What do you do next?
There are several nutritionally related concerns the diagnosing physician should address after diagnosis. These factors will have influence on the patient's attitude towards his/her problem, and his/her ability to cope. It will also enhance the ability of the dietitian to provide comprehensive care to him/her. The physician should: first provide a general synopsis of the GF dietary treatment. The primary grains that contain gluten are: wheat rye barley triticale spelt and kamut and oats. There were some short term studies done on oats, and recently a long term study on oats was done in Finland on well healed, uncomplicated celiacs.
The oats used were grown to be uncontaminated and were tested to be uncontaminated with other grains. The results showed no difference between oat eating and non-oat eating celiacs. The good news about oats is that if we could obtain oats that are uncontaminated by other grains, they may be safe for well healed celiacs in the short term according to one celiac expert. However, it is not possible to obtain uncontaminated oats in this country as of yet known, and it is even difficult to do so in some European countries. So we do not recommend using oats.
There are controversial grains: Sorghum, millet, teff, Jobs tears, and ragi are grains related to corn. Corn is known to be safe for celiacs. There are grains distantly related to wheat (in the grass family): These are: buckwheat, quinoa, amaranth, and rapeseed. All the grains known to be toxic for celiacs are in the grass family. Some experts claim that these grains are unlikely to be toxic to celiacs. However, the opposing view is that none of these grains have been tested, so it is not possible to be sure they are safe, so why take the risk?
Safe foods: Corn, potatoes, rice arrowroot, soy, tapioca, dried beans. Flours are made from all of these foods. Nebulous ingredients include (but are not limited to): vegetable gums and proteins, colors, (e.g. caramel color, ) The celiac and dietitian need to scrutinize all ingredient labels and discuss all these nebulous ingredients.
Is the Gluten Free Diet nutritionally adequate? Perhaps, if a person is eating a wide variety of foods and has a well healed gastrointestinal tract and no other dietary restrictions..
Reasons why people following a gluten free diet are at greater risk for nutrient deficiencies.
Fiber: Is the gluten free meal plan adequate in fiber? There was a study that showed that the fiber intake was adequate, but that the iron intake was lower, because the overall Calories decreased. The study participants on the gluten free meal plan had been instructed on how to get more fiber into their diet, which may invalidate the results. Additionally, adequate fiber intake is not necessarily a high priority in counseling a newly diagnosed celiac. There are greater priorities especially if the patient has gastrointestinal symptoms.
The imposed food limitations; the fact that gluten free foods are not always readily available; malabsorption, especially in newly diagnosed celiacs; and the existence of additional food Intolerances and/or sensitivities (which some celiacs have) contribute to the risk of inadequate nutrition.
American Diets in general: The January 1996 Position Paper by the American Dietetic Association reveals disturbing news. The average American does not come close to meeting the basic dietary recommendations for a well balanced diet. Considering all these factors, it is likely that for many, the gluten free diet of itself will not meet the nutritional needs of the patient.
Allergies and Food Intolerances: The most common food intolerance is lactose. The physician should examine the potential for lactose intolerance when the patient is diagnosed. The good news for many celiacs is that after two to three months of following the gluten free diet lactose intolerance may resolve. Lactose intolerance may be treated with the intake of fermented dairy products, i.e. yogurt with active cultures, hard cheeses, cottage cheese, and also digestive aids such as Lactaid droplets and milk, and Dairy Ease caplets and tablets.
Severely lactose intolerant persons may have to avoid all sources of lactose. Calcium and Vitamin D as necessary should be supplemented to augment inadequate calcium intake.
Soy is probably the other most common food sensitivity with celiac disease. How does soy sensitivity impact the celiac? Soy, like gluten, can be used to make ingredients, thus further restricting food selection. Because it is used as a base for many gluten free foods, this limits our ability to replete nutritional status. There are however, liquid supplements that are gluten, lactose, and soy free; such as Sustacal Plus, made by Mead Johnson. Osmolite and Ensure are supplements that are gluten and lactose free but they contain soy protein.
Deficiencies and/or biochemical imbalances seen in celiac disease which should be evaluated. We know that primarily the duodenum and proximal jejunum are the parts of the small intestine that are most frequently damaged in celiac disease, but ultimately any part of the small intestine can be damaged, and this can dictate what types of nutrients can be deficient in the newly diagnosed patient. Iron tends to be at the top of the list, there is also folate, which is extremely important because women of childbearing years need 400 mcg of folate a day, so this is a concern for a newly diagnosed women of childbearing years. You want to get that repeated right away to avoid potential birth defects if she does get pregnant. Calcium and vitamin D may be inadequate as well as all the other fat soluble vitamins. Fat malabsorption may occur through steatorrhea, and Vitamin B12 malabsorption may occur. Vitamin B12 deficiency occurs less often because of good liver stores, but if a person goes on for years malabsorbing B12, deficiency can result. Also, if a person has lost their intrinsic factor, pernicious anemia will occur. And compromised visceral protein status, indicated by hypoalbuminemia and decreased prealbumin levels can present Sodium, potassium, and chloride often fluctuate.
What are the considerations for vitamin and mineral supplementation? First of all, whatever deficiencies your patient may have, replete them. Additionally, there is a general recommendation for multiple vitamin-mineral supplementation in the celiac both during diagnosis and for long term. But it is wise that these nutrients do not to exceed 100% of the Daily Value 100% of the Recommended Daily Allowance for that particular individual. Certainly as a physician if you feel your patient needs more of a particular nutrient, that is certainly your expertise.. But you need to be aware that there are some side effects, or nutrient-nutrient interactions that can occur when taking nutrient supplements. One of them is iron. Oftentimes, the celiac may be recommended to take iron supplementation which can be great for those who are malabsorbing and for those who are iron deficient. However, men who are big meat eaters, are not iron deficient, and healed, as well as some postmenopausal women who are not newly diagnosed, and are well healed, get adequate dietary iron, and are not anemic, may not be appropriate to get supplemental iron. We know high iron stores increase the risk of cardiovascular disease, and some cancers. Additionally, folic acid in amounts greater than l milligram a day can mask hematological signs of vitamin B12 deficiency. And a large calcium intake can interfere with iron absorption while vitamin E can interfere with vitamin K action.
Prednisone, which may be used for those who do not respond to the gluten free diet therapy, can decrease calcium absorption and decrease glucose tolerance, increase protein catabolism, and increase the need for folic acid. Excessive thyroid hormones can block calcium from the bones, thus facilitating or exacerbating osteoporosis.
How can you provide your patient with gluten free vitamins and minerals? You can refer to your handout that addresses my particular presentation, and if your patient's needs can be met by any of these supplements, you might want to use them. Additionally, I found two other supplements that are great for patients that have steatorrhea, because they are water miscible or soluble forms of the fat soluble vitamins and gluten free. : Astra USA Inc. produces: Aquasol A drops and capsules, and also Aquasol E . All of these are water miscible Also, Nature's Bounty has water soluble vitamin E supplements, called Vitamin E 400. .
If your patients' needs cannot be met by any of these supplements, be sure to read the label of any other supplements to check for potential sources of gluten. If there are questionable ingredients, you need to contact the manufacturer referring to the lot number, to find out if it is really gluten free.
When prescribing medication for your patient, you want to be sure it also is gluten free.. Not all types of medications are formulated with gluten free products. But one way you can facilitate the provision of gluten free medication is to give your patient samples of any medications that you may have in the office. The reason for this is the package inserts will include a list of the inactive ingredients, so you and your patient can read through it and look for potential sources of gluten. If there are questionable ingredients, refer to the lot number and contact the manufacturer . If you do not have enough samples, and you need to write out a script for the patient to fill, refer to the PDR. Keep in mind, however, that the formulations may have changed since PDR was published. Drug formulations do not change as quickly as food ingredients do, because they must get FDA approval. It is always wise to contact the manufacturer and ask them if there are any ingredients derived from wheat, rye, etc.
Celiacs are more prone to bone derangements and these can occur any time from childhood to adulthood. These are manifested through rickets, bone pain, osteomalacia, osteopenia, and osteoporosis. They can result in gross deformities, or just short stature, or even in multiple fractures. Some studies indicate that bone mineral deficiency is more prevalent in those who experience latent celiac disease and in those who are noncompliant. Bone mineral deficiency is less likely to occur the earlier we get the patient diagnosed with celiac disease.
Molteni and his colleagues have found in one study that bone mineral deficiency can occur in asymptomatic celiacs, so we cannot go by what their symptoms are. People who are not treated or not diagnosed are certainly malabsorbing calcium.
What is the etiology of bone derangements? We are not completely certain, but we believe that calcium and vitamin D play a role. In fact, for many non diagnosed celiacs there is hypocalcemia. This condition overstimulates the parathyroid hormone which then affects vitamin D metabolism and bone resorption. The form of provitamin D is decreased and the active form of vitamin D is increased.
This increase in vitamin D can enhance calcium absorption, but it also accelerates bone resorption. So bones turn over their cells very quickly and perhaps the calcium absorption is not quick enough to maintain bone mass. For some treated celiacs there are higher than normal levels of activated vitamin D.
How does the gluten free meal plan play a role in bone mass maintenance? In one study, bone density was greater in treated celiacs than in untreated celiacs. However, the bone mass was still lower than in a group of non-celiacs. Children are very resilient, however. Children who are diagnosed and compliant have a greater annual increment of bone mass than non celiac children. Adults who were treated from childhood and are still compliant have bone mineral density equal to that of nonceliac adults.
We should definitely evaluate every new celiac for bone mineral density as soon as possible, and by means of a bone densitometry exam. This is to get a baseline, so we can either treat or prevent osteoporosis. Also, to prevent bone derangements, we should encourage sound dietary compliance, evaluate for lactose intolerance, discourage excess caffeine, alcohol, and smoking. Provide supplemental calcium and vitamin D. If your patient does have osteoporosis and you yourself are not an endocrinologist, it is wise to refer that patient to one. Consider hormone replacement for postmenopausal women. Encourage weight bearing exercise.
What do you do with a patient who cannot tolerate oral or enteral nutrition? If you decide to use parenteral nutrition, it is wise to consider that these patients may be at risk for refeeding syndrome. Refeeding Syndrome can occur in malnourished patients where dextrose infusion and subsequent insulin secretion can result in intracellular shifting of potassium, phosphorus and magnesium, thereby depleting serum levels of electrolytes, putting them at risk for cardiac or respiratory failure. Who is at risk for refeeding syndrome? Those with protein calorie malnutrition, the elderly, and those who have had excessive electrolyte losses due to emesis and / or diarrhea. To manage these patients, get baseline labs especially electrolytes, and replete fluid and correct any electrolyte imbalances before restarting nutrition. After correcting any imbalances, judiciously initiate parenteral nutrition, continuing to monitor parenteral lab data with emphasis on electrolyte and glucose tolerance.
There is a 5-6% occurrence of diabetes in celiac disease, and a higher incidence of celiac disease in Type I diabetes. To manage diabetic celiacs, closely monitor medications and modify them as normal absorption returns.
Have a Registered Dietitian involved.
Some challenges to managing diabetes in celiac disease include the following: Gluten free foods are not required to specify nutrient content on their labels, so it is often guesswork to accurately assess carbohydrate intake. Often, gluten free foods are more dense in some nutrients, such as carbohydrates as well as calories. And more of these may be ingested than one may realize. For instance, one slice of a GF bread weighs 57 grams and has 24 grams of Carbohydrate and 170 Calories while a slice of wheat bread weighs 30 grams and contains only 15 grams of Carbohydrate and 80 Calories. Also, celiac-diabetics need to keep gluten free carbohydrates on hand to treat hypoglycemia. These can include 100% pure fruit juice, such as Juicy Juice, in individual containers, to be kept in the glove compartment, or in one's desk. Milk or some types of Lifesavers or sugar packets could also be used for this purpose.
What social issues should be addressed with the patient? Emphasize what can be eaten, and even provide them with a simple starter meal including fresh meats, poultry, fish, fresh vegetables and fruits, potatoes, rice, cornmeal, rice noodles. And milk and plain yogurt if not lactose intolerant. Emphasize that they will have an improved sense of well being . Young children should become involved with their own treatment. This helps empower them and improves compliance.
My book, Celiac Disease And the Right Food Choices, offers positive suggestions for helping children live gluten free. Adolescents often become asymptomatic and stray from the diet. Do not try to instill fear in thereby explaining the increased risk of cancer with dietary noncompliance, which may make them rebellious. Get them to have a good rapport with a dietitian with whom they can meet regularly to address challenges based on their individual needs. Gluten free breads, etc. may be kept on hand and wrapped nicely in a picnic basket in the car. Link them up with a celiac-competent dietitian. and refer them to outside celiac resources such as support groups.
If the physician and dietitian work as a team, it is more likely that optimal treatment will be provided.
Summary: Outline the grains to avoid, evaluate for other potential food Intolerances, for nutrient deficiencies, bone mineral density, beware of the risk for refeeding syndrome and give special attention to the diabetic celiac. Be sure to address psychosocial issues so they feel when they walk out your door that they can cope with this. Leave them on a positive note.
The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.