Question

If a food label only calls out milk and soy as allergens and has no cross-contamination warning, is it safe to say it is gluten-free?

Answer

Labeling for the top nine allergens is very different than labeling gluten-free. According to the Food Allergen Labeling and Consumer Protection Act (FALCPA), manufacturers are required to state in common English terms the top nine allergens (eggs, milk, soy, wheat, nuts, tree nuts, fish and shellfish) on the ingredients statements of a package label, if the product contains any of these allergens. The dislcaimer statements (i.e., made in a facility that processes xx) are voluntary and used by manufacturers to let customers know that possible contact may have occurred with these ingredients. It’s important to note that while wheat is one of the top nine allergens and must be clearly labeled on food packages, barley and rye are not and so are not required to appear on a product label and may be hidden as undeclared ingredients. The FDA’s gluten-free labeling ruling is quite different. It is voluntary and does not require that gluten-containing ingredients be clearly labeled on the ingredients statement, as is the case for the top nine allergens. Rather, this piece of legislation requires that companies who voluntarily make a gluten-free claim on their product packages take the necessary steps to ensure that these products meet the standardized criteria for gluten-free. While the ruling has many criteria, in short the FDA gluten-free labeling law requires that products labeled gluten-free contain less than 20 parts per million (ppm) of gluten. This threshold is internationally recognized as safe for the majority of people with celiac disease. To reiterate, gluten-free labeling is voluntary. Just because a product doesn’t make a gluten-free claim doesn’t mean that it is unsafe. In fact, there will likely be many products on supermarket shelves that are safe to eat yet will not carry a gluten-free claim. A product making a gluten-free claim should meet the less than 20 ppm criteria. And we should feel confident that most companies are currently adhering to the ruling. However, it is important that consumers understand that manufacturers making gluten-free label claims are not required to test their products for gluten. Products certified gluten-free by a third party or for which the company conducts its own testing provide an extra layer of security. To ensure the safety of other products that are labeled gluten-free but not certified, call the manufacturer. So, the answer to your question is no. A product with no gluten-free claim that calls out milk and soy allergens cannot be considered safely gluten-free, because gluten is not required to be called out on the label (only wheat is a top 9 allergen). However, the product isn’t necessarily unsafe either. Be well, Rachel Begun, MS, RDN

In addition to the questions listed below, requests were made for recipes that take into account food allergies and sensitivities in addition to celiac disease. NFCA encourages the community to check out last June’s webinar, “Yes, You Can Eat! When Gluten Isn’t The Only Ingredient You Avoid” for answers to your dietary-related questions.

Question 1

Q. Are there any recipes you recommend that do not use potato flour, potato starch, or tapioca starch? I am looking for foods with a higher nutrient content.

A. Here are a few recipes that use gluten-free grains such as amaranth, teff, certified gluten-free oats, as well as flax seeds. I love using these grains since it ups the nutritional content, plus they taste delicious!

• Carrot Apple Energy Bars
• Apple Cranberry Crisp
• Cranberry Pistachio Biscotti
• Pecorino Pizza Crust

Also make sure you check out these blog posts from Shelley Case:

• Healthier Gluten-Free Desserts
• Whole Grains and the Gluten-Free Diet

Question 2

Q. In addition to the in-season produce shopping list, do you have any budget-friendly suggestions on how to involve more naturally gluten-free items (i.e. non specialty recipes/products)?

A. I love to try recipes that that have as the “foundation” naturally gluten-free items like rice and potatoes. These basic and naturally gluten-free items are inexpensive and so versatile! To kick-up the nutritional value even further I’ll use brown or wild rice and sweet potatoes. I have also taken a rice “side dish” and kicked it up a notch by adding in chopped chicken and veggies, and transforming it into an amazing “main course.” Here are a few recipes for you to check out. (Remember: it’s both OK and encouraged to get creative and add-in extra protein (meats, fish, and tofu) to make it a super-nutritious meal in a snap!)

• Brown Rice & Spinach Casserole
• Bell Pepper & Raisin Pilaf
• Broccoli Cheddar Pie with a Hash Brown Crust

Question 3

Q. Do you have any suggestions for clients who live in very rural areas with smaller grocery stores that do not stock specialty gluten–free products?

A. The Internet! There are many great resources to buying gluten-free products online. Even living near a major metropolitan area, I still order much of my food from online resources. It saves me time by not having to drive to numerous stores to get my favorite products and also saves me money! Some of my favorites are Amazon.com or Vitacost.com. There are also other resources that are in the Webinar presentation that you may find useful, as well as the accompanying downloadable guide, “Gluten-Free Menu Planning: Budget-Friendly Tips”.

Another tip is to do a “group buy” online with other individuals in your local area that are also eating gluten-free. This will allow you to buy in “bulk” and split the cost of buying in large quantities, as well as often times eliminating the shipping costs since you are buying higher quantities. Good luck!

Question 4

Q. Can you recommend any smart phone applications that can facilitate the gluten-free menu-planning?

A. I don’t use a smart phone application for my gluten-free meal planning, but I have read up on some that look pretty good. They include:

• Cook It Allergy Free
• Gluten-Free Recipes 1000

Question 5

Q. Do you have any budget-friendly or recipe tips on feeding small children with celiac disease?

A. It is helpful to take the basic go-to favorites of your child and try to “recreate” those recipes gluten-free. Getting the kids engaged in their food choices also is a great idea! Go to a farmers market and give them a few dollars to spend on their own special treats, have them help out in the kitchen, and bring them grocery shopping and choose gluten-free food choices they can be excited to try. If you have a child that is on a gluten-free diet and a picky-eater, be sure to check out this article from Shelly Case, since she shares some great tips. Some of kid-approved recipes include:

• Cayenne-Dusted Chicken Nuggets (NOTE: Omit the Cayenne spice for kids!)
• Sweet Italian Sausage Mac and Cheese Bake
• Honey-Mustard Drumsticks

Also, check out my video on making gluten-free fish batter (Note: Works great on Chicken for too!). The National Foundation for Celiac Awareness (NFCA) hosts a "kids only" section of their website, Kids Central, complete with tips, recipes, games and more.

Question 6

Q. In my experience, homemade bread and other baked goods that are gluten-free tend to become dry in just a couple of days. Have you found any way to prevent or lessen this problem?

A. I try to keep my gluten-free baked goods in the refrigerator to keep them fresh longer. Another trick I use is to slightly moisten a paper towel, “wrap” it around the baked good and place it in the microwave for about 30-45 seconds before eating. This makes it softer and more pliable. This trick also works great for gluten-free corn tortillas and wraps!

Following the February 2013 webinar "Sex and the Celiac: A Focus of Reproductive Health," NFCA worked with panelist Stephanie M. Moleski, MD, Assistant Professor of Medicine, Thomas Jefferson University Hospitals, to address the remaining questions from the live airing. The following guest post contains Dr. Moleski's responses.

Question 1

Q. Is there gluten in other body fluids such as semen, urine, sweat, etc?

A. The only body fluid which has been shown to contain gluten has been breast milk. However, scientific studies are lacking for gluten in semen, urine, and sweat.

Question 2

Q. Since complete blood counts (CBCs) can be normal with low values for ferritin, iron, and other iron panel studies, should patients with celiac disease be given low dose iron supplement to get iron storage optimized before the hemoglobin drops? Should we treat this subclinical anemia?

A. Anemia is commonly found in patients with untreated celiac disease. When any patient is diagnosed with iron deficient anemia it is important that a thorough investigation is done for the etiology of the anemia. Anemia may be multifactorial caused by low iron intake (such as a vegetarian diet), inadequate absorption of iron from the gastrointestinal tract (as it is in celiac disease) and chronic blood loss. When patients with celiac disease are found to have iron deficient anemia it is still important to evaluate for other sources of anemia if there are risk factors. Patients with celiac disease and iron deficient anemia should be started on iron supplements under the direction of a physician. Due to potential side effects of iron supplements, such as nausea or constipation, it is not generally recommended to start a patient on iron unless they do in fact have an iron deficiency.

Question 3

Q. How long should a newly diagnosed woman wait to optimize her health with the gluten-free diet and nutrient support before attempting fertility treatment?

A. There is no clear time frame identified in which it is best to attempt pregnancy after a new diagnosis of celiac disease and initiation of a gluten-free diet. However, a case series by Nenna and colleagues looked at women seeking care at fertility clinics. Of these women, four had been diagnosed with celiac disease. All became pregnant within 2-9 months after initiating a gluten-free diet.

Source: Nenna R, Mennini M, Petrarca L, Bonamico M. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Gut. 2011 Jul;60(7):1023-4

Question 4

Q. Regarding male fertility, I understand that the more recent studies show no difference in the fertility of a male celiac disease patient before or after treatment by a gluten-free diet. However, wouldn't severe malnutrition--a complication of long-term, untreated celiac disease -- affect sperm count?

A. The most recent study by Zugna and colleagues on male infertility and celiac disease does not show a decrease in fertility in patients with celiac disease. However, earlier studies have shown that celiac disease is associated with androgen resistance, lower levels of dehydroepiandrosterone sulphate and reduced sperm motility. Characteristics of malabsorption in patients with untreated celiac disease, such as zinc deficiency and low levels of folic acid, may have adverse effect on fertility in males. More studies need to be done in this area before definitive conclusions can be made.

Source: Zugna D, Richiardi L, Akre O, Stephansson O, Ludvigsson JF. Celiac disease is not a risk factor for infertility in men. Fertil Steril. 2011 Apr;95(5):1709-13.

Question 5

Q. Have there been any studies with new mothers to determine a relationship of undiagnosed celiac disease causing low birth weight babies?

A. There have been studies looking at undiagnosed celiac disease and low birth weight babies. An Italian study by Salvatore and colleagues found that 1.60% of women with low birth weight babies had undiagnosed celiac disease, which was 2.25 times greater than women without celiac disease. In a large Danish population based cohort study, women with undiagnosed celiac disease had a higher risk of small for gestation age infants, very small for gestational age, and preterm birth when compared with women with a previous diagnosis of celiac disease. The authors assumed that women with a prior diagnosis of celiac disease were already on a gluten-free diet.

Sources: Salvatore S, Finazzi S, Radaelli G et al.: Prevalence of undiagnosed celiac disease in the parents of preterm and/or small for gestational age infants. Am. J. Gastroenterol. 102, 168–173 (2007).

Khashan AS, Henriksen TB, Mortensen PB et al.: The impact of maternal celiac disease on birthweight and preterm birth: a Danish population-based cohort study. Hum. Reprod. 25(2), 528–534 (2010).

Question 6

Q. Can you discuss gluten sensitivity (not actual celiac disease) and any potential relationship to infertility? If one does not actually have celiac disease but believes they are gluten sensitive, could this be related to infertility?

A. There are studies showing that (non-celiac) gluten sensitivity exists and that many patients have similar symptoms such as GI complaints and fatigue. These studies have shown that that it is a separate disease entity from celiac disease. However, there are no studies looking at (non-celiac) gluten sensitivity and infertility.

Source: Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol. 2011 Mar;106(3):508-14.

Question 7

Q. As you referred to kissing, what about a spouse that eats high carb-containing foods and the impact on their semen? Can this cause vaginal reactions such as inflammation?

A. The only body fluid which has been shown to contain gluten has been breast milk. However, scientific studies are lacking for gluten in semen.

Question 8

Q. In the case study, the subject was pregnant within 10 months. Is there a certain time, such as a number of months, of being treated with the gluten-free diet that you see an increase in pregnancy rates?

A. There is no clear time frame identified in which it is best to attempt pregnancy after a new diagnosis of celiac disease and initiation of a gluten free diet. However, a case series by Nenna and colleagues looked at women seeking care at fertility clinics. Of these women, four had been diagnosed with celiac disease. All became pregnant within 2-9 months after initiating a gluten free diet.

Source: Nenna R, Mennini M, Petrarca L, Bonamico M. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Gut. 2011 Jul;60(7):1023-4

Question

Is it true that hydrogenated vegetable oil/protein contains gluten? Also, what about wheat germ oil? From, Rhonda

Answer

Dear Rhonda, Thanks very much for your question regarding the possibility of hydrogenated vegetable oil/protein and wheat germ oil containing gluten. Hydrogenated vegetable oil, which is liquid vegetable oil that has had hydrogen added to it to make it less likely to spoil, is not a healthful addition to the diet, but not because it contains gluten (it doesn’t), but rather because the process of hydrogenating vegetable oil creates trans fats, which have been implicated in heart disease, as they raise bad (LDL) cholesterol, while also lowering good (HDL) cholesterol. Therefore, while I recommend everyone avoid consuming hydrogenated vegetable oil in his or her diet, you don't need to worry about gluten ingestion if you happen to consume a food that contains hydrogenated vegetable oil. In regards to hydrogenated vegetable protein, I am assuming you are referring to an additive called “hydrolyzed” vegetable protein (HVP) instead of “hydrogenated" vegetable protein. HVP is used as a flavoring agent in foods and can be derived from corn, soy, wheat or other plant proteins, such as peanuts. In the United States, if HVP is derived from wheat, it must be declared on the label as hydrolyzed wheat protein, but in Canada it may be labeled simply as hydrolyzed plant protein or hydrolyzed vegetable protein. The bottom line here is to always read labels. Finally, wheat germ oil can be a little confusing regarding gluten content. In the United States, under the Food Allergen Labeling and Consumer Protection Act (FALCPA), any highly refined oil (oil that has been heavily processed) or ingredients made from highly refined oil, are exempt from allergen labeling, as these refined oils are thought to be safe for the food-allergic/intolerant population to consume. Oils that are not highly refined (i.e. mechanical or cold-pressed oils), may not have all of the protein removed, and may, theoretically, contain residual amounts of gluten and should be avoided by those with celiac disease. I hope this helps clear up any confusion! In good health, EA Stewart, MBA, RD

Following the January 2013 webinar "It's Not Just Food Anymore: An Update on Gluten-Free Alcoholic Beverage Labeling," NFCA invited listeners to submit their questions about labeling regulations. The questions and answers from webinar panelist Tricia Thompson, MS, RD of Gluten-Free Watchdog, are included here.

Question 1

Q: When are manufacturers going to start labeling hard liquor with new gluten-free labels? A: Gluten-free labeling of alcoholic beverages regulated by the TTB is voluntary. It is not clear at this time whether manufacturers will choose to label qualifying beverages gluten-free.

Question 2

Q: Are there gluten free beers that are 100% gluten free because they don't have barley malt in them? A: Beers made using a substitute for malted barley are regulated by the FDA and may be labeled gluten-free if they meet the criteria proposed by the FDA. Varieties include Bard’s Tale and Redbridge (made by Anheuer-Busch).

Question 3

Q: What about drink mixes? Do they follow FDA labeling laws? A: Drink mixes, such as bloody Mary mix are under the jurisdiction of the FDA. If a product is labeled gluten-free it should abide by the criteria included in the FDA’s proposed gluten-free labeling rule.

Question 4

Q: What about gluten-free beer made in non-gluten-free facilities? Can we trust test results of non-barley based beer that were tested pre-fermentation? Do you have a suggestion for the best way for non-barley based beer producers to test their products? A: Under the FDA’s proposed gluten-free labeling law, products under their jurisdiction (e.g., beer made using a substitute for malted barley) must contain less than 20 parts per million of gluten regardless of whether gluten is in the product due to an ingredient or cross contamination. Manufacturers of these types of beer should test their raw ingredients for gluten contamination using the formally validated sandwich R5 ELISA Mendez method (Ridascreen gliadin R7001). The final product should be tested using both the sandwich and competitive R5 ELISAs. The competitive R5 ELISA, while not formally validated is the best available test we currently have for assessing fermented and hydrolyzed products for gluten.

Question 5

Q: What is the difference between the sandwich R5 ELISA and competitive R5 ELISA? A: Please see the blog entry Gluten Testing: Hydrolyzed Gluten on GlutenFreeDietitian.com and the National Foundation for Celiac Awareness' (NFCA) webinar archive for the slides and recording of “Setting the Record Straight: Dispelling Gluten-Free Manufacturing and Production Myths.”

Question 6

Q: How would cross-contamination be detected in gluten-free beverages manufactured in facilities also producing gluten-containing products? A: First, manufacturers must make sure that their raw ingredients (starting materials) are not cross-contaminated with gluten. Just because naturally gluten-free grains are used does not mean they are not contaminated with gluten. This testing can be done using the sandwich R5 ELISA. In their interim rule the TTB states that manufacturers labeling products gluten-free must ensure that the raw materials, ingredients, production facilities, storage materials and finished products are not cross contaminated with gluten. The final product should be tested using both the sandwich and competitive R5 ELISAs. The competitive R5 ELISA, while not formally validated is the best available test we currently have for assessing fermented and hydrolyzed products for gluten.

Question 7

Q: Why is it that individuals with celiac disease in other countries, such as Canada, can enjoy gluten-free beers with barley and processed to remove gluten? A: Different countries have different gluten-free labeling rules. Individuals in the US with celiac disease are free to make the personal choice to drink a beverage labeled “Processed to remove gluten.” In the U.S., however, barley-based beers cannot be labeled gluten-free at this time.

Question 8

Q: When you tested wine for gluten you used both sandwich and competitive R5 ELISAs. Why would we use the test for wine and trust it but not for malt beverages? A: It isn’t that we trust the assay for wine but not for malt beverages. Whenever I have a fermented/hydrolyzed product tested that potentially contains gluten protein, I used both the sandwich and competitive R5 ELISAs. It is simply my standard operating procedure. Wine was therefore tested using both the ELISAs, but there is an important difference between wine and malt beverages. Wine is fermented from grapes. In other words, the starting material for wine is gluten-free. The concern with wine is wheat flour paste used to seal oak barrels in which wine is aged. Any wheat in the wine would be detected using the sandwich R5 ELISA because the wheat gluten would not be hydrolyzed.

Question 9

Q: Can you provide more information on the new UPEX extraction solution? A: UPEX stands for Universal Prolamin and Glutelin Extractant Solution. It was recently evaluated in the scientific literature. Reportedly this solution is able to extract protein from hydrolyzed and heated foods and beverages. For more information, please see the National Institute of Health website.

Question 10

Q: I am confused by the significance of hydrolyzed protein and its impact on the testing for gluten using today's available tests. Can you please elaborate? A: For an explanation of why hydrolyzed gluten is difficult to test using the sandwich R5 ELISA please see the blog entry on GlutenFreeDietitian.com: Gluten Testing: Hydrolyzed Gluten.

Question 11

Q: Why is it important for the competitive R5 ELISA to be formally validated? A: A formally validated method is defined by the FDA as one that underwent a multi-laboratory performance trial. For example, the sandwich R5 ELISA with cocktail extraction underwent such an evaluation. This evaluation was coordinated by the Prolamin Working Group of the Codex Alimentarius Commission and involved 20 different labs worldwide. The conclusion based on the findings was that the method “is well suited to determine gluten content in the range (20 ppm) which is currently being discussed by the Codex Alimentarius.” It was further stated that, “a sandwich-type assay like this is not very suitable to measure peptide which lack repetitive epitopes, in this case, a competitive assay format would be better. The scope of the method should thus be limited to gluten-free food contaminated by intact gluten protein.” While we now have a competitive R5 ELISA it has not been formally validated. There have been issues surrounding extraction solutions capable of measuring both prolamins and glutelins as well as peptides in foods/beverages that are both hydrolyzed and heat-treated. This may have been resolved with the UPEX extraction solution mentioned above. However, this solution is not yet available commercially to my knowledge. There also have been issues relating peptide fragments to toxicity of intact gluten protein although new standards are now being used. When it comes to allowing foods and beverages containing fermented gluten protein (i.e., protein that may be found in barley-based beers and soy sauce containing hydrolyzed wheat protein) to be labeled gluten-free, we need to make sure the assay is accurately measuring potentially toxic protein fragments. Formal validation of the competitive ELISA is the next step now that there appears to be a universal extraction solution and standards that allow for the quantification of gluten peptides.

Question 12

 

Question:

For people with a gluten-related disorder, should oat straw consumption be treated the same as oats?

Answer:

Dear Tamara,

This is a great question because oat straw has been getting some attention lately as a new “superfood” rich in calcium and other minerals with the potential to boost hormone levels that stimulate cell growth, which may in turn help with in osteoporosis prevention (although the evidence is limited thus far).

This being said, I could not find any mention of whether or not oat straw contains gluten in the scientific literature. Indeed, there is the very high potential that the oat straw may be contaminated with gluten from wheat, barley or rye during harvesting, transporting, milling and processing, just like oats may be, so my recommendation would be to not consume any oat straw or products with oat straw, unless the manufacturer can certify it to be gluten-free.

In good health,

EA Stewart, MBA, RD

Question

I'm struggling to lose weight now that I've “mastered” the gluten-free diet after being on it for 4 years. Other than eating salads at every meal, do you have any suggestions or foods that I should totally avoid? Sincerely, Mary-Frances

Answer

Dear Mary-Frances, Thanks so much for your question, and perfect timing since many people are looking for weight loss solutions in the New Year. My short answer to your second question is that, no, there aren’t any foods you should totally avoid, as I believe this “all or nothing” approach to eating should be avoided at all costs, as it rarely leads to lasting weight loss or good health. Instead, and to answer your first question, my first suggestion is to examine your overall diet and see what small tweaks can be made that will lead to better health and gradual weight loss. For instance, how many servings of vegetables and fruit are you eating each day? I recommend a minimum of 5 servings to all my clients, with the ultimate goal of 7-9 servings per day. The great thing about produce is that not only is it full of nutrients, but with a high fiber content, it’s also filling, and I find that many of my clients replace “less nutrient-dense, more caloric foods” with veggies and fruits when they take this approach. This, in turn, will ultimately lead to gradual weight loss. My next suggestion would be to make sure you are consuming a well-balanced diet at every meal and a snack that includes complex gluten-free carbohydrates (vegetables, fruit, quinoa, millet, gluten-free oats, brown or black rice, corn, and more), lean protein (fish, grass-fed beef, poultry, tofu, eggs, beans and legumes) and healthy fats (olives/olive oil, avocado, nuts and seeds, high-oleic sunflower oil and fatty fish). This combination of macro nutrients will keep you full throughout the day and will provide you the energy you need to exercise, which is an equally important for weight control. To help you achieve your goals, I highly recommend a personal nutrition consultation with a dietitian skilled in the gluten-free diet. It is a worthwhile investment and he or she will be able to work with you on a diet that not only meets your health and nutrition needs, but also will be one that you enjoy, which is so important for long-term success! In good health, EA Stewart, MBA, RD

Question

In the past 1.5 years, I've lost almost 60 lbs (not by choice). I found out it was due to a medication I was on and have since stopped taking it. I get IV treatments twice a week now (protein on one day, minerals the next) because I've lost all muscle. I need to know how to gain weight properly, but I have now found out I have an allergy to milk and eggs. I need suggestions please. I'm so weak I can hardly walk. From, Rene

Answer

Dear Rene, Thank you for your question, and I’m very sorry to hear about your health struggles these past couple of years. Assuming you have an otherwise clean bill of health from your physician, and now that you’re off the medicine that was causing your weight loss, you should be able to slowly start re-gaining the weight you lost, by following a well balanced diet of complex gluten-free carbohydrates, lean proteins (other than milk and eggs) and healthy fats such as nuts, avocadoes and olive oil. To keep your energy up, you should plan on 3 meals a day, plus a couple of snacks in between meals to make sure you are getting adequate calories throughout the day. Assuming you have no other food allergies and intolerances other than milk and eggs, here are some suggestions for a full day’s menu:

• Breakfast – Gluten-free oats topped with non-dairy milk of choice, plus a handful of nuts and dried fruit. Serve with fresh fruit of choice.
• Mid-morning snack – Avocado smoothie; Combine non-dairy milk of choice with ½ avocado and 1 cup frozen fruit of choice.
• Lunch – Quinoa salad; Cooked quinoa topped with pine nuts, peas, chopped chicken or turkey, chopped spinach, and a vinaigrette of olive oil, golden balsamic vinegar, salt and pepper. Serve with fresh fruit of choice.
• Mid-afternoon snack – Hummus with raw veggies and gluten-free pita (I like to bake Udi’s gluten-free pizza crusts and cut them into wedges for a pita bread substitution.)
• Dinner – Gluten-free spaghetti and meatballs, served with steamed broccoli, green salad with oil and vinegar and fresh fruit.

Hopefully these meal ideas will help you regain the weight you have lost; however, if you find you’re the same weight after a few weeks of well-balanced eating, you may want to schedule a consultation with a dietitian who specializes in celiac disease and food allergies, and who can provide you with more healthy and delicious meal ideas tailored to your food preferences and lifestyle. In good health! EA Stewart, MBA, RD

Following the August 2012 webinar "Back to School: Preparing to Educate School Administrators on the Importance of Gluten-Free," NFCA invited listeners to submit their questions about advocating for gluten-free needs at school. The questions and answers from webinar panelist Gabriela Pacheco, RD, LD, SNS, are included here.

Question 1

Q: My daughter is 7 and in the second grade. She has celiac disease. As far as I know, no one else at her school has celiac. My question is that if I looked into the 504, will the school even take this into consideration? The food is prepared elsewhere and then brought to the school. I would like to know if this is something I should look into. It would be great if she could have a hot meal from time to time and eat what her friends are having.

A: The 504 plan is for children with a disability or a food allergy with severe reactions, such as anaphylaxis. If a physician states in a diet prescription that your daughter would have adverse effects after ingestion or cross-contamination with gluten, then a 504 plan can be considered. Without the diet prescription the school can, but does not have to, modify meals.

If the meals are prepared at a satellite kitchen then brought to school, the modifications need to be made at that facility. Talk to the foodservice director for the district about modifications. If you do get a diet prescription from a qualified medical authority, then meals have to be modified, and some staff training needs to be done as well.

Speak to them about your daughter’s request to eat what her friends are eating. Being or feeling segregated can be very upsetting for a second grader. Maybe just a little communication with the foodservice director and staff serving at school will suffice. Create a partnership with them and also make sure your daughter is aware of some of the trigger foods and ingredients. A team approach, with or without a 504 plan, is the best approach.

Question 2

Q: After the webinar, I called my school district to ask about their nutrition program/ regulations, and about filling out a 504 or diet prescription plan. The head school district nurse did not understand what a nutrition program was. Nor did she believe a 504 was needed, as the special diet "does not interfere" with getting an education. They said I can try talking to the head of the foodservice group, but that probably my daughter should only bring in all her meals.

As for Home Economics (as you had in your case study), she can do the baking and just not have to eat anything. They did not think exposure to gluten products (art supplies, etc.) if not ingested was a concern.

They really were not caring about "quality of life" aspects. They said because she's 12 years old, she should be able to handle it all. That may be fine for someone who's had more training dealing with her condition, but my daughter has only known for two months that she has celiac disease. She was diagnosed over the summer break and this will be her first time dealing in the school environment. I have not found any support so far, surprisingly even from the medical profession.

So, now what do you do? How much do you push? Is it really that they have no clue, or are trying to protect their hides? I still plan to write letters to all the school staff mentioned in the webinar to inform them of my daughter's condition, but I'm not sure anything more from their side will be done.

A: It sounds like a misunderstanding. School nurses should be aware of the school nutrition program; not so much how it works, but of the program in general, just in case there is a child with severe dietary nutrition needs.

She is right that if a life activity is not affected, without the diet modification, then a 504 plan is not necessary. However, if a medical authority writes a diet prescription stating that meals must be modified, the school has to make that adjustment. A 504 plan is only necessary if there is a disability OR the school and doctor feel one is necessary. So the school does not have to do a 504 plan.

If a child does not have severe reactions if a food is ingested, then simply working with the school foodservice director and front line cafeteria staff may be sufficient. Remember that in cases of food intolerance or allergy (unless it is severe), a school does not have to, but can, make modifications. Work with the foodservice director and staff to help your daughter make choices as to when she wants to eat school lunch. Often, the staff can work with you with a little training about celiac disease. Since your daughter is 12, even if she just found out she has celiac disease, she should be able to work together with the cafeteria staff as well, as opposed to a first grader with celiac.

As far as the home economics class, your daughter should be able to be part of the entire experience, and not just help prepare, but also enjoy the food. Talk to the teacher about making modifications and offer to either bring some of the ingredients or bring her a list of items with which your daughter should not be in contact.

I know it is frustrating to start the process, but communication is the key. Knowing whom to talk to is the first step. You started with the right person, but if you don’t get help there, definitely find out who the foodservice director is and go from there. As far as regulations, without the diet prescription, the school does not have to make modifications. Good luck!

Question 3

Q: What if I have a child that has celiac disease and they want to eat hot lunch? Does the school have to provide gluten-free food? (I am asking this question In terms of legality).

A: It only becomes a legal issue if a medical authority writes a diet prescription stating that if that child eats anything containing gluten, he or she will have a severe reaction. This is where it starts. With that diet prescription, modifications have to be made and the school is liable for any errors. A 504 plan does not have to be written unless the child is also in special education classes OR the district and you feel one is necessary.

Without a diet prescription, you can work with the foodservice director and front line cafeteria staff to make sure they understand what that child is not supposed to ingest. The director is responsible for training the cafeteria staff, but a parent and student, if possible, should also be involved in selection of meals. If a child with celiac disease wants to eat what their peers eat, then a team approach to help improve their quality of life is key.

Remember that a food intolerance or allergy (unless it is severe) does not require a school to make modifications, but they can. It is important to form close relationships with those serving the students.

Question 4

Q: Could you please expand on the comments regarding the stigma associated with the disability and offer suggestions on how parents can encourage cafeteria staff to help in avoiding this? One of our big concerns is that our children will be either very isolated or very obvious in having their needs accommodated. Are there ways the staff and our children can work together to minimize the disruption (and 'spectacle') from normal foodservice?

A: This is a huge concern for me – a child’s quality of life! When a child is either segregated or told they have to take a special tray, it may be embarrassing for them. Work with the foodservice director and staff to help plan meals that are either very similar or the same items on the tray (items without gluten are not obviously different all the time). For example, taco shells can be purchased and that could be a day the students eats a hot lunch.

We also have to remember that it is not always possible or easy to make exactly the same meals for special dietary needs children, but working with the staff will help. People who work for school lunch programs do it because they love children and are usually very willing to accommodate, while at the same time being careful not to subject a child to ingestion of foods they cannot have by mistake.

Try asking for the monthly menu a little early so that you and your child can plan on when it would be a good day to eat a hot meal at school. The cafeteria staff will then know when that day is and can plan ahead. Communication with those involved is essential.

Question 5

Q: What do you suggest if the school administration is not supportive or responsive, especially in private or parochial school settings where the school district hierarchy is replaced by another entity, like a church or diocese, or the school itself is so small that the child's disability is considered a major 'inconvenience,' or the costs associated with accommodation are consistently cited as limiting to training and support?

A: Some small districts or parochial schools may not even be part of the National School Lunch Program. A child’s disability should be taken very seriously anywhere, no matter what size the school is. However, a disability must be defined by a physician.

If you have a diet prescription by a physician, then they need to take it seriously. Start with the administration, even if it’s off-site. If a diet prescription is written, then accommodations must be made and the cost cannot be passed on to the child or parents.

If the school is not part of the National School Lunch Program, then they do not have to, but can make accommodations. Find out who is in charge of the administration and most importantly, who prepares the meals. You may be able to just work with them even without a diet prescription.

Question

Annual blood work follow-up for vitamin levels indicate that I have very high folate levels although every other test is in the low range. What foods should I eliminate from my diet to reduce high folate levels? From, Penny

Answer

Dear Penny, Thanks very much for your question. Before I answer, I’ll give a quick overview of folate’s role in overall health. Folate is a water-soluble B vitamin that helps produce and maintain new cells, including red blood cells, and it has also been shown to reduce the risk of birth defects, such as spina bifida, in babies. Those with celiac disease may be prone to folate deficiency related to malabsorption, along with a lack of enrichment of gluten-free grains (read more below). Foods that are naturally rich sources of folate include leafy green vegetables, citrus fruits, beans and legumes—all nutrient rich foods that should be included in a healthy gluten-free diet. In addition, folic acid (the synthetic form of folate), along with other B vitamins, is often added to enriched grains, including breakfast cereals, pasta, flour and rice. Most gluten-free versions, however, do not contain added B vitamins, so it’s unlikely your elevated folate levels are related to the foods you are consuming. My first recommendation is to speak with your doctor to rule out any medical conditions that may lead to elevated folate levels in the blood, including a deficiency of vitamin B12, which can lead to anemia. Secondly, are you taking any supplements with additional folic acid, including a multivitamin or a B-complex vitamin? Many supplements, especially B-complex vitamins, contain folic acid in amounts above the Dietary Reference Intake (DRI), which is 400 micrograms (mcg) for adults, or 600 mcg for pregnant women. Although adequate folate is important in cancer prevention, there are also some preliminary studies suggesting that too much supplementation with folic acid may lead to an increase in certain types of cancer. Therefore, if your physician has ruled out any medical conditions causing your high folate levels, my recommendation is to meet with a registered dietitian who specializes in celiac disease, to make sure your diet contains adequate amounts of folate and other nutrients from your diet, while making sure you aren’t getting excess folic acid from supplements or fortified/enriched foods. In good health, EA Stewart, MBA, RD