Explaining  Gluten Free: Celiac Disease to Fad Diet

Kiah Connolly, MD
     
Kiah Connolly, MD

Ah, the illusive gluten. Is it a carb, is it a grain? 

Honestly, what is gluten? 

And is it something you should be avoiding?

With the explosion of gluten free options hitting the market, it feels like everyone is on a gluten-free diet, or at least maybe they should be? There’s a lot of buzz about this ingredient. Some is credible while other resources are questionable at best and it’s hard to know what to trust. 

As a practicing Emergency Medicine Physician I can assure you that doctors don’t know everything (big surprise)! But I do believe it’s my responsibility to provide people with accurate information, and caution against trusting any source that does claim cures or to know it all.

What you eat is your decision! But before you make choices about something as important as what you put in your body, you deserve to know all the facts,  including what the current research shows, what’s still unknown, and false information. 

What is Gluten?  

 

what is gluten dog begging for food

Although commonly referred to as a grain, gluten is actually a unique substance found in specific grains - primarily wheat, rye and barley - as well as certain food additives. It’s composed of two proteins: gliadin and glutenin.

The word gluten literally translates in latin to “glue” -  which is a great description of how gluten works in food and why it is such a desirable ingredient in some processed foods. The classic example of this is dough - glutenin contributes to the chewy sensation of dough and gliadin helps it rise. 

Gluten Allergy

Some people are allergic to these proteins. If you do have an allergy or intolerance to gluten it can definitely be bad for your health. The most common form of this allergy is Celiac Disease. If someone has Celiac Disease and eats food with gluten, it can damage their intestines, which may lead to serious malnutrition and skin conditions.  

gluten allergy

Some people also have concerns that gluten may be related to a variety of other health conditions, including autism. While there isn’t any evidence to date that shows gluten causes these conditions, we also cannot yet say for sure that it doesn’t play any role.  Therefore, many people chose to try going gluten-free to see if it helps them feel better.

If you’re like many people that are choosing to try going gluten-free, more power to you!  But it’s important that you also make sure you’re not missing out on important nutrients in the process.

Exactly What is Gluten-Free & How to Avoid Gluten

In the strictest sense a gluten-free diet means not eating any products containing a significant amount of gluten. ‘Significant amount’ is stated because many products are often processed with other foods that do contain gluten - and this can lead to the contamination of otherwise gluten-free foods.

Facilities marketing gluten-free products often address this contamination issue by guaranteeing a certain threshold of gluten contamination by the term “parts per million” (ppm). This “ppm” is really just a fancy way of quantifying how much gluten (however tiny) may be allowed in a food product for it to still be considered gluten-free.

gluten free certifications

The Federal Drug Administration (FDA) requires products that are labeled as “gluten-free” to contain less than 20 ppm gluten. So where did they get this number?! The FDA came up with 20 ppm because there is scientific literature that supports this as a safe amount of gluten for even highly allergic individuals to consume. It's also so difficult to detect anything less than 20 ppm that the FDA did not feel reporting levels lower than this would be reliably accurate.

Of course some foods that are produced in an allergy friendly facility or have never come into contact with any gluten residue can contain zero ppm. These foods aren’t always labeled because they are naturally gluten free and include many fruits, vegetables, and proteins.

Is Gluten Good For You?

Many foods that contain gluten can absolutely be good for you! In fact, if you don’t have an allergy to gluten, it’s not recommended that you avoid it in your diet. Research continues to show that gluten filled whole grains have many health benefits including reducing the risk of heart disease, diabetes, obesity,  and even some cancers (1,2,3,4,5,6,7).

Higher whole grain consumption has even been associated with a decreased risk of total mortality (8). These healthy grains are also loaded with important nutrients and may have antioxidant properties to help support the immune system in individuals not allergic to gluten (9,10,11).

It’s probably not the gluten per se that provides the health boost we know about from these whole grain foods. Some research does suggest that cutting out gluten when it’s not medically necessary might negatively affect your gut health (12). However, this is certainly not enough to show that gluten in of itself provides you with any benefit - and much more research would be needed to make any such conclusions. 

pexels-photo-263168

 

So are all gluten foods good for you? Definitely not.

Although many whole grain superfoods include gluten, it can also be found in many heavily processed less healthy foods - such as high sugar deserts and refined grains. Eliminating these unhealthy gluten options may be why many people may report feeling better off of gluten, even if they don’t have a gluten allergy.

Looking for a healthy diet and don’t have a gluten allergy? Try starting with a balanced approach that includes lean proteins, heart healthy fats, fruits, vegetables, and whole grains while minimizing refined carbohydrates and sugar. These modifications alone can make a world of difference in getting you to just 'feel better' while still maintaining the health benefits whole grains offer.

Bottom line: you can consume a healthy and balanced diet with or without gluten. What’s important is that you get all the necessary nutrients in a personalized diet that feels right for you. 

Healthy Eating in Gluten Free Diets

Although popular diet trends may have you thinking otherwise, a gluten-free diet is not designed to improve your health (unless of course you are allergic to gluten). Nor does it promote weight loss.

Healthy eating without gluten is just like healthy eating on any diet. You still need to follow the dieting basics by choosing a variety of nutrient dense foods and eating the right amount for your individual needs.

Brown rice in bowl with package_white background-1

The most difficult part of getting good nutrition without gluten is often continuing to consume a balanced diet that includes all of the required nutrients while finding options that are safe and certified gluten-free, especially when dining out.

Are There Any Health Disadvantages of a Gluten-Free Diet?

There have been some studies linking gluten-free diets to an increased risk of health problems, such as type 2 diabetes and heart disease (13, 14). This could be due to a decreased intake of heart healthy grains. It also may be because eating healthy well balanced food can just be more difficult gluten-free ... that is, if you aren’t equipped with the right information.  It’s so important to realize that gluten-free and nutritious do not always go hand in hand.

 Just because something is free from gluten does not make it good for you.

With the emergence of the gluten-free fad there is a tremendous amount of publicity and financial incentives for products to advertise and equate gluten-free  to healthy. This absolutely isn’t true!

For example: french fries, potato chips, sugar filled treats, and many foods with high saturated fats may all be naturally 'gluten-free'. However, these are clearly not healthy options. So don’t be fooled by the massive marketing ploys by the food industry to get you to think otherwise. Always read labels and look at the nutritional content of what you consume.

food-salad-restaurant-person eating out gluten free

If your intent is to be both healthy and gluten-free, make sure you’re checking the nutrient facts. Always read the ingredients to look at added sugar, saturated fats, calorie content and the serving sizes of products your perusing along the isle.

Getting Good Nutrition Without Gluten

You don’t have to be a nutritionist to create your own great gluten free diet. But you do need to know a few basics to make sure you’re not missing out on important nutrients.

As mentioned above, eating unrefined whole grains has time and time again been shown to have massive positive benefits. But just because you’re cutting out the protein in wheat doesn’t mean you have to leave behind the powerhouse of health gains whole grains have to offer. Instead of wheat, barley and rye you can choose to include alternative gluten free whole grains as a regular part of your diet - such as quinoa, brown rice, corn, millet, buckwheat and oats.

gluten free diet

And what about all of these other nutrients you keep hearing about? Well, to help us meet all of our nutrient needs, various common food products are infused with vitamins and minerals that can be otherwise easily missed from our diet. The term “fortified” is used to describe adding these nutrients to food products. Many gluten containing whole wheats were chosen to be fortified with these vitamins and minerals, which is one of the reasons why nutrient deficiencies can occur on a gluten free diet.

Important nutrients that are frequently low in a gluten free diet include calcium, fiber, iron, vitamin D and various B vitamins. The good news is that you can still get all of these nutrients gluten free - you just have to know where to find them. Vitamin supplements can also be helpful. 

Common Nutrient Deficiencies in Gluten-Free Diets & How to Avoid Them

Nutrient Deficiency Gluten Free Source
Calcium
  • Osteopenia*
  • Dairy
  • Orange Juice (Fortified)
  • Tofu
  • Salmon
Vitamin D
  • Osteopenia/Rickets*
  • Sunshine
  • Fish
  • Eggs
  • Orange Juice
  • Dairy (Fortified)
Iron
  • Anemia*
  • Fatigue
  • Restless Legs
  • Skin Changes
  • Generalized Weakness
  • Meat
  • Spinach
  • Kale
  • Fish
  • Dried Fruit
Fiber
  • Constipation
  • Beans
  • Leafy
  • Greens
  • Brown Rice
  • Sweet Potatoes

Vitamin B1

(Thiamine)

  • Fatigue
  • Irritability
  • Generalized Weakness
  • Gluten Free Soybeans
  • Gluten Free Legumes
  • Macadamia Nuts
  • Asparagus

Vitamin B2

(Riboflavin)

  • Anemia
  • Rash
  • Glossitis*
  • Eggs
  • Green Vegetables
  • Mushrooms
  • Almonds
  • Dairy

Vitamin B3

(Niacin)

  • Fatigue
  • Irritability
  • Pellagra
  • Meat
  • Fish
  • Potatoes
  • Sunflower Seeds
  • Mushrooms
Vitamin B6 (Pyridoxine)
  • Rash
  • Swollen Tongue
  • Cracked Lips
  • Fatigue
  • Decreased Energy
  • Irritability
  • Anemia*
  • Garbanzo Beans
  • Bananas
  • Poultry
  • Fish
  • Potatoes
  • Pistachios
Vitamin B12
  • Anemia*
  • Fatigue
  • Glossitis
  • Sensation Changes
  • Mood Changes
  • Meat
  • Fish
  • Dairy

 *Osteopenia / Rickets = Weak Bones; Anemia = Low Hemoglobin Blood Count, Glossitis = Enlarged Tongue

But remember it’s all about getting the right amounts of what you need; there is such a thing as too many vitamins! Vitamin toxicity can occur when taking too many of these supplements and are also bad for your health. So always take vitamin supplements only as directed.

Celiac Disease 101

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What is Celiac Disease? 

In fancy science terms, Celiac Disease can be summarized as an autoimmune condition that occurs when genetically susceptible individuals are exposed to gluten. You may also hear it referred to as 'Celiac Sprue' or 'Gluten-Sensitive Enteropathy'. 

But what does this mean?

The immune system can be thought of as your body’s military that among other roles helps to fight off infections. And this defense system is usually a good thing!

lemons imunne system

 

However in Celiac Disease, gluten causes this strong military force to get confused and convinces it to start attacking part of its own unit. While the immune system normally works to protect the body, gluten causes the immune system to think that parts of it’s own body are the enemy. This sets off a cascade of destruction to the body. While this is the basis of how all autoimmune disorders work, the intestines are the main target of destruction in people with Celiac Disease.

 So what happens now? The intestine is in charge of taking nutrients out of the food we eat into the rest of our body. Specifically there are many parts within the small intestine called ‘villi’ that help these nutrients to be absorbed. When these villi and other parts of the intestine are damaged, it becomes harder and harder for them to take in these nutrients. This places people with Celiac Disease at risk of developing various nutrient deficiencies. 

How Common is Celiac Disease?

Celiac Disease probably affects about 1% of the population. The exact prevalence is not known and it varies some between different regions  between 0.7% and 2% . This variability can be largely blamed on the fact that diagnosing Celiac Disease can be both challenging and involve invasive procedures. This means that it can be difficult to tell exactly how many people are affected in very large populations and it may be under-diagnosed in some regions (15, 16).

Celiac Disease Symptoms

Symptoms experienced by people with Celiac Disease can be varied. This has led to the creation of different subgroups within the diagnosis in an attempt to better categorize individuals under the umbrella term of Celiac Disease (17). 

These classifications include Classic Celiac Disease, Atypical Celiac Disease, Asymptomatic or Silent Celiac Disease, and Latent Celiac Disease.

It makes sense that the symptoms people with Celiac Disease suffer from are primarily related to the intestines, as it is the main organ targeted in this autoimmune disorder. While abdominal pain and diarrhea can be present, many other disruptions are caused by the inability to absorb vitamins and other nutrients.

celiac disease symptoms doctor

A variety of presentations include:  

  • Stunted growth (children)
  • Diarrhea filled with fat (called steatorrhea)
  • Weight loss
  • Weaker bones (osteopenia)
  • Fatigue
  • Abdominal Pain
  • Low blood counts of hemoglobin (anemia)

 

Classic Celiac Disease

In Classic Celiac Disease patients typically have these signs of nutrient deficiencies, weight loss, and damage to their intestine. Their symptoms resolve with removing gluten from their diet.

But not everyone falls into this textbook definition. People are complicated!

Atypical Celiac Disease

Atypical Celiac Disease includes those that often only have minor symptoms that can seem non-specific at first. For example, you may be surprised to find that someone’s unexplained anemia may be due to Atypical Celiac Disease - even though they are a normal weight without any abdominal pain or diarrhea.

They also may have mild symptoms that vary in severity and timing. However, with further evaluation, these individuals demonstrate the same signs of intestine damage and have the same blood markers as people with Classic Celiac Disease. Also, like people with Classic Celiac Disease, their symptoms and intestine damage improve with the elimination of gluten.

Silent Celiac Disease 

silent celiac disease

In Silent Celiac Disease, people don’t have symptoms - or at least they don’t seem to be aware of them. Yet they still have similar intestine damage that resolves when removing gluten from their diet. These individuals are often diagnosed  when doctors working them up for unrelated problems unexpectedly find patterns consistent with Celiac Disease

Latent Celiac Disease

Latent Celiac Disease may provide some hope for people who just love gluten. One study found that as many as 20% of children diagnosed with Celiac Disease are later able to reintegrate gluten back into their diet without any problems (18)!

Unfortunately, this seems to be rare as the majority of people continue to suffer from this allergy throughout their entire lives. Regardless, it may be worth discussing with your doctor the possibility of giving it another try at  some point if your heart is set on all of the grains.

Celiac Disease Treatment

celiac disease treatment

The Celiac Disease Diet

Once the diagnosis is made the treatment sounds simple: just change your diet. Intestinal damage often resolves within a few months after appropriate diet modifications. However, despite the flood of gluten free food marketing, it can still be difficult to make sure you’re getting all the nutrients you need. Meal delivery services like Trifecta can help people who want a simpler option of ensuring a healthy balanced gluten free diet.

Celiac Disease Diagnosis

celiac diagnose symptoms

It's important to know that you need to be actively eating gluten for doctors to accurately diagnose an allergy to it. Diagnosing Celiac Disease can be tricky and can involve a variety of tests - some of which are invasive.  Many people start with a blood test. If the suspicion for Celiac Disease is still high, doctors may take a piece of of your intestine called a bowel biopsy. Most of the time this enough to diagnose Celiac Disease. But like so many things in life -  it can get complicated!

 

Celiac Disease Test

Remember, Celiac Disease is an autoimmune disorder that occurs when parts of the immune system begin attacking parts of their own body. In order to diagnose autoimmune disorders, we can look for parts of this immune system called antibodies that are targeted against components of our own body. This is kind of like a roag soldier who turned on his own military.

celiac disease diagnosis blodd test

This allows us to differentiate people with the disease because a normal immune system would never attack itself. The most frequent blood test used looks for the something called IgA antibodies. Unfortunately this test isn’t always perfect. So if Celiac Disease is still suspected despite a negative test, there are other parts of the immune system that can be evaluated.

While these blood tests are often positive in people with Celiac Disease, they can also still be negative if you've been following a strict gluten free diet. So what if your doctors suspicion is strong but the tests are negative? People are often asked to start eating gluten again for a period of time and then have these tests repeated.

The other common diagnostic tool is a small bowel biopsy. This involves a doctor using a small camera to look down your throat into your small intestines and take a small piece (usually in the duodenum).

celiac disease tesmall bowel biopsy

This tiny piece  can then be carefully examined for signs of Celiac Disease. Some of the things they look for are IgA deposits (parts of the immune system behaving badly) in the small intestine. Small intestine villi are also often destroyed. Sometimes a video capsule can be used to look closer at parts of the intestine that are too far for a traditional endoscopy to reach. And yes, this is exactly how it sounds. A tiny video camera is swallowed and as it passes through your body it shows your doctor what your intestines look like.

Is this a perfect test? Unfortunately still no. While a closer look at the small bowel can provide a tremendous amount of information and greatly aids in the diagnosis of Celiac Disease, it is possible (although rare) to have Celiac Disease without these typical findings.

To complicate things further, it is also possible for damaged intestines to look like they’re hurt by Celiac Disease but the destruction may instead be due to other diseases such as Crohns Disease, malnutrition, and a variety of other autoimmune conditions.

This is why it can be so important for doctors to have many different pieces of information in order to solve this puzzle.

Is Celiac Disease Genetic

is celiac disease genetic

 Another way to test for Celiac Disease is to look at your DNA! 

In confusing cases, the answer may lay in our genes. A part of our genetic code that is called HLA DQ2/DQ8 has been strongly associated with Celiac Disease (19). If this is negative, then we can generally assume that a person does not have Celiac Disease.

As you can see, the diagnosis is complex! A combination of blood tests, small bowel biopsy, symptom presentation, and genetic testing all may be utilized to determine whether or not and individual has Celiac Disease.

What is Gluten Intolerance and Do You Have It?

Outside of a diagnosed allergy to gluten, it is also argued that one could be intolerant of it. This is also known as Nonceliac Gluten Sensitivity (20).

But what exactly determines gluten intolerance? What are the symptoms and how is it even diagnosed?   

Gluten Intolerance Symptoms

It’s pretty much just like it sounds. Gluten Intolerance (aka Nonceliac Gluten Sensitivity) is the term some people use to describe individuals who test negative for Celiac Disease but still feel badly when they eat gluten. These symptoms can vary and may include any of the same challenges that people with Celiac Disease face including bloating, nausea, vomiting, diarrhea, weight loss, fatigue, muscle aches and others.

What Evidence Supports the Diagnosis of Gluten Intolerance?

evidence science based celiac disease

Some studies have suggested that patients without diagnostic markers of Celiac Disease may still suffer from some of the symptoms of Celiac Disease. Furthermore, many people who decide to live gluten free report anecdotally “feeling better” off gluten.

While this is certainly not evidence for going gluten free, it’s intriguing to think that there may something that some people like about eliminating gluten from their diet. However researches haven’t yet been able to determine details about what that thing is. 

What Evidence Is Against the Diagnosis of Gluten Intolerance?

The argument for creating a diagnosis of gluten intolerance is based on the premise that unpleasant symptoms are experienced when gluten is ingested and these symptoms are relieved when gluten is removed from the diet.

However a recent systematic review and meta-analysis found that the symptoms experienced by people with gluten intolerance are often not relieved when they stop eating gluten. Studies have also questioned if the discomfort people feel are related to the ingestion of gluten. Furthermore, research to date hasn’t found a physical marker to identify those with gluten intolerance. This means we aren’t finding anything tangible that shows gluten is causing the symptoms described by individuals with Nonceliac Gluten Sensitivity (21, 22). 

celiac disgnosis confusion

 

So do we even have the right diagnosis?

These findings present concerns that we may not be correctly diagnosing or treating patients with the diagnosis of gluten intolerance. And we can’t be sure that gluten is even the cause of the discomfort they experience.

One theory is that this group of people may have a form of Irritable Bowel Syndrome (IBS) with sensitivity to a specific group of carbohydrates found in a number of foods. In particular these are fructans, galactans, polyols, fructose, and lactose - also commonly referred to as FODMAPs.  

One well performed double blind study that supports this theory found that there was significant improvement in symptoms when individuals with Nonceliac Gluten Sensitivity ate low FODMAP’s. What’s more, the study showed that same subjects weren’t affected by gluten.  By utilizing a form of “fake gluten” (placebo), these researches found that there was not any difference in the symptoms of participants who ate real gluten compared to those that ate fake gluten (23).

This study suggests that these individuals may not be allergic to gluten, but may instead have an allergy to something else, like FODMAPs.

All of these factors combined  makes the diagnosis of gluten intolerance somewhat hazy. More research is definitely needed to better identify what is causing many of these individuals to experience their symptoms and how to more effectively treat them.

The Mysterious Celiac Disease Rash

Another way that gluten allergy can present itself is in the  form of a skin rash called Dermatitis Herpetiformis. And yes,the name does sound kind of like herpes. But don’t worry…it’s not. Nor is it contagious!  But it can cause quite a bit of discomfort for individuals that have it. And thankfully, getting off gluten can completely resolve their symptoms.

What is Dermatitis Herpetiformis?

Simply put, Dermatitis Herpetiformis is an uncomfortably itchy rash. Very much like Celiac Disease, Dermatitis Herpetiformis is caused by an autoimmune reaction to gluten.

The rash looks like small red bumps that are often found on the arms, legs, head, back and/or buttocks. These bumps are called “papules” and “vesicles” and they often occur in clusters.

And oh yea – did I mention that they really itch?   

Dermatitis Herpetiformis

Because Dermatitis Herpetiformis (DH) is caused by gluten sensitivity, most people with DH also have Celiac’s Disease, and therefore not surprisingly, gastrointestinal symptoms are very common in this population as well.

Thankfully, DH is not very common. It only occurs in about 0.4 to 3.5 per 100,000 people per year (that’s only 0.000004%). Males seem to be more commonly affected than females and it seems to be more often found in middle age people.   

Dermatitis Herpetiformis almost always occurs in people with Celiac Disease, and with more people being diagnosed and treated for Celiac Disease, the incidence of this skin rash is continuing to decrease even further.

Bottom Line: because this condition is so rare,  most itchy rashes are NOT Dermatitis Herpetiformis.

There are A LOT of conditions out there that cause red, itchy skin besides DH. In fact, there are so many causes of skin irritation and conditions,  that we have doctors that go through years of training to specialize in JUST SKIN - which you might know as a Dermatologist. So if you have something questionable on your skin, make sure that you are seeing a doctor to determine the cause.

Dermatitis Herpetiformis Treatment

Dermatitis Herpetiformis treatment skin rash

To treat DH effectively all you need to do is get rid of the gluten in your diet. This almost always results in long term resolution of symptoms. The bad news is that changing up your diet alone doesn't always  give the fast relief most people are looking for. Luckily, there is medication that can help the rash resolve more quickly. However, this medication can of course have negative side effects – which is why it’s very important to have a confirmed diagnosis by your doctor before getting involved with any formal treatment.

Dermatitis Herpetiformis Diagnosis

diagnose celiac rash

If your doctor suspects that you have Dermatitis Herpetiformis they may perform blood tests, similar to the diagnosis of celiac disease. This tests for an immune component called IgA tissue transglutaminase antibodies and IgA endomysial antibodies.

They may also take a small piece of your skin to be carefully analyzed through a Skin Biopsy. But don’t worry this procedure is very safe and fairly pain free.

About 4 millimeters of skin is needed and taken through what’s called a 'punch biopsy'. If the analysis shows certain components  including immune system components such as IgA deposits and neutrophils, it is very likely that the rash is caused by Dermatitis Herpetiformis. This analysis can be performed using a few different techniques including something called Direct Immunofluorescence Microscopy. This is a fancy way of using fluorescent dyes that are able to target just the immune parts they’re looking for.

 

So basically: if things light up and glow in the right places the diagnosis is made. This always reminds me a little bit of a 70’s blacklight party.

Gluten Free Diet For Autism

Some people think a gluten free diet may help conditions that haven’t involved a diagnosed allergy. A good example of this is autism.

 Autism is a neurodevelopmental disorder characterized by repetitive behavior, impaired communication, and impaired social interactions. We still don’t know what causes autism and while some medicines can help some of the associated symptoms of autism in some people, there isn’t any proven cure for the core symptoms.

What’s gluten got to do with it? Probably not much.

While there is a lot of talk in various communities about gluten being part (or all) of the cause of autism, there hasn’t been any good evidence to support this. There have not been any higher rates of Celiac Disease identified in children diagnosed with autism. In the limited and small studies that have been performed there wasn’t found to be any difference in children who were on gluten free diets compared to the children who were on diets that included gluten (24, 25) .  

gluten free diet for autism kid eating fruit

Why not go gluten free just in case? Well, you can. However this can have negative consequences for your child without providing any known benefit.  Proper nutrition is critical for a child’s development and unless carefully managed can be bad for their health. Getting rid of gluten requires a child to eat a restrictive diet that can eliminate many common foods providing them with critical nutrients (including vitamins, amino acids and proteins!) (26).

Therefore, it is generally recommended to not have children go gluten free unless they have a  diagnosis of Celiac Disease or are working closely with a dietitian to ensure they are meeting their nutritional needs.

Best Gluten Free Meal Plan

gluten free meal delivery

Balancing a healthy diet while living gluten free can be a challenge for some - especially if your diet requires strict elimination of all things gluten. Luckily there's a number of gluten free meal delivery companies offering a wide variety of gluten free meal plans. In fact, all of the meal plans at Trifecta are gluten free. So whether you are vegan, paleo, or just looking to eat clean, there's a meal plan option for you that is safe and delicious. And even better, all the food is organic and comes already made - no cooking needed!

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