A little while back I was finding myself really frustrated. I was consistently not feeling well. Not in a 'I just got gluten by accident' kind of way, but in a general, all over 'I never actually feel great' kind of way. This general feeling of not being 100% is pretty common for someone with celiac disease. One of the most irritating things I hear from people is, "well you must be totally fine as long as you don't get gluten right?". NO! People with celiac disease are not fine all the time as long as they don't accidentally get gluten. Celiac disease is a CHRONIC disease — that means there is no cure, and it has potential to cause chronic problems.

While not eating gluten will stop the mass destruction of your body, there are a ton of other factors at play. For starters, the body is usually in a constant state of inflammation (even getting gluten by accident a few times per year can cause this). Every time someone with celiac disease accidentally ingests gluten, they are adding fuel to that inflammation fire in their body. Even though they may feel better after a few weeks, there is a systemic autoimmune reaction happening in the body. People with celiac disease are also prone to other autoimmune conditions like Thyroid Disease or Multiple Sclerosis. So no, being a celiac is not as simple as not eating gluten.

Back to my original point though — Lately I have not been feeling great, and it was really starting to frustrate me. I have spent the last ten years of my life not 'feeling great' and to be honest it is really starting to piss me off. So following a vacation I recently took, (on which I ate a ton of rice, corn and gluten free bread) I decided to give my body a break from all grains. For the last three weeks have stuck to a diet of organic lean protein, fruits, vegetables and nuts — and I feel about 90% better than I was. Even though all the grains in my diet were gluten free, they were clearly bothering me. Here is the interesting part, I found out WHY they were bothering me: Lectins.

Lectins are a type of protein that can bind to cell membranes. They are sugar-binding and become the “glyco” portion of glycoconjugates on the membranes. Lectins offer a way for molecules to stick together without getting the immune system involved, which can influence cell-cell interaction. Sounds familiar right? A protein that offers a sticky base for molecules to stay together? I spoke with my naturalpathic doctor about this, and he let me know this:

Lectins are specialized proteins commonly found in fruits, vegetables, sea food, grains beans and seeds. They are highly resistant to digestion and are able to attach to cells in the gut and blood cells. Certain food lectins may trigger inflammatory responses and contribute to food sensitivities, cravings, digestive disorders, weight gain and post meal fatigue. Different people have different sensitivities to various lectins (some people may react to corn, while others find rice makes them feel ill). Sometimes you can tell when a particular food has disagreed with you and avoid it, while other foods may have been slowly eroding your health without you noticing it because you have become used to the low-grade inflammation in the GI tracts.

This actually makes perfect sense for those of us with celiac disease. We are so used to the tidal wave reactions we get from eating gluten, that we may not notice the slow and much quieter reactions we get to eating other foods that bother us. Since I have cut out all grains (corn and rice were the two big ones I was eating on a regular basis), I have felt so much better. I have slowly reintroduced gluten free oats, and those seem to agree with me just fine. But each person is different — and if your lucky, then you may not have any lectin allergies at all.

For any celiac who is still not feeling great I suggest looking into this issue more, and seeing if grain elimination is a good fit for you. Again, each person is different, and this is a decision I made for me — you have to make your own dietary decisions. My hope is that this information helps some of you who may be experiencing the same issues I was having! I will admit I had a brief moment where I thought, 'are you f%^*$# kidding me? There is more I can't eat? But after three weeks of no grains, I feel so much better it doesn't even matter. The goal is to be healthy, and that is what makes me happy, not eating a piece of bread. Just some grain-free food for thought!

— The Healthy Celiac

There is literally nothing worse for a person with celiac disease than realizing that they just accidentally ate gluten. Usually it takes a period of weeks to even start to feel better. This should help give people a better idea of how it REALLY feels ....

First you experience a mix of shock and fear over the fact that you just accidentally poisoned your body.

Then that feeling of shock is replaced by blind rage at whoever or whatever caused gluten to end up in your mouth

Around this time, you start to feel the first wave of physical effects of the gluten which can be anything from overwhelming nausea to gas to general digestive upset.

Once the general feeling of digestive death starts to subside, you go into a dark, dark place because you know how hard the next few weeks are going to be.

Those weeks can consist of brain fog, exhaustion, joint pain, skin rashes, hair loss and whatever other miserable symptoms this disease causes for you (each celiac tends to have their own set of symptoms).

Next you attempt to function in day-to-day life without complaining by pretending you feel healthy.

.... but eventually you probably have a break down because you are so sick of being sick.

A few weeks later you start to feel better, and it feels like a miracle

And then someone says something to you like "I heard gluten intolerance isn't a real thing"

Stay strong fellow celiacs!

— The Healthy Celiac

I'm not going to go so far as to say I feel the need to celebrate the fact that I have celiac disease, but in honor of May being Celiac Disease Awareness Month, I think it is worth looking at the bright side of this disease. There are an infinite number of reasons that having celiac disease sucks — autoimmune issues, random symptoms, no cure, etc. BUT, there are some positive ways this disease has impacted me, and there is no better time than Celiac Disease Awareness Month to look at them.

1. Celiac disease taught me to carefully evaluate everything I eat, and to make healthier choices. I don't know about you, but once I got diagnosed with celiac disease and changed my diet I cut out an enormous amount of crap from my diet. Having celiac disease forced me to learn how to really evaluate the food I eat, and make healthier decisions about what I am putting in my body. Gluten free or not, I now evaluate and carefully consider everything I eat.

2. Celiac disease got me off a whole lot of pharmaceutical drugs. There is a definitely a place for antibiotics and other pharmaceuticals, but for me getting a celiac diagnosis freed me from a lot of unnecessary prescription drugs. According to the University of Chicago Celiac Disease Center, the average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years. I spent three years undiagnosed, and those years were full of everything from antacids to antidepressants – all of which I did not need. Too many pharmaceutical drugs had left my body feeling more confused and ill than ever. Getting a celiac disease diagnosis was a welcome relief to me — I was no longer trying to fix a variety of symptoms with synthetic drugs.

3. Celiac disease gave me a much deeper compassion for those with chronic illness. I now know what it feels like to have absolutely zero control over my body. I understand what it feels like to feel trapped by an illness and unable to fix it, and I wouldn't wish it on anyone. Not only has celiac disease made me very thankful I am not battling a more severe and fatal illness, but I also have a lot of empathy for those who are dealing with chronic health challenges. There are many days I walk down the street feeling like absolute garbage, and look perfectly healthy on the outside. There are a lot of other people out there battling their own health issues, and I now have a much deeper compassion for them.

4. Celiac disease has taught me to be responsible for my own health care. I would be shocked to meet someone with celiac disease who hasn't had a handful of disappointing exchanges with health care professionals. I have learned that my health is in my own hands, and if I go to a doctor it is on me to take responsibility for my own health. I remember once being in a clinic getting a prescription for antibiotics and told the doctor I needed to ensure my medication was gluten free because I have celiac disease, to which he responded: "that is where you can't eat wheat right?". This exchange was only about a year ago — my first thought was, who the hell let this man practice medicine?  The point is, I can't expect a doctor to have all the answers  — It is up to me to ask the right questions, and ensure I feel comfortable, regardless of what health issue I am addressing.

5. Celiac disease has taught me how to be patient ... very, very patient. Most people with celiac disease pretty much have a PHD in patience. They most likely struggled though a diagnosis, then struggled through learning how to properly eat gluten free, had to address all their symptoms and residual health problems from this disease, and learn how to educate those around them.  Then there is the added bonus of all the times that a Celiac accidentally ingests gluten and has to endure the 1-5 weeks it takes for the body to heal. All of this ends up making for one very patient person. I didn't notice myself growing especially patient, but when I think about all the time I have spent 'waiting to feel better' I realize that I have actually become a master in the art of patience for things I can't control.

6. Celiac disease has taught me how to take initiative to educate myself. This disease does not come with a handbook — far from it. There are hundreds of potential celiac disease related symptoms, and literally no two people with celiac disease will have the same symptoms and experience. This disease has required hundreds of hours of reading online, asking questions, evaluating information and drawing my own conclusions. I have learned to apply these research and analytical skills to other areas of my life as well. I am much more competent and confident person when it comes to seeking out information and answers to problems. 

Have other ways that celiac disease has actually been a good thing in your life? Please share in the comments!

— The Healthy Celiac

In honor of May being Celiac Disease Awareness Month, I thought it would be a good time to do a post about how to answer questions about celiac disease. Like every other celiac out there, I have been asked about thousand times 'what exactly is celiac disease?'or 'what happens when you eat gluten' — It took me a while to come up with short, succinct ways to answer these question without going into all the sorted details or blabbing on for a long time.

For a while it annoyed me to try and describe what celiac was like, but now I have short, rehearsed responses to these questions. I of course answer with what I am comfortable talking about, and discuss the symptoms that are specific to me. Every celiac is different, and may answer these questions differently!

When I get asked, 'what is celiac disease' I usually reply: It's an autoimmune disease, meaning when I eat gluten, my body doesn't know how to process it, and thinks it is a foreign antibody. Essentially, my body starts attacking itself in different ways — stomach pain, bloating, hair loss, nerve damage, etc.

When I get asked, 'what happens when you eat gluten' I usually reply: About 20 minutes after I eat gluten I notice the effects. It starts with stomach pain and upset, and then in the days and weeks following, I have a variety of issues like: brain fog, exhaustion, hair loss, joint pain, weigh gain, etc. Your body stops being able to absorb nutrients and that causes a whole host of problems in the body.

When I get asked, 'how do you get celiac disease?' I usually reply: It's a genetic condition, some people are born with it, while others carry the gene silently, until one day it 'kicks in'. A physically or emotionally dramatic event can set it off if you carry the gene, for me it was getting a parasite.

When I get asked, 'do you ever cheat and eat gluten?' I usually reply: No, definitely not. I was so sick for so long prior to my celiac diagnosis, I would never inflict that on myself voluntarily.

When I get asked, 'will a little bit of gluten really hurt you?' I usually reply: Yes, even a tiny bit sets my entire body off — it's like turning on a light switch, once it's on, it's on.

When I get asked 'you're cured as long as you don't eat gluten, right?' I usually reply: Eating a gluten free diet stops the symptoms, it doesn't cure the disease. Celiac disease is a chronic disease with no cure. There are a lot of residual health problems that are associated with celiac disease.

I hope these answers help some of you out there who find it frustrating to answer questions about celiac disease! The more people who know about and understand this disease, the better!

— The Healthy Celiac

This damage to the small intestine is just part of the damage encored to the body as a result of celiac disease. As a Celiac continues to consume gluten, the entire body enters an inflammatory response. Celiac disease is an autoimmune disease, meaning that when gluten is consumed, the body lunches an immune attack not only on the small intestine, but on other parts of the body as well. Essentially, the body is attacking itself. However, for most people with celiac disease, the symptoms do not end with the small intestine.

First, there are usually a host of digestive symptoms happening as a result of the immune attack:

• abdominal bloating and pain,  usually lasting 4-12 hours
  
• chronic diarrhea, which can persist for days following the consumption of gluten
  
• vomiting, usually immediately following the consumption of gluten
  
• constipation, which can persist for days or weeks following the consumption of gluten
  
• pale, foul-smelling, or fatty stool
  
• weight loss
  
• weight gain 
  
  

Each time a person with celiac disease consumes gluten, their digestive system takes anywhere from a few days to a few months to recover, depending on the state of their health before consuming gluten.  The gastrointestinal component of celiac disease is only part of the picture. Once a Celiac consumes gluten, and an auto immune reaction commences. There are a vast number of other systemic reactions that are triggered by the intestinal reaction that can occur. Some of these symptoms include:

• fatigue, lasting days to months
  
• bone or joint pain, often mimicking symptoms of arthritis
  
• depression or anxiety
• trouble concentrating (brain fog)
  
• tingling and numbness in the hands and feet
  
• seizures
  
• dry eyes
  
• canker sores inside the mouth
  
• an itchy skin rash called dermatitis herpetiformis
  
• hair loss, due to lack of nutrient absorption
  
• migraine headaches as well as generic headaches
  
• missed menstrual periods
  
• lactose intolerance
  
• heartburn
  
• discoloration of teeth
  
• false feelings of hunger, due to lack of nutrient absorption 
  
  

The long term effects of a person with Celiac Disease consuming gluten are:

• bone density problems
  
• delayed growth in children
  
• the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS)
  
• anemia
  
• osteoporosis
  
• miscarriages and infertility
  
• epilepsy
  
• vitamin and mineral deficiencies
  
• central and peripheral nervous system disorders
  
• intestinal lymphomas and other GI cancers
  
• gall bladder malfunction
  
• Sjögren’s Syndrome
  
• Ulcerative Colitis and Microscopic Colitis, which effects the large intestine and bowel
  
• Idiopathic Dilated Cardiomyopathy
  
• Crohn’s Disease, which effects the lower intestine and bowel
  
• autoimmune Hepatitis
  
• autoimmune Thyroid Disease (Graves/Hashimoto’s)
  
• Addison’s Disease
  
• intestinal lymphoma
  
• small bowel cancer
  
• pancreatitis
  
  

Different Symptom Behaviors of Celiac Disease

With such a vast multitude of symptoms associated with celiac disease, there are no two Celiacs who have the same long-term symptoms and effects. In fact, according to the University of Chicago Celiac Disease Center, only 1 in 56 people with celiac disease experience related or ‘text book’ symptoms. While some people with celiac disease have a large number of symptoms, others outwardly experience very few. 

On average, a person will wait 6-10 years to be correctly diagnosed with celiac disease. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center). Part of the reason for the delayed diagnosis is that celiac disease is a moving target of symptoms.

Regardless of the severity and frequency of symptoms, long-term damage to the small intestine still occurs no matter what. Here are the categorically different behaviors of celiac disease:

Typical Celiac Disease: Or what is generally what is being referred to as ‘celiac disease’. Those who were diagnosed based on a variety of intestinal and general symptoms, tend to fall into this category. These individuals are aware of their symptoms and ill effects as a result of consuming gluten. Diagnosis can take place as a child, or as an adult. Though not curable, celiac sprue disease can be treated with a gluten-free diet.

Atypical Celiac: Atypical celiac disease occurs when patients test positive for celiac disease, but they don’t have the obvious gastrointestinal symptoms. Instead, when someone has atypical celiac disease they tend to develop symptoms extra-intestinally, which means they develop symptoms beyond their gut. This includes migraines, ataxia, neuropathy, joint pain and more. Some researchers even believe celiac disease may manifest neurological symptoms more often than gastrointestinal symptoms.

Silent Celiac: Silent celiac disease generally begins in your adulthood and has no symptoms that can be seen or felt. The way you can tell if you have silent celiac disease is by having a blood test, followed by a biopsy of the small intestines. The blood test would show that antibodies are running in your bloodstream, and the intestinal biopsy test would confirm that the proteins from the gluten that was being ingested was eating away the tissue and the cells of the intestine abnormally. Silent celiac disease is treated by a gluten free diet.   

Refractory Celiac Disease: Refractory celiac disease occurs when your small intestine fails to heal and you continue to suffer from villous atrophy, even though you've been following a strict, careful gluten-free diet for a year or more. People with true refractory celiac disease, which is a very rare condition, are at much higher risk for serious complications, including a form of non-Hodgkin lymphoma associated with celiac disease. This condition is very rare and only 1.5 percent of all celiac disease patients develop refractory celiac disease.

Written by The Healthy Celiac for Richard Helfrich.com | content also posted on richardhelfrich.com

An estimated 1 in 133 Americans has celiac disease today. That is about 1% of the population, or 3 million people living in America. These figures are estimated to be on the rise as diagnostics and disease awareness become more prevalent in the United States. While not a terribly complex disease to understand physiologically, celiac disease can be an incredibly challenging disease to manage.

Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. Every time we eat, our pancreas secretes digestive enzymes that have the ability to break down our foods into molecules that our cells recognize. These enzymes are manufactured from proteins and need to be continually replenished. Each enzyme has a specific job, and works on a specific type of molecule. The main types of enzymes are lipases for digesting fats, carbohydrases for digesting carbohydrates, and proteases for the digestion of protein.

Gluten is a protein found in certain grains: wheat, rye, barley, spelt, kamut, semolina and triticale. Gluten is particularly resistant to digestion, and can play havoc with our digestive lining when your pancreas is not producing the proper enzymes to break down these proteins.

When people with celiac disease eat foods or ingest gluten through cross contaminated food containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. However, typically, distestive upset is just one element of celiac disease.

*Written by The Healthy Celiac for Richard Helfrich.com | Content currently published on richardhelfrich.com