Celiac.com 11/30/2016 - A recent trip to the supermarket revealed how often "fake" strawberries are used in breakfast and snack bars. Cereals have even added "strawberries" to many favorite choices. These products are NOT made from dried strawberries. The ingredient label reads: "strawberry flavored fruit pieces (sugar, cranberries, citric acid, natural and other flavors...". The fruit pieces are sugar flavored cranberry skins that previously sold as pig food and offer no nutritional benefit except calories. This fruit fraud is not unique to strawberries. Blueberries in a national brand bar are described as "blueberry flavored fruit pieces (sugar, cranberries, blueberry juice from concentrate, grape juice for color...". The same brand of cereal lists blueberry flavored bits (sugar, corn syrup, corn cereal, modified wheat starch, modified corn starch...cellulose gum, red #40,blue #2, green #3, blue #1). No blueberries are listed as an ingredient!

Snack and breakfast bars are convenient and can be made with healthy gluten-free ingredients like brown rice, hemp and coconut flours. A quick visit to the health food section of the supermarket or local health food store can yield the ingredients in this quick and easy snack bar recipe. For those wanting enough bars to last the week, double the recipe and store them in the refrigerator.

Strawberries are a popular fruit to include in bars and cereal because calorie for calorie they have 2 times more potassium than a 7-inch banana and twice as much iron as raisins. When it comes to selecting strawberries, raw ones have twice as much vitamin C and folate as frozen ones. So when they are abundant during strawberry season, enjoy them raw or in this bar recipe.

Gluten-Free Strawberry Breakfast Bars

Ingredients:

• 3 tablespoons butter or coconut oil, melted
• 1 1/2 cups chopped fresh strawberries
• 2 tablespoons honey
• 3 tablespoons water
• 1 tablespoon cornstarch or arrowroot
• 1/2 cup brown rice flour or
• 1/2 cup hemp hearts or powdered hemp
• 1/4 cup coconut flour
• 1 tablespoon date sugar or sugar substitute
• 1 teaspoon baking powder
• 1/2 teaspoon ground cinnamon
• 3 to 4 tablespoons orange or apple juice

Directions:
Melt butter in a 9-inch square baking pan while preheating the oven to 375F. Combine strawberries, honey, and 2 tablespoons of water in a saucepan. Bring to a boil, then reduce heat to simmer. Cook until strawberries are soft and can be mashed with a fork. Dissolve cornstarch in 1 tablespoon of water. Add to strawberries and stir until thickened. Cool. Make crust by combining the rest of the ingredients, including the butter. Stir to form the dough. Press 2/3 of the dough onto an oiled baking pan. Spoon strawberry filling over the top. Crumble remaining dough over the filling, pressing gently into the filling. Bake for 20 minutes. Cool. Cut into 12 bars.

Calories per bar 122; Protein 3g; Carbohydrates 18g; Fat 5g

Celiac.com 11/28/2016 - The title of my article might seem a little shocking to most of the celiac community. Why wouldn't I want restaurants to offer high quality, safe meals to those who suffer from celiac disease or from non-celiac gluten intolerance so they could also enjoy dining out with their family and friends like everyone else? It's not that I don't want restaurants to offer gluten-free options: I do. But, I want them to be high quality, high integrity, and offered by a properly trained and knowledgeable staff. Otherwise, I truly don't think your establishment should bother offering gluten-free options to your diners and guests.

The truth is that genuinely gluten-free dishes should be more than just replacing a bun, or using a corn or rice version of pasta in your dishes. Claiming to be "gluten-free" or "celiac-friendly" needs to go much further than just claiming such or simply swapping a product for your gluten-free diner.

Without the benefit of training and education, many restaurants are not going to take into account any cross-contamination factors such as where the food is prepared, or who has touched it (and what did they touch last?) or where the plate was prepped and cleaned. It doesn't consider the air-borne flour coating almost every surface of a bakery or kitchen, and, it certainly doesn't involve investigating ingredients in the finished dishes for "hidden" sources of wheat, rye, or barley whose derivatives (such as malt or "flavorings") might be lurking around the kitchen and in prepared foods.

There are so many sources of cross-contamination that are simply not explored, or may not even be known by a dining establishment. Unless a typical restaurant or bakery staff is well-versed and knowledgeable in what to look for, the questions to ask, and the proper procedures that will ensure a safe dining experience for gluten-free guests, and until all of the sources of cross contamination are explored and eliminated, it is highly doubtful that a gluten-free dish is truly gluten-free at all.

With the FDA's recent updates to the gluten-free standard, restaurants, bakeries and dining establishments need to start following suit. Anyone offering a gluten-free meal should be aware that not only are their customers expecting adherence to the 20ppm of gluten (or less) standard that has been accepted as the standard for certifying something is gluten-free, but that the FDA expects their dining establishment to live up to that standard.

As with any product that comes to market with a claim, restaurant menus are subject to abide by the same guidelines. For instance, if you claim something is "reduced fat", then it better, by all means, be reduced fat from the original version of the same dish. The same principal applies to gluten-free dishes with the standards taking full affect in the summer months of 2014. If your restaurant claims it is gluten-free, then it better be gluten-free, and not just "assumed" gluten-free.

Living in blissful ignorance can not be an option for restaurants or for any establishment offering gluten-free products. As with any other food allergy or intolerance (FAI) there can be dire consequences for not adhering to procedures for safe preparation and service of food. Not to mention the damage that can be done to an establishment's reputation should the word get out that their integrity or food knowledge is questionable.

Personally, I believe restaurants have a lot to gain in terms of offering gluten-free meals, or menu options in their establishment. I believe that restaurants who establish—and enforce- gluten-free procedures to eliminate cross contamination, accidental exposure, and provide training to their staff can benefit greatly in terms of business growth and satisfied repeat guests and their referrals from gluten-free diners to both gluten-free dieters and "traditional" diners alike.

Gluten-free diners, just like all diners, place a great deal of faith and trust in people who prepare their meals at restaurants, diners, bakeries and cafes. With this great measure of trust being established at the first encounter with a restaurant guest, it pays to educate everyone from host/hostess to head chef on the proper way to handle gluten-free meals, and for that matter, all FAI's.

That is why I recommend that until you are completely certain that your food is gluten-free, and that your staff is in complete compliance with your establishment's gluten-free policy, it is probably better that your establishment NOT offer gluten-free menu options. Those with gluten intolerance and celiac disease would appreciate your honesty and your integrity in doing so. The good news is that we'll be willing to become your dinner guests when you can honestly say that your kitchen staff, servers, management team, and even your host or hostess are educated, trained, and 100% on-board with providing a safe gluten-free experience for all of us.

Trust and integrity go a long, long way for those of us with special dietary needs.

Celiac.com 11/21/2016 - This article is the result of an email exchange between Scott Adams and Dr. Sachin Rustgi, which took place between January and March, 2014.

Scott Adams:
For many years researchers have known that a non-genetically modified, celiac safe wheat does, in fact, exist. Please see:

• Is Triticum Monococcum (Einkorn) a Safe Wheat for those with Celiac Disease?
• Baking Quality Wheat Ancestors May be Safe for Those with Celiac Disease

I believe that what you are actually doing, which is supported by an approximately $900K corporate grant (if I recall correctly), is to create a GMO version that you can patent in order to make money selling the seeds. This may not be necessary, as what you seek already exists naturally, and I did explain this to your cooperator years ago.

Sachin Rustgi:
We are aware of these publications mentioned in your post. It is unfortunate that some of these research papers make broad claims not fully supported by the data presented in these reports. This practice is damaging to society in these two ways: i) These publications mislead the public, which gives rise to misconceptions or myths, making it difficult for the general public to accept other innovative ideas. ii) It could even negatively impact public health if the results were blindly accepted and changes were made in routine eating practices without having careful scientific scrutiny of the findings. The popular press and media is partly responsible, because without assessing the credibility of results, they pick broad claims from these publications and serve them to the public in language laden with emotional impact, which the public receives and bases their opinion on. This is also true for the general claims made in the publications cited earlier.

Different celiac patients are sensitive to different ‘gluten' proteins (prolamins). If one feeds peripheral blood cells sampled from a patient or a small group of patients (from a specific geographical location) with gluten proteins derived from a wheat genotype, it is expected either to see a reaction (monitored by the production of interferon gamma) or no apparent effect. But in the latter case it does not mean that the wheat genotype is non-toxic to all celiac patients. Because the sample is not a good representative of the genetic variability for disease susceptibility available in the global population, and is likely representing the prevalent disease predisposition allele present in a population inhabiting a particular geographical area or a common disease predisposition allele existing in a larger population (like the one that interacts with the immunogenic 33-mer peptide derived from alpha 2 gliadin). Thus, these T-cell based assays using cell-lines restricted to specific gliadin epitopes are not sufficient to claim general low-toxicity of wheat lines for all celiac patients. I also recommend that readers consult the following publications: Kasarda DD (2007) Letter to the editor: Triticum moncoccum and celiac disease. Scandinavian Journal of Gastroenterology 42(9):1141-1142; Vaccino P, et al. (2009) A catalogue of Triticum monococcum genes encoding toxic and immunogenic peptides for celiac disease patients. Mol Genet Genomics 281(3):289–300.

The results of screening hexaploid wheat material under the Celiac Disease Consortium (CDC) funded projects in the Netherlands resulted in a number of publications (Molberg et al. 2005; van Herpen et al. 2006; van den Broeck et al. 2009; van den Broeck et al. 2010). But the authors of these publications never claimed that the material can be used generally. Rather, they suggested these lines to have ‘low-toxicity', as they are devoid of specific epitopes or gluten proteins. Thus, they are good for consumption by a group of celiac patients who share a specific susceptibility allele. We have summarized this material and associated limitations in our publication under two headings, "Wheat Genotypes Naturally Deficient in Immunogenic Gluten Peptides" and "Discussion" [consult Wen et al. 2012 Proc Natl Acad Sci U S A 109(50):20543-20548 for details].

In addition, there is a misconception that with breeding for improved yield, protein content and quality has enhanced the toxicity of the wheat lines, which has resulted in higher incidence of disease over the last couple of decades. Although careful analysis of the facts suggests that nothing has changed over time other than eating habits, procedures of disease diagnosis (became more sophisticated) and public awareness grew, which might have resulted in this increase in the estimated number of celiac patients [also consult Kasarda (2013) J Agric Food Chem 61:1155-1159; Brouns et al. (2013) J Cereal Sci 58:209-215].

However, it is possible to identify low toxicity wheat lines showing reduced accumulation of certain prolamins or immunogenic epitopes, but these lines are not good for general use by celiac patients making labeling of these lines a nightmare, because with the present technology it almost impossible to make recommendations to the patients that they are sensitive only to a specific gluten protein and thus can consume a particular wheat variety.

Thus, this trait is an obvious candidate for genetic engineering. Two major achievements in this direction are:

• i) Gil-Humanes J, Pistón F, Tollefsen S, Sollid LM, Barro F (2010) Effective shutdown in the expression of celiac disease-related wheat gliadin T-cell epitopes by RNA interference. Proc Natl Acad Sci USA 107(39):17023–17028.
• ii) Wen et al. (2012) Structural genes of wheat and barley 5-methylcytosine DNA glycosylases and their potential applications for human health. Proc Natl Acad Sci U S A 109(50):20543-20548.

Collectively, as different celiac patients have sensitivities for different gliadins and glutenins, it is almost impossible to breed wheat lines safe for all celiac patients using conventional breeding approaches. A second issue is the identification of a product's suitability for a group of celiac patients and its labeling, which would be a great logistic challenge. After careful scrutiny of the literature and that the Codex Alimentarius Commission declared that all wheat, barley and rye species including spelt (Triticum spelta L.), khorasan or kamut (T. polonicum L.), durum, einkorn (T. monococcum), triticale, tritordium and their hybrids are immunogenic, and should be avoided by celiac patients (also consult Open Original Shared Link) add to that challenge. Moreover, some individuals are now known to be sensitive to oat gluten proteins (however, all oat varieties are not toxic, e.g., PrOatina™), and in rare cases, some are even sensitive to maize gluten proteins.

According to the latest (August 2, 2013) FDA recommendations any product having

Another issue that I want to raise is genetic modification. Why can't we look at transgenics more objectively without having negative feelings toward the technology before we start? Of course, researchers should first look for a solution in nature, and that's what we did, but there is no perfect solution available in nature. Although, the approaches we undertook are inspired by nature, the only way to deliver them is through biotechnology. This approach is where we are silencing the transcriptional regulator of all immunogenic prolamins. It was inspired by a mutation in a regulatory gene in barley. But, this mutation is ‘leaky'. That means it is not completely devoid of immunogenic prolamins. Similarly, the approach to express gluten-detoxifying enzymes in wheat grains was inspired by a barley enzyme that expresses during grain germination and degrades gluten proteins, along with a similar enzyme (but with complementary function) from the black mold Aspergillus, which naturally grows on bread slices. Another example is enzymes secreted by Lactobacillus species, a cocktail of acidifying and proteolytic lactic acid bacteria traditionally used for long-time fermentation by sourdough. These natural enzymes are capable of detoxifying gluten but express at a wrong time or a wrong location or are industrially inapplicable.

We have no intention to patent the technology or the product. We will license the varieties to the Washington Grain Commission, which is a general trend at Washington State University.

Scott Adams:
From my perspective, your endeavor faces two big problems:
What you end up with will be a genetically modified form of wheat, which is not allowed in Europe and other places (the list seems to be growing here);
What you end up with will still be called wheat, and according to current laws in the USA, cannot be labeled "gluten-free." This is a huge issue that would also be true for einkorn.

It would likely be a much easier process to further test einkorn's safety in celiac patients than to create a new genetic variant (that would really be similar to einkorn...right?), then have to go through the same process of testing.

Sachin Rustgi:
I agree with you on the first point, but as I mentioned previously, this debate about the so-called ‘GMOs' will settle down with time, which has happened in the past with several other technologies. For instance, people initially learned to make genetic crossbreeds in the 18th century, but the general acceptance of this technology as a breeding tool had to wait until the rediscovery of the Mendel's laws in 1900. Embracing this technology resulted in the production of hybrid maize that significantly boosted its yield.
The second example is the reluctance to use induced mutagenesis in plant breeding, which is now well accepted and used as a standard procedure to increase genetic variability. The major advantage of shifting to this technology was the production of semi-dwarf rice and wheat cultivars that resulted in the ‘green revolution'. Similarly, the general public will accept the transgenic approach, as there is no other way to meet the growing demand for quality food. I foresee the outcome as an ‘evergreen revolution'.

Moreover, if you look in depth at the outcome of using any of the above mentioned procedures, it is always a genetically modified organism, but it is up to us where we would like to draw a line.

We are not in favor of releasing ‘reduced or low-toxicity' wheat lines because, as I mentioned earlier, sensitive to, at present. there is no way of telling patients which gluten protein(s) they are sensitive to. In addition, the wheat varieties are not marketed on the basis of their protein composition (however, it is possible to determine the protein profile of a wheat variety). Thus, our ultimate goal is to develop ‘celiac-safe' wheat genotypes completely devoid of immunogenic prolamins or expressing large quantities of gluten detoxifying enzymes. In the former case, the gluten-level of the wheat line is expected to be lower than or equal to the FAO recommended limit of 20 ppm, allowing its labeling as a ‘gluten-free' commodity. In the latter case, the genotype will contain the dietary enzyme supplement within its grains, and hence, will be labeled differently, and will serve as a natural dietary therapy for celiac patients. (These grains or derived flours can be blended into normal flour to bake different products).

Two research groups, one in the US and the other in The Netherlands, are producing large quantities of these therapeutic enzymes in bacteria, and their utility as a dietary therapy for celiac patients is currently under advanced clinical trials. In this situation it will be the consumer's decision whether to get enzymes derived from a bacterium to be use as a food supplement or from wheat bread. These enzymes will not only be advantageous for celiac patients but will also prove beneficial to healthy individuals as these enzymes dramatically improve gluten digestibility and bioavailability. Healthy individuals, like celiac patients, cannot fully digest gluten proteins, but unlike celiacs, their intestines are impermeable to the undigested/partially digested gluten proteins, thus they are capable of flushing it out of their systems before it can induce an immune response. (Healthy individuals also do not carry disease predisposition alleles.) This indicates that even in healthy individuals the bioavailability of gluten proteins is low, which can be improved by feeding on these enzyme-fortified grains. It will also reduce how much must be eaten to get a similar amount of nutrition.

As I mentioned previously, Triticum monococcum (popularly known as einkorn), is good for consumption by one group of patients, but the major difficulty is determining who can have it without causing damage to their intestines. Thus, we are continuously working toward obtaining wheat genotypes that will be safe for all celiac patients, not just for a sub-group of celiac patients. This will avoid problems with labeling and diagnosis.

Scott Adams:
If possible, I also just want to clarify my point #2, and get your reply to it. I believe that you said anything testing below 20ppm can be labeled "gluten-free" in the USA, but the new regulations are a bit more complicated (Open Original Shared Link):
An ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains;
An ingredient derived from these grains and that has not been processed to remove gluten;
An ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten.

I guess you could argue that the genetic modification process has removed the gluten, but this would be a legal argument that certainly isn't obvious in the new laws. For example, it is my understanding that beers which contain barley and have used an enzyme to render them gluten-free cannot, at present, be labeled "gluten-free" under the new law, even though they test below 20 ppm.

Sachin Rustgi:
I agree with you on the issue of labeling under the new regulations, but as you said it could be argued that these new wheat strains (devoid of immunogenic prolamins) should not be counted with the immunogenic wheat varieties, and should be classified as a new market class of wheat. The additional support for this argument comes from the preliminary feeding trials performed on transgenic gluten sensitive mice, and advanced trials performed under the NIH guidelines on existing gluten sensitive monkeys, and on interested celiac patients. Hopefully, the argument, supported by strong evidence, will foster reconsideration of the present labeling regulations.

Scott Adams:
What are the chances that cross-pollination of your celiac-safe variety of wheat by normal unsafe wheat will occur, and cause a percentage of the celiac-safe crop to become unsafe?

Sachin Rustgi:
Wheat is a strictly self-pollinated plant with a natural out-crossing rate of less than 4% in cultivated varieties (in exceptional cases up to 6.05% of out-crossing was reported). Out-crossing occurs mainly in the late emerging wheat spikes, which contribute very little to the total seed count of a plant. Moreover, wheat pollens are relatively heavier in comparison with the other grass pollens, thus could travel to a maximum of 1 m distance from the pollen source, and under optimal field conditions (20C and 60% relative humidity) can survive up to one half hour after release from anthers. Thus, if the APHIS (Animal and Plant Health Inspection Service) recommendations about isolation distances are followed a contamination of ‘celiac-safe' wheat with the ‘immunogenic' wheat can easily be avoided. In addition, a positive correlation between the rate of out-crossing in wheat and the length of flowering period was documented. Thus, the celiac-safe wheat genotypes can be selected for early and synchronously flowering phenotype to further reduce the rate of out-crossing.

What is eosinophilic esophagitis (EoE)? Let's break it down:

• The esophagus is the long tube that connects your mouth to your stomach. What goes through your esophagus? Food and drink.
• Eosinophils are a type of white blood cell that increases in the case of allergy.

EoE is a condition where eosinophils have infiltrated the lining of the esophagus causing inflammation and discomfort. It affects both children and adults, more males than females, and can manifest in failure to thrive and feed in infants, as well as heartburn and difficulty swallowing solid food in older patients. EoE results in a stiffening of the esophagus with strictures, making it quite difficult and uncomfortable to swallow.

It seems fairly clear that if white blood cells associated with food allergy increase in an area of the body that food passes through, the obvious conclusion to form is that the individual is eating something they are having a negative reaction to—right?

Yet standard treatment for this condition, which is rising in incidence, is drugs (specifically proton pump inhibitors) and mechanical dilation of the restricted esophagus when these other medications fail to work. I do find it interesting that we are seeing more and more of this condition over the last 20 years, during which time the American diet has continued to worsen.

Diagnosis is made from an endoscopy that evaluates swallowing and includes a biopsy of the esophagus that reveals a high eosinophil count.

Causes of EoE include acid reflux, which affects the lining of the esophagus, often causing ulcers, while less common causes are viruses (herpes simplex) and fungal medications that become stuck in the esophagus, creating the inflammation seen with the condition.

Due to the acid reflux component and the tendency in our country to treat with drugs first, proton pump inhibitors that lessen acid production and therefore lessen the symptoms of acid reflux, are recommended as the first order of treatment—even in children. The protocol is 4 to 8 weeks of the drug, after which time the symptoms are re-evaluated to see if they have improved or remain the same. If they remain, a diagnosis of EoE is made.

I'm not saying that short-term use of proton pump inhibitors has no value. If someone has a bacterial infection of the stomach (H. pylori) that can result in ulcers, or an active ulcer, this drug is effective. It can also provide symptomatic relief for someone who is miserable with the symptoms of EoE. But it's not the root cause ‘answer' for the condition and it particularly upsets me when very young children come in who are already on the drug.

Why?
The problem with the protocol that uses proton pump inhibitors is two-fold:

• It's typically not addressing the root cause, which is a food reaction.
• It's likely making the real root cause worse. This is interesting. If the problem is actually a food reaction or allergy, a proton pump inhibitor that lessens acid production actually compromises the ability of the body to digest food. This compromised digestion makes it MORE likely that an allergy or food reaction will develop.

Fortunately, a new study sheds light on how effective dietary treatment can be. On February 14, 2014, the journal Gastroenterology published an article entitled "Efficacy of Dietary Interventions in Inducing Histologic Remission in Patients with Eosinophilic Esophagitis: a Systematic Review and Meta-analysis.

The researchers evaluated 581 references and data from 1317 patients, both children and adults who received different dietary treatments. The treatments included amino acid-based elemental formulas (basically a liquid diet that is completely allergen free), elimination diets based on allergy testing and 6-food elimination diets that include the removal of wheat, milk, soy, eggs, peanuts, tree nuts, fish, and shellfish.

What the researchers looked for was the ability to reduce infiltration of the eosinophils in follow-up biopsies. This would mean that the body's immune system was no longer mounting an inflammatory response.

Their findings were as follows:

• Elemental diets (liquid and allergy-free) were effective in 91% of cases.
• The Six food elimination diet was effective in 72% of the cases.
• Foods removed based on the result of allergy tests were effective in 46% of the cases.

Both adults and children seemed to respond equally.

What can we learn from this study?
Eliminating common allergens, including gluten, a known inflammatory agent, is a great place to start when trying to improve this condition. A full 91% and 72% improved when common allergic foods were removed. Those are some pretty impressive percentages.

I have found an interesting trend in our country. If doctors have the option of giving a prescription or asking a patient to make a dietary change, they will opt for the prescription. It's certainly easier to swallow a pill rather than make a dietary and lifestyle change. I'll grant you that. But is it right?
When you appreciate that the pill is a mere band-aid and a highly temporary one at that, what really is a doctor doing for someone in NOT insisting that they change their diet? The truth of the matter is that taking the ‘easy' way out is not only cowardly, it is irresponsible.

After the drug stops working, then what? Realize that throughout the period of time that the patient was on the drug, they were continuing to eat whatever was actually creating the problem and therefore their esophagus became more and more inflamed. While the human body's ability to heal is quite miraculous, once sufficient hardening and strictures have occurred in the esophagus, a full return to normalcy might not be possible. It is important that we intervene with the correct therapy quickly.

Another facet to the ‘drug over food' decision on the part of most doctors is that they themselves don't change their own diets. I have often spoken with doctors who are themselves unhealthy yet they refuse to change their diets and are therefore convinced that they won't get their patients to make lifestyle changes either. Thus, they don't tend to recommend it because they are already convinced it won't occur.

Is it fair to the patient to take the easy way out while they continue to worsen? I don't think so.
Personally, I can tell you that here at HealthNOW Medical Center we have seen many cases of EoE and each one of them was associated with a food reaction, often gluten and dairy. And, because we practice what we preach, we have no trouble with our patients following our dietary and lifestyle change recommendations.

If you know any youngster, adolescent or adult suffering with this condition, show them (or their parent) this article. A simple dietary change could be all that is needed to improve this serious condition.

If your health is not at the level you desire, consider contacting us for a free health analysis—call 408-733-0400. Our destination clinic treats patients from across the country and internationally so you do not need to live local to us to receive care. We are here to help!

Reference:

• Gastroenterology. 2014 Feb 14. pii: S0016-5085(14)00217-0. doi: 10.1053/j.gastro.2014.02.006. [Epub ahead of print]

Celiac.com 11/15/2016 - Do you know someone who has lived with celiac disease for over eighty years? Someone who lived on nothing but mashed bananas for a year? Someone who continued to eat gluten for over 30 years because doctors didn't know how to treat a celiac diagnosis? Someone who experienced serious physical, emotional, and family challenges as a result? Well, I met such an individual at the International Celiac Symposium in Chicago in the fall of 2013. Clara (a pseudonym) attended my poster session, The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. As she stood before my poster with tears in her eyes she began to say, "This is me. This is me." Through a brief conversation then, and several lengthy telephone interviews that followed, she shared her incredible story with me and gave me permission to share it with you.

Clara was born in 1933 on a citrus ranch in California and was the youngest of five children. She was very sick as a baby with what her family thought was a "terrible case of the flu." She lost muscle tone, had wrinkly skin, and some mornings she didn't move or even open her eyelids without the help of her mother. She looked malnourished and had a distended stomach. When she was two, her parents took her to Dr. Victor E. Stork, but he was not sure what the problem might be. A few weeks later, the doctor attended a conference where he described Clara's symptoms. He learned of another child with similar symptoms who had been diagnosed with celiac disease and fed nothing but mashed bananas. After Dr. Stork informed Clara's parents, Clara's father purchased a big hook and drove to the Long Beach docks to buy bananas. He hung bunches of bananas on their back porch to ripen and she was fed nothing but mashed bananas for over a year. What started as half a teaspoon at a time quickly grew until she was eating many bananas each day. This part of Clara's story greatly intrigued me, as I had just read the research of Sidney Haas. In the 1920s Hass successfully treated eight children who were "anorexic" from celiac disease with the banana diet while untreated children did not survive (Guandalini, 2007).

Growing up, Clara was a happy child but had no appetite and didn't enjoy food. She was very small for her age and, at times, was made to stay at the dinner table until she ate everything on her plate. Clara's mother, a practical nurse, thought she might be allergic to fat. The family kept a quarter of a beef in a freezer locker 25 miles away and her mother scraped the fat off the beef before giving it to Clara. She was also made to finish her breakfast, typically oatmeal, toast, and orange juice, before going to school in the morning. Clara routinely had vomiting and diarrhea each morning, and didn't understand why this didn't happen to other children. She missed school often because she had abdominal discomfort and was weak. Clara hid in the girls' restroom during recess and physical education so she wouldn't have to participate. Since she was unsuccessful at athletics she found it easier to sit on a toilet with her feet pulled up so no one would see her.

Clara continued to miss a great deal of school but was required to do her school work at home. During second grade she worked ahead, completing both second and third grade work. Consequently, she was allowed to skip third grade, which only accentuated her small size. When she entered high school people thought she was in third or fourth grade. After entering puberty at age 14 she finally acquired an appetite and began to grow much taller. At this point in her life, Clara decided that she would never be sick again. She graduated from high school in 1950, after acting in dramatic productions, serving as president of the Girls' League, and planning the ten year class reunion.

Clara married at age twenty, between her junior and senior years in college. She had few symptoms during this time and was hired as a kindergarten teacher. Her husband was drafted and she taught in several different places on the west coast while he was in the service. During this time, Clara had a baby girl followed by two miscarriages. Three weeks after the birth of their second child Clara became very ill and lost her hair. They had no insurance and she lost a dramatic amount of weight. She weighed only 80 pounds and her husband had to carry her from the bed to the couch. The vomiting and diarrhea got worse and her mother had to take care of her babies. She was on heavy doses of medication and her doctors thought her gastrointestinal problems "were all in her head."

Clara's speech became "jumbled" and she was not making sense. Her doctor sent her to a psychiatrist who placed her in a "sanitarium." She was hospitalized for several months where she felt very isolated and alone. Her relatives weren't told where she was and her father would not allow her mother to visit her. At the sanitarium Clara received shock treatments every three days, ten in all. Her sister offered her son's college fund to pay the sanitarium bill so that Clara would be allowed to leave.

When Clara returned home she found she had lost much of her memory. She didn't remember how to hold a knife and her daughter, who was three, taught her how to tie her shoes. She was on sedatives and slept much of the time. She does not know how she took care of her children during this time. Clara and her husband had little money, so she took in ironing and taught preschool. It took them twelve years to pay off the hospital bills.

It was fifteen years after this experience, and two babies later, that Clara finally got treatment for her celiac disease. She was hospitalized at UCLA Medical Center for a month while more tests and an intestinal biopsy were completed. It was 1972, and she was now 39 years old. The gastroenterologist finally confirmed the diagnosis of celiac disease and told her that she would never be able to eat pie, bread, or cake ever again. Clara was so thrilled that it was "just food" that would make a difference and not cancer. The doctor told her that there was no reason why she was still alive. Within two months she was noticing a difference and had gained weight. Clara was able to go back to teaching part-time and started teaching full-time in 1981.

After her celiac diagnosis Clara did her best to avoid grains completely. One doctor told her to eat wheat germ, a product she clearly was correct in avoiding. In the 1970s she tried to make bread with rice, but her attempts were very unsuccessful. Clara started a support group in 1984 which was part of the Celiac Sprue Association. Little by little the group started receiving information on eating gluten-free, as many of these foods were readily available in Europe. By 1988 there were some gluten-free foods available in California. Clara experimented with cooking and breads and tested recipes for Carol Fenster's cookbooks. Her household today is totally gluten-free, with the exception of a loaf of bread for her husband. She and her husband traveled extensively after their retirement, visiting every state except Hawaii, along with the Caribbean and Australia.

As far as lessons learned, Clara believes that people should listen to each other. She says, "If a person says, I feel horrible, someone should listen. The medical profession didn't listen to me. They said it was all in my head. If they had listened I could have been helped." It is unfortunate that her doctors didn't listen, as Clara could have been diagnosed much sooner. Willem-Karel Dicke first published an article on the importance of a gluten-free diet for the treatment of celiac disease in 1941 (Berge-Henegouwen & Mulder, 1993).

Since my own celiac diagnosis came within two months of the onset of symptoms, I marvel at how someone could live for 39 years while still eating gluten. I think about the lessons to be learned from Clara's story. I consider the advancements that have been made in the diagnosis and treatment of celiac disease and the ease with which I'm able to eat gluten-free. And I send a reminder of the importance of early detection and the physical and emotional consequences that individuals like Clara face when a celiac diagnosis is delayed.

References:

• Guandalini, S. (2007). A brief history of celiac disease. Impact, 7, (3), 1-2.
• Van Berge-Henegouwen, G. P., & Mulder, C.J. (1993). Pioneer in the gluten-free diet: Willem-Karel Dicke 1905-1962, over 50 year of gluten-free diet. Gut, 34, 1473-1475.

Celiac.com 11/10/2016 - So far, 2014 has been a challenging new year for me. I was reminded of some events that happened almost fifty years ago. Based on that reminder, I resolved to contact a former girlfriend, both to suggest that she get testing for celiac disease, and to apologize for some insensitive things I said and did when I was 17. She was a year younger than me and one grade behind me in school. She was very slender and exceedingly self-conscious about having what she called "a chest like a boy". (She may have been experiencing delayed development, as is sometimes seen in celiac disease.) Every new place we visited, she went looking for the washroom as soon as she could. Movie theatres, restaurants, libraries, everywhere we went, she found the washroom first. She even did that the first time she was at my mother's house, which occasioned an uncharitable comment from my mom.

Pat was also troubled by some microscopic hair that was growing on her upper lip. It sounds silly now, but these things were important to her at the time. I remember telling her that nobody could see her "moustache" without a magnifying glass. Nonetheless, she put Nair on it and, for at least one day, had the brightest red upper lip I have ever seen. She said it was too sore to put makeup on, so it really drew a lot of unwanted attention. Until meeting my wife, I never knew anyone who was as honest about who she was. I regret that I didn't appreciate her as much as I should have, but that was partly due to my age.

Time passed, way led onto way, and life happened. Forty nine years later, there I was, looking for her on Facebook and other social media. I tracked her through old phone numbers, family members, and I even searched the title on her parents' home. I was full of excitement about re-connecting with my old friend, a person with whom I had shared those last innocent days of adolescence. Our friendship had been cut short because her dad was transferred to a city more than 600 miles away, and she was annoyed with me because I had said and done some insensitive things. We never even wrote to each other. I used to talk about her with my students, explaining our mutual fascination with literature. I thought about her often, but never, until this year, considered contacting her.

After about a month of searching, I eventually found her. Much to my dismay, I was almost a year too late. She had passed away on March 10th of 2013, at the age of 64. At the time of her death, she was in the process of being evaluated for Parkinson's disease. She was at home when she experienced her last, massive seizure, which resulted in brain death. Both of her daughters are heartbroken over Pat's sudden, unexpected passing. Already a widow, Pat had left this world before I took the time and made the effort to be in touch with her again. I was filled with sadness, disappointment, and regret when I first reached one of her daughters and confirmed that she was the person I had known. I still wonder, if I had gotten in touch a decade earlier, would she still be alive? Would a gluten-free diet have helped her? I'll never know, but the relevant literature does seem to suggest that a gluten-free diet may have helped (1, 2).

Then, a week or so ago, I received an email from a concerned mom. Her athletic, teen-aged son was recovering from a brain concussion he had sustained. His friends who had sustained similar concussions, at other times, reported having recovered more quickly. His mom began to wonder if her son's slow recovery could be the result of his celiac disease, despite more than a decade of strict compliance with the diet. I didn't know. I could only offer the suggestions that he try daily supplementation with medium chain triglycerides, and a ketogenic diet, as they seem to have stopped my life-long tremors. I also suggested that he try avoiding dairy and soy as well, based on research I did 14 years ago for my grandson.

This concerned mom also mentioned, "I generally find doctors are dismissive of the idea that celiac is linked to any issues outside the digestive tract, unless it's malnutrition-related, and they tend to think everything should be hunky-dory if you just follow the gluten-free diet." She went on to say that "It gets kind of old being thought of as the silly, overprotective mom."

Neurological researchers have long known about a correlation between a variety of neurological ailments and gluten sensitivity, with or without celiac disease (3). We also know that neurological symptoms are commonly found among more than half of patients with celiac disease (4). Also, despite modern diagnostic protocols and technology, we are still seeing some overlap between celiac disease and both amyotrophic lateral sclerosis (5) and multiple sclerosis (6) as well as other neurological illnesses. For instance, the increased presence of the gene named Parkinson's disease 7 (PARK7) has been found in the duodenal mucosa of untreated children with celiac disease and may be implicated in the alteration of the permeability of their intestinal barriers (7). This further suggests an important link between gluten sensitivity and Parkinson's disease. This gene may predispose to the appearance of this most distressing disease later in life.

Many people with celiac disease continue to experience neurological symptoms, despite compliance with a gluten-free diet. This may suggest that the neurodegenerative dynamics, once initiated by gluten ingestion, may continue, either in the absence of gluten or in response to trace amounts of gluten (10). I also started to wonder if the cellular and immune system clean-up processes that follow brain injuries might initiate some of the same damaging autoimmune processes in the brain? They might also occur in response to other dietary factors which may trigger autoimmune dynamics that mimic reactions to gluten, or maybe there is some other, unknown factor that triggers the brain damage.

One research group on the leading edge of the investigation of gluten sensitivity in relation to neurological illnesses reports that, "Incomplete elimination of gluten from the diet may be enough to abolish gastrointestinal symptoms with recovery of the small bowel mucosa but is insufficient to arrest the state of heightened immunological responsiveness resulting in neuronal injury" (10). So, when it comes to even tiny amounts of gluten, they may be enough to perpetuate gluten induced neurological illnesses. There may also an agent in the environment that is causing a cross reaction. This area really needs more investigation, as baby boomers threaten alarmingly increased rates of all forms of dementia.

We already know that people with celiac disease are at much greater risk of developing neurological diseases than the general population (13). These ailments range from headaches to learning disabilities to movement disorders to tic disorders, to seizures, to sensory disorders (4) and many who have non-celiac gluten sensitivity also experience a high rate of neurological disease (3). Does that also mean that young athletes with celiac disease will take longer to recover from head injuries?

Does it also mean, given the slow acceptance of gluten as a factor in many common neurological illnesses (11) that people like my former high school flame will never be told about the neuro-protective benefits of a gluten-free diet or a ketogenic diet? Surely, resistance to the well established data showing neurological manifestations of gluten sensitivity as a scientific fact (12) is more emotional than rational. A gluten-free diet and/or a ketogenic diet should be offered to those people regardless of whether their neurologist is either resistant to, or not staying current with, his/her professional literature. But they cannot offer what they do not know or have developed some bias against. Dr. David Perlmutter has done an excellent job of getting the word out to the general public, with his recent book titled Grain Brain, but there is much more work to do.

People who are gluten sensitive, and are therefore at greater risk of developing neurological disease, might be well advised to look carefully at the benefits of a high fat, ketogenic diet, and the benefits of supplementing with medium chain triglycerides and Omega 3 fatty acids (14). Equally, they might be well advised to avoid the pro-inflammatory omega 6 and omega 9 fatty acids, as well as limiting the amounts of polyunsaturated fats they eat, which are also pro-inflammatory 14). I find that I feel my best when I am in mild, diet-induced ketosis (about 15 mg/dl as measured in morning urine, with Ketostix, which are inexpensive and available at most drug stores). There are a number of good books that explore the fine points of a high fat, ketogenic diet. These include The Art and Science of Low Carbohydrate Living by Volek and Phinney, The Ketogenic Diet by Lyle McDonald, and many others.

Finally, when considering a gluten-free diet for neurological ailments, it is important to recognize that 20 parts per million may be far too much gluten to consume. The maximum threshold to qualify as gluten-free under the United Nations Codex Alimentarius Commission and many other regulatory agencies, including the FDA, is 20 parts per million. Without further research, especially in the field of neurology and gluten sensitivity, we will never know what, if any, levels of gluten are safe to consume.

Regardless of the nature of your neurological ailment, whether it is Parkinson's disease, or seizures, or multiple sclerosis, or amyotrophic lateral sclerosis, or brain cancer, or almost any other kind of cancer (15), or even if you are just slow recovering from a neurological injury, the positive results of dietary interventions might offer you a whole new lease on life.

Sources:

1. Open Original Shared Link
2. Currie S, Hadjivassiliou M, Clark MJ, Sanders DS, Wilkinson ID, Griffiths PD, Hoggard N. Should we be ‘nervous' about coeliac disease? Brain abnormalities in patients with coeliac disease referred for neurological opinion. J Neurol Neurosurg Psychiatry. 2012 Dec;83(12):1216-21.
3. Matheson NA. Letter: Food faddism. Am J Clin Nutr. 1975 Oct;28(10):1083.
4. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6.
5. Brown KJ, Jewells V, Herfarth H, Castillo M, White matter lesions suggestive of amyotrophic lateral sclerosis attributed to celiac disease. AJNR Am J Neuroradiol. 2010 May;31(5):880-1
6. Batur-Caglayan HZ, Irkec C, Yildirim-Capraz I, Atalay-Akyurek N, Dumlu S. A case of multiple sclerosis and celiac disease. Case Rep Neurol Med. 2013;2013:576921.
7. Vörös P, Sziksz E, Himer L, Onody A, Pap D, Frivolt K, Szebeni B, Lippai R, GyÅ‘rffy H, Fekete A, Brandt F, Molnár K, Veres G, Arató A, Tulassay T, Vannay A. Expression of PARK7 is increased in celiac disease. Virchows Arch. 2013 Sep;463(3):401-8.
8. Hadjivassiliou M, Grünewald RA, Lawden M, Davies-Jones GA, Powell T, Smith CM. Headache and CNS white matter abnormalities associated with gluten sensitivity. Neurology. 2001 Feb 13;56(3):385-8.
9. Hadjivassiliou M, Sanders DS, Grünewald RA, Woodroofe N, Boscolo S, Aeschlimann D. Gluten sensitivity: from gut to brain. Lancet Neurol. 2010 Mar;9(3):318-30
10. Hadjivassiliou M, Grünewald RA, Davies-Jones GA. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3.
11. Tengah P, AJ Wills. Questions and Answers About the Neurology of Gluten Sensitivity. Pract Neurol 2003;3:354-357
12. Hadjivassiliou M, Grünewald R. The Neurology of Gluten Sensitivity: science Vs conviction. Pract Neurol 2004;3:4, 124-126.
13. Hadjivassiliou M, Grünewald R. Gluten sensitivity as a neurological illness. Neurol Neurosurg Psychiatry. May 2002; 72(5): 560–563.
14. Open Original Shared Link
15. Paoli A, Rubini A, Volek JS, Grimaldi KA. Beyond weight loss: a review of the therapeutic uses of very-low-carbohydrate (ketogenic) diets. Eur J Clin Nutr. 2013 Aug;67(8):789-96

Of course, my first gluten-free vacation won’t be a trekking trip across the Himalayas although this is still on my bucket list. No, for my first gluten-free vacation I have chosen a less challenging trip. I have decided to go on a seven-day Mediterranean cruise on board the Aida Sol. Aida assures, on their website, that allergy sufferers can find and enjoy a variety of delicious allergen-free (especially gluten-free and lactose-free) food aboard their cruise ships. Additionally, you can meet with the head chef for 30 minutes to discuss your diet options for the week, and there is always a chef available for questions. It all sounds so promising, but is it really as wonderful as Aida claims? Is the food aboard the Aida Sol really safe for someone with celiac disease? I’m ready to find out.

Day 1
It is late in the afternoon and we are finally at the check-in desk. I am getting hungrier and more nervous by the minute. When I ask the receptionist how I can schedule my private session with the chef, he tells me to just go to one of the buffets and ask for one of the chefs. That should be easy, but I’m still nervous. This is the first time since my diagnosis that I will be eating at a regular restaurant. What if I get sick tonight? What would I eat for the rest of my trip?

When we arrive at the Bella Donna Restaurant, one of the buffets on the Aida Sol, a welcoming chef gives me a tour of the buffet. He doesn’t take the time to sit down with me, but he shows me around; he points out the labels right above every dish which say whether the food is gluten-free, lactose-free, and/or vegetarian. What a relief! I immediately see several dishes that I believe I can eat. After a quick tour of the buffet, I take a plate and start grabbing more and more … meat. Yes, most of the gluten-free and lactose-free options are meat and my plate is packed with it except for a few veggies on the side. Ironically, I have never been a big meat eater until now. In fact, before I went gluten-free, I was a pescetarian. The only reason I decided to eat meat again was because I was eating as much as I could but kept losing weight. By the time of my diagnosis I was no more than 106 lb.

I’m feeling wonderful. I’m at a regular restaurant and I’m enjoying my food like everybody else. Not only can I eat as much as I want, but I also have multiple choices … until we get to the dessert. I’m walking from one dessert to the next. None of the labels says gluten-free. I’m slightly disappointed. But let’s try the fruit bar! And what an amazing fruit bar it is! Besides apples and oranges, I see mangoes, kiwis, papayas, pineapples, purple & green passion fruits, persimmons, dragon fruits, cape gooseberries, and coconuts. I don’t think I’ll go hungry this week. What a relief!

Day 2
First day at sea, I made it through the first night without getting sick! I’m incredibly happy. The sun is shining through the window. The balcony door is open. I can hear the waves. What a perfect morning! Until I get up. Wow! The motion of the sea is stronger than I expected. I was feeling great, but now I’m not. I feel sick. Seasick. No breakfast for me.

Day 3
We’ve reached Tunisia, but before I explore the cities Tunis and Sidi Bou Said, I need to eat as much breakfast as I can since I’m not sure if I’ll be back in time for lunch and I’m too scared to try a Tunisian restaurant. This is my first breakfast on board. I’m walking around the buffet, trying to find something gluten and casein-free, but none of the dishes have labels. I’m feeling a little lost. I’ve already gotten used to those labels so much so that without them I immediately expect the food to be unsafe. I’m staring at the food, but I’m afraid to touch it. Where is the chef?

When I ask the chef about what’s gluten-free, he doesn’t seem as well prepared as the first night. Maybe it is because of the lack of labels. When I ask him about the deli meat, he tells me that it is not prepared on board the ship, so he can’t tell me whether it is gluten-free or not. Why not? Why does the chef of a large cruise ship, which claims to be prepared for guests with celiac disease or gluten intolerance, not know whether the food he’s offering is gluten free? That’s not what Aida advertises on their website. I begin to realize that the staff, including the chefs, is not as well educated when it comes to celiac disease and gluten as I had hoped, which becomes even more obvious when the chef suggests that I could probably eat the ham. I’m standing in front of the deli counter, staring at the ham and then the meat-cutting machine. Wait a minute! That meat-cutting machine, is it used for all the deli meats? I begin to hear the word “cross-contamination” ringing in my ear; it’s slowly taking over my mind. I feel a bit of fear rising in my body. My trust in the chefs and kitchen staff begins to crumble. I will need to be more careful from now on and watch out for cross-contamination.

Day 4
We are in La Valette, Malta. The weather has been a mix of rain and sunshine, but the city is so beautiful that no rain can cloud its beauty. I’m running around the city, trying to see as much of it as possible before I rush back to the ship to grab some lunch before the buffet closes. The restaurant I usually choose is already closed and I have to try the Markt Restaurant. Usually both of these buffets offer lots of gluten-free options, but not this time. Twice, I walk from dish to dish, trying to find something I can eat. It’s not that there aren’t any gluten-free options, but the number is so small that my other food intolerances make it impossible for me to find any food. I end up eating some fruits and a salad that has garlic in it which makes my stomach hurt. This is the first time I leave the restaurant hungry, and I’m hoping that it will be the last.

Day 5
We spent the day in Palermo, Sicily, and are now ready for dinner. As usual, the dinner food is delicious. Every night my plate is packed with meat, vegetables, and fruits. So far, I can say that I haven’t been glutened, but I’ve been noticing other places of cross-contamination. Tonight, for example, you can get gluten-free pasta sauce but not gluten-free pasta. In fact, the gluten-free pasta sauce is right next to the wheat pasta. Not just that, but a few of the wheat noodles have already fallen into the pasta sauce. I will certainly not eat the sauce.

Day 6
My breakfast is the same as it was yesterday, and the day before, and the day before that: bacon and eggs. Every single day I’ve been eating bacon and eggs for breakfast. Lots of bacon and eggs! At least half of my plate is packed with bacon while the other half is packed with eggs. I can feel people’s eyes on the back of my neck wondering why I’m eating so much bacon and eggs. Well, it’s pretty much the only thing I can eat for breakfast.

I’m slowly getting tired of all the meat, and I wish I had other options, but my body feels fine. I am still watching out for cross-contaminated food. Tonight, for instance, I’m avoiding the cut fruits from the fruit bar because the kitchen staff that is cutting the fruits is also preparing the Kaiserschmarrn (a cut-up sugared pancake with raisins) in the same work area. Even though the staff members are wearing gloves, they haven’t been changing them before handling the fruits. It becomes more and more obvious that the kitchen staff is not well informed when it comes to gluten and cross-contamination.

Day 7
Last destination: Barcelona. I have heard of the city’s numerous gluten-free dining options, but while I’m exploring the city, it feels like I’m only seeing bakeries filled with pastries made out of wheat. This entire cruise I didn’t eat any pasta, bread, cookies, or chocolate, and I’m craving it, oh, I’m craving it! Even though I don’t eat much of it anymore, it feels like I’m actually addicted to it. I’m not sure whether it’s the flour or the sugar, but it’s getting harder and harder to bear those cookies and cakes behind the shop windows. I’m trying to distract myself from what I’m seeing, which works until I walk into my room. When I open the door, I see a plate with a big piece of cake lying on my bed. Is this a joke? If it is, it’s not a good one. Where does this cake come from? My father is smiling at me. He tells me that he was in the restaurant for coffee and cake and heard someone request a piece of gluten-free cake from the kitchen, so he ordered one for me. I can’t believe it! They had gluten-free cake the entire week and I didn’t know! The chef never mentioned it. I decide to eat the cake as a special dessert after dinner.

Day 8
Last night was a nightmare. I had cramps that kept me awake the whole night, and I had numbness in my fingers. Until today I was convinced that the numbness in my fingers was caused by gluten, but the cake was gluten-free, so was there maybe corn in it? I’m confused.

In the afternoon, I decide to go see one of the kitchen chefs to ask him about the ingredients in the gluten-free cake. I want to know whether there was corn in it or not. The chef is very accommodating and immediately goes into the kitchen to check the ingredients on the box. When he comes back, he tells me that there is no corn in the cake but that there is a little bit of wheat in it. What? There’s wheat in the gluten-free cake. How can that be? How can it be gluten-free when there is a little bit of wheat in it? He tells me that it says gluten-free on the box. He believes that it must be just traces of wheat. Right! Traces of wheat! That’s enough to make me sick. So, the numbness in my fingers last night was actually caused by gluten.

Departure
After my talk with the chef, it’s time for our departure. It was a great vacation, but I’m ready to get back home, especially since my trust in the kitchen chefs has been damaged too much by this last incident. Overall, Aida Sol did not deliver as well as promised on their gluten-free commitment. Yes, Aida offers various delicious gluten-free dishes on board their ships so that no one needs to go hungry; however, because of the chefs’ and staff members’ insufficient knowledge of celiac disease and of the risks of cross-contamination, I can’t declare the gluten-free food options on board Aida Sol to be safe. My advice to gluten-free travelers is to remain careful even when it says gluten-free. Always ask for the ingredients, especially of those foods that are not prepared on board the ship.

Despite their ignorance of cross-contamination, I value Aida for trying to be accommodating to allergy sufferers. There are not many hotels and restaurants that are as accommodating as Aida, but I would appreciate even more if Aida had better informed staff that is more aware of the risks of cross-contamination. It’s of no use to allergy sufferers if the great gluten-free food that is offered on board the ships gets contaminated because of ignorant kitchen staff. Furthermore, there should be at least one chef in each restaurant that is familiar with the ingredients of the foods that are not prepared on board the ship. I only got sick once at the end of my time on  the Aida Sol, but I am not sure if it was pure luck that it happened not more than once.