Amy's Kitchen Added to "Do Not Eat" List

Soon after I was diagnosed with non-celiac gluten sensitivity, I tried a couple of Amy's Kitchen gluten free frozen meals that did not seem to agree with me. This week I tried a can of their Organic Chili. After experiencing the gluten fatigue and other symptoms, I've decided to avoid the Amy's Kitchen brand of processed food.

All of the Amy's Kitchen gluten free foods I've encountered at the store have the "handled in a facility that processes wheat . . . " label. Although I generally avoid any food item that carries that notice, I gave in this time because of a busy schedule and wanting to have something that is quick to prepare.

Very typical of the "I've been glutened" stories you can find online, getting sick resulted from relaxing standards and making choices based on convenience rather than safety. Besides ignoring the possible cross-contamination issue that was evident from the label, I broke standard operating procedure by not consulting with google before purchasing something I hadn't tried before.

If I had performed a quick search on my phone, I would have immediately found results from others with celiac or gluten sensitivity who avoid Amy's based on personal experience:
http://www.glutenfreefaces.com/forum/topics/about-amys-gluten-free-frozen

http://glutendude.com/gluten/is-amys-pizza-really-gluten-free/

http://celiac-scoop.blogspot.com/2012/01/not-so-gluten-free-products-from-amys.html

http://www.celiac.com/blogs/12/Frozen-goods-AMYs-gluten-free-pizzanot-gluten-free-for-me.html

To the credit of Amy's Kitchen, they seem to genuinely care about the issue of cross-contamination in their facilities. Some of the comments in the posts I shared contain correspondence directly from Amy's Kitchen regarding the gluten exposure issues that some of their customers have experienced. 

It seems like Amy's Kitchen is making an honest effort to avoid cross-contamination. The fact that they are willing to respond personally, send food to be tested independently, reimburse customers for their food, etc. shows a lot of integrity. Nevertheless, it is clear that cross-contamination is still occurring in their facility.

I will add my voice to the chorus of voices requesting that Amy's Kitchen create a dedicated facility for their gluten free foods.

Gluten Free at the Taj Mahal in Lancaster, PA

I recently ate at the Taj Mahal Indian Restaurant in Lancaster, PA. Before being seated, I discussed my gluten sensitivity with the owner, Mani Sharma. He informed me that there is no flour used in their foods except for the bread. All of the sauces are cream or tomato/vegetable-based and flour is never used as a thickening agent.

Mani assured me that I could eat anything except for the bread. As a standard precaution I would also avoid anything coming out of the deep fryer. (According to the menu, most of the Taj's appetizers use chickpea flour. However, I neglected to ask Mani if any other items using regular flour go into the fryer.) I asked a couple questions about cross-contamination and was satisfied enough with the answers to proceed with my meal.

I enjoyed my vegetarian dish and did not experience any nausea or sickness afterward.

http://www.tajlancaster.com/

http://www.yelp.com/biz/taj-mahal-lancaster

Myth: "Gluten Free" means free of gluten

What does it mean for something to be "gluten free"?

Most people are not aware that food labeled "Gluten Free" is not necessarily free of gluten. It is a term that can mean different things to different manufacturers, much like "organic".

Current standards in the U.S. allow for up to 20 ppm of gluten in "Gluten Free" food. While this is a very small concentration, it is enough to cause problems for some celiacs and those with non-celiac gluten sensitivity (NCGS).

While 20ppm of gluten or less is considered gluten free, there are no agreed-upon standards for the preparation of gluten free food or for the prevention of cross-contamination.

Packaged gluten free food

The actual amount of gluten in your processed gluten free food varies depending upon many factors including the type of grains used, how the grains are processed, the cleanliness of the processing equipment, and the presence or absence of cross-contamination in the processing facility.

The situation is complicated when you factor in the effect of various testing methodologies used to assign a value to gluten content. Different methodologies can result in different values for the same batch of food.

There is currently no standard definition of "gluten free", so it is important to contact manufacturers directly in order to find out what "gluten free" means to them.

Homemade gluten free food

Cross-contamination is a serious issue. Your "gluten free" food prepared in a contaminated kitchen or with contaminated fingers and utensils can no longer be considered gluten free. This is a risk of dining out or eating food that a friend or family member has prepared for you.

There is a wealth of gluten free recipes and cookbooks. However, a gluten free recipe is only one factor in determining whether or not the food is safe to eat. Preparing a gluten free meal requires extreme care in selecting ingredients, handling the food and preventing cross-contamination. This is a very difficult thing to do in a kitchen that is not dedicated to gluten free meal preparation.

It is not just a logistical problem related to myriad details like having to use a separate butter dish. Preparing a gluten free meal requires specialized knowledge, commitment and vigilance. Most people would not think to check their spices, marinades or soy sauce for gluten. Yet those are typical ingredients that carry a gluten payload. Most people would not understand that merely touching a crouton before grabbing your plate could contaminate your meal and make you sick.

Gluten sensitivity is variable; the need for caution is constant.

The level of gluten sensitivity is unique to each person. Some may not experience overt symptoms when exposed to trace amounts of gluten. Others may be sick for weeks.

Overt symptoms do not tell the whole story because damage can still be taking place internally. This is why it is very important to think carefully and ask questions about the source and preparation of the foods you eat.

Most importantly, do not take for granted that something labeled "Gluten Free" is safe for you. Do not take for granted that mom understands she can't use her cutting board to prepare your food. Take responsibility for your own safety.

Eating out: Is it worth the risk?

When I was first diagnosed with non-celiac gluten sensitivity I thought I was going to avoid restaurants for a while until I learned the proper questions to ask.

The Macaroni Grill experience I wrote about in my last post is a reminder that asking the right questions and properly researching the menu and ingredients before ordering are the only things you have control over in a restaurant situation. And, realistically, they don't amount to much. Placing your order will always involve a leap of faith.

Here is a thought I find disturbing: Eating out involves placing your well-being in the hands of those who do not have to experience the consequences of serving you an unsafe meal.

No matter how comfortable you feel after discussing the situation with your server, you will literally eat the output of a chain of events involving many variables and at least several people.

How reasonable is it to expect an entire random kitchen to be properly trained? Or for each staff person to exercise the vigilance required to keep you safe?

You have no control over what takes place between placing your order and receiving your food.

Is it worth the risk?

First gluten free restaurant experiences

During my trip to FL I had no choice but to eat out. GlutenFreeRegistry.com turned out to be an invaluable resource for locating restaurants and gluten free menus. Ironically, I didn't get sick at all in FL, but became ill dining out for the first time after returning to PA.

Woody's Bar-B-Q

Meat, meat and more meat. It's hard to go wrong with meat. There are several gluten free sides to complement your plate of meat.

Outback Steakhouse

I was impressed with the staff at Outback. They had a physical gluten free menu and asked me a lot of questions to make sure they were preparing the food properly. I was not expecting that level of service.

IHOP

The server seemed to have a working knowledge of gluten free and talked with the chefs about my omelet. It was stuck with a colored toothpick to prevent it from being cross-contaminated in the kitchen or while being served.

Chili's

The server printed out a gluten free menu for me upon arrival and the manager came to the table to check in with me. Good salad. No problems here.

Macaroni Grill

Back in PA, I had a salad at the Macaroni Grill. They had a physical gluten free menu. The server seemed very conscientious, asking clarifying questions as to whether I was merely eating gluten free or if I had issues with gluten.

I've since read that some restaurants will not go the extra mile to prevent cross-contamination unless you specifically state that you have gluten issues -- even if you are ordering from the gluten free menu.

I made it clear that I had gluten sensitivity and ordered a Market Chop Salad. Everything else I ate that day . . . mainly yogurt . . . came out of my own kitchen and was prepared by my own hands.

Later that night I developed a persistent headache and my stomach did not feel right. The following day I was hit with the fatigue and nausea that had been a daily part of my life until I went gluten free in the last week of June. It took two and a half days to get back to normal.

Amtrak Auto Train -- gluten free salmon dinner?

With newly diagnosed non-celiac gluten sensitivity, I had a project in Florida that required traveling via Amtrak's Auto Train. In researching the food situation beforehand, my conclusion was that Amtrak had no accommodations for gluten free travelers. Presumably, this is because the meals are pre-packaged in advance and the on-board staff is basically heating and serving.

I did not communicate with Amtrak directly, but for those who would like to, here is the Amtrak Culinary Advisory Team. Amtrak's food supplier is Aramark.

In preparation for the trip, my colleague and I loaded up on gluten free snacks. It's a 17 hour journey from Lorton, VA to Sanford, FL. The snacks came in handy; however, I ate the train's food and did not get sick.

Specifically, one of the Auto Train's dinner options is Salmon. Salmon is one of those rare food items that consistently feels OK in my stomach, so I decided to take a chance with it. I ordered the meal with the intention of not eating it if anything on the plate seemed suspect. The salmon was served with a wild rice mixture and green beans. Theoretically, all of those foods should be safe. I ate the meal.

One of the dessert options is a no-flour chocolate tort. Again, I decided to take a chance with it and did not get sick.

Because I had not experienced any ill effects with the salmon, I had the same meal on the return trip from Florida. The salmon on the way down was somewhat dried out . . . better than an airplane meal but not restaurant quality. On the return trip, the salmon was prepared perfectly. My colleague had the same experience with the steak meal. The quality of the food was good and the portions were large enough to be filling.

Buyer beware . . . I have not yet figured out how sensitive I am to gluten, so I thought that eating the salmon meal on the train was an acceptable risk -- possible cross-contamination being the only unknown variable. It worked for me. For others with Celiac disease or gluten sensitivity it might be worth contacting Amtrak directly in order to make an informed decision.

Thoughts about diet

So far, the meds and gluten free diet have been contributing to a rapid restoration of my health and energy. In addition to researching the specific dietary requirements of my health issues I've been learning a lot about food in general. It's a fascinating topic.

Given the fact that our diet literally makes us who we are, it is odd that so little attention is given to it by the average person. Until I began researching diet and learning about food preparation, I was completely ignorant about a critically important part of my own existence. It took my health issues to awaken me to this reality.

Fortunately, it's easy to find information online about the proper diet for those with specific medical conditions. However, the process of finding the right combination of food inputs gets complicated very quickly when you are dealing with multiple health issues, each involving their own dietary guidelines and restrictions.

In addition to my recently diagnosed ulcerative colitis and non celiac gluten sensitivity, I also have hypothyroidism and PK deficient anemia. Each of these conditions has its own dietary "best practices", requiring a delicate balance of food inputs. Designing that balance will be an ongoing process.

My diagnosis

After many tests, an endoscopy and a colonoscopy, I've been diagnosed with ulcerative colitis and non celiac gluten sensitivity. Having a correct diagnosis is important to me for reasons I've stated in my previous post. Now I can undertake the healing process with full knowledge of what I'm dealing with.

Why a correct diagnosis matters to me

In my research about Celiac disease I've encountered some debate about the value of getting a diagnosis. Some people advocate trying a gluten free diet and not pursuing a diagnosis if the diet "works". Here are some reasons why this is bad advice.

Need to rule out the Placebo effect

First, there are reasons why going gluten free might create the illusion of resolving your problems, when in reality nothing has changed. When your life contracts into a miserable constellation of health issues, there is a lot of internal motivation to find a way to make it stop. Sooner or later you may try a gluten free diet. It seems reasonable that if your symptoms clear up, you must have gluten issues. Case closed. Nevertheless, correlation does not equal causation. The placebo effect is a very real and powerful phenomenon. Celiac disease is diagnosed through blood work, biopsy and genetic testing; not through simple observation.

Need for differential diagnosis

Celiac disease is a systemic condition that can express itself with many possible symptoms -- symptoms that are shared with many other diseases and systemic health conditions. So while Celiac might be a possible diagnosis, so might Crohn's, Colitis, AIDS, Cancer or a host of other problems. It is important to know exactly what the problem is.

Celiac is arguably the best case scenario out of any number of possibilities because it is treatable solely through diet. It would be tragic to assume you have Celiac and go on with your life without realizing that you have a far worse condition left untreated.

In my own case, I was convinced that I had Addison's Disease until the blood work ruled that out. I am still waiting on a positive or negative Celiac diagnosis.

Finding my place on the spectrum of gluten disorders

Symptoms are shared between Celiac disease, gluten sensitivity and wheat allergies. If you are on the spectrum, it would be helpful to know whether or not you have an autoimmune condition.

Celiac is hereditary

If you have Celiac then your immediate family members are also likely candidates. It's important to know what you are dealing with, especially if you have kids.

Conclusion

Judging from posts on various Celiac forums, resistance to getting a diagnosis often seems to stem from distrust of the medical community, fear of the endoscopy procedure or simple denial that one's health issues need to be addressed.

It's true that getting diagnosed may involve some unpleasant experiences. The risks of not pursuing a diagnosis seem far worse.

I want to know.

Don't go gluten free if a diagnosis matters to you

If you suspect you have Celiac disease and a proper diagnosis is important to you, then it is important to keep eating gluten. This may seem counter-intuitive at first, but the reason is simple: going gluten free will interfere with your test results. Talk to your doctor and get tested before going gluten free.

Currently there are two ways to test positive for Celiac. Your blood can be tested for the presence of the relevant antibodies or your small intestine can be biopsied to directly observe damage to your villi. Often both methods are used together in order to confirm a diagnosis.

The problem with going gluten free before you have been tested for Celiac is that your body will begin to heal. The antibodies in your blood will diminish or disappear, depending upon how long you have been gluten free. Your villi will begin to heal almost immediately. While this will provide you with relief from the symptoms of Celiac, it will make it harder to receive a correct diagnosis. The reliability of the tests will diminish in proportion to the length of time you have been eating gluten free.

If you have been eating gluten free and you want a diagnosis, you will need to go back on gluten for a period of time. This could be several weeks to several months, depending on how long you have been off gluten. Going back on gluten is called a "gluten challenge". You are re-introducing gluten into your body to see what happens. In order to get a positive diagnosis you need will need to "un-heal".

Many people who have undiagnosed Celiac and have been eating gluten free are simply not willing to conduct a gluten challenge. In many cases, the longer you have been gluten free, the more difficult it is for your body to handle it. For many people gluten intolerance increases after being gluten free. This means that the symptoms will be much worse. And for those who have been off gluten for several weeks or months, the idea of going back on gluten for several weeks or months in order to get a proper diagnosis is inconceivable.

This is why it is better to keep eating gluten if you suspect you have Celiac. It will give you the best chance for a correct diagnosis. Eating gluten means you will not have to delay testing or conduct a gluten challenge. It will let you begin the healing process sooner. See your doctor, get tested and scoped. Then you will know. Then you can stop eating gluten permanently.

Note: False positives and false negatives exist. Genetic testing can help to clarify your situation if blood work and biopsies do not result in a clear diagnosis. Genetic testing can tell you if you have the mutations necessary for Celiac to develop, but it will not tell you if you actually have Celiac.

Suspecting Celiac disease

Background

Despite having some serious medical problems in my infancy, I never needed to pay too much attention to my overall physical health. I never had to watch what I eat or spend much time monitoring my overall fitness. I was happy to spend most of my time in the realm of thoughts and ideas, focusing on my work and letting my body regulate itself.

Almost a year ago I started to develop a constellation of symptoms that -- fast-forward to today -- have become the main focus of my life. Apart from the time-devouring reality of living with these symptoms, I've spent countless hours researching and investigating possible explanations for what is happening to me.

Current status of diagnosis

Things seem to point to Celiac disease and I am currently undergoing a gluten challenge of several weeks leading up to testing via blood work and biopsy.