As I’ve started blogging about my life with celiac disease, a lot of people have asked me to write a piece about the basics of it all.  Most seem to know it has something to do with gluten, but not many people know exactly what it entails, and how it differs from a gluten allergy or sensitivity.  Here I’ll give you the basics, so that you understand what celiac disease is and why eating a gluten free diet is so critical to treatment. Okay fine, it’s the only treatment.  So that makes it critical. 🙂

What is Gluten?

First, let’s talk about gluten itself.  Gluten is a mixture of proteins found in specific grains.  It gives these grains their elasticity and “glues” the dough together.  Grains that contain these proteins include wheat, barley, and rye.  Oats do not actually contain gluten, but are often contaminated because they tend to come in contact with wheat when they are harvested and processed.

Certainly gluten is found in typical wheat-based products like bread, pasta, baked goods, pizza, and other products you would assume may contain flour.  However, it’s also in a wide variety of other products, like sauces, processed meats, soups, spice mixes, marinades, salad dressings, soy sauce, and flavorings.  It can also be found in other things like medication, shampoos, lotions, toothpaste, cosmetics, and even baby wipes. Those extremely sensitive to gluten, such as people with celiac disease, typically stay away from even topical products with gluten to avoid even the slightest chance of ingestion.

A lot of people seem shocked when they see me eat rice or corn.  “I didn’t know you could have that!” There are a variety of grains and pseudograins that do not contain gluten, and they are typically used in gluten-free foods. However, that doesn’t typically translate into a healthy diet, which I’ll get into later on.

What is Celiac Disease?

For those diagnosed with celiac disease, gluten is especially damaging to their gastrointestinal tract.   Celiac disease is an autoimmune disease, meaning that the body’s immune system attacks healthy cells. In the case of celiac patients, it’s an immune reaction to ingesting gluten.  This reaction creates inflammation that damages the small intestine’s lining. Small finger like things called villi line our small intestine, and the autoimmune reaction damages those villi, causing those with celiac disease to not absorb nutrients properly.

The treatment for celiac disease is 100% adherence to a gluten-free diet.  If left untreated, or the patient does not adhere to strict diet, additional complications can arise.  These may include osteoporosis, infertility, bone weakness, nerve damage, and intolerances to other foods.  Long-term, additional autoimmune conditions may develop, such as lupus, Graves’ disease, and multiple sclerosis.  It can also lead to cancer, particularly an aggressive form of non-Hodgkin lymphoma.

Even the smallest amount of gluten can cause an autoimmune response in a celiac.  Anything over 10 milligrams per day can cause a reaction – that’s 1/350th of a slice of bread!  So yes, even a crumb can cause intestinal damage. And, consuming amounts lower than 10 milligrams a day, on a regular basis, can cause damage over time.  This can cause someone who thinks they are eating gluten free – but are in fact ingesting gluten through cross-contamination – to not feel better despite adopting the prescribed diet.

Such strict gluten-free requirements can be very problematic for those with celiac disease.  Eating out at restaurants can be very difficult, as can living in a home with other people who eat gluten.  Cross-contamination occurs when a gluten free food comes in contact with other food containing gluten, or surfaces used to prepare gluten-containing food, such as dishes, pots and pans, cutting boards, or grills.  Patients with celiac disease are advised to have gluten free only appliances, such as toaster ovens, toasters, etc. to avoid this. If pots and pans have been used extensively to cook glutenous foods, they should be replaced as well, particularly if they have scratches (the gluten may stick there!).  Other items frequently in contact with gluten, such as a pasta strainer, should also be replaced.

Symptoms and Diagnosis

Celiac disease is a very serious autoimmune condition that, unfortunately, is often overlooked by medical practitioners.  So overlooked, in fact, that according to the Celiac Center at Beth Israel Deaconness Medical Center, Americans typically wait 6-10 years for a diagnosis!  Part of the reason for this is that symptoms of celiac disease are multi-symptomatic, meaning they can appear in many different body systems and organs, thus making it difficult to diagnose.

There are over 200 symptoms of celiac disease, including but not limited to:

• Digestive issues
• Fatigue and weakness
• Depression and/or anxiety
• Brain fog
• Skin issues
• Respiratory problems
• Infertility and hormonal issues
• Vitamin and mineral deficiencies
• Hypoglycemia
• Inflammation
• Other autoimmune disorders

It’s entirely possible to exhibit none of the above symptoms, or no symptoms at all, and still have celiac disease.  This of course makes it much harder to diagnose, and also means that the individual is incurring more and more damage to their small intestine as they continue eating gluten. For example, my main complaint when I went to my doctor was a tender abdomen – it felt as if my entire stomach was bruised. Luckily she immediately suspected celiac disease, so my time to diagnosis was nowhere near the average 6-10 years.

The first step in diagnosis is a simple blood test.  Those with celiac disease who are consuming gluten have a higher than normal level of certain antibodies in their blood.  The immune system produces these antibodies because it thinks gluten found in the body is a threat. Note: for the test to be accurate, the patient must be currently eating gluten.  If you suspect you have celiac disease, you should always get screened prior to trying the gluten free diet.

If the blood test comes back positive, the next step is an endoscopy, which is still considered the gold standard for diagnosis.  A biopsy will be taken of the small intestine and examined to see if the intestinal wall has a scalloped appearance – which only happens in patients with celiac disease – and if the villi are damaged.

So, what happens if someone believes they have the symptoms of celiac disease, but their tests come back negative?  Someone may have non-celiac gluten sensitivity if they have similar symptoms as someone with celiac disease, but are not able to be diagnosed via blood test or endoscopy.  

Transition to the Gluten Free Diet

Once a diagnosis is made, it’s time to transition to an entirely gluten free lifestyle.  This can be a very daunting task, considering the very long list of different terms used for wheat, and the amount of label reading required to ensure products are safe to eat.  You can read about how exactly I went gluten free here.

Even products labeled gluten free need to be validated, because the labeling requirements are quite loose. Those with celiac disease should look for the “Certified Gluten Free” label, which means the product contains less than 10 mg of gluten and is considered safe for celiac consumption.  Products simply stating “gluten free” can contain up to 20mg. In addition, it should be noted on the nutrition label if the product was made in a facility that also processes products containing wheat, or even on the same production line. This can increase the chance for cross-contamination.

Many people newly diagnosed with celiac disease or a gluten sensitivity start out by swapping out their favorite foods.  For example, buying pizza, cookies, crackers, cereals, and other processed foods that are simply gluten free versions.

While this may be an easier way to adapt initially – especially from an emotional perspective, as one deals with a lifetime without their favorite glutenous foods – many with celiac disease find that these products do not necessarily make them feel better.  In fact, since the products are often filled with additional fat and sugar to make them taste better, and flours with a higher glycemic index than wheat, they are often times far worse than their gluten-filled counterparts. The best diet – for anyone, celiac disease or not – includes whole foods with quality protein and a wide variety of fruits and vegetables.

The Road Ahead

A celiac disease diagnosis is hard for anyone.  In some cases it’s a relief to finally have validation that gluten is not tolerated by the body.  But there’s an emotional process that comes along with the diagnosis – a grieving process, if you will.  The individual has to let go not only of many of the foods they enjoy, but also a lifestyle of ease. Gone are the days of simply going out to eat, or enjoying a social gathering with friends, or taking a spontaneous car trip.  All of that requires quite a bit of planning for someone with celiac disease.

And then there’s also the fact that we are different from the rest of the population, yet it’s an invisible difference.  Celiac disease is not distinguishable from the outside, and in some cases it’s hard for friends and family to understand that it’s a true condition that needs to be taken very seriously.  Social situations can be very trying, especially with acquaintances like coworkers, or restaurant staff, who may see the need for gluten free food to be pretentious or attention seeking.

What I also know, three years into my diagnosis, is that it’s not an easy road to travel alone.  Doctors may provide a diagnosis but seldom provide help beyond that. A nutritionist may advise what can be eaten on a gluten free diet, but there’s not much hand holding on the path to actually healing.

After someone is finally diagnosed with celiac disease, several other conditions may emerge – like leaky gut, small intestine bacterial overgrowth, additional food intolerances, and vitamin deficiencies. A functional doctor and a health coach can go a long way in easing the transition. My own struggles are the very reason I became a health coach!

Resources

Need help transitioning to a gluten free diet? Here are a few resources to get you started:

• www.beyondceliac.com
• www.celiac.com
• http://www.glutenfreedomproject.com/
• https://tacanow.org/family-resources/hidden-sources-of-gluten/
• http://www.glutenfreegluten.com/

If you need more hands-on guidance, I’m happy to help. Whether you are newly diagnosed or have tried a gluten free diet and still aren’t feeling better, I can help you achieve your health goals with 1:1 guidance. I offer complimentary Total Transformation Discovery Sessions to explore:

• what’s been stopping you, slowing you down, or keeping you from having the health & energy you want
• a powerful vision for your Total Transformation and what it will mean for you and your life
• which foods and lifestyle habits are bringing your body down…and what to do about it
• a step-by-step plan to create a Total Transformation in 90 days or less

Book your Discovery Session here!