable Bowel Syndrome” and “Diverticular Disease”. Other readers who would like copies should send a self-addressed, stamped number 10 envelope and $2 per report to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

DEAR READER:
Celiac disease is a condition of the digestive tract that is triggered by eating gluten, a protein found in breads, pasta, pastries, and numerous other foods that contain wheat, rye or barley. When an individual with celiac disease eats foods that contain gluten, an immune reaction occurs in the small intestine that results in an inability to absorb specific nutrients contained in foods. While a problem for individuals of any age, it is particularly difficult for nutritional development in children.

Most people with celiac disease complain of diarrhea, bloating and abdominal pain, while others may not experience any gastrointestinal symptoms at all. Less obvious characteristics of the condition might include tingling of the legs and feet, skin rash, stomach upset, and more. This might be why your physician gave you information on GERD, since anemia, Crohn’s disease, gastric ulcers, and several other conditions mimic symptoms similar to celiac.

The specific cause for celiac disease is not known; however it is often inherited. Although it can occur at any age, problems will not appear until gluten is introduced into the diet. Trauma, stress, infection and injury have been linked to celiac disease. On the positive side, specific blood testing can be performed for diagnosis of the condition.

A rash commonly appearing on the elbows, knees and buttocks can also stem from intolerance to gluten. Known as dermatitis herpetiformis, this rash itches and blisters. It may not produce noticeable digestive symptoms. Treatment is a gluten-free diet.

Modify your granddaughter’s diet to eliminate all products that contain wheat, rye and barley. With this modification, she should be symptom-free.