Celiac.com 11/30/2018 - By day, I am a special education teacher in a large public middle school.  I am also the mother of three “children,” ages 27, 21, and 16.  Several months after our oldest daughter Jennifer’s diagnosis with celiac disease, I too was diagnosed with it—this following a family screening, then a biopsy.  Jen and I both had the good fortune of joining a strong local celiac support group.

When we first made vacation plans to go to Disney World, our biggest dilemma was whether to drive to Orlando and save ourselves some money, or to splurge a little and fly.  Due to Jennifer’s diagnosis several months before the trip, however, our dilemma had become whether to go at all!

As parents of a newly diagnosed celiac we had our own issues to deal with, and after many months of Jennifer being ill, we were all emotionally drained.  As her mom, I was determined to show Jennifer (and frankly myself as well) that her life would be “normal,” even without gluten.  So began Jennifer’s first sojourn as a celiac.

After doing some research I contact the executive chefs at each of the theme parks.  At this point I was still naive enough to think that someone at Disney’s central reservations number would know these phone numbers.  It took several phone calls to discover that I needed to speak to Disney’s “Special Requests Reservation Person.”  Her name was Linda and she magically (no pun intended) began to make things happen.  She arranged for a refrigerator to be in the room at no extra charge, provided a brand new, still in the box, unopened toaster, and assisted me in making special gluten-free and lactose-free meal reservations sixty days in advance at full service Disney restaurants.  Perhaps most importantly, Linda provided me with the names and numbers of the (mysterious) executive chefs.  She also e-mailed the concierge at the Disney resort where we were staying and advised them they needed to get some gluten-free and lactose-free items in stock.  However, this was not in place when we arrived—which caused me to make an “unhappy Mouseketeer” phone call.  Shortly thereafter someone from guest relations at the resort went to Chamberlain’s and brought gluten-free waffles, cookies, and Lactaid milk directly to our room.

So now everything seemed to be in place—well, you know what they say about the best laid plans!  As luck would have it, there was a lightning storm in central Florida the day we arrived which resulted in no natural gas for two days.  This became an excuse at several locations and a really good way to get me fired up, with or without the gas!  I made an early morning call to Brenda, the executive chef at the Magic Kingdom, who seemed genuinely upset at Jennifer’s circumstance.  Thankfully the gas crisis was also over at this point.  She e-mailed all of the remaining restaurants, even if they were in Epcot or MGM, putting them on a sort of “alert.”  Ultimately, this led to several chefs personally contacting either Jennifer or myself, which allowed us to pre-order her meals.

Even after this, there were still some rough spots but good help was available.  Marianne, the executive chef at MGM, was very helpful after Brenda contacted her.  She had done some work with the celiac support group in Orlando, and knew enough to try to coordinate Jennifer’s meals at MGM so there was some variety.  Chef Wendy at the Prime Time Cafe was especially thoughtful in her service.  Although there is an executive chef at Epcot, the communication was weak and we had a less than pleasant experience trying to arrange for a much awaited gluten-free and lactose-free Mexican meal.  Ironically, the restaurant that was the most accommodating also had the least amount of advanced notice, and was the only place Jennifer chose to go to more than once—Spoodles on the Disney Boardwalk.  The chef was Damian and he really went out of his way to make a special dinner and a gluten-free and lactose-free fruit cobbler for dessert.

Magic Kingdom restaurants also deserve some accolades.  Cinderella’s Royal Table served Jennifer a gluten-free and lactose-free breakfast that was fit for a queen.  Someone at Tony’s Town Square hightailed it over to Adventureland to get a Dole Whip for dessert (there are two types; the one with no ice cream is gluten-free and lactose-free—yes, I called Dole beforehand).

Before leaving the Magic Kingdom if found out the following: The French fries at Casey’s at the end of Main Street are gluten-free, as is the Magic Kingdom popcorn.  There is gluten-free ice cream at the Cone Shop on Main Street.  Last, several of the full service restaurants had Tofutti on hand for us.

My best advice would be to always speak directly to the chef—have some emergency rations on hand just in case—and consider renting a condo or room with a kitchenette. 

©A Personal Touch Publishing, LLC.  Donna’s daughter Jennifer wrote “When You’re A Teen” which appears in the book A Personal Touch On...™ Celiac Disease. 

Celiac.com 11/23/2018 - The complex factors that lead to the development of celiac disease in a given individual are the subject of much research.  The immune system, genetics and the environment (meaning factors in an individual’s life that would influence the development of disease) all play an important part in this process.

Current research on celiac disease focuses on the immune system; scientists are working to understand the exact chain of events that occur in the gut when gluten is introduced for the first time.  Understanding these events could yield insight into treatments for celiac disease that interrupt this process.  Celiac disease is the only autoimmune disorder where the trigger is known: gluten.  Researchers use celiac disease as a model for studying the pathogenesis of other autoimmune diseases.

Other researchers are examining the role of environmental factors and the added risk they bring to an individual who already is at risk for celiac disease.  These factors include the influence of breastfeeding, the timing of the introduction of cereals, intestinal infection as a precursor to celiac disease, cultural factors, geography, and more. 

Genetic research has determined that there are two genetic haplotypes that are necessary for the development of celiac disease; an affected individual need only to have one of these genetic haplotypes to be at risk.  These factors are HLA DQ2 and HLA DQ8.  HLA stands for Human Leukocyte Antigen.  Antigens are substances that produce an immune response—we have many antigens in our bodies that are supposed to do that.  HLA are molecules that present on the surface of cells to help the immune system to distinguish antigens that are supposed to be in the body, versus antigens that aren’t. 

While other genes may play a role in the process, we can conclude with virtual certainty that an individual who tests negative for DQ2 or DQ8 will not develop celiac disease.  We also know that 30% of the US population has the genetic makeup for celiac disease. 

While it is encouraging to see a surge of interest in celiac disease research, people with celiac disease have to make choices every day that affect their health, and knowing a bit more about the immune system may make this process easier.  Myths about what it means to have an autoimmune disorder are common.  Knowledge about this area can help one sort out the myths and find the facts about what it means to have celiac disease. 

What Does the Immune System Do?
The immune system provides the human body with several levels of defense from foreign invaders like bacteria and viruses.  The first layer of protection is our skin.  If an invader finds its way into the body, however, the second level of defense mobilizes to destroy the invader before it can replicate.  Some types of invaders already replicate and invade surrounding cells before the immune system can destroy them—and there is a sophisticated type of immune response to eliminate these types of invaders.

The most important decision that the immune system makes when it encounters an “invader” is to determine whether or not it is “self” (is it supposed to be in the human body?) or “non-self” (is this a virus or bacteria that will cause illness?). HLA helps the immune system by tagging cells as “self” or “non-self” to allow the immune system to attack the true invaders.  In the case of celiac disease, HLA tags the antigen presenting cell as non-self, when it should be tagged as self. 

The human body as a house
Think of the human body as a house.  The exterior of the house (the roof, the brick, the door, and the windows) is like the skin of a human body, protecting everything inside.  The house has an alarm system, to detect invaders.  The alarm system is the body’s immune system. There is a cat inside the house, sleeping on the couch. 

How is the immune system supposed to work? 
If a burglar (who is not supposed to be in the house) comes to the side window and tries to break in, there may be a broken window, but the alarm sounds and the burglar runs away. Everything inside the house is safe. 

How does the immune system work when someone has celiac disease? 
The cat wakes up from its nap and gets a drink of water.  The alarm goes off, when it’s not supposed to.  The cat sets off the alarm every time it moves, but other than this, the alarm works perfectly, keeping out all of the true invaders. 

In other words, the immune system of an individual with celiac disease is healthy and normal in every respect, save one.  The presence of gluten, and only gluten, causes a malfunction of the immune system.  In our example, the cat represents gluten—it is supposed to be in the house, yet every time it moves the alarm goes off.  This means that removing gluten from the diet of a person with celiac disease returns their immune system to a normal and healthy state, equal to that of someone who does not have celiac disease. 

Many people with celiac disease feel that they are immune compromised, which is not the case.  If the house in our example represented someone with an immune compromised condition, the alarm would rarely if ever go off (invaders could enter the body without any resistance).  For this reason, flu shots for people with celiac disease do not represent a concern (unless you are allergic to eggs) and people with celiac disease should receive the shot with the general population, and not the special populations who are immune compromised (the elderly, children, etc.).

When should gluten be introduced to a child at risk for celiac disease?
When a person with celiac disease has a baby, there is a great deal of concern regarding the child’s potential for developing celiac disease—this is understandable.  One of the most troubling questions facing parents is when to introduce gluten to their child.  It is a common recommendation to delay the introduction of gluten until one year of age.  Unfortunately, this recommendation is based on wheat allergy, and not autoimmunity.

Fortunately, recent research published in the Journal of the American Medical Association has affirmed earlier research from Finland on this subject as well as what has been a common practice throughout Europe. 

A protective window
Researchers at the University of Colorado recently announced the results of a 10 year study on the introduction of cereals in children at risk for celiac disease.  Their study demonstrated that infants who received cereals containing gluten between four to six months of age were not as likely to develop celiac disease by the age of five as were children who received gluten containing cereals at younger and older ages.  The infants who received cereals between one and three months of age were five times as likely to develop celiac disease, and children who received cereals after six months of age had an elevated risk for developing celiac disease, but not to the extent of the youngest age group.

Is it a gluten response?
Many parents are concerned about whether or not their child will have an autoimmune response to gluten when introduced to cereals.  It may help to know that it typically takes six to nine months for a child to mount an autoimmune response to gluten—if celiac disease is to occur early in their life.  Therefore, a response (such as diarrhea or vomiting) shortly after cereals are introduced or eaten is usually not related to celiac disease. 

What about breast milk?
A mother with celiac disease needs to remain on the gluten-free diet throughout pregnancy and breast-feeding.  However, it is a common misconception that breast-feeding moms who are not celiac should go on a gluten-free diet while nursing.  Microscopic amounts of gluten are carried in breast milk, but it is not enough to harm a child.  In fact, research from Finland shows that breast milk has a protective effect in the gut when gluten is introduced to a child.  This research recommends that when introducing gluten between four and six months of age, breast feeding should continue during this time to confer an added immune benefit.

Understanding a bit more about the immune system may be helpful as you make decisions about your health, and the health of your family.  It can be reassuring to know that the immune system of a person with celiac disease on the gluten-free diet is as healthy as an average person without celiac disease. 

Celiac.com 11/16/2018 - The best part of being diagnosed with celiac disease is finding out what you or your child has so that you can get back in control and in a position to do something about it.  This article is dedicated to “getting back to basics.”  Many of you will already be familiar with these topics.  Still, every now and then we need to be reminded—for our well being or the well being of our loved ones—we must not take for granted the everyday food items we grab from the shelves or the medications we must take.  We must always remember to read labels, as ingredients in products change constantly.  

You need to remember that even though you may experience a reaction from a “gluten-free product,” it doesn’t necessarily mean that it was contaminated with gluten.  You might be having a reaction from something you ate within the 48 hours prior to becoming ill; having an allergic reaction; or you may just be sick.  Keep in mind that a resource book that was once full of current information may no longer be accurate.  Check the date it was printed, who compiled the information, and look to see if there is a more current version. 

Here are some suggestions to help make being gluten-free easier: 

1. Understand that it is sometimes difficult for family members to acknowledge that your diagnosis of celiac disease is an inherited autoimmune disease.  Parents can have a problem accepting that they may have been the one who gave their child the disease.  Other family members can be afraid that they too have the disease.  Spouses may be angry that your lifestyle must change—or simply fear the unknown. 
2. Be honest with your friends.  Hopefully, they will want to know more about celiac disease and what kinds of food you can and can’t have. 
3. Find a dessert that you get compliments on and volunteer to bring it when you visit a friend’s house for dinner, or to share it at a school or social function. 
4. When dining at a friend’s house, ask what will be served and plan to bring something similar for yourself.  Never count on the host providing a gluten-free meal unless they offer.  If you are not comfortable with bringing something, eat before you go.  You can also choose from the meal what is appropriate.  This applies to children as well.  If they are newly diagnosed and embarrassed, get them a treat before or after the function and let them know you are proud of them for not eating something that contains gluten. 
5. Knowledge is power.  Learn as much as you can from a qualified and up-to-date source, i.e. National support groups, doctors, and dietitians.  Be wary of Internet chat rooms about celiac disease.  The amount of information is overwhelming and is not always accurate, which can cause more frustration.  There is, however, a lot of useful information, particularly Internet sites with recipes and food preparations. 
6. Volunteer.  By focusing on other people and their needs, you will, in time, realize how fortunate you are that you have celiac disease and not something worse.

A version of this article originally appeared in the Winter 2004 edition of the Celiac Disease Foundation Newsletter.  The Celiac Disease Foundation is a national celiac disease support group that is based in Studio City, CA. For more information visit their Web site: www.celiac.org.

Celiac.com 11/09/2018 - Adjusting to the obvious guidelines of a gluten-free diet is challenging and often overwhelming.  You soon learn that what is gluten-free today may not be gluten-free tomorrow—mainly because companies can change their recipes, suppliers, or production methods.  As if that weren’t bad enough, you begin to realize that gluten is ‘hidden’ in foods.  How is one to keep up to date with all of this?

Don’t despair, as there are many avenues of help available to you.  Thanks in large part to Andrea Lavario and her Task Force, congress will soon be requiring companies to list ingredients that heretofore have been disguised under auspicious names such as  ‘vegetable protein’ and ‘food starch’ (see Autumn 2004 Journal of Gluten Sensitivity, pg. 1).  There are also a few reliable food lists on the internet that are compiled by people who call companies regularly to check out dubious ingredients.  Some of the posted lists are out of date and unreliable, so check the validity of the sight before relying on the information given.

So what are the hidden sources of gluten?
Let’s examine our homes first.  Do you toast your gluten-free bread in the same toaster that is used for wheat-based bread?  Yes, those tiny wheat crumbs that remain in the toaster could contaminate your gluten-free bread.  Invest in a dedicated toaster for gluten-free products.  If you toast wheat-based hamburger buns and hot dog buns on the same grill as gluten-free ones, this could be another breeding ground for cross-contamination.  Grill the gluten-free foods first, and afterwards clean the grates thoroughly (Put the grates in your oven before running the self-cleaning cycle).  If you are baking both gluten-free and wheat-based cookies during the holidays, make the gluten-free ones first.  If you bake with wheat flour first, there could be some residual flour dust in the air and on your counters (Wheat flour can remain in the air for up to 24 hours!).  Wood cutting boards are porous and gluten may become embedded in them—use a marble cutting board instead.  Finally, beware of knives.  At breakfast, do the gluten-consuming members of your family spread peanut butter on their toast, and then double-dip to get a little more peanut butter out of the jar?  If so, get a peanut butter jar just for you.  When they double-dip, some of their wheat crumbs may be getting into the jar and will eventually contaminate the dollop you retrieve from the jar.

Non-food items also pose gluten challenges.  Do you use latex or rubber gloves to wash dishes?  These may be dusted with wheat or oat flour.  Make a phone call to your doctor, dentist, orthodontist and periodontist and request that they use non-powdered gloves.  Gluten hides in art supplies, such as paints, clay, play dough, and glue.  It is also present in many personal items such as lipstick, lip balm, sunscreen, shampoos, soaps, cosmetics, and skin lotions.  Household products such as cleaning solutions, detergents, even bar soap may contain gluten.  Fortunately, you can refer to lists on the internet for ‘safe’ alternative brands that are available.

Medications frequently contain gluten.  Pills may be dusted with flour during manufacturing and capsules may have gluten present in the oil inside.  Frequently your pharmacist will be able to tell you if any given medication is safe for you, but you may have to call the manufacturer.  Again, there are websites that have gluten-free medications listed.

Oats remain a food of debate.  While ‘pure’ oats may be safe for some celiacs, it is very difficult to find ‘pure’ oats that are grown and processed in the U.S.A.  Some celiacs are able to consume oats imported from Ireland, while others have reactions to them.  Even the safe flours (rice, potato, tapioca, bean) can be contaminated if they are milled or processed in a facility that processes wheat, rye or barley grains.  A call to the processing company will tell you if they have machinery and facilities dedicated to gluten-free grains only.  If you purchase imported flours from an oriental store, you obviously are not able to contact the manufacturer.  Many of the Asian plants are dedicated exclusively to processing rice products, especially those in Thailand, but some are not.  It is your personal decision whether or not to trust the purity of items purchased from abroad.

Reading labels is a highly refined art form.  Not-so-obvious terms on labels signal gluten, like malt, graham, spelt, kamut.  If you pick up a jar of chili powder it may or may not contain wheat flour which can be added to keep it from clumping—but even if it does you likely won’t find wheat listed on the label.  There are foods that you think are 100% pure, but when you examine the label, other ingredients have been added, like tomato paste.  Rice syrup may use barley enzymes.  Yeast may be grown or dried using wheat or barely ingredients.  

At the grocery store beware of anything that is processed.  If it is not a whole food, it may contain gluten.  Common culprits include rice or corn cereals, soups, snack foods, lunch meats, sausages, and hot dogs.  Shortening may contain vitamin E processed from wheat germ. 

Just when you thought it couldn’t get any more confusing, you find hieroglyphics on labels.  Letters like HVP (hydrogenated vegetable protein), HPP (hydrolyzed plant protein), and TVP (textured vegetable protein). Other confusing ingredients are maltodextrin, stabilizers, binders, fillers, natural flavor, vegetable gums, and mono & diglycerides, to name just a few.  Enriched products should be avoided unless you are certain of the sources of ‘enrichment’.  See the Safe & Forbidden Lists for detailed lists of ingredients and their gluten-free status.

Finally, re-check labels each time you buy a product.  Companies change their recipes periodically.  Duncan Hines Vanilla Ready-to-Spread Frosting used to be gluten-free, as were Pringles Potato Chips—but both manufacturers recently began adding wheat starch to these products.  It should be noted that Duncan Hines received so many letters and calls of protest about wheat being added to their frosting that they have switched back to the original gluten-free recipe—but check the label before purchasing.  Product ingredients may change from one batch to another.  Cool Whip usually does not contain wheat, but occasionally it is added.  Archway macaroons are sometimes made with potato starch and sometimes with wheat starch.

The lists above are not intended to overwhelm you, but to make you more aware of the problem that you face, and to help you become more alert.  With practice and time, screening for gluten becomes second nature.  Now for the good news!  By 2006, food labeling will disclose many of the hidden ingredients now on labels, including wheat (barley and rye do not have to be disclosed, but are used far less frequently than wheat).  Kraft Foods is already beginning to post labels reading “Gluten Free” on many of their products; other companies will follow their lead.  Many grocery store chains are responding by setting up entire gluten-free sections.  Gluten-free companies and bakeries are springing up every day.  Food chains are recognizing the needs of celiacs and are catering to this new market—Godfather’s Pizza now offers a gluten-free pizza crust (beware!) and many restaurants like Outback Steakhouse now offer gluten-free menus upon request.  As each month passes, it is becoming easier and easier to identify gluten-free products—and the number of products made for celiacs will continue to grow as time goes on.

Connie Sarros’ Tortilla Tower

This recipe is from my book:  Wheat-free Gluten-free Cookbook for Kids and Busy Adults.  It takes just 15 minutes to assemble and uses no special utensils or equipment.

Ingredients:

• ½ pound lean ground beef (some discount super stores add 
• ¼ teaspoon pepper
• ½ teaspoon oregano
• 1 jar (15 ounce) GF spaghetti sauce
• 1 egg
• 1 cup GF small-curd cottage cheese
• 4 GF corn tortillas
• 1 cup GF shredded sharp cheddar cheese

Directions:
Preheat oven to 350F.  In a skillet over high heat, brown ground beef, breaking it up into small pieces with a fork as it browns.  Drain off any fat.  Stir in pepper, oregano and spaghetti sauce.  Cover pan and simmer over medium/low heat for 5 minutes.

In a small bowl, whisk the egg slightly, then stir in the cottage cheese.

Spoon ¼ cup of the meat mixture in the bottom of a 9-inch pie plate.  Place 1 tortilla on top of the sauce in the plate.  Spread 1/3 of the cottage cheese mixture on top of the tortilla.  Top with ¼ of the meat sauce, then ¼ of the shredded cheese.  Repeat these layers 2 more times.  Top with the last tortilla, remaining meat sauce, and remaining shredded cheese.

Bake for 30 minutes.  After removing from oven, let Tortilla Tower rest for 5 minutes before cutting.  Cut into 4 wedges to serve.  

Celiac.com 11/02/2018 - In sensitive individuals, some foods can cause allergic or other immune system reactions.  These reactions can be as mild as a little fatigue (many physicians believe the #1 symptom of allergies is fatigue), a mild headache, some congestion, or a ‘fuzzy brain’.  Or, the reaction can be as severe as immobilizing migraines, asthmatic attacks and even life-threatening anaphylactic shock.

Many of us have felt these types of reactions to foods.  And if I tell the truth, I am guilty of many times in the past wondering, “how far can I push this?  How much of this food (which isn’t good for me) can I eat without getting sick?”

Researchers are now telling us, and studies are being published that gives answers to these questions.  It seems to depend on the level of sensitivity.  When a person has elevated antibodies to wheat or gluten, the evidence is suggesting ‘none at all’ is the answer to the question. 

In a recent paper entitled ‘A Milligram of Gluten a Day Keeps the Villous Healing Away’, the authors tell the story of a 32-year-old woman.  Her symptoms of abdominal pain, diarrhea and weight loss were present for over 10 years.  She also had a history of failure to thrive in childhood (one of the smallest children in the class throughout her education), late onset of menstrual cycles, recurring anemia, and hair loss.  This is the history of a body physically ‘just barely getting by’.  A positive blood test indicated elevated antibodies, and an endoscopic examination (biopsy of the intestines) confirmed Classic Celiac Disease.

She had followed a wheat and gluten free diet for 16 months.  Diarrhea and abdominal pain stopped completely and weight loss had been recovered.  Some of her blood work had returned to normal.  However anemia, hair loss, and increased antibodies suggestive of persistent Celiac Disease were still present.  A focused interview revealed she was not on a strict gluten-free diet because she was taking a communion wafer and had several other unintentional dietary lapses.  After discussion with her Doctor she refused to stop taking a daily fragment of communion wafer.

Eighteen months after beginning a complete gluten-free diet, but still taking a communion wafer, her anemia, hair loss, diarrhea, and abdominal pains were gone.  Most blood work was now normal.  However some blood markers of possible Celiac Disease were borderline high.  From how her body was functioning, one would think she was healed and her Celiac Disease was gone.  However her repeat biopsy still showed the highest degree of severe intestinal damage—Marsh IV villous atrophy, and an increased number of intraepithelial lymphocytes, putting her at increased risk of osteoporosis and a severe form of cancer of the intestines (T-cell lymphoma). 

Her Doctors were concerned.  She was following the diet perfectly.  No hidden glutens in medications or foods.  All of her symptoms were gone.  She felt very good.  But why weren’t her intestines healing?  Could it be the fragment of communion wafer she refused to give up for religious reasons?  She did not want to have this discussion and continued to refuse abstaining from the wafer fragment.

An evaluation of the communion wafer revealed that it contained approximately 0.5 mg of Gliadin (1 milligram of gluten).  That’s about 1/16 of a thumbnail.  Now remember this woman’s symptoms had all but disappeared, she felt fine and her blood work was much improved (not quite normal, but close).  She was very reluctant to give up her daily fragment of Communion wafer.

Eighteen months later she returned and surprised her Doctors by announcing she had given up the wafer.  A repeat biopsy now showed her intestines had healed and were completely normal.

Discussion: What can we learn from this case?

1. In sensitive individuals (with elevated antibodies to wheat or gluten), the symptoms are not just in the intestines.  This person had suffered for years from anemia, hair loss, failure to thrive, weight loss, and hormone irregularities.
2. Implementing a wheat and gluten free diet brought favorable results in eliminating all of the above symptoms
3. Even with the elimination of symptoms and the return to normal of her blood work, ongoing very serious damage was occurring in the intestines without any noticeable symptoms.
4. It only took 1/16th of a fingernail worth of gluten per day to stop intestinal healing and create great risk to life-threatening diseases.
5. Blood antibody values that are border line may be an indicator of more aggressive damage occurring inside the body—not identifiable without an endoscopic exam.

Conclusions

1. One can be completely fooled as to whether they are having serious damage occur in their body if they just go by symptoms (or a lack of symptoms).
2. Testing for wheat allergies and Celiac Disease must include comprehensive blood work and, when indicated, an endoscopic examination.
3. If either test comes back positive, a complete elimination of wheat and gluten is necessary—not even 1/16th of a fingernail’s worth-not even a crouton on a salad can be considered harmless.

Personal Note
It is a necessity to do an endoscopic exam with positive blood work to wheat and/or gluten allergies.  I’ve always thought doing the blood work was enough, especially in children.  I was wrong.  In researching this further I’ve found many studies that emphasize this necessity.  Blood work comes first, but if positive, an endoscopic exam is essential.  Otherwise, as in this study, severe damage may occur without any symptoms whatsoever.

Celiac.com 10/13/2018 - Two important principles sort of collided in my brain the other day.  One was the recent recommendation to increase our intake of whole grains based on the new food pyramid from the USDA.  The other was our interest in time-saving prepared foods to make dishes that are at least partially homemade.

About the same time these two ideas were melding in my brain, I realized how many wonderful new gluten-free cereals and crackers are now on the market.  I wondered if we could boost our whole grain intake by using ready-made gluten-free cereals or crackers in home cooking.  While not all of the cereals and crackers are truly “whole” grain, most are only partially refined and still quite nutritious.

So, here’s my idea: One of my favorite desserts is a fruit crisp.  You can make it any time of the year, using fruits in season (in my case, fruits that have sat on the kitchen counter past their prime, yet are still edible).  In the fall it might be apples.  Winter is perfect for pears.  I like stone fruits during summer, such as peaches, plums, or cherries.  Or, if you’re really desperate just open a can of whatever fruit appeals to you.

Revving Up Your Home Cooking with Ready-Made Cereals 
Here’s where the new cereals come in.  Prepare the fruit filling according to any fruit crisp recipe or use the recipe I provide here.  For the topping, I like to toss Nutty Rice or the new Nutty Flax cereal from Enjoy Life Foods with maple syrup (or honey, brown rice syrup, or agave nectar).  Add ground cinnamon to taste and then sprinkle it over the prepared fruit.  Spray with cooking spray and bake at 350°F until the fruit is done and the topping is browned. 

Sometimes to speed things up, I microwave the covered fruit filling for 5-10 minutes on high, then uncover it, add the topping, and bake at 350°F for 15-20 minutes or until the fruit is soft and the topping is crisp and nicely browned.  I particularly like the Nutty Flax cereal because it uses both flax and sorghum for a nutritious combination.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  

I also like to use the granola from Enjoy Life Foods as the topping for these fruit crisps. It’s already sweetened and flavored, available in Cinnamon Crunch, Very Berry Crunch, and Cranapple Crunch.  All it needs is a little oil.  Of course, if you prefer, you can toss it with a little extra cinnamon plus some maple syrup (or honey, brown rice syrup, or agave nectar) to heighten the sweetness.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  Sprinkle over filling and spray with cooking spray.

You can also add about ½ cup of this granola to your favorite bran muffins, cookies, or quick breads.  The granola supplies a nice crunch and additional flavor and nutrients.  Depending on your recipe, you may need to add more liquid to compensate for the cereal.  

Quinoa cereals by Altiplano Gold are packaged in individual serving packets, making them especially easy to incorporate into our baking.  They come in three flavors––Organic Oaxacan Chocolate, Spiced Apple Raisin, and Chai Almond––and just need boiled water to make a hot cereal.  Quinoa is a powerhouse of nutrients so I like to use the cereals in additional ways as well.

Using the same concept for the fruit crisp above, I just sprinkle the Spiced Apple Raisin or Chai Almond dry cereal on the prepared fruit filling.  Since the cereal is already sweetened and flavored, it only needs a little cooking spray.  Bake at 350°F for 15-20 minutes.  If your fruit needs additional cooking time (such as apples) try the microwave method I discuss above.

You can add ½ cup of the Chocolate flavor to a batch of chocolate brownies or chocolate cookies for added fiber and nutrients.  Depending on the recipe, you may need to add a little extra liquid to compensate for the cereal which counts as a dry ingredient. 

Creative Uses of Crackers in Home Cooking
New crackers by the whimsical name of Mary’s Gone Crackers are chock-full of fiber and nutrients.  They come in Original and Caraway flavors and are a nutritious treat by themselves.  I also take them with me on trips because they travel so well. 

One creative way to use these crackers and appease your sweet tooth is to dip the whole Original-flavor cracker halfway into melted chocolate.  Ideally, let the chocolate-dipped crackers cool on waxed paper (if you can wait that long) or else just pop them into your mouth as you dip them.  You can also place a few crackers on a microwave-safe plate, top each with a few gluten-free chocolate chips and microwave on low power until the chips soften.  Let them cool slightly so the chocolate doesn’t burn your mouth.  These crackers also work great with dips and spreads. 

Aside from dipping in chocolate, these crackers have additional uses in baking.  For example, finely crush the Original or Caraway flavor crackers in your food processor and use them as the base for a crumb crust for a quiche or savory tart.  The Original flavor would also work great as a replacement for the pretzels typically used for the crust in a margarita pie.  Just follow your crumb crust recipe and substitute the ground crackers for the crackers or pretzels. 

The crackers have very little sugar, but the Original flavor will work as a crumb crust for a sweet dessert as well.  Again, just follow your favorite recipe which will probably call for melted butter or margarine plus sugar.  Press the mixture into a pie plate and bake at 350°F for 10 minutes to set the crust.  Fill it with a no-bake pudding, custard, or fresh fruit.

The crushed crackers can also be added to breads and muffins for a fiber and nutrient boost.  Depending on how much you add (I recommend starting with ½ cup) you may need to add more liquid to the recipe.  

I’ve just given you some quick ideas for ways to get more grains into your diet and streamline your cooking at the same time.  Here is an easy version of the Apple Crisp I discuss in this article.  I bet you can think of some other opportunities to make our gluten-free diet even healthier with wholesome cereals and crackers. 

Carol Fenster’s Amazing Apple Crisp

You may use pears or peaches in place of the apples in this easy home-style dessert. If you prefer more topping, you can double the topping ingredients. This dish is only moderately sweet; you may use additional amounts of sweetener if you wish. Cereals by Enjoy Life Foods and Altiplano Gold work especially well in this recipe. The nutrient content of this dish will vary depending on the type of fruit and cereals used.

Filling ingredients:

• 3 cups sliced apples (Gala, Granny Smith, or your choice)
• 2 Tablespoons juice (apple, orange)  
• 2 Tablespoons maple syrup  (or more to taste)
• ½ teaspoon cornstarch 
• 1 teaspoon vanilla extract
• ¼ teaspoon ground cinnamon
• ¼ teaspoon salt

Topping ingredients:

• ¼ cup ready-made cereal
• ¼ cup gluten-free flour blend of choice
• ¼ cup finely chopped nuts
• 2 Tablespoons maple syrup  (or more to taste)
• 2 Tablespoons soft butter or margarine
• 1 teaspoon vanilla extract
• ¼ teaspoon ground cinnamon
• ¼ teaspoon salt

Directions:

1.  Preheat oven to 375F.  Toss all filling ingredients in 8 x 8-inch greased pan. 

2. In small bowl, combine topping ingredients. Sprinkle over apple mixture. Cover with foil; bake 25 minutes. Uncover; bake another 15 minutes or until topping is crisp. Top with vanilla ice cream or whipped cream, if desired.  Serves 6.

Celiac.com 10/06/2018 - In a recent discussion of Dangerous Grains, we (Mike and Ron) began to speculate about future prospects for those who are gluten sensitive.  We talked about future directions for research into how gluten impacts on human health, the growing focus on celiac disease excluding gluten sensitivity, and whether grain consumption is a factor in health problems among those who are not gluten sensitive (according to currently available testing).  This inevitably led to debate about whether gluten grains are harmful to all humans.  In the context of this discussion, we agreed to write this article inviting further discussion of this matter and offering some suggestions to researchers and contributors to gluten-related research.  These include several of our personal concerns and a number of questions that remain unanswered. 

Where is the research taking us?
Perhaps the most important lesson that current research teaches is that a great deal more research is needed if we are to fully understand this ubiquitous hazard to human physical and mental health.  There are several emerging trends in the research literature that warrant our attention and further investigation. 
 
For instance, celiac disease research has been conducted on the margins for so long that the recent, very rapid expansion of this field may have helped foster neglect of related and equally important research into non-celiac gluten sensitivity.  Previous issues of the Scott-Free Newsletter have contained articles outlining the importance of extensive and appropriate testing (and subsequent dietary compliance) for those who have non-celiac gluten sensitivity as identified by a variety of tests including IgG ELISA testing for common food allergies. 

Further, our growing reliance upon endomysium or tissue transglutaminase antibody testing alone risks overlooking a significant portion of the population with celiac disease.  Several reports indicate that in cases where serology testing is negative but symptoms and signs suggest celiac disease, a series of jejunal biopsies should also be taken and assessed by a pathologist who is familiar with celiac disease and uses the Marsh system for evaluating intestinal biopsies.

Research into the oats question reveals that known toxic proteins in celiac disease are absent from oats.  Yet one small study showed that a significant percentage of celiac patients will develop intestinal lesions characteristic of celiac disease from eating pure oats in the context of an otherwise gluten-free diet.  This suggests that we have not yet identified all of the toxic proteins in gluten grains.

Some current research is also aimed at developing similar grains without the toxic proteins found in regular gluten grains.  The problems associated with oats research have a clear bearing on this issue as well.  If celiac patients are developing intestinal lesions from pure oats, which have repeatedly been shown to lack the known toxic proteins, then we do not yet know all the harmful proteins.  Thus, genetic development of “safe” wheat is not yet possible.  Still, this research may help in the identification of additional toxic proteins.  

Current research has also led to a growing awareness, among the medical community and the general public, of the connections between gluten consumption and type I diabetes, epilepsy, thyroid disease, osteoporosis and a host of previously unsuspected autoimmune ailments.  This is raising many questions about the potential value of a gluten-free diet as part of the treatment protocol for many of these ailments. 

Current research into zonulin may be one of the most exciting areas of investigation.  The work of Dr. Fasano and many others in this important area may well lead to a better understanding of the impact of gluten on schizophrenia, attention deficit disorder, autism, bi-polar disorder, and a variety of ailments that have shown improvement on a gluten-free, dairy-free diet.  

Where would we like to see the research go? 
Gluten research is largely overlooked by many of today’s scientists.  Despite the growing body of research that discredits gluten grains as healthy foods, the widespread, erroneous assumption of their nutritional value continues to foster gluten consumption.  There is a pressing need to dispel the myths that protectively shroud this issue.  Our first priority is to see a clear delineation of the gluten-derived proteins and peptides that are currently known to threaten human health.  The next logical step would be to initiate an extensive investigation of the various other gluten proteins and peptides in order to identify all of the harmful substances in gluten.   

The relevance of gluten research reaches far beyond the concerns of academia and the individuals diagnosed with gluten sensitivity or celiac disease.  We now know that many health problems could be wholly or partly the result of gluten, making this field worthy of investigation as well. 

The driving force for people to pursue research of these topics might well be found in a broader awareness of the preliminary findings that connect this wide variety of health conditions to gluten consumption.

Further research into this field would reveal many aspects of our current lifestyle.  For instance, why are we facing such a widespread variety and increasing rates of psychoses?  And how does gluten relate to the multitude of diseases, seldom seen until the advent of agriculture?  Gathering more information about gluten and its effect on both gluten sensitive and non-gluten sensitive individuals may provide a greater understanding of modern illnesses. 

For instance, Dr. Hadjivassiliou’s extensive investigations of neurological diseases of unknown origin, in association with gluten sensitivity, reveal several important research concerns which include: 

1. Does current testing identify all important immune reactions to gluten?
2. What other, as yet unidentified proteins are toxic to celiac patients? 
3. How often is gluten sensitivity/celiac disease considered in the context of these related ailments? 
4. What portion of the population is at risk of developing gluten sensitivity? 
5. What portion of the population is at risk of developing celiac disease? 
6. What other problems may be associated with gluten consumption? 
7. What is the cost-benefit of our escalating consumption of gluten? 
8. What vested interests are inhibiting the widespread recognition of health hazards associated with gluten consumption? 

Concurrent with this research, we would like to see investment in the development of safe, healthy, alternative food sources.  Realistically, everyone would probably be better off on a diet of fruits, vegetables, and various meats.  But is this possible for the world’s overwhelming and growing population?  The necessary resources, including the cost to the consumer, would be prohibitive by current standards and methods of food production.  New, more efficient food sources must be found, developed, and widely adopted.  These foods must be a better fit with our evolutionary adaptations.  This search will require considerable investment and social resolve.

What questions should have priority? 
The question on peoples’ minds is how the research will directly affect them.  This means that the research will have to explain the relevance of gluten proteins to such diseases as cancer, autoimmune disorders, obesity and food addiction.  Each of these food-related topics is a common concern, widely discussed, and a key topic for gluten-related research.  The many applications of food addiction research will attract widespread attention and discussion.  The current spotlight on dieting in the popular press reflects a great deal of personal concern, among the general public, regarding this topic.  Cancer and autoimmunity have been examined in great detail and a universal cure is still a distant dream.  Yet the high rate of gluten sensitivity among these patients suggests a pressing need for research.  Such investigations could provide a monumental step toward finding the causes and the explanations for these widespread, devastating health problems.  Since these topics have yet to be explored, mainly due to limited research funding, a shift in research focus may yield the solutions to many of these conditions that plague our society.

An important hurdle to overcome
There is a dichotomy between governmental dietary recommendations that encourage gluten grain consumption and the growing body of research that discredits grains as a healthy food for a significant portion of the population.

Unfortunately this is an area where progress is necessary for gluten research to really thrive.  Since grain production, processing, and consumption constitute huge portions of various state economies, it is in the best interests of governing bodies to keep grains on everyone’s plate for many years to come.  It will require a truly overwhelming body of knowledge, based on solid research proving the hazards of grains to topple the current, flawed structure of governmental dietary recommendations. 

Conclusion
Without this vast array of research, leading to widespread recognition of the hazards of gluten, we can expect little social change.  Thus, future prospects for gluten sensitive individuals may be somewhat dim.  Increasing population densities may lead to escalating competition for finite food resources.  Cheap and available foods derived from gluten grains will become increasingly attractive.  Future generations of our families (remember that gluten sensitivity and celiac disease have a large genetic component) will be at risk.  The best answer, as we see it, is to fund research aimed at the questions posed here, as well as those that arise out of these investigations.  We have offered several directions that we consider important.  Whether or not you agree with our priorities, we hope you agree that we need further research into the human health hazards posed by gluten grain consumption.

This article was co-written by Mike Pearson.

On the other hand, we recognize that biopsies are not always the final arbiter in diagnosis. While the jury is still out on what a TTGA positive, biopsy negative result means with regard to gluten sensitivity, there is plenty of evidence that a positive EmA generally does mean that biopsy abnormalities will follow: My own follow-up of EmA positive, biopsy negative patients indicates that they will develop abnormal histology if not treated⁷. So it makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage—and as already stated, even a normal baseline biopsy will provide a reference for any problems that might arise in the future.

Sometimes I meet a patient with bad gut symptoms but completely normal blood work up and biopsies and when all else fails I will run a trial of gluten-free. It often works, particularly if there is a family history of celiac. But then again, if it doesnt, we have a baseline normal biopsy to say there is no need to persevere.

I guess in the future diagnosis of gluten sensitivity will rely on totting up various factors, none individually essential: blood tests, biopsies, family history, genetic testing for the HLA celiac genes. Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children⁸, for whom (and for the parents) endoscopy and biopsy is a major issue. In adults however it is quick, straightforward and safe and will remain a key part of my celiac workup.

William Dickey is a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. His interest in celiac disease goes back some fourteen years and he has published extensively on the subject. He is an associate member of Coeliac UKs Medical Advisory Council.

References:

• Dickey W, McMillan SA, Hughes DF. Sensitivity of serum tissue transglutaminase antibodies for endomysial antibody positive and negative coeliac disease. Scand J Gastroenterol 2001; 36: 511-4.
• Wahab PJ, Crusius JBA, Meijer JWR, Mulder CJJ. Gluten challenge in borderline gluten-sensitive enteropathy. Am J Gastroenterol 2001; 96: 1464-69.
• Di Tola M, Sabbatella L, Anania MC, Viscido A, Caprilli R, Pica R, Paoluzi P, Picarelli A. Anti-tissue transglutaminase antibodies in inflammatory bowel disease: new evidence. Clin Chem Lab Med. 2004;42(10):1092-7.
• Oxentenko AS, Grisolano SW, Murray JA, Burgart LJ, Dierkhising RA, Alexander JA. The insensitivity of endoscopic markers in celiac disease. Am J Gastroenterol. 2002 Apr;97(4):933-8.
• Dickey W, Hughes DF, McMillan SA. Disappearance of endomysial antibodies in treated celiac disease does not indicate histological recovery. Am J Gastroenterol 2000; 95: 712-4.
• Meijer JWR, Wahab PJ, Mulder CJJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol 118(3):459-63, 2002 Sep.
• Dickey W, Hughes DF, McMillan SA. Patients with serum IgA endomysial antibodies and intact duodenal villi: clinical characteristics and management options. Scand J Gastroenterol 2005: in press
• Barker CC, Mitton C, Jevon G, Mock T.Can tissue transglutaminase antibody titers replace small-bowel biopsy to diagnose celiac disease in select pediatric populations? Pediatrics. 2005 May;115(5):1341-6