Treatment Program
Treatment for celiac disease [celiac sprue] is presently based on diet, a diet which represents removal of all toxic gluten from dietary intake. While removal of all cereal grains and food items that cause problems for the patient with celiac disease sounds simple enough, such a diet is in reality very difficult for most patients to achieve and maintain.
Obvious sources of toxic gluten such as breads and most baked goods, wheat- or oat-containing cereals, noodles and pastas are easily avoided. But many of the toxic glutens, especially wheat flour, are virtually ubiquitous in the normal diet of Americans. Wheat is often used as an extender, a binder or preservative in hundreds of processed foods and is present in many foods common to the diet such as ice creams; salad dressings; canned foods including vegetables and soups; candy bars; luncheon meats; catsup and mustard; nondairy creamers; yogurts with fruit; most emulsifiers, and stabilizers; and, in most instant coffees and drink mixes.
Treatment with the gluten-free diet represents a life-time commitment for both children and adults. Once the lesions in the mucosa of the small intestine have been identified through biopsy as celiac disease, a full commitment to a prescription of dietary practices needs to be developed to meet the needs of the patient and the level of the illness represented for that patient. The institution [following with strict detail] of the prescription gluten-free diet for a patient serves two functions: 1] it initiates and begins treatment; and, 2] if followed by clinical improvement, confirms the diagnosis.
If a patient fails to improve within a few weeks following the institution of the prescription gluten-free diet, a meticulous review of dietary intake should be initiated. The most common cause of failure to respond to a gluten-free diet is incomplete removal of gluten from the diet and/or added sensitivities or intolerances that are not being accommodated with present dietary intake. Even patients hospitalized in sophisticated medical centers are, at times, challenged inadvertently with gluten-containing foods while they are supposedly receiving a prescription definition of the gluten-free diet.
There is considerable variation among patients with celiac disease in their ability to tolerate small amounts of toxic gluten [gliadin fractions containing amino acid sequences in an order toxic to celiac patients]. In essence, no two patients appear to be alike in their levels of sensitivity and in their response to a particular ingredient and in their levels of the illness. This difference is most apparent after patients have responded to gluten withdrawal and are back to normal or near-normal. Under such circumstances, some patients can ingest small amounts of toxic gluten [gliadin with toxic amino acid sequences] without appearing to develop symptoms; others, however, are exquisitely sensitive to the ingestion of even minute amounts of toxic gluten and develop varying symptoms including massive watery diarrhea. The diarrhea in such patients can be so severe that it can induce clinical shock resulting from acute dehydration and be life-threatening; indeed, the term "gliadin shock" has been applied to this condition. Thus the paramount need to communicate to the celiac patient a rationale for total and strict adherence to the dictates of the prescription gluten-free diet that has been developed for their specialty needs and their level of the condition. Source: Gastrointestinal Disease: Pathophysiology/Diagnosis/Management by Sleisinger, Fortran, et al. W. B. Saunders Co., Fifth Ed.
In developing the prescription gluten-free diet, the following considerations act as guidelines:
1. Choose foods from the suggested dictates of a basic gluten-free prescription diet; note that it is critical to follow the exact details of the gluten-free diet as prescribed.
2. Add "prescription food or ingredient items" from specific needs [and questions] that evolved in the diagnostic evaluation with the physician for your version and level of the illness.
3. Add food and ingredient content that fit into the categories of other intolerances, food sensitivities, and selected hypersensitivities that are present in addition to the key problem--gluten intolerance [gluten- sensitive enteropathy].
4. Choose to be more than "gluten-free." [being only gluten-free is not enough]. Add specific items that are beyond the gluten-free diet; these food 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 illness is different and needs its own 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 [a big problem] for the next one. 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. Both of you as patients will have in common that you have a varying level of sensitivity to wheat. Your common likenesses may stop there.
Treat your own needs 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 on sale-- congratulate him, but go home and renew your vow to yourself 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. And keep it "well-fenced."
It is often helpful for the celiac patient to work out 20 foods that fit their version of the prescription gluten-free diet. Where are these foods available; how are they made and put together. Which commercial food companies support these diet selections. Note especially which shortenings, which seasonings, flavorings, and additions fit these 20 foods and this diet. Plan a few menus--especially breakfast. Plan a few snack items, drinks, and desserts. Learn the basics of label reading and develop a system for making appropriate food selections to fit your "20." Work with two or three restaurant cooks to develop appropriate menu selections for eating out and stick to them.
It is difficult to learn and understand and also difficult to accept that each commercial food company may be operating on their particular 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 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 the gluten-free diet.
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 of 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 oropharynx 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 version of the gluten-free diet for life.
Maintenance of a strict gluten-free
diet requires
considerable diligence
on the part of
the patient along with support and knowledge of what constitutes a
gluten-free diet on the part of the monitoring physician.
The goal for the patient needs to be self-management.
Therefore, patients must be educated to exercise caution in
their
food consumption and in their food purchases in both stores and restaurants and
to carefully read food labels, because gliadin and other disease-activating
prolamin is ubiquitous, particularly in processed and commercial foods.
When gluten is removed from the diet, most of the damage is repaired in the small intestine, the jejunum. Within 3 to 6 days after all gluten is removed from the diet, the intestinal lining begins to improve. However, recovery, symptom remission and return of the mucosa to near normal, may take 3 to 6 months. For an atypical case, it may take up to 18 to 24 months.
It needs to be emphasized from the outset that there is no known risk or harm to anyone in going on a total gluten-free diet. Gluten as a protein is not essential to the diet and its amino acid components are replaced many times over by other foods. However, there is perhaps some inconvenience, since the gluten-free diet is not in common use in the United States nor in the western world.
The sudden introduction of a special diet into a household can be
perceived as a traumatic experience for everyone in the family. Often there is little help available at the crucial beginning
of the diet, especially if there is not a knowledgeable dietitian to give
advice. If the situation is poorly
handled, the special dieter can quite unintentionally be made to feel abnormal
and a nuisance. A child on a
gluten-free diet can be made to feel he or she is a source of worry when the
mealtime routines are suddenly changed. Or
worse—that he is different, simply because of diet.
Parents and family members must take into serious account how they choose to process change. Is this newly-introduced illness to bring about a choice for action or reaction? How good is the family at this aspect of life and living with change? What type of culture is already established within the family structure for handling change? How will the family be able to support a family member who needs to accept this change—no more gluten-containing foods--ever. That means for life. Handling change is about 10 percent action and 90 percent reaction. The patient has the choice of how they choose to handle the diet and their reactions to it. Will it become an integrated part of food choices and dining? Or, will it be viewed as burden with associated dreads and a negative valence of feelings?
Several action research reports indicate that from 60 to 70 percent of
celiac patients do handle the clinical diet very well and see in it the
opportunity for them to manage the illness and their lives in a positive manner.
They are the ones who generally do very well with both the diet and the
illness. They appear to have fewer
related and non-related health problems. Unfortunately,
however, about 30 to 40 percent of celiacs do not do well in making a personal
choice to handle the diet. Whether
it is a matter of misunderstanding and motivation or a lack of knowledge about
the diet is not clear. It appears
that selected celiac patients may even take on negative behaviors both to others
and to themselves. These individuals are also those celiacs who may choose to
cheat now and then; and, somehow or other, we have not been able to help them to
take the diet and their own health status seriously.
There are many positive sides to having a celiac sprue diagnosis. The diet is a good one. There are hundreds of gluten-free foods available that fulfill the definition of the expected clinical diet. Most recipes presently used can be converted to gluten-free, even Aunt Lydia’s meatballs and spaghetti and Grandma’s Thanksgiving pumpkin pies. There are no drugs with potential side effects required. Good health is reasonably assured through strict adherence to the gluten-free diet.
Without a strict clinical diet, children may have both growth and stature seriously affected in the absence of complete treatment. Adults who do not follow the diet may have ongoing inflammation and damage without being aware of clinical symptoms. Research studies on the relation between diet and malignancy (typically lymphoma) indicate the best protection factor is strict adherence to all details of a strictly defined gluten-free diet can lead to a completely normal digestive system. However, previous ravages and/or side effects may not be corrected.
“Once a sprue, always a sprue” is a hard line though. There isn’t a chance to grow out of this disease. There isn’t yet a pill that will change things. Nothing known to medical science at this time will provide a cure. There is no cure to negate the intolerance. There is only a monitoring of symptoms and the recommended plan of action—lifelong adherence to the gluten-free diet.
On the advice of the monitoring physician and with the details of the blood test analysis to learn if selected vitamins or nutrients are being mal-absorbed, there may be supplemental therapy to the prescription diet. These recommendations may include selected intake of iron and folate; and, in some few cases one of the B vitamins. Occasionally there is need for replacement of fluids and electrolytes, including calcium, potassium, and magnesium. Both men and women with low bone density may require vitamin D replacement. When there are atypical cases of celiac disease or when there are associated conditions, then a series of additional treatment elements may apply.
Several understandings are very important for the celiac patient who needs supplemental treatment beyond diet therapy. A first learning is that no two celiacs are alike—they are not alike in symptoms, levels of malabsorption, nor are they alike in diet or treatment needs. So what may be great for a friend may be totally inappropriate and/or damaging for you. In this case, “what’s good for the goose is not always good for the gander.” You are like every other celiac in that you have a toxic reaction to the gliadin fraction of selected proteins; you are likely very different in dozens of other ways which are central and critically important to secondary treatment modalities beyond the clinical diet.
Second, it appears most celiacs need help in avoiding self-diagnosis and self-treatment beyond the self-management necessary for handling the gluten-free diet. Learn this lesson well. Learn this lesson at all costs! It may be that more that half the problems that celiacs get themselves into relate to playing “doctor” and then following up with their own “prescriptions.” Or, if another celiac is doing it, I should be doing it, too. Or, if a little bit of a vitamin or supplement is okay, more will be better. Or, if the store clerk has a promotion for it, I will be sure to follow that lead. Or, if it was in print in a 4-color brochure, it must be gospel and I will believe and follow it to the letter.
The reality is to “let the buyer beware.” The reality is to stop “dinkin’ around” on your own and get yourself into a partnership and monitoring relationship with a gastroenterologist or clinic facility and work together with a medical connection in making selections for treatments beyond the clinical diet. Make this a rule—for choices and review of vitamins and supplements and all over-the-counter medications. When celiacs do not have good information about themselves and the hundreds of “put-ins” and “put-ons” available they are often likely to both misdiagnose and mistreat themselves, even with having the best of intentions and the highest interest in and for themselves.
A third important learning is that celiacs must know and understand that they
have a condition, which demonstrates itself with a depressed immune
system—with a lower functioning autoimmune system.
The individual with a depressed immune response may not handle infections
as well as others; and, they may not quite have the stamina and resilience of
others. Most vitamins, food
supplements and over-the-counter medications are based on and measured for
persons at full-functioning, full-absorbing levels.
The celiac could need less or perhaps more of a particular vitamin,
mineral or medication. It will
likely be a good practice for the diagnosed celiac to work with a monitoring
physician as to what, how much, and if-at-all—as “the rule of thumb” for
an appropriate allowance of a particular medical or supplement product.
This learning can be critical with considerations such as selected
vitamins that are stored in the body or with some over-the-counter and arthritis
remedies.
Additionally, the individual with celiac disease needs to understand the condition as a malabsorption problem [a malabsorption syndrome], an absorbing situation in the small gut, which is or may have been reduced. There are no longer as many functioning “holes in the sieve” for nutrients to get through to the blood stream and be available for use throughout the body. Even with the villi in the small intestine being described as being “back to normal,” there remains the potential of some nutrients being absorbed at lower levels. Once again, blood tests come to the forefront. With interpretation, the patient and the physician can learn which vitamins and minerals are being absorbed at adequate levels or are being absorbed at lower or minimal levels. With this evaluation and interpretation, additional therapies and/or food choices may be suggested.
Finally, there remains a small group of foods that many researchers refer to as “beyond gluten-free” along with potential intolerances which need to be included with the details of the gluten-free or clinical diet. Most of these foods appear to cause toxic reactions, which are defined as similar to reactions to gliadin obtained from cereal grains. And, as with gluten, some reactions are overt and realized by the patient while others are covert and covered and thus may not come to an awareness level for the patient. However, they may or can be damaging or interfere with recovery and general well being.
For the Newly-Diagnosed Patient.
One or more associated conditions may be present with celiac disease.
Common is lactose intolerance in which lactase is not present to
facilitate digestion of milk sugar, lactose. This
reaction may be similar to the toxic reaction of gliadin or be defined for the
patient with only a similarity of symptoms, which include bloating, gas, and
diarrhea. Also common for
newly-diagnosed patients is sensitivity [or an intolerance known in the
literature as trehalose intolerance] to molds.
This is likely to include such common foods as mold-based cheeses,
mushrooms, yeast and yeast products and xanthan which may be used as a binder in
selected gluten-free breads. Also,
there is the potential of allergies
and/or selected food sensitivities, which are unique to a particular patient.
Less common are reactions or intolerance to soy protein, eggs, chicken
[especially to undercooked chicken], and tuna [or, perhaps all seafood].
For each of these conditions, the celiac will then need to make the
appropriate dietary changes and related adjustments in order to eliminate the
problem. However, the very strict
gluten-free diet is the entire treatment for the majority of patients.
For the patient who may have had active celiac disease for a number of months or even years, there may be associated immune-related conditions. There is an established association between celiac disease and insulin-dependent diabetes mellitus and with thyroid disease. Not so common, but occasionally found in patients with celiac disease are hyposplenism, splenic atrophy, and selected neurologic disorders. It must be emphasized, however, that none of these conditions is specific for/to celiac disease, because they may also be elicited with malabsorption caused by other diseases.
The conditions of osteoporosis and osteopenia (a loss of bone mineral
density) are often the most serious complications for persons with celiac
disease. Most authors
report the incidence to be about ten times higher among celiac patients than is
found in the general population. It
is likely that about 4 out of 10 celiac patients will need aggressive treatment
for low bone mineral density-related problems.
While it can be a problem for both men and women, it affects
post-menopausal women at a higher level. Treatment
typically includes calcium supplement intake along with estrogen replacement.
Any pattern of treatment must be based on individual evaluation and
physician recommendation and monitoring.
The major aspects of treatment for celiac disease involve the following regimen:
1. strict and lifelong adherence to the gluten-free diet;
2. adequate learning on the part of the patient concerning the basics of the gluten-free diet as a program of self-management;
3. adjustment of the diet to fit special needs beyond the gluten-free diet;
4. potential adjustments to needs defined with blood test evaluations related to which minerals and nutrient are being absorbed at low levels;
5.
evaluation of bone mineral density with appropriate follow-up
needed;
6. monitoring with a physician or clinic to evaluate progress, assess status, and detect changes in the condition that may need an appropriate or additional treatment;
General Management Suggestions for
Celiac Disease. The
celiac patient is well-advised to be monitored by a physician or clinic with
appropriate screening and laboratory procedures as needed.
The patient needs to be proactive and alert the physician to health
screenings and evaluations which include the following areas:
up-to-date flu shots and pneumovax 23, the vaccine for pneumonia; bone
marrow density screening; evaluation and screening for diabetes; review of GI
malignancies, colon cancer, and hemo cell screening; patients with recurring
infections may need to be evaluated for Iga levels; and, perhaps for a review of
glandular functions (thyroid).
Is it Attitude or Acceptance? Whenever a diagnosed celiac finds
the definitions of the gluten-free diet to be a stone wall or an impossible
“self-made” hurdle—just for themselves, family members and monitoring
medical professionals may have a tough time coming up with solutions.
What has happened that a particular individual will find an unwillingness
to follow the basic precepts of a prescription diet.
In reviews of three celiac population groups within a larger population sample, it was learned that as many as forty percent of the patients were really following only a gluten-restricted diet as contrasted with an expected gluten-free lifestyle. It appears these celiacs fit into the following general groupings. Some were totally unaware that they were not following the diet; they learned this by interpretations of blood tests. This group “went on” the diet but expressed that they had not followed any particular pattern of allowed foods. But they did feel they “were on the diet.”
A second grouping within this population expressed that they ate
“carefully” at home, but did not wish to “be sick” with friends or away
from home. Some celiacs of this
group expressed that they had never really been too ill and when they were, they
took a sick day or two or worked at home office.
They were generally unaware of any potential complications through
non-compliance with the dietary guidelines.
The third group was somewhat stronger in their reactions.
They felt encumbered by both the diet and the illness.
Their descriptions of accompanying illnesses and problems list 55
potentially related and non-related problems and conditions.
Sixty persons in this latter group described problems in their family
life, their work life, and a variance of health conditions in addition to celiac
disease.
Most of the larger grouping, the sixty percent group—appear to follow the gluten-free diet quite rigorously with a high level of attention given to what they eat and also to what they put on their bodies. They appear to represent an above-average knowledge of the diet and the illness as well as potential additional allergies and related sensitivities. They report they are doing “okay” in the details of their lives and with the illness and the diet.
One can only wonder what the difference might be between and among the celiacs in these groups. How does it happen that one diagnosed celiac gets to full compliance and a general acceptance of the illness and the diet and another rises only to some lower level of non-compliance and the potential of a series of complications. Why do most celiacs appear to be motivated to follow the diet but yet another group takes it as “ho-hum” and on the surface does not appear to be too well motivated or comes off as passive? What can we do as “celiacs helping celiacs?” What educational programs can and should we be putting into practice?
Living with Change and Crises. All persons experience
crises of varying types and varying degrees of intensity throughout their
lifetimes. In fact, most of life
could be described as a series of crises or living with change.
And, the change that contributes to crises, is a constant and continuing
part of one’s life.
Perhaps it is how we have learned to handle the small stuff that will
define how we will be able to handle some of the big stuff when it comes along.
Webster’s New World Dictionary of the American Language. New York: Simon and Schuster, 1984, defines crisis as follows:
1] a. the turning point in the course of a disease, when it becomes clear whether the patient will live of die.
b. an intensely painful attack of a disease;
2] a turning point in the course of anything; decisive or crucial time, stage, or event;
3] a time of great danger or trouble, whose outcome decides whether possible bad consequences will follow;
Note that this definition underscores the fact that crisis is a
“turning
One author on crisis theory suggests that “crisis arises out of some change in a person’s life
space that produces a modification of his or her relationship with others and/or
his/her perception of himself/herself.” Another
suggests that crisis is “the person’s internal reaction to a perceived
external hazard.” Note that these
two definitions focus on the individual’s “internal response to
change.”
A third example is that offered by the Chinese language. The Chinese word for crisis is made from a combination of two characters—one meaning “danger” and the other “opportunity.” This concept highlights that each perceived crisis in our lives brings with it the opportunity to grow as well as the danger of moving to a poorer condition or to “bad consequences.”
For each of us as celiacs there are accidental crises that result from such things as the event of an illness which may bring too much change in too short a period of time. If this event is perceived as a threat, then a crisis is likely to develop. How do we choose to react? Do we have a choice? Is it somehow based on the individual and their particular belief system? Is it an internalized attitude or perception that is defining our behavior and how we are able to allow ourselves to act and react.
It is interesting that the Greek word for crisis is krisis, which means judgment. And, indeed a crisis is often a judgment. But, it is a judgment that we make about things for ourselves. And, then we act on that particular definition—that particular internal meaning which we take into our lives. Our perceptions become our realities. Our perceptions become stronger than any reality around us.
There are usually several stages within a perceived crisis experience for
each individual. These stages are
centered within the following general areas:
| a] | the change that has occurred; |
| b] | the individual's internal reaction or perception for that change; |
| c] | the action which the person takes as a result of the internal definition or judgment in an attempt to adjust to change' |
| d] | finding new growth and acceptance; |
| e] | or, freezing at some level of imbalance with little or no growth [and, perhaps then failing]; |
Those persons who may react negatively avoid both the problem [or illness] and the need to change; they often attempt to handle things all alone and work very hard at applying inadequate solutions. They typically end up with an unhealthy balance of things—for themselves and often for any others they can latch onto as well. And, quite unfortunately, this can involve family, friends, and the work place. These individuals often exhibit a high level of concern for self; and offer to others an emotional response that includes negative feelings and an uncharacteristic aggressiveness. Tragically, the irritability manifested by some persons in crisis works to alienate the support and connections they need. Others with a sense of personal failure may withdraw from new situations and change and define themselves with low interest and often have moved on into passive behavior.
The opportunity reactors appear to simply acknowledge the problem and their need to change; they turn to others and viable resources for assistance and get on with it. They discover new ways of living and thinking about both their problems and themselves. They find their own balance of growth and see those same opportunities in others. They are viable for themselves, their families and their workplace. They fit and connect and make do. They have no crises. For them, it’s all small stuff. They handle the condition of celiac disease and its diet in stride.
“Experience is not what happens to a man.
It is what a man does with what happens to him.”
--Aldous Huxley
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Celiacs, Inc.,
PO Box 31144
Omaha, NE 68131
info@e-celiacs.org
Updated on 02.22.02 webmaster@e-celiacs.org