My Biggest Lesson So Far


What I studied and learnt this week has probably been the most significant of the course so far. It was hugely emotional to the point I cried, a lot, listening to the lectures and reading and hearing people’s personal stories.

JE

American actress, Jennifer Esposito, shared her story about how she lived with an undiagnosed disease until the age of 35. To hear her story is heartbreaking because up until that point, since the age of 15 when she knew something in her body had never been right (from birth in fact), she had been seeing doctors and specialists, asking good questions, eating well, working out, doing all the right things, but still she remained sick. And she got sicker and sicker, with so many symptoms you wouldn’t believe. And every time, the doctors dismissed her and told her it was all in her head. They dismissed that there could be an underlying reason for sleeping 13 hours a night but still waking up exhausted, they dismissed her constant stomach problems and joint pains, they dismissed her raging panic attacks, her knees buckling, extreme sinus headaches, numbness, tingling, yellowing skin, nails so weak that they would break at a mere touch. They even dismissed the lump that was protruding from her neck.

She was tested for MS, Lupus, Lyme Disease, hepatitis, rheumatoid arthritis and more. All negative. She was told over and over, again and again, over this period of 20 years that it was all in her head and was sent away with prescriptions for Valium and the number of a therapist. By this time Jennifer was exhausted, she was holding together a successful career, but inside she was dying, both physically and mentally. She tells how she was so weak, she had almost given up the fight for answers and proving her sanity, she was almost willing to believe that the doctors knew best.

Just in time, with yet another doctor, by which time Jennifer barely had the energy to speak, she pleaded “I need help, I need your help, please.” And for the first time this doctor listened, really listened and she made a promise “I will help you. I will find out what’s wrong”.

Two weeks later (in 2009) the doctor called and told her she had Celiac Disease. Celiac Disease! It had a name, she wasn’t insane, she was sick, as she always knew, and finally there was hope. Jennifer had never heard of Celiac Disease and so began an emotional road of discovery and recovery… you can read more about her story at www.jennifersway.org.

I didn’t know much at all about Celiac Disease before this but hearing this story and then from other fellow students about how their stories mirrored that of Jennifer’s, not only concerning Celiac Disease but other illnesses and diseases, it taught me something equally as important. And this was what this module in the course was designed to do, not only teach about gluten related health concerns, but teach how listening is such an important part of what I must do. Not just hear the words, but to really listen because I and other health coaches may be that last resort when someone has given up hope. Understanding the level of emotional pain, as well as the physical, that so many people unnecessarily suffer touched me so deeply. I never want to be one of those people who dismisses.

And that’s not to say doctors don’t know their jobs, but sometimes symptoms can be so vast (particularly with Celiac Disease), that a diagnosis is not always obvious and doctors only get a short time with each patient and simply cannot get to know them and understand them in that time. It is also worrying that not all those in the medical field even know about this disease. Jennifer tells a story about being in hospital after her diagnosis and a nurse not having a clue what it was, and then when it was explained to her, told Jennifer that they couldn’t feed her because the hospital didn’t cater for gluten free patients… a hospital!! It truly is a concern.

GF

As I said, I didn’t know much about Celiac Disease so I am certainly no expert now, but I want to give you a brief explanation of Celiac Disease and gluten, because it might just resonate with you or someone you know.

Gluten is a combination of 2 proteins found primarily in the grains barley, wheat and rye. The proteins contain Glutenin and Gliadin which together make Gluten.

Gluten is a major component, with glue-like properties, which gives food a doughy, elastic, sponge-like structure. It is also added to foods as a thickening agent or to enhance flavour.

For people with Celiac Disease (an auto-immune condition), consuming gluten triggers an attack on the intestines. Within the intestines we have villi, hair-like structures that protrude from the intestinal wall. Villi are responsible for helping to absorb vitamins and nutrients, but for those with Celiac Disease the villi are damaged by the gluten – they shorten and eventually flatten out, and thus the body becomes malnourished leading to a whole host of symptoms and complications.

There is no cure for Celiac Disease but a controlled gluten-free diet will slowly reverse the damage in the small intestine. A gluten-free diet excludes all forms of barley, wheat and rye. Sounds like a simple remedy right? No way! Gluten is found to some degree in nearly all manufactured foods and for those with serious allergic reactions, the risk of cross contact with gluten products is ever present.

Here is a list of just some products containing gluten to give you an idea of how difficult it is to follow a gluten-free diet:

Cereals Bread Bouillon Cubes Food thickeners/extenders
Vinegar Cakes / Cookies Salad Dressings Cheese Spread / Processed Cheese
Canned Soup Brown Rice Syrup Gravy & Sauces French Fries
Hot Dogs Many Chocolates Condiments Canned Baked Beans
Colourings Sweets / Chewing Gum Ice-Cream Teabags & envelopes (gluten is used to stick them

 

What are the symptoms of Celiac Disease?

This is where it gets tricky as no two celiacs are alike. There are in fact more than 300 symptoms recorded! The list below is therefore not exhaustive but offers a general indication according to the most common symptoms. You’ll recognize that many of the symptoms are common to other health concerns, which is why it is often misdiagnosed or left undiagnosed completely.

Anemia Mouth Sores Skin Rash Acid Reflux
Brain Fog Depression Abdominal Bloating Panic Attacks
Diarrhea Weight Loss Tingling in Feet & Legs Mood Disorders
Anxiety Mucus in the stool Dental & Bone Disorders Muscle Cramps
Constipation Nausea / Vomiting Failure to Thrive in Children Burning Stomach

 

Diagnosing Celiac Disease

Generally doctors look for 5 pillars of diagnosis (with some exceptions):

  1. Signs or symptoms compatible with CD
  2. Positive serological screening tests
  3. Presence of genetic markers: HLA-DQ2 or HLA-DQ8
  4. Intestinal damage typical of CD detected by endoscopy/biopsy
  5. Symptom resolution following implementation of gluten-free diet

 

Is a gluten-free diet only for celiacs?

No. There are people with ‘Non-Celiac Gluten Sensitivity (NCGS)‘. They display symptoms consistent with Celiac Disease, but it is not an autoimmune or allergic disorder and does not cause intestinal damage.

And there are those with a wheat allergy. Generally they will display symptoms such as swelling, itching, hives/rash, itchy watery eyes, difficulty breathing and anaphylaxis.

There are also a high number of people that follow a gluten-free diet as a lifestyle choice. They have no sensitivity or allergic reaction and so don’t need to be as strict as a celiac, but they simply feel better by cutting most gluten products from their diet. Don’t be fooled though into thinking that the GF packaged products make for a healthy diet, they don’t necessarily. The same rules still apply, in that packaged/processed food simply cannot compare to a diet primarily made up of natural whole foods.

It is really important for anyone who suspects they may have Celiac Disease, to immediately be tested as two of the 5 pillars for diagnosis require that gluten is present in the diet at the time of testing. So although you may be able to self-diagnose to a degree by eliminating gluten, you really wouldn’t want to have to add it back in for the sake of testing! And should anyone want some resources for Celiac Disease / gluten-free diet I have plenty.

I hope this has been helpful to you and thank you for reading such a long post. I truly hope than none of you feel so abandoned and dismissed and please know there is always hope!