1. Obtain information about a gluten-free diet A strict gluten-free diet is advised for life. Referral to an experienced nutritionist: This is an often-quoted initial post diagnosis management issue. Unfortunately, this is often an unrewarding experience for a patient because there are only a few dieticians/nutritionists very experienced in the gluten-free diet. These persons usually practice in Medical Centers with an interest in treating patients with celiac disease or may in fact have the disease. Physicians should familiarize themselves with some of the difficulties encountered by patients in trying to obtain the perfect gluten-free diet. Patients often feel that after diagnosis they are left out on a limb. They receive instructions like "go to the Internet" or are referred to dieticians with little knowledge of the diet. When patients are quite ill they are advised to eat a few safe foods, for example rice, baked potato, meat without condiments, and cooked vegetables. They should gradually diversify their diet as their knowledge base about a gluten- free diet increases. Eating commercially prepared food and at restaurants should initially be avoided. We have gathered together information as to the basic gluten-free diet (read more). Referral to National and Local Celiac Support groups: Most patients obtain information from support groups. Local support groups provide such resources as accompanying newly diagnosed individuals on shopping excursions. These local groups are often affiliated with the National support groups. The Internet provides another important recourse. Unfortunately, not all the information is scientifically sound. 2. Assessment of nutritional deficiencies Serum ferritin as a parameter of iron stores, folate and vitamin B12 levels need to be measured. When deficient, iron should be prescribed. Folic acid and vitamin B12 should be given only if blood levels are low. Vitamin B12 needs to be given by injection. Serum albumin and calcium need to be measured. A multivitamin and calcium supplements are reasonable for most patients, but benefit has not been assessed in any study. 3. Check that medications are gluten-free Because medications are taken on a regular basis, often at several times through a day, patients are advised to ensure that they are gluten free. This is usually accomplished by calling the drug manufacturer. 4. Obtain bone density determination Bone density is frequently reduced in patients with celiac disease and results in increased fracture risk. Bone density should be determined at the wrist, spine and hip. If there are reduced levels of parathyroid hormone, calcium and vitamin D should be measured. Vitamin D needs to be administered if levels are low. Treatment of reduced bone density in celiac disease consists of calcium supplements, with or without vitamin D, together with a gluten free diet. On this regime bone density will usually increase. Bone anti-resorption agents (for example Fosamax) have not been studied in patients with celiac disease. They potentially can cause a fall in serum calcium if administered when a patient has active celiac disease and should be reserved for patients who still have reduced bone density after an adequate period on calcium and a gluten-free diet. 5. Pneumovax administration Hyposplenism, or an inadequately functioning spleen, is common in active celiac disease. Because the spleen is important in fighting bacterial infections caused by pneumococcal bacteria, patients over the age of 50 years are advised to have the pneumococcal vaccine. This is usually repeated every 5 years. 6. Screen family members First degree relatives are advised to be screened. This is because the disease is common, about 1 in 10 family members have the disease, and it is considered that early diagnosis prevents the development of associated autoimmune diseases, osteoporosis and symptomatic celiac disease. 7. Monitor serum antibody levels Patients are advised to have follow-up antibody levels measured at 6 and 12 months. Most patients have normal levels by that time though it may take up to 3 years to normalize in some individuals. It is reasonable to assess antibody levels annually. This will serve to monitor adherence to the diet though is not sensitive for minor dietary indiscretions 8. Repeat duodenal biopsy A repeat biopsy is frequently performed to assess response to the diet, though it is not necessary for conformation of the diagnosis of celiac disease. Some experts recommend a biopsy during the first 6 months after diagnosis. However, if a patient is doing well on the diet, a repeat biopsy early in the course of the diet will serve little purpose. The biopsy may not show sufficient improvement. We recommend a follow up biopsy at about 2 to 3 years to assess optimal improvement. While many patients will have normal biopsies on these follow up procedures, some patients have persistent villous atrophy. This may be due to ongoing gluten ingestion. Patients who are not doing well on the diet, due to persistent abdominal complaints or diarrhea, may undergo earlier, or more frequent endoscopy and biopsy to assess the status of the celiac disease, or whether there are other complicating conditions such as collagenous sprue or refractory sprue. 9. General health measures Patients need to be aware that they are at somewhat increased risk to develop obesity and elevated cholesterol levels on the diet. This is probably due to several reasons. Gluten-free food may have more calories than regular food and absorption of food becomes more efficient in patients with celiac disease once this is treated with a gluten-free diet. Many patients are already overweight at diagnosis; this will obviously become a greater problem for these individuals. For some patients, elevation of the serum cholesterol also becomes a problem. This should be monitored and treated appropriately by diet and occasionally with medications. 10. Screening for malignancies Patients with celiac disease are at an increased risk for the development of some specific types of malignancies. A gluten-free diet is considered protective. After diagnosis and commencement of the gluten-free diet, the increased rates in most studies fall to that of the general population. There are currently no recommended guidelines for screening individuals with celiac disease for malignancies. It would seem prudent for patients to at least have an annual thorough physical examination and to have the stool examined for occult blood. |