When I was diagnosed with celiac disease (CD) at the age of 17 (not as dramatic as it sounds) I had no idea what gluten was or how my daily life was about to change. I became a hitchhiker on the journey that is the gluten-free lifestyle. This wasn’t a choice I was making to be ‘healthier’ or because I was ‘intolerant’ or ‘sensitive’ but rather because my immune system would fight me if I fed my body anything containing gluten. For those who don’t know – gluten is a family of proteins found in many cereal grains, especially wheat, barley, malt and rye. These grains are commonly found in pasta, bread, pastry, cereal and a number of alcoholic beverages.
How to speak to someone with Celiac’s
Never say “but can’t you just have a bite?” or “surely you can have it every now and then?”
This autoimmune disease first became apparent when I developed a skin condition known as dermatitis herpetiformis (DH) – having nothing to do with the herpes virus, might I add. Shortly after a viral infection, I started developing itchy bumps on my skin, especially on my knees and elbows. The itching was like nothing I’d experienced before.
Fortunately, having a medical professional in the family, I was diagnosed relatively quickly after the onset of DH and was able to treat myself by starting a strictly gluten-free diet. In the beginning there were definitely a couple of mishaps but 5 years down the line I’m pretty used to eating gluten free and have mostly forgotten about the world of gluten-rich goodness.
How to speak to someone with Celiac’s
If they decide not to eat at a gluten-unfriendly restaurant:
1 – they’ve probably eaten already or planned their meals around the day.
2 – don’t look at them and the empty space in front of them with sorrow and say “shame” every 10 minutes. We know. It sucks.
Let’s break this down.
Let’s take a step back though. What is celiac disease and how is it different to gluten sensitivity/intolerance or a wheat allergy?
Celiac disease (or coeliac for the Europeans) is an autoimmune disease which manifests when one’s own immune system recognises gluten as a foreign pathogen and mounts a response. This can occur from birth or can be triggered later on in life.
Here are some fun facts that I gathered from the book ‘Living gluten-free for dummies’:
- Celiac disease is unique in that it can only be treated by diet.
- It is one of the most common genetic diseases affecting humans.
- To be at risk of celiac disease you need all 3 of the following:
- A genetic predisposition.
- A diet including gluten.
- Something to launch the disease into activity e.g viral infection (sound familiar?), surgery, emotional stress and more.
- Because of its strong genetic component – prevalence increases drastically among people who have immediate family with CD.
- Many classic symptoms include: abdominal pain/indigestion, acid reflux, bloating, nausea, lactose intolerance and much more!
The immune system recognises the gluten proteins as harmful and mounts an attack against the proteins and intestinal cells. This results in recruitment of immune cells and specific antibodies to the small intestine. The immune response damages villi and microvilli. These make up the mucosal lining of the intestine and increase surface area to optimise nutrient absorption. The damage results in the inability to fully digest food and absorb nutrients. This can lead to nutritional deficiencies, malnutrition and other health issues. Testing for CD initially involves a blood test that looks for antibodies only present if you have CD. However, if you have the classic symptoms and test negative, a biopsy can be done.
There seems to be a very fine line between celiac disease and what is known as ‘non-celiac gluten sensitivity’ or NCGS. They share many symptoms and are both treated by a gluten-free diet. When testing for CD, however, a person with NCGS would test negative. There is no antibody or autoimmune response in these cases. It is thought that there may be an innate immune response but this is not fully understood and does not cause any damage to the lining of the intestine like CD does. One mostly has to diagnose it by ruling out CD or a wheat allergy.
A wheat allergy is exactly that – an allergy. This means you react almost immediately after consuming wheat. There is not a risk of further complication and one can be diagnosed with a skin prick test. Being allergic to wheat does not mean one is allergic to gluten containing wheat-free foods.
But where does ‘dermatitis herpetiformis’ join the party?
You might be thinking, well how does an autoimmune reaction in the intestine result in an itchy skin condition?
“When a person with celiac disease consumes gluten, the mucosal immune system in the intestine responds by producing a type of antibody called immunoglobulin A (IgA),” explains John Zone, MD, Celiac Disease Foundation Medical Advisory Board Member and Chairman of the Department of Dermatology at the University of Utah School of Medicine.
These IgA antibodies are directed against epidermal transglutaminase. The antibodies then travel to the skin where they bind with the epidermal transglutaminase protein. Gluten ingestion seems to trigger this reaction.
Not everyone with celiac’s has DH but everyone who has DH has CD. Fortunately, those with DH often do not experience any extreme gastrointestinal issues but may have minor gut inflammation. Of course, there are a variety of manifestations and symptoms of celiac disease, DH being only one of them.
Now that I’ve given some background on me and my favourite disease, we will be diving deeper into the genetics and science behind celiac disease and how complicated it is to predict those at risk of this polygenic disease. So look out for my next post! Coming soon…
- Living Gluten-Free for Dummies : A Wiley Brand (2nd Edition) By Hilary Du Cane, Sue Baic, Nigel Denby and Danna Korn