Checklist for Newly-Diagnosed Patients

            Setting the Stage:  When reviewing the needs for a new patient getting started on the gluten-free diet, it is often helpful to work from choices that are possible and that are good ones for the needs of the particular patient involved.  Considering the “allowed foods” group, those possible and not trying to take on the whole of the  “non-allowed foods” group, the possible is a much easier task for most of us who are working with change—and especially with changes for which the emphasis is on aspects our own personal diet and lifestyle.  For most of us it is much easier to work with “can have” and a “can have list” rather than to begin right off working with and being continually faced with “can’t have.” 

             With this kind of approach in mind, what then are the 15 to 20 foods that can be allowed for your version of the prescription gluten-free diet?  Write them down.  Put some of them into meal groups.  Choose which ones will be your snack group.  Learn where these foods can be made available to you.  Develop a few detailed notes for the cook on seasoning and preparation.  Enjoy your first trials at following the GF diet.  Make evaluations.  Continue learning and choosing.  Make additions.  While you will likely always be learning and adding and changing—in a few weeks, you will have moved to a major accomplishment:  you will have developed your version of the gluten-free diet that fits you and the needs of your version of the celiac condition.

             To begin, for example, working out what the patient can have for breakfast and which foods could be repeated for the week might be a good place to start.  Some patients do well beginning with a diet plan that emphasizes plain, naked foods without seasonings for a time and then later working on into a more detailed diet which will round out their food intake program.  While this kind of planning is likely to work out well, dealing with the listing of twenty foods from which to choose for meal and snack development appears to make things a great deal simpler for most patients.   And, if the 20 List is an accurate one, one that has been carefully chosen to fit all of the aspects of the patient’s prescription for a gluten-free diet—moving on into the diet moves along well and with success.

             How the individual celiac has learned to handle change and how change  is handled within the “culture” of the family of the celiac appears to make a difference, however.  The attitude of the patient and his or her acceptance of change--appears to be an important part of the difference as to how a particular celiac will take on and handle the prescription diet and in addition, the strengths they will have available to them for use in maintaining a strict and detailed version of the gluten-free diet.   The adage of “No difference is a difference unless it makes a difference to you” appears to apply to both approach and practices followed in dealing with the diet. 

             Feeling better [in a matter of hours or a few days] when on the new diet is a big motivator for most celiac patients.  Having no more toxic reactions and learning that you are in charge and can do your personal self-management plan that you develop just for you—moves most patients on up into success.  Working together in a partnership with a physician and dietitian and the family system is also helpful for most patients.  The feeling of teamwork and doing this together is helpful; the encouragement for success from others is helpful.  However, the simple knowledge a patient has of knowing within themselves that they have succeeded and that they are succeeding in dealing with this illness is a great motivator.  

             But resistance and reactivity [perhaps only attitude] can be big factors in getting onto a gluten-free diet for any one of us at any age or stage in life.  If the survey research still holds true that only about 60 percent of celiacs “have what it takes” to get into and stay on the gluten-free diet—then by all means, take a bit of time in your planning, take the time that you need to get into the diet, and strive to be one of the winners.   For the losers there may be no problems whatsoever; but again, research clearly points in the direction of many and varied complications for those celiac patients who are non-compliant with the dictates of the prescribed gluten-free diet. 

             The factor of knowledge, knowing which choices to make—is an additional factor of importance for the patient on a gluten-free diet.  So it becomes not only important but critical to learn “what is involved within the diet,”  “the basic dictates of the diet for your particular version of the illness,” and “to make appropriate choices based on good information and knowledge.”   Many celiacs who have taken on secondary illnesses have “thought” they were on the gluten-free diet, but with blood evaluations and follow-up, learned that enough molecules of gliadin were present to have the potential to cause problems.  The critical part of the gluten-free diet is to have good information on each and every item that you plan to put into your mouth—know that what you are eating is gluten-free.   It is the responsibility of the patient to know which foods and ingredients are their heroes and to learn well which foods and ingredients are zeroes for them and their dietary intake.  When inadequate or no information is available for an ingredient of food item, the prudent plan is to omit those items and take them off your list.  “When in doubt, leave it out” is an idiom with special meaning for the celiac on the gluten-free diet.

             Developing a Plan of Action.  Focus first on a gluten-free diet program which features the basic foods allowed and those foods not allowed a gluten-free diet.  Know that it is critical to follow the exact details of this diet plan and the additions that have been prescribed by the monitoring physician.  Additions suggested will be based on the details revealed in evaluations at the time of diagnosis and follow-up tests and consultations that may have been indicated. 

             Add food and ingredient content items that fit into the categories of other intolerances and/or sensitivities that may be present.  Develop this listing in conjunction with the monitoring physician and not from print or hearsay information.  Such intolerances might include lactose intolerance, a problem with the digestion of cow’s milk; trehalose intolerance that relates to molds and commonly such items as xanthan, mushrooms, and longer refrigerated food items with the potential of having developed mold spores; seafood sensitivities which typically include food items such as shrimp, scallops, and lobster. 

             Your physician may suggest adding several food items that are beyond the dictates of the gluten-free diet—items that are certified to be gluten-free but that still may be problems for the celiac patient. Such a listing might include some of the preservatives and flavoring agents.  There may be the admonition to avoid undercooked eggs and undercooked meats—especially undercooked chicken and undercooked fish.  

             Do not make the mistake of following or “taking” someone else’s “medicine.”  Each patient’s pattern for the condition, [their illness] is different and unique to them; their needs are different and unique to them.  Each patient needs to be treated with their prescription of foods for the formulation of their particular version of the gluten-free diet—just for them.  A food or ingredient that works for one patient may mean intolerance or other new or related problems for the next well meaning patient.  “What works for the goose doesn’t always work for the gander” needs to be in the transfer of learning to the diet prescription for the celiac patient.  Your illness has the same name, but has differing levels and differing 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.  Just like you would not take someone else’s antibiotic with your next fever, do not take up some else’s diet when you develop celiac disease. 

             Obtaining Gluten-Free Foods.   While regular grocery stores will be able to provide dozens of food items for the gluten-free diet, the patient may also wish to get started with mail order options with two or three commercial food companies.  Review needs for food selections and then contact several of the gluten-free food providers and learn which items can be provided to help to complete a GF diet plan. Since breads and pastry items are important for most patients, try out bread items from several sources and learn which selections will fit best.  Place an emphasis on the thousands of foods available rather than on what is not available “for your particular fancy” in the gluten-free foods market.  Concentrate on what you can have rather than what you can't have. 

             In developing the 20 List for the diet, it may be helpful to do a columnar plan with information on availability, storage needed, and notes for cooking if special treatment is applicable. 

             Plan for adequate freezer, refrigerator, and shelf storage.  The reality for most celiacs is finding an increased need for both freezer and refrigerator storage.  Several of the gluten-free flours and products have a short shelf life; these products may become rancid or develop molds quickly in dry storage; some products dry out in a short time; many attract vermin.  Thus, planning for adequate freezer storage and attention to shelf life may be product treatments new to the celiac consumer.

             Basic Items for the Kitchen.  Stocking up on items needed for cooking will make up an additional listing.   Which seasonings, shortenings, thickeners, flours, sugars, flavorings—fit the dictates of the gluten-free diet.   The following listing will help the new celiac in getting started.   

        Eating out.  You might start out with a baked potato, a well-done steak, and a salad without croutons for which you brought the dressing.  Enlist the help of the chef or the cook and manager at several of your favorite restaurants in your area to work out GF menus from the specialties at their hotel or restaurant.  You will find nothing but interest and support and help--in addition to wanting to learn more about your diet and special needs.  Ask for help.  Concentrate on the foods you can have.  Be appreciative of the extra service and show it in both your thanks and gratuity.  Don't get out your prayer book with the one that starts with, "O Lord, how hard I've got it and there's never anything I can eat."  

        Let the chef or the cook figure out the holes and that perhaps this offering tonight isn't quite up to standard for a full meal.  After a few times, you will be pleasantly surprised with some new GF food selections.   You may even get a call to invite you in to try out some new recipes. And, dropping off some information on Celiac Disease--after you've caught some interest will confirm their appointment to your team.      

        Planning for Gluten-Free Medications.  While there are only several hundred of the thousands of medications in the market that contain gluten, many medicaments [pills and capsules] do make use of ingredients such as wheat starch as sealers, as an excipient or inactive ingredient, as a filler or extender, as an enhancement, as diluents, as a basal agent for another inactive ingredient, or as the base combining ingredient for the entire formulation.  With these several potentials for contamination, the celiac patient will need to make use of both physician direction and pharmacist monitoring with the need for exacting ingredient information to be obtained from manufacturers and secondary suppliers.  In most cases, it is easy to procure information on the chemical ingredient that is the named medication.  However, this active ingredient may be less than a two or three percent of the entire contents.  It is the remaining 90 to 97 percent of the pill that needs to be identified.  Thus, it is with these identifications that the patient will need to enlist the assistance and direction of a pharmacist or of a pharmacology unit at a state university. 

             When the celiac patient develops a relationship with a pharmacist for assistance with the selection of prescription medications, it will also be helpful to add to the prescription medications, all over-the-counter medications.  It will be necessary that each of these products to have the same in-depth review and surveillance as is being done for prescription medications.   Common items such as Tylenol and Aspirin with or without gluten content may not be a common information item for a clerk or for the celiac involved.  Thus, the services of a knowledgeable pharmacist will need to be available for both prescription and non-prescription drug and medicine selections.  

             Should any nutritionals such as vitamins and food supplements be indicated, it is typically easier to do such items via prescription from the monitoring physician.  With this methodology, these prescriptions can be ordered as gluten-free, they can be adapted to fit the dosage needs for the patient, there can be follow-up and monitoring related to absorption, and under prescription—these  types of prescriptions are likely to also fit into the insurance coverage for the individual involved. 

             When absorption through the skin is also a problem.  While put-ons and contaminated items that touch the skin are thought to be a problem for only a smaller percentage of celiac patients, it is an important area for consideration and review for all newly diagnosed celiacs.   Considerations should include shampoos and conditioners with wheat germ oil, yellow dyes, and wheat starch content; some celiacs then find that a mild shampoo such as Johnson’s Baby shampoo works well.  Other celiacs choose a non-allergenic item from the Non-Allergenic Drug Item section found in most pharmacies.   Along with shampoos is the consideration for laundry detergents used for washing clothing, towels, and bed linens.  One of the mild detergents will likely satisfy this problem, however, a non-allergenic selection is often the better choice—especially for young children and older adults.   At the same time the detergent is changed, the celiac must also wash all newly purchased items of clothing so as to eliminate sizing and stiffening agents that are typically based on wheat starch and/or one of their derivatives.  

             Hand soaps and soaps for use in the shower; colognes, perfumes, and after-shave preparations; deodorants; skin creams; hair treatment items; all cosmetics; toothpastes and mouth washes—if used by the celiac, will need to be reviewed for content and then with consideration as to whether these products are safe for use.  With the assistance and review of a pharmacist, a listing of items for the skin application can be developed.   For this listing, the celiac needs to be reminded that content in many of these items may change from batch to batch.  Thus, a safe item this week may need to be placed on the non-allowed listing next week.  Read and review labels.  Learn the needs prescribed for your particular version of the illness and follow up with prudence and exacting use for allowed items. 

             Summarize with the following checklists.  The newly diagnosed celiac and DH patient can review needs for a suggested action plan with the following reminders:  [a development plan to fit you and the needs of the illness].  Your familiar with the Basic 4;  for the Celiac, it's the Basic 8.

              Develop a plan, work your plan.  Make your plans in conjunction with your monitoring physician, a consulting pharmacist, and a consulting dietitian.  Solicit help and advice within a system of health professionals.  Work toward the development of a plan of self-management that works for you and your version of the celiac condition.  Enjoy your treatment plan--the gluten-free diet. 

Telephone:  (402) 553-4477

Facsimile: (402) 553-3266

U.S. Mail:     Celiacs, Inc.,
                      PO Box 31144
                            Omaha, NE 68131

info@e-celiacs.org

Updated on 10.05.02   webmaster@e-celiacs.org