Recommendations for Persons
Recently Diagnosed With Celiac Disease
By Roxie Johnson
Congratulations! You are on your way to better health. The following are recommendations I would make to a friend as a result of my own experiences with celiac disease. It is not meant to to be a substitute for medical advice - please consult your own medical team regarding
treatment, diagnostic and medical concerns.
You are not alone: Watch the 3 minute YouTube video The Faces of Celiac Disease to see real people talking about before and after being diagnosed with celiac disease.
A strict gluten-free diet for life: You have to be extremely careful to not digest any gluten for the rest of your life, despite possibly having no symptoms. The Gluten Intolerance Group magazine in 2009 states: "Less than 1 mg of gluten (1/50th of a slice of bread) can cause significant sustained mucosal inflammation in the small intestine." This inflammation will increase the risk of a myriad of health problems including, among other things, mineral deficiencies, osteoporosis, anemia, infertility, and lymphoma. But it definitely can be done, while eating very well.
Until you have the time to study the gluten-free diet thoroughly, eat only fresh whole foods (plain meats, vegetables, fruits, eggs, unflavored rice, real butter, unflavored olive oil, milk, and pure spices). It is common to make many mistakes in the diet before becoming thoroughly educated on ingredients, so play it extra safe at first. This means keeping away from processed foods until learning and understanding food labeling terminology (see "Education"). You may also, of course, eat any foods labeled "Gluten Free" on the packaging.
Must-Do's for Newly Diagnosed Celiacs article in the Living Without Feb./March 2010 issue.
A Gluten-Free Diet Guide for Families is available as a PDF from the Children's Digestive Health and Nutrition Foundation. It is full of good information for both Celiac children and adults.
The Gluten Intolerance Group (GIG) is a national celiac support group. They have many free printable educational materials which are excellent. The publications include "Quick Start Diet Guide", "Easy to Find and Fix Foods", and "One Step at a Time".
The Gluten-Free Living website has informative sections called "How to Get Started", "Basic Diet", and "How to Shop"
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With the improved ingredient labeling policies now in effect in the United States, it has become easier to determine what is and isn't gluten-free. You must get in the habit of always reading the ingredient label every time you purchase a product. This is much safer than using any product list that can be inaccurate and out-dated.
It is helpful to know which ingredients are safe and which ones you should question. The following are some resources for this.
"Yes, No, and Maybe Ingredients" on this website
The GIG "Quick Start Diet guide".
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It is highly recommended that you visit your nearest specialty food store (see SD Food Stores) and when you can stay awhile. Look for all the foods that are available labeled “gluten free”. Keep in mind that "wheat free" is not good enough. The following grocery chains provide lists of GF foods at their stores:
Trader Joe's provides a "No Gluten" food list online and in a brochure at each store. Each Whole Foods store has a list of gluten-free products at the customer service counter.
More and more foods are now being carried in mainstream grocery stores that are marked "Gluten-Free". It will take a little time to find them at first, as they are often dispersed throughout the stores.
Educate yourself and your family (you need their support and understanding as you tackle this new eating lifestyle). Take advantage of all of the information provided on the many websites and in the many excellent books available on Celiac Disease.
The National Institute of Health (NIH) provides a wealth of information online at www.celiac.nih.gov. See About Celiac Disease on this website for many excellent informational websites concerning celiac disease.
The following are further resources appropriate for the recently diagnosed:
- You'll want to get rid of most of the gluten-containing foods in your kitchen. If possible, get a friend who has celiac disease to help you do this task, as it can seem overwhelming and confusing. When in doubt, give the food item away, or put it away in a separate box until you can carefully research it later (use the contact information on the product label to ask the manufacturer directly, or check one of the GF food shopping guides). Don't risk the chance of eating gluten by mistake.
- Give yourself a fresh start in the kitchen. Wipe down your cupboards, countertops, cutting boards, etc. thoroughly where gluten crumbs and flour could be lingering. Remember that only a tiny amount of gluten could cause damage to your intestine, even if you don't feel sick from it. You may want to thoroughly clean your cooking utensils as well. Consider starting with new sponges and/or dishrags and make sure they are frequently washed.
- This is an important issue if there are those in the household who are not eating GF. Try to isolate the few gluten-containing foods (i.e. cookies and bread) you decide to keep for other family members into one area (a drawer or shelf, etc.). Consider disposing of all gluten-containing flours as they easily spread (concentrate on GF baking instead).
Cooking Tools: Be aware of cutting boards, knives, pots and pans, utensils, etc. that may cause cross-contamination. Get a new toaster or toaster oven for the GF eater(s). Consider getting new cutting boards and collanders that would be dedicated for gluten-free food preparation.
You'll need the cooperation of the gluten eaters in the family to develop "clean habits". For example, they'll need to be careful not to "double dip" into things like margarine, mayonnaise or peanut butter after using the knife to spread on their bread (squeezable bottles of condiments may work best.) They'll also need to be careful to wipe down counters, tabletops, etc. whenever they eat gluten-containing foods.
- If children are involved, it may be helpful to use an easily identifiable sticker to label either the gluten or GF food items in the kitchen.
- GF safety at home,
Gluten Free Kitchen Items
- See the Columbia University celiac center discussion on this: www.celiacdiseasecenter.columbia.edu and http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C07-Management.htm (written for doctors)
See the University of Chicago celiac center "Post-diagnosis Follow Up" Factsheet.
Also see a recommended list of Treatment / Follow-up Care on this website.
- See the Columbia celiac center discussion on this: www.celiacdiseasecenter.columbia.edu
The National Institute of Health (NIH) states on their website: "For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvement begins within days of starting the diet. The small intestine usually heals in 3 to 6 months in children but may take several years in adults. A healed intestine means a person now has villi that can absorb nutrients from food into the bloodstream."
- Although the medical profession has been improving in recent years in their knowledge of celiac disease, many physicians still have a long way to go. If you are feeling uncomfortable with your physicians knowledge of celiac disease, it is recommended to see a physician who is more familiar with it. In San Diego, you might consider seeing a physician associated with the Warren Center Celiac Disease Clinics. A support group in your area could also make recommendations for knowledgeable physicians.
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Be aware that because your digestive system has been under duress, you may also have developed a temporary or permanent intolerance to other foods (dairy, soy, corn, etc.). If you don’t start feeling much better in the next few months, consider an elimination diet. It is not uncommon for a physician to recommend eliminating dairy from a recently diagnosed celiac for at least six months. This should be decided on with your physician.
One common problem newly-diagnosed celiacs have is an intolerance for dairy. This may only be temporary. Tricia Thompson, RD, who specializes in the gluten-free diet, has written an article about the celiac-lactose intolerance connection on the diet.com website.
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Consider having other family members screened for celiac disease. Because this is a genetic disease, immediate family members have a much higher probability rate than the general population.
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The information, including opinions and recommendations,
contained in this website is for educational purposes only. Such information is not intended to be a substitute for professional medical advice, diagnosis or treatment. No
one should act upon any information provided in this website without first seeking
medical advice from a qualified medical physician.
