Questions and Answers
Q: My question relates to cooking. I'm just beginning to learn how to convert to totally gluten-free. We are Italian and have always used a great deal of pasta in our diet. However, I'm having some problems in learning how to prepare corn macaroni and rice spaghetti and lasagna. For me, the corn products made a good mush and the spaghetti sticks together in one cake-like unit. [or, as my husband described it--bird's nest spaghetti tonight]. I called the company to get more help with the directions, but again it turned into bird's next spaghetti.
A: You are likely to do best working with another celiac cook in your town for some good help with technique and process ideas. However, I can share some basics that I use which may also be helpful. Most corn and rice pasta products will be cooked and ready for eating after 8 to 9 minutes of cooking time. Begin with a large cooking pot, add two quarts of water and then add two to three tablespoons of corn or olive oil, two scant tablespoons of white granulated sugar, and one half teaspoon of salt. There is no need to mix or combine these ingredients--that will happen in the heating. Place the uncovered pot over High heat; when the water begins to cook and gets to a rolling boil, then add the pasta product. [Do not wash the pasta product, do not rinse the pasta product, and do not soak the pasta product as you indicate you have been doing]. Just dump the dry pasta into the rolling hot water right from the sack. Immediately begin to stir lightly with a wooden fork or wooden spoon. Pull and push the pasta product to one side, stir under and get all of the pieces that may be sticking to the bottom of the pot moving and rolling in the pot.
When the water begins to roll a second time [with the pasta having been added], reduce the heat to Medium]. Continue stirring at least 20 to 30 seconds of every minute the pasta is on the stove or you may then risk having the pasta to bind or stick together. When the heat is on Medium, set a time for seven minutes and at the end of that time period , test a piece for doneness. If it seems about ready, reset the timer for another minute or two and then do one more quick taste test and next drain immediately. Drain through a sieve or just use a lid to hold the pasta in the pot.
Before removing the pasta from
the pot, add a scant tablespoon of corn or olive oil and mix lightly. You
may wish to add the cheeses and added seasonings you prefer at this time.
Two grated cheeses and a sprinkle of Parmesan work well for macaroni and
cheese. For spaghetti, you may wish to add the sauce in the serving dish
or at the table. For spaghetti and meat balls, it may work best to add the
meat balls and seasonings before removing from the pot. No pre-wash or
soaking, a high rolling boil for the water, near-continuous stirring, and exact
timing are key points in the preparation of gluten-free pasta. As you have
pointed out in your note, technique and method are important factors in the
preparation of gluten-free products. 
Q: I'm the only celiac patient we know in the area and it has taken be a long time to figure out a diet that works. This morning, my doctor's nurse called to ask me if I would help a newly-diagnosed patient from 42 miles away to get started on the gluten-free diet. Can you help with an outline of basics to follow?
A: Congratulations! You will do well and will have made a friend for life. My suggestions are as follows: try the following 5 considerations in working out the basics for a gluten-free prescription diet for/with a new patient.
1. Choose foods from the suggested dictates of a basic gluten-free prescription diet program; teach that it is critical to follow the exact details of the gluten-free diet as prescribed. [no cheating, no tasting, not ever just a little bit, learn to take better care of your "machine" than you do your car].
2. Add "prescription food and ingredient items" from specific needs that were represented [questions that resulted] and all that evolved from the diagnostic evaluation with the physician and follow-up consultations.
3. Add food and ingredient content items that fit into the categories of other intolerances, food sensitivities, and selected hypersensitivities which are typically in addition to the key problem of gluten intolerance [gluten-sensitive enteropathy]. Such intolerances might include lactose intolerance related to lactase; trehalose intolerance which relates to molds; seafood sensitivities which may relate to such food items as shrimp, scallops, and lobster.
4. Choose to be more that "gluten-free." Add specific food [ingredient] items which are beyond the dictates of the gluten-free diet; these food or ingredient items have no known gluten or prolamin content, but cause problems and/or a similar reaction pattern to that of gluten intolerance.
5. Choose a diet that is unique for you, that is your prescription. Do not make the mistake of following or "taking" someone else's "medicine." Each patient's pattern of reactions, their condition, their illness--is different is unique to them, their patterns are different and need to be treated with their prescription of foods for the formulation of their particular version of the gluten-free diet. A food or ingredient that works for one patient may mean intolerance [or other problems] for the next well-meaning celiac.
Your illness has the same name, but has differing levels and different aspects that may require a different selection and combination of ingredients and food items. Treat your own needs, your own version of the illness in your diet--not the needs of someone else. When you meet the celiac patient who pays no heed nor attention to items 2, 3 and 4 above, uses wheat starch, oat meal and any shortening available, congratulate him or her, but go home and renew your dedication to stick to the basics of the gluten-free diet that fits you. Never make the mistake to think that the grass is greener on the other side of the "gluten-free diet fence"--stay in your own pasture!
It is often helpful for the new patient to work out 20 foods that fit their version of the prescription diet. In addition, it may be helpful to work out menu items for meals--especially for breakfast. And, to share where these foods are readily available. Help them to get started with one or two of the commercial food companies who support gluten-free diet selections. Do not omit how these foods should be prepared--with which shortenings, with which seasonings, flavorings and additions. Plan a few snack items, drinks, and desserts. Help with suggestions of two or three food selections available at most restaurants. Talk more about the thousands of foods available rather than what is not available to the gluten-free diet market. As you teach food selection for the gluten-free diet, also teach attitude. How the new patient learns to see the diet and how they see themselves in relation to the diet are often paramount factors in how they are likely to handle the illness.
It is typically difficult to teach [and likely more difficult to accept] that each commercial food company may be operating with their own version or definition of what is gluten-free. At this time, we do not have a common definition for the meaning of gluten-free and we have no general acceptance of ingredients to be included or excluded from the gluten-free diet. The findings of several studies indicate that many foods are contaminated with wheat or other gluten-containing cereals, and more importantly stresses the need for manufacturers to improve quality control in their plants, and to accurately label those foods to which gluten-containing ingredients are added. At this time, there is no reward system for companies that are doing a good job and there is no penalty system for units that are not following the dictates of gluten-free.
The celiac patient needs to
choose a prescription diet with no gluten [prolamin]; this becomes paramount
with the knowledge that even small amounts of gluten can increase the risk for
osteoporosis, malignancies, the development of other autoimmune conditions and
related complications. A critical concern is that continued ingestion of
gluten may predispose patients with celiac disease to neoplasia, including small
intestine lymphoma and carcinoma of the oropharyns and esophagus. That
these conditions are markedly reduced in patients who follow the definitions of
the gluten-free prescription diet provides strong support for adherence to a
strict gluten-free diet for life.
Q: I have 7 versions of the gluten-free diet: one from my physician's office, a different one from each of our two hospital dietitians, yours, listings from two other celiac organizations and one from ADA. How did we get to this point--with nobody knowing for sure how to get to the North Pole?
A: I like thinking through this dilemma with parts of an answer from the late Dr. Constance Kies, a Ph.D. nutrition and food researcher at the University of Nebraska-Lincoln. She would often state that we likely only have about 3 percent of the research information on foods and their ingredients in the knowledge base at this time. This leaves the other 97 percent out there and yet to be discovered. This leaves us with making decisions for the dietary needs of a celiac patient based on a 3 percent base of knowledge. There is so much to be learned and so much that we just don't know. Yet we must live and eat at this time for our livelihood and existence.
We move ahead with the use of both a factual research base of knowledge from controlled studies available and with an action research base of knowledge--the latter being experiential with patients and with observations of patients that indicate a particular point of information appears to be true for an individual or group of individuals. We then note these concepts and observations from both areas of research and offer them for the review and consideration of all patients. The task of the patient is to learn the needs for his own illness and with the help of a physician, dietitian, pharmacist--develop a prescription gluten-free diet for his particular version of the illness.
Of paramount importance in working out a definition of the gluten-free diet is the concept that "one size doesn't fit everybody." Each patient has a different and differing set of needs. In actuality, each patient has a different illness. With a different illness, each patient has the need for his or her own individualized version of the gluten-free prescription diet. Dietitians and celiac organizations help in developing a basic and general overview of the gluten-free diet, the basic philosophy for the diet, the overall umbrella needs for the diet, but the final actual prescription diet for each celiac patient needs to be set up specifically for that particular patient.
In making diet selections for the gluten-free diet, we typically urge celiac patients to err on the side of conservatism--to make mistakes on the side of being too strict. In addition, we teach "when in doubt, leave it out" as a basic guideline for food [ingredient] selection. With celiac disease, anything can happen and usually does--especially when there is non-adherence to a personalized prescription for the treatment of celiac disease.
With a developing knowledge
base, with a limited knowledge base, with many and varying differences and
complications in a complex illness, we then all have a goal of sharing what we
have learned and observed for a general overview for the gluten-free diet.
There are no pat and easy answers for defining the diet. There is no
instant cure. While diet remains the present known treatment, we are not
in an exact science and we are likely light years away from any so-called right
answers. We all hope and trust that we are on the way, and we all know
that we haven't arrived.
Q: Can drinking diet soda and using artificially-sweetened foods or drinks relate to diarrhea or other celiac symptoms?
A: Selected sweeteners may be based on grain protein content, so it the right amounts, these sweeteners could trigger problems. A sweetening agent such as sorbitol is reported in the literature to cause diarrhea in selected individuals. Second, some few celiacs may have [or can develop] a sensitivity to either the base ingredient for the sweetener, sorbitol or one of its components. Sensitivity for sorbitol and any of the several sorbates, for example, would preclude the use of a number of foods common in the market as well as the use of several toothpastes.
For
most celiacs, a simple diet elimination program may be helpful in learning if a
particular ingredient such as a sweetener is a trigger for overt and noticed
symptoms. Eliminate the suspected substance from the diet for three weeks
[or up to a month]. If the diarrhea subsides completely, the excluded food
is reintroduced as a challenge, and if diarrhea recurs, there then is a distinct
possibility the diarrhea is secondary to the suspected agent. In most
studies, the suspected substance is repeated a minimum of two times before
concluding it is a diarrhea-causing agent. As a conservative dietary
guideline, celiacs should move toward avoiding foods containing artificial
sweeteners whenever that choice can be made available to them. Use regular
soft drinks sweetened with granulated sugar and with no additives; use less of
them if that is a need for your weight management program.
Q: I've gone back to my regular vitamins; when there were no problems, I went off the gluten-free diet and have not had any symptoms.
A: Some of us as celiacs resent the dietary restrictions of the prescription gluten-free diet and may then make the choice to cheat on non-allowed medications and foods or go off the diet altogether. To their surprise, some of these patients may not observe any change in overt symptoms or in any aspect of their overall well-being. As a consequence, they extend their food intake to anything in the marketplace. But sooner or later, if the diagnosis of celiac disease was correct, symptoms of malabsorption will recur. Unfortunately, for the patient who has followed a gluten-containing diet for a period of time, there may now be both overt and covert symptoms. Those might include additional problems in and with the celiac condition; perhaps the addition of new symptoms or another autoimmune condition, and there could be added infection-related problems or selected cancers that have already been manifested or that will develop. The critical concern is that continued ingestion of gluten may predispose patients with celiac disease to neoplasia, including small intestine lymphoma and carcinoma of the oropharynx and esophagus. The patterns of additional symptoms, new and old problems, and the renewed intensity of the celiac condition appear to vary with each patient.
The message from research is very clear, however. The
patient diagnosed with the celiac condition should find and discover the most
appropriate prescription diet selections that meet the needs of their particular
version of the illness. Once a celiac, always a celiac; once on the
gluten-free diet in response to diagnosis of gluten intolerance, choose to
remain on the diet. The present known treatment provides strong support
for the practice of advising all patients with celiac disease [non-tropical
sprue] to adhere to a strict prescription gluten-free diet.
Q: When do basic symptoms of celiac disease reoccur? I have been gluten-free for about six years and now I seem to be starting all over with the illness.
A: For some individuals, the basic gastro-intestinal symptoms, weight loss or nutritional deficiencies may reoccur after an initial good response to the prescription gluten-free diet. This kind of situation should always be evaluated in conjunction with a physician review and may turn out to be a long-term study involving detailed evaluation along with some good detective work. The answer may be evasive and is often not an easy one, so the patient needs to join in the evaluation process and not be quick to self-diagnose nor lose faith in what may be a detailed medical process. A few of the possibilities for a recurrence are included in the following listing. However, this is only an elementary beginning listing. A detailed response would need to be worked out with a physician who knows both the condition and the patient involved.
1. Inadequate Prescription Diet. An inadequate exclusion of gluten is a common cause of failure to respond or for a recurrence of symptoms for many patients. The inclusion of gluten in the diet may be accidental or intentional. Gluten-restriction must be exacting and strict and long-term. There is no such thing for an auto-immune condition such as non-tropical sprue that a little bit [a minute amount of gluten] may not hurt or influence the condition. Accidental inclusion of gluten in the diet may easily occur. Offending glutens are in a variety of unexpected foods. Going back to a basic 15 to 20 [known to be acceptable] foods with an exacting review of all dietary in-take may be productive when basic sprue symptoms reoccur.
2. Lactose Intolerance. Lactose may be a factor in diarrhea symptoms that are slow to respond to the gluten-free diet. Poor absorption of dietary lactose can contribute to intestinal symptoms. Or, it could be a diarrhea that returns with a mild degree of intestinal injury. In addition, some people lose lactase enzyme as they get older, thus milk may cause diarrhea [but not malabsorption of fat or protein] even when the sprue is under good control.
3. Vitamin Deficiencies. Vitamin deficiencies are common in active celiac disease. These deficiencies generally correct as the mucosal lining of the small intestine returns to normal and is seen as "healed." Although for some patients, this process may take a longer time. Deficiency of B-vitamins, folic acid, and vitamin B-12 may result in diarrhea or even in a degree of malabsorption. Most vitamin deficiencies and absorption levels can be readily evaluated by a physician and easily treated. Thus, the celiac patient may need to be proactive and ask to have these evaluations with an annual physical or when problems are suspected.
4. Concurrent Illnesses. The association of a concomitant illness in addition to celiac disease may occur. Any of several autoimmune conditions may also be present and need their own pattern of treatment. For example, diabetes and celiac sprue may occur together. Diabetes can also result in diarrhea, weight loss, and malabsorption. Irritable bowel syndrome is a condition in which muscle activity of the bowel is not normal. It can result in diarrhea [but not malabsorption], constipation, and abdominal discomfort. It can mimic the possibility that sprue has reactivated. Also, there are a variety of gastrointestinal infections that can give the appearance that sprue symptoms have recurred.
5. Wrong Diagnosis. The erroneous diagnosis of celiac sprue would be a possible explanation for initial long-term failure of a gluten-free diet to alleviate a patient's malabsorption. While celiac disease is the most common cause for flat mucosa, there are other conditions that may also produce this appearance. Some biopsy features suggesting celiac sprue may be seen in several viral or bacterial infections, high acid secretion, radiation treatment, lymphoma, and several other uncommon diseases. Thus, the suggestion of the physician generally includes follow-up with a second biopsy and that there be improvement in villi observation following a strict observance of the gluten-free diet. [overall improvement on the diet and overall improvement in the appearance of the villi].
6. Long-Term Nutritional Deficiencies. If nutritional deficiencies have been present over a prolonged period of time with or without treatment, it may be that full growth potential, full healing, normal bone strength may not be possible. With other related and non-related conditions and infections, there may also be less potential for a full recovery with a full regeneration of villi.
7. Complications. Selected associated complications may also need to be considered when a sprue patient is no longer responding to the diet. Collagenous sprue is a rare condition that is characterized by a layer of collagen or fibrous tissue beneath the intestinal absorptive cells. Refractory sprue simply refers to active mucosal disease that no longer responds to the gluten-free diet. Ulcerative jejunitis is a term for active bowel inflammation and ulceration that can complicate celiac disease. These conditions are quite uncommon, are difficult to treat, but sometimes do respond to steroid treatment patterns. The potential of lymphoma and carcinoma, while always mentioned and always are on the list of possibilities, are likely to be a low risk problem.
Summary
Statement. It is reassuring to know that most celiac patients do very
well on the prescribed diet. The diet is a good one. The diet makes
celiac disease manageable. While patients are expected to move to
self-management, there is often the need to admonish against self-diagnosis and
the associated need to emphasize the development of a partnership with a
monitoring physician in which there is good communication. A simple chat
can often lead to a simple solution when problems appear to
arise.
Q: We had trial samples of the new vanilla coke at a friend's house last weekend. It tasted so good. But I'm not doing too well even after three days of diarrhea. What do you know about this product?
A: A check with Consumer Services at a company office in Atlanta, Georgia may not have provided a final answer to your question. It is possible that you may have had a reaction to a sweetener being used and it is possible that you could be reacting to the vanilla mix [or one of its ingredients] that is added to achieve the vanilla-flavored coke. Until a listing of ingredients can be further analyzed, it may be best for you to stick with regular Coke and not try any of the other artificially- or naturally-flavored coke products.
At this time, we do not have adequate
information to provide an answer to your question. As a rule of thumb, you
will likely always to best NOT to consume a product for which you do not have
good information. And, for good measure, you may wish to always have a
complete knowledge of and about artificial flavorings. When in doubt,
leave it out remains a safer route to prescription needs for your
diet.
Q: With some hair loss, considerable weight loss, almost full-time nausea, my physician is questioning whether I may be taking too much vitamin A. He is helping me to reformulate my dietary intake and is against my taking the food supplements and the extra vitamin A that I have been on for the past year. What can you tell me about vitamin A?
A: Vitamin A was the first vitamin discovered [hence the name "A"]. Yet after 60 years of study, the exact way this vitamin works in the body remains unknown.
Vitamin A exists in three forms within the body. Each of these forms apparently has different functions. Vitamin A is considered essential for at least three different functions--vision, growth, and reproduction.
Vision. The role of Vitamin A in vision is the only one that has been defined. Vitamin A combines with a special protein in the section of the eye that is responsible for vision in dim light. Without vitamin A, the ability to see in the dim light of evening, or at night, is lost [and or diminished]. The result of this condition is referred to as "night blindness." It is a common symptom in celiacs who may have mal-absorbed vitamin A previous to diagnosis and getting onto an adequate diet regimen.
Growth. Vitamin A functions in two areas of growth: development of bones and maintaining healthy skin tissue. Bones may fail to grow to the proper length with a vitamin A deficiency. Vitamin A is needed as well for healthy skin tissue. Skin cells are constantly being replaced. Therefore, the need for vitamin A in maintaining healthy skin is constant. Without adequate vitamin A, hardened, dry cells replace normal healthy ones.
Reproduction. The need for vitamin A in normal reproduction in animals was defined early in the investigations of the role of vitamin A. Without vitamin A, male animals become impotent, and females do not maintain a normal pregnancy.
Other functions. Vitamin A is needed for the proper functioning of certain enzymes and is needed for proper perception of taste. In vitamin A deficiency, there is a lack of appetite due to changes in taste buds on the tongue.
Deficiency. Symptoms of vitamin A deficiency include night blindness; changes in the eye that can lead to blindness if not corrected; dry, rough skin; diarrhea; loss of the sense of smell and taste; and, a greater susceptibility to respiratory infections.
Food sources. With the exception of a very low amount in spinach, preformed vitamin A is found in foods of animal origin. A series of compounds called carotenes are present in vegetables. These compounds are converted within the body to vitamin A. Rich sources of vitamin A are to be found in fish, liver oils, and in liver.
Requirements. Vitamin A is a fat-soluble vitamin that is stored in the body. The daily recommended dietary allowance has been at 5,000 international units [IU] for an adult male; 4,000 IU for an adult female; for the female this is increased to 5,000 IU during pregnancy and to 6,000 IU for nursing and lactating mothers.
Potential Danger. For individual reasons, many people take a vitamin A supplement. Because vitamin A is stored within the body, it is possible to take too much. however, there is a wide individual difference in sensitivity to high levels of vitamin A. Some people show symptoms after taking 50,000 IU per day over a long period of time; others show symptoms only at levels of 150,000 to 200,000 IU per day.
Symptoms. Symptoms of too much vitamin A vary and may be unique to each individual, but can include headache, drowsiness, nausea, diarrhea, weight loss, and loss of hair. Taking an excess of vitamin A [any amount above the recommended dietary allowance] may best be done under the guidance and monitoring of a physician knowledgeable in nutrition.
Perspective.
Before taking on extra vitamin A through vitamins or specific supplementation,
it may always be best to have documentation of need supported by blood tests and
the interpretation of a physician that the need exists and should be treated
with extra vitamin A both in the diet and through appropriate
supplementation. Most physicians will do this via consultation and
prescription. Thus, the diagnosed celiac would then be following the
prescription gluten-free diet and the added prescription definition for added
supplementation of vitamin A.
Q: What is gellan gum and is it okay for me as a celiac to use products that contain gellan gum?
A: Our reference indicates that gellan gum received FDA approval in September of 1990 for use as a stabilizer and thickener in frostings, icings, glazes, and non-standardized jams and jellies. Gellan gum is derived from a carbohydrate and is produced by a microorganism similar to that used for xanthan gum. When used in products, is produces a clear gel an is heat stable. Icings and glazes prepared with gellan gum produce a non-sticky, smooth, and shiny surface. Gellan can replace low-methoxyl pectin used in non-standardized jams and jellies and allows fruit flavor release, processing stability, and clarity.
Two
questions might remain for you: Are you carbohydrate sensitive? Are
you mold sensitive or have you been diagnosed with trehalose intolerance?
If you are either carbohydrate or mold sensitive, then gellan would likely be a
non-allowed ingredient for inclusion in your prescription gluten-free diet.
Q: What can you tell me about folic acid? Is it in everything?
A: To look at an answer related to your question, we need to consider what the FDA lists as standardized and non-standardized foods, [the so-called standards of identity]. We can get a part of the answer from a March 5 listing in the Federal Register in 1998.
Under a final rule published in the Federal Register, the Food and Drug Administration amended federal standards of identity to require the inclusion of folic acid in most enriched bread, flour, corn meal, pasta, and rice products to reduce the risk of neural tube birth defects. In addition, the Canadian government has proposed that the level of folic acid enrichment in that country be raised to the new level required in the United States and that folic acid become one of the mandatory nutrients for flour enrichment and for enriched pasta.
The addition of folic acid to non-standardized foods is now optional under both U.S. and Canadian regulations.
Foods required to be fortified with folic acid as of January 01, 1998, [those under the standard] under the new U.S. regulations include: enriched bread, rolls, and buns, 0.43 mg per lb; enriched flour, including enriched self-rising and enriched bromeated flour, 0.7 mg/lb; enriched macaroni products, including enriched non-fat milk macaroni products and enriched noodle products, 0.9 to 1.2 mg/lb; enriched corn grits, 0.7 to 1.0 mg/lb; enriched corn meal, 0.7 to 1.0 mg/lb; enriched farina, 0.7 to 0.87 mg/lb; and enriched rice, 0.7 to 1.4 mg/lb.
[For the celiac, it is important to note the rice products marked enriched have been enriched with folic acid at the rate of 0.7 to 1.4 mg per lb. It becomes important with selected rice products to learn what was used to add the enrichment for rice products being consumed as a part of the prescription gluten-free diet].
Breakfast cereals may contain folic acid at levels up to 0.4 mg per serving. Many ready-to-eat cereals now voluntarily carry up to 2.5 percent of the recommended daily consumption level of folic acid. Dietary supplements and infant foods will be the only other products to which folic acid may be added.
These fortification levels are
designed to help women consume the medically recommended 0.4 mg [400 micrograms]
of folic acid while keeping daily intake of the vitamin below 1 mg. Higher
intakes may mask symptoms of pernicious anemia, a form of vitamin B-12
deficiency that primarily affects older persons, according to the physician
consulted.
Q: I'm questioning if I might be deficient in folic acid. Are there general symptoms that I need to consider? What vitamins should I take?
A: To check out a potential folic acid deficiency or any potential need for treatment or changes in diet, discuss this concern with your physician. It is likely that an appropriate blood test and evaluation will help to give an answer to your question. Additional evaluations and follow-up may be warranted. Then, carefully follow those conclusions an directions.
If you have celiac disease, you are likely to be susceptible to folic acid deficiency because of your particular version of this malabsorption syndrome. You may not be able to absorb sufficient amounts of folic acid even if it is plentiful in your diet. However, when celiacs follow the basics of the gluten-free diet, their susceptibility to folic acid deficiency is greatly reduced. [And may never occur]. Thus, an evaluation of your particular version of the gluten-free diet may also be in order. Food intake and food combinations may be important to and for such an evaluation. A food diary and a diary of accompanying symptoms may need to be a part of the evaluation. Be sure you are on a strict GF diet plan.
The main symptoms of folic acid deficiency anemia are usually close to those of other anemias. They may include paleness, fatigue, shortness of breath, and palpitations [or heart fluttering] particularly if you exert yourself.
Some of the other overt symptoms of anemia may include: sore mouth and tongue, yellow skin color, tingling in hands and feet, lack of balance when walking, memory loss, confusion, and depression.
Most textbooks list folic acid as a collective term for pteroylglutamic acids and their oligoglutamic acid conjugates. Folic acid is thought to be a part of one or more of the amino acid sequences of gliadins; and, is a part of the vitamin B complex series necessary for the normal production of red blood cells. It is present, with or without glutamic moieties, in peptide linkages, and in liver, yeast, and green leafy vegetables. It may be a part of the pattern of therapy used in treating pernicious anemia, macrocytic anemia, celiac syndrome, and sprue. Dosage levels and patterns of therapy need to be developed for each patient and require careful monitoring.
The results of treatment with folic acid appear to depend on the chronicity of the intestinal lesion for that particular patient. Treatment can be curative for those persons who have had celiac disease for only a few months, but intestinal structure and function may not return to normal until after one or two years of therapy.
The addition of B
vitamins and/or other nutritionals may not be the whole answer for a problem
that involves malabsorption or lowered absorption of folic acid. Patients
are well advised not to respond to 4-color posters found in health food stores
that represent and easy road to cures for an anemia. Seek out medical
advice and direction for evaluation and follow-up. Work with your medical
team to develop a plan of action. Follow up carefully with monitoring and
perhaps a re-evaluation if that should be deemed necessary.
Q: I'm a well celiac doing well on the diet with one overwhelming exception. I'm always 40 to 50 lbs overweight. Before I began to include low-fat products I was only 20-some lbs over the limit. Now I'm out of the ballpark. What has gone wrong?
A: The food industry created low fat and nonfat foods in response to a federal goal of producing more than 5,000 reduced-fat processed food products by 1998. Many of us consumed these products with the intent of eating healthier and cutting intake.
The trouble is that we ate large quantities of these foods, some of which had more calories that full-fat foods. Some people were eating less fat but were taking many more calories. Excess consumption of calories is a significant factor in obesity. Weight loss efforts for good health involve consuming both less fat and fewer calories--and especially less calories.
Some of the low-fat and nonfat foods can be useful additions to the diet effort to lose weight. Not all reduced-fat food products are alike, however. Fat-free and reduced-fat milk, for example, can be a daily part of a healthy diet because milk is an important source of calcium. [if milk is allowed in your diet]. In real life, however, people sometimes assume that they can use or eat more of a reduced-fat food simply because it is "lower in fat content." This is particularly evident in consumption of reduced-fat chips, dips, cookies, baked goods, yogurts, candies, and ice creams.
Pay attention to calories and your calorie-intake; pay attention to serving sizes and portions and how much that you actually consume in one day or at one meal. Do not concentrate only on the grams of fat being consumed. Read the food label for content of both fat and calories. Know that carbohydrates will add up--and fast!
Set aside the serving size or portion you are going to eat when sancking or eating a meal. Close up the sack or container and put that food away. This means taking a reasonably-sized portion out of the bag of chips, placing the scoops of ice cream in a dessert plate--not eating out of the container.
Note also that fat replacers used in low and nonfat foods are not a panacea for weight control. It is not certain that nay of these foods provide any health benefit.
For the overweight celiac, it may be a better choice to eat regular foods and just eat less. And to make a good judgment about how much ahs been eaten and make sure that there is enough exercise to burn off those calories [plus a few more if that is what is needed]. If there is no time to do the exercise needed, then there is not enough time to eat it, may be a rule of thumb to adopt.
Since the research is not yet in, all fat replacers [and selected artificial sweeteners] are on the highly questionable list--especially for those persons with autoimmune problems. Thus, many of the low and nonfat foods could also be questionable or on the not allowed listing for the prescription diet of the celiac patient.
Note the following research report: Eat less, Live longer.
The secret to living a longer life may be to spend much, much less of it eating. Researchers at the National Institutes of Health studied 120 rhesus monkeys [with whom we share 90 percent of our genes] for 15 years, and found that animals that were fed 30 percent less than the control group, who were fed a regular low-fat diet, lived about 30 percent longer and suffered fewer age-related diseases.
Calorie restriction has been
shown to increase longevity in rats, guppies, spiders, dogs, water fleas, and
yeast. If humans consumed a similarly restricted diet, could we live to be
150? Would it work? "I'd be shocked if it doesn't work in
humans," Massachusetts Institute of Technology biologist Leonard Guarente
told The Wall Street Journal. But is it practical? The U.S.
Department of Agriculture recommends that the average sedentary woman eat 1,600
calories a day and the average sedentary man eat 2,200 calories. On a
restricted-calories diet, a woman would eat only 1,120 calories a day and a man
1,150. An average meal at McDonald's contains 1,450 calories.
Q:
A concern to many celiacs is the indication of an increased risk of
lymphoma--a form of cancer. Can you
comment, please?
A: The research to date indicates there is some increased risk, but not as much as was once thought to be the case. It is important that a physician monitor patients since there are screening methods (not 100% accurate) to access the possibility of a concurrent malignancy. From numerous research reviews, we learn that the greatest protection factor which celiacs can apply is strict adherence to the gluten-free diet.
Q:
Is there a relationship between celiac disease and arthritis?
A:
No, not the arthritis of adult years.
Both conditions, however, are considered autoimmune diseases.
In the critical phase of celiac disease, some joint pain may be related
to the intestine’s rejection (or malabsorption) of food. In the older person, problems of arthritis and osteoporosis
are not thought to be related. One
is located in the joints and one is in the bones.
Q:
Are all forms of diabetes mellitus autoimmune diseases?
A:
No, the more common form of diabetes is caused
by insulin resistance and is not autoimmune; it is generally referred to as
non-insulin dependent diabetes and is sometimes called Type II diabetes.
Only about 10 percent of the cases are autoimmune; these are the cases that are
referred to as insulin-dependent diabetes and are also referred to as Type I
diabetes and juvenile diabetes. Present diagnosed cases of persons with
celiac disease who also have Type I diabetes is represented to be less than 2
percent of the total number of diagnosed celiacs by [NIH] National Institutes of
Health data.
Q: What are the symptoms of Crohn's Disease?
A: Crohn’s
Disease is a chronic inflammation involving any part of the intestinal tact, usually
the small intestine where it joins the colon (terminal ileum).
It
may, however, involve any part of the entire alimentary canal from
mouth to anus.
While both conditions are autoimmune diseases and both may run in the
same family bloodlines, Crohn’s Disease is not related to Celiac Disease and
the gluten-free diet is not beneficial.
Crohn’s
often is manifested by abdominal pain and diarrhea, but is typically
complicated by intestinal fistualization or obstruction or both.
The diagnosis of Crohn’s is established by history, X-rays of the
intestines and /or endoscopies with biopsy. The
most frequent mucosal lesion found in the intestine of a patient with active
Crohn’s disease (as with ulcerative colitis), is crypt injury.
This injury takes the form of cryptitis and subsequently crypt abscesses
consisting of polymorphonuclear cells. Treatment
is difficult because the etiology of the disease is unknown.
Various drugs utilized are intended to suppress the body’s
reaction—inflammation—to the disease. Typically
no drugs are 100% effective. Surgery
may be used to relieve complications of the disease, but unfortunately may not
cure the problem.
Q:
Is there a genetic relationship between celiac disease and thyroid
disease?
A:
Clinical studies supported by laboratory studies indicate a genetic
or inherited predisposition to celiac disease and to certain kinds of thyroid
disease. However, a strong
relationship between celiac disease and thyroid disease from a genetic aspect
has not been recognized. There are
multiple reports or research studies of patients with both celiac disease and
thyroid disease. (more typically hypothyroid,
an under active action of the thyroid).
Q:
Is there a connection between gluten intolerance and vision problems?
A:
There is no recognized, direct association between disturbances in
eye function and celiac disease. There
are, however, indirect relationships as the consequence of
malabsorption—especially of Vitamin A, during the active phase of the disease.
Vitamin A deficiency is associated with the development of impaired vision at
night, so-called “night blindness.”
Q:
Do persons with celiac disease seem to have a problem with regulation of
their body heat? I have cold hands
and feet even when I am warmly dressed day or night.
A:
The subjective sense of heat and cold is frequently unassociated with
changes in recorded body temperature and is not specific for any disease
process. Such problems do commonly
occur in persons with thyroid disorders, during the transitional period of
menopause, during or following emotional disturbance states, and in people who
are undergoing a change in weight. Usually
patients who are losing weight will experience sensations of cold, and people
who are gaining weight, especially above the upper limits of normal weight, will
complain of excessive heat. There
is not thought to be a specific relationship to celiac sprue.
However, an accompanying thyroid condition along with the celiac
condition may be quite relevant to having cold hands and feet.
Q:
What can you tell me about peripheral neuropathy [tingling and numbness
in my hands and feet] that occurs mostly at night?
A: Diffuse numbness and tingling are symptoms that may be the result of a peripheral neuropathy. There are many causes of peripheral neuropathies, among which are vitamin deficiencies. The lack of the B group of vitamins (water-soluble) is frequently associated with these symptoms. Deficiencies of the fat soluble vitamins (A, D, E and K) are more commonly seen in non-tropical sprue [celiac disease] because of the marked impairment of fat absorption during active phases of the disease, and therefore, the loss of these vitamins in the stool.
If the peripheral neuropathy features of numbness and tingling are secondary to vitamin deficiency, relief is usually obtained by injection of the deficient vitamins or, with restoration of small bowel function, oral administration of the appropriate vitamins. In situations of a prolonged vitamin deficiency, such as Vitamin B-12 and folic acid, the symptoms may persist despite vitamin replacement. In addition, because factors other than vitamin deficiency may give rise to peripheral neuropathy symptoms, the oral or injectable administration of these drugs may not be associated with any benefit.
Primary care physicians can manage most of the nutritional deficiency
based peripheral neuropathy symptoms. If
the problem is complex, a neurology consultation may be required.
In most cases, it is best to work with a team of physicians which
includes both the gastroenterologists and the neurologist.
Q:
What is the cellobiose-mannitol test and how does it related to the
diagnosis of celiac disease?
A:
The test measures the permeability of the small intestine mucosa to
different size molecules (cellobiose, large; mannitol, small).
In untreated celiac disease, the mocosa is more permeable to large polar
molecules and less permeable to small polar molecules.
The two molecules are given simultaneously.
They are absorbed intact, not metabolized and excreted in the urine
(5-hour collections). The relation
of cellobiose-mannitol to urine excretion is increased in celiac disease (as
well as in regional enteritus) relative to patients with normal small bowel.
The test is considered to be more sensitive and more specific than the
D-xylose absorption test.
Q: What is the D-xylose test and what contribution does it make to the diagnostic evaluation for celiac disease when it is used?
A:
D-xylose is an aidopentose (5-carbon sugar) which is not normally
present in the diet. Approximately 50% are absorbed intact from the upper small
intestine. It is poorly metabolized
and approximately 50% of the absorbed amount is excreted in the urine intact.
Most adult celiac patients with active disease poorly absorb sugar;
therefore blood levels and urine excretion of D-xylose are low in most but not
all patients. The test is used as a
screening procedure for small intestine malabsorption disorders but is not
specific for celiac disease. Its
sensitivity for detecting celiac disease in children is less than in adults.
The test may not be included in the evaluation for the diagnosis of
celiac disease.
Q:
Can a woman with celiac disease who is on a gluten-free diet and doing
well expect to have a normal pregnancy and delivery?
A:
If the nutritional status is good to excellent and there are no other
medical problems, the risk factors should be no greater than those for women in
the general population in the same age group.
Q:
What about leaky gut syndrome?
A:
Two conditions cause alkaline phosphatase to increase in the
blood—liver hepatitis or the disease of the bones called osteomalacia
(softening of the bones). The latter condition (osteomalacia) is likely to be more of a
problem for persons with celiac disease than osteoporosis [although osteoporosis
does occur in selected patients]. Alkaline phosphatase can be fractionalized to
give more information about the condition of the bones.
Osteomalacia (called rickets in children) may be corrected with
appropriate dosage of vitamin D for some patients.
A gradual softening and bending of bones with a varying severity of pain
characterize the condition; the softening occurs because the bones contain
osteoid tissue that has failed to calcify, due to lack of vitamin D or renal
tubular dysfunction. The disease is more common in women than in men, and often
appears to begin during a pregnancy. Symptoms
may be back pain, collapsed spine or muscle weakness.
Because of many variances involved, the interested celiac patient should
discuss their symptoms and potential secondary condition with their physician.
Q:
Who should have a gluten-challenge and should it necessarily be done
under a physician’s monitoring and care?
A:
The challenge is done when the diagnosis for celiac disease is
uncertain and the results of the biopsy are ambiguous.
The length of time for the challenge may be 2 or 3 weeks or longer.
The test and preparations for the test which generally include diet need
to be done under a physician’s supervision and then be concluded with a
biopsy.
Q:
What is candida and how is it diagnosed?
Are symptoms similar to celiac disease?
How is it treated?
A:
Candida is a yeast or fungus organism.
Infections are infrequent and tend to occur in people who are
malnourished or in whom the immunological system is not functioning properly.
It is treated with specific antibiotics.
Q:
Is it typical for celiacs to experience nausea and fatigue on hiking and
long walks? I often get sick when
I’m exercising at the gym.
A:
If celiac disease is in the active state for you, then nausea and
exertion associated with fatigue are common symptoms.
Such symptoms are not specific for sprue and are associated with a wide
variety of medical problems. If the
symptoms are intensive and/or progressive, re-evaluation should be conducted by
the patient’s monitoring physician.
Q:
Will I have a problem with my insurance company after I have been
diagnosed with celiac disease? Will
they be likely to drop me because I now have what some may term as a chronic
illness?
A: It is not
likely that you will ever have any problem whatsoever with your insurance
company.
If you do have a special situation, there are providers of life insurance for individuals who have genetic conditions. The concept behind these types of programs is one that affords individual underwriting based on actual medical status without prejudice to any particular “genetic” condition. Several programs are currently available; information can be obtained by writing to the following address:
Alliance of Genetic Support Groups
38th and R Streets, NW
Washington, DC 20057 Tel:
202/625-7853
In addition, many state departments of insurance will have
information or can make appropriate referrals within your own area and for your
state.
Q:
Could I be credited with extra-withholding items on my income tax
deductions for costs related to celiac disease?
A: The answer to this question may change from one year to another as the allowable deductible items are redefined and the total dollar amount for deductibles changes.
Records of expenditures for medical prescription items and the differential costs for gluten-free foods need to be maintained. Most celiacs find that after keeping weekly records of all foods included in the “prescription diet” (the gluten-free diet) and adding costs for prescriptions, that the total amount does not add up to the amount allowed for medical and related expenses. However, families with children and individuals with higher than average medical and medicine costs have found that total costs do exceed the suggested deduction. They then will profit from the diary of record keeping and the physician statement that is required.
Check with your local tax service or your state tax commission to learn
the details of records needed and for record keeping in your state.
Learn also which items are allowed and up to what level.
For most celiacs, the allowable deduction is typically greater than the
total of costs for medical and prescription costs above insurance even with the
added differential costs for foods to satisfy the definition of the prescribed
gluten-free diet.
Q:
Can celiacs use the organic sweetener sold in the market sometimes as
Sipal?
A: No, definitely not. But all of their literature advertises it as gluten-free. Their large 4-color poster as the health food store also advertises it as gluten-free. However, this is not false advertising. The international standard for a product to be termed “gluten-free” requires a maximum of 0.3% rate of gluten for all proteins. SIPAL is a wheat-based grain sweetener that contains only 0.11% gluten and can therefore be considered as gluten-free. Celiacs who wish to remain on the gluten-free diet, however, should not be using a product with this amount of gluten; those celiacs who have chosen to be on a gluten-restricted diet might not have overt reactions on ingestion of this product. They may, however, then need to look forward to a series of problems that could include lymphoma.
A second misconception represented in SIPAL’s literature states that there is no gluten to be found in either corn or rice. They have missed the important point that corn contains the protein zein, and rice contains the protein oryzenin. The difference which their dietician, food scientist or home economist has missed is that the amino acid chains are in a different order in corn and rice protein and thus not toxic as they are in wheat, barley, rye, and oats.
Look for SIPAL to be listed as an artificial sweetener, a flavor
enhancer, flavoring agent, etc. Whenever
you are dealing with ingredient terms for which you do not have a definition and
for which you do not know the base from which the listing has been derived, you
will be making a better choice to omit that particular food.
Q:
Why am I having a problem with natural butter flavor?
I am a celiac, I have a bit of DH showing up in my hair when I get into
some hidden gluten and I’m lactose intolerant.
A:
My off-the-cuff answer is that you are not aware that many of the natural
butter flavorings contain nonfat dry milk.
The actual butter flavoring may be less than 3 to 5 percent of the total
product; it is the bulk of the product that is made up of dry milk.
Thus, with the lactose intolerance problem, you should never be using any
of the several flavoring agents based on milk.
You may also need to watch out for terms such as casein, whey or calcium
caseinate. Many persons may not
realize that these ingredients are derived from cow’s milk.
Q:
The test results from the immuno-allergist I’m seeing show that I’m
continuing with a high sensitivity to soy; now this sensitivity is also showing
up sporadically in corn. But the reactions are up and down. Sometimes I seem to be okay, and sometimes not.
What information can you share? I’m
a celiac who gets on very well on the gluten-free diet if it does not contain
soy or products derived from soy.
A:
You will note that the Kellogg company now has an additional statement on
their corn flakes boxes which indicates that “the corn used in the product may
contain traces of soybeans.” And
that statement needs to be made because it is impossible to achieve complete
separation of corn and soybeans because they are grown on the same farms.
You may need to review with your gastroenterologist and the immuno-allergist
whether or not you might need to eliminate both soy and corn from your diet at
the same time. Typically, the
dietary treatment for these kinds of additions to the clinical diet are not
something you can work out for yourself; the help and monitoring of a physician
and dietitian will be essential.
Q:
What are some common symptoms of irritable bowel syndrome?
A:
Symptoms usually begin in young adulthood.
A definition of the condition may take 3 to 4 months.
It generally involves abdominal pain which is relieved by a bowel
movement, associated with a change in the frequency of movements, or linked with
a change in stool consistency—and at least three of the following: bloating or
distension, the passage of mucus, changes in stool form, alterations in stool
frequency, or difficulty in passing a movement.
However, no one of these symptoms is unique to irritable bowel syndrome.
Some can result from inflammatory bowel disease; gluten intolerance such
as celiac disease; allergies to certain foods or a specific ingredient such as
lactose from milk, fructose sugar from fruits or sorbitol an artificial
sweetener or caffeine from coffee. Since
the disease is complex and since some of its symptoms mimic other disorders, it
is very necessary to work with a physician to monitor medication, possible
lifestyle changes, and all of the related therapies that may be indicated.
Q:
What’s the guar gum story?
A: Guar gum is typically not recommended for use by celiacs except under physician direction. While guar gum is an excellent binder and works well with gluten-free flours, it also is used medically as an aid to relieve constipation. It is often suggested for celiacs who have an occasional problem with hard stools. Guar should not be a choice for patients who have a tendency toward having diarrhea. Several commercial food companies stock a bread product that uses guar gum as a binder. This bread can be an excellent choice for persons who have been advised by their physicians to use this stimulant.
Secondly, case histories are now surfacing which may help us learn more
about this product. In one case, a
child of four years stopped having diarrhea after omitting breads and cookies
that contained guar. In four cases
of refractory sprue, all patients felt their overall condition was improved when
they were off guar-containing breads. In
a care center, an 80-year-old man was released after getting his gluten-free
diet regulated; while that diet change included a number of items, it did
include omitting guar. So, for two
reasons: 1 – that guar is used as a relief for constipation and 2 – that
guar is a reported problem for selected celiacs, guar should not be a choice for
celiacs unless advised by their physician.
Q:
I’m a newly diagnosed celiac and am having problems with molds.
So, after many weeks, I finally caught on that I shouldn’t be using
yeast in my bread baking efforts. Now,
I’m finding that I don’t know the difference between baking soda, baking
powder, and cream of tartar. What
should I be using with what?
A: If you first understand that the leavening or the rising process is the result of the reaction between acids and alkalis, with the liberation of carbon dioxide gas–you’ll know the basics.
Baking soda (often referred to as sodium bicarbonate) is fairly alkaline and can be of use alone for a number of batter doughs if the dough or batter is sufficiently acid to react with it. It can function as the sole leavening agent in recipes in which you are using yogurt or sour milk for example. So, when I’m using soda, I often add two tablespoons of yogurt or a similar amount of soured buttermilk.
Baking powders contain both baking soda and an acid in the form of salt
crystals that dissolve in water. If
you are working with batter that has a low acid level, you can use both soda and
baking powder or an acid to work with soda.
Most baking powders are described as “double acting” because the
leavening process is a two-stage affair. At
room temperature, one group of compounds produces an initial set of gas bubbles
when mixed with the liquid ingredients. Then, during baking, a third ingredient,
which reacts at much higher temperatures, expands the bubbles so that they are
large enough to impart a light texture to the finished product.
It occurs late enough in the baking process that the structures do not
collapse.
The home baking powder (not the commercial baker’s baking powder)
contains a combination of mono-calcium phosphate and sodium bicarbonate for the
first phase of the leavening process and sodium sulfate for the second leavening
process.
Cream of tartar is used as a stabilizer.
It is often used as an acid to stabilize egg whites.
It will, however, delay the formation of foam and thus would decrease the
volume of egg whites. That is why
directions usually advise whipping egg whites to a foamy state before adding a
stabilizer such as cream of tartar.
Q: My father, who is 78, was hospitalized recently for what turned out to be what we feel is out-and-out product labeling misinformation. Once he was off the so-called wheatless bread made from spelt flour; he was greatly improved after only a week or so of being back on a gluten-free diet. He had been a bed patient for the past 5 months and had developed a severe lack of energy and had lost interest in everything–including his family. But with this correction in his diet for only a few months, he is revitalized again. We can hardly believe the dramatic change. He’s driving again, he’s doing his daily walks, and he’s up 12 to 15 hours a day. In short, he’s a new person and back to his old active lifestyle. And he’s off spelt!
My question of you: Why are
the companies who promote spelt allowed to advertise their products as
wheat-less? How can they get by
with this kind of misrepresentation? An
older person such as my father was taken in with their misleading advertising
and nearly died. Even the dietitian
at the hospital didn’t know that spelt is another name for a common low-gluten
wheat. And, the people at the
health food store are totally taken in with the very well done “wheat-less and
wonderful” advertising literature.
A: Even my desk dictionary defines spelt as follows: “a primitive species (Triticum spelta) of wheat with grains that do not thresh free of chaff.” How can any one of us miss that spelt is wheat? But hundreds of us do. The common wheats listed in freshman level nutrition tests include Triticum aestivum, T durum, T monococcum and T spelta. All of the Triticums represent varieties of wheat. And, of course, that means gluten at various levels and with varying levels of gliadin. And, if ingested by celiacs, will mean varying levels of toxicity, which may be hidden for some patients or very apparent to others, as in the case of your father.
Take seriously the message that spelt is a low-gluten wheat.
If you are to be on the clinical diet for gluten-free foods, then you
should be avoiding spelt in all forms: organic, dried, washed, and “combined
with honey to make it gluten-free.”
Q:
I’m the proud owner of a new mill and am now grinding six grains for
use in my diet. Now I would like to
make my own self-rising flour. Can
you share a recipe?
A: I’m not sure that I have a good answer, but can share with you the portions that I am currently using. To make one cup of self-rising flour, I am combining rice flour ground on fine, salt, and GF baking powder. I’m using very cheap non-enriched rice for the base. I use seven-eighths cup of rice flour, one and a half teaspoons of GF baking powder, and a scant one-eighth teaspoon of salt. You can double or triple the amounts depending on how much self-rising flour you need for the recipe. I would not suggest adding xanthan gum to your self-rising flour mix until you are ready to actually use the product. Xanthan is best stored in the freezer in a separate container since it may promote a taste change or rancidity within a flour mixture. Add xanthan to the product at the time of actual mixing and preparation for baking.
For a cake flour mix, I am using the following portions: one cup of rice
or milo flour ground twice on fine, two tablespoons of corn starch, one half
teaspoon cream of tartar, and three tablespoons of potato flour.
I freeze this mixture in two-cup portions.
I’m using it for both cookie and cake recipes.
Q:
Is sodium starch glycolate really a potato starch?
A:
Not always. While it is often derived from potatoes, it could be made
from any of the starch bases including wheat starch as the base or as an
additive. Some companies are now
listing sodium starch glycolate as “non-specific” which is likely a better
descriptor for this ingredient when the source is not known or available from a
secondary distributor. Note also
that this ingredient may be in a product and be described under the Codex
Alimentarius of the World Health Organization definition as being gluten-free
since it would make up less than 5% of the bulk weight of the finished product.
Thus, it would meet the international guidelines for their present
definition of “gluten-free.”
It is critical then to note that the designation of gluten-free on a product or mix from a foreign country does not always mean
that the product does not include gluten-containing ingredients.
In reality, it may only be gluten–restricted (or gluten-containing with
the amount unspecified).
Q:
What do you know about the coating being used on French-fries?
A:
While we do not have access to either the recipes or to an of the
ingredient listings for any commercial outlets since they remain confidential
trade secrets, we do know that french-fries from most any vendor which uses a
coating do contain a small amount of wheat starch.
Since the amount of wheat starch is less than the 5% level, it can then
be defined as gluten-free under the present standard (code definitions) being
used. Our strong suggestion is that
all commercial fries, which are represented as having a coating, should not be
included as choices for the diet of the celiac.
In three contacts made with local vendors, there was no knowledge of
coatings being used; however, a check with regional or division offices
indicated that coatings were in use for each of these stores.
Q:
What’s the story on mono- and di- glycerides?
I saw something in the press that caused me to believe I should be more
watchful when I know these ingredients are present.
A:
What you have seen in the press is based on research being published
within the past year on fatty and trans-fatty acids.
While the whole story may not yet be known, several researchers now feel
that we must view mono- and di- glycerides with caution and question content of
those particular product ingredients. This
is a change from what we were saying even a year ago; we will now need to
reverse what we have previously said in print to the current thinking that
interprets glycerides when in selected combinations with fatty acids to be a
potential non-gluten toxicant for celiacs.
(Or, a potential stimulus for a reaction seen as intolerance.)
Four researchers contacted indicate that “more pieces of the puzzle are
emerging” and that more information will be available both in professional
journals and in the press in the near future.
Q:
I’m taking a multiple vitamin and two herbal products and a food
supplement suggested by my health food store that are supposed to boost my
energy level and the immune system. But,
I haven’t seen much change yet. Which
food supplements should I be taking as a celiac?
A: First and foremost, you
need to be discussing this issue with your monitoring physician.
Perhaps you need to think through why you might need any of these
products and if a need were present, which product or preparation would be most
helpful to you. Make that decision
together with a physician who knows your present health status and understands
that celiac disease is your primary illness.
Consider that in recent years, preparations known as “dietary
supplements” are non-regulated and can be sold without the rigid control and
monitoring the FDA has over pharmaceuticals (prescription and non-prescription
medicines). Reports of adverse
reactions to such preparations have so alarmed FDA officials that they are
moving to either force changes in labels, require pure ingredients, or perhaps
stop the sale of some food supplements and herbal products altogether.
The primary concern is the safety of these products for the consumer and
especially for the consumer who has an illness.
At this time, people see labels that claim products are “all natural”
or “herbal” and believe that they are safe.
That remains a very risky assumption.
On the negative side, FDA officials reported that over 800 people were
treated in 1995 for disorders linked directly to “health food” preparations.
Symptoms ranged from heart attacks to seizures to a broad range of
non-specific upsets. A total of 17
deaths were reported. At this time,
there is a strong case for “the buyer to beware.”
Q:
What is your position on the use of melatonin supplements by diagnosed
celiac patients.
A: Over-the-counter sales of melatonin, a hormone supplement, have been banned in Canada by the government. The formal statement indicates the government wants scientists to have proven its safety in human trials before offering it to the public for non-regulated use.
In the U.S., however, use of melatonin supplement appears to be up to
one’s own discretion; the FDA reports that their offices have received only a
handful of complaints up to this point. Side
effects can include nightmares, next day grogginess, headaches, and various
forms of mild depression. Claims
that melatonin can slow the aging process and prevent cancer and heart disease
still is unproven in human subjects.
Melatonin is produced in great abundance by the brain’s pineal gland when we are children, but that production drops off steadily as we age.
The national Institutes of Health are spending over $5 million a year on
some 57 melatonin studies, so we will eventually know more about what melatonin
can and cannot do. But results of
these studies are still several years down the road.
In the meantime, people who should NOT take a chance taking melatonin
include those with severe allergies, autoimmune diseases which include
nontropical sprue [celiac disease], autoimmune-system related cancers, breast
feeding mothers, women who are pregnant or trying to become pregnant, and
children–especially children and pre-adolescents.
As with other vitamins and food supplements [nutritionals], the celiac patient is best
advised to use these products only through the advice and monitoring of a
physician who knows the patient and their particular condition.
One, you will then be taking what is appropriate and recommended for you
and the needs your body represents at this time; and two, you won’t be
spending money for preparations which may not be needed or appropriate.
Source:
Dan Orien, M.D., Program Chief, National Institutes of Health.
Q: Our 4-year-old son
isn’t doing well with the gluten-free diet and hasn’t gained weight in the
past couple of months. There may be
some learning problems, impaired hearing and sever sinusitis as well.
Where can we get some questions answered?
A: Why don’t you start with the Department of Gastroenterology at your state university medical center. Call the university for an information number and then ask to talk with the chair of the department of gastroenterology; he or she