A few years ago a friend of mine became very sick. She bounced from doctor to doctor during which time no one could pinpoint exactly what was wrong with her. Thankfully, she discovered that there was a history of Celiac Disease in her family. The hereditary characteristic of the disease enabled her to be diagnosed accordingly. The diagnosis changed her life but also probably saved it. Obviously, a diagnoses like this has a major impact on the person as well as their family and close friends. On the flip side it allows them to address the issue immediately and take the necessary steps to adjust their lifestyle in order to live a healthy, full life. As explained in my previous article, celiac disease is more complicated than gluten intolerance. In this article celiac disease is explored in more depth.
What is Celiac Disease?
Celiac Disease (also Coeliac Disease) is a chronic auto-immune disorder. Our immune system is the body’s natural defence mechanism: it protects the body against illnesses. In the case of celiac disease, the body reacts abnormally toward gluten. Food containing gluten will cause the immune system to respond by forming anti-bodies to the gluten and thus damaging and eventually destroying the lining of the small intestine (in particular the villi). The villi are the hair-like structures found on the lining of the small intestine, responsible for absorbing nutrients from food. In a healthy person, body nutrients are pushed through the small intestine walls into the blood stream. If the villi are damaged, it is impossible for nutrients to be absorbed effectively, which causes malnutrition. The main nutrients which are not absorbed effectively are thiamine, riboflavin, niacin, folate, calcium, magnesium, iron, vitamin B12, vitamin A, vitamin D, vitamin E and vitamin K.
Although there is no medical cure for celiac disease, avoiding gluten intake can be an effective way of keeping it under control. It is possible for the small intestine to heal if your gluten intake is correctly managed. Celiac disease generally seems to affect more females than males. It could be triggered by gluten, but stress often is a major factor activating the disease.
Symptoms to look out for
As mentioned previously, celiac disease is an auto-immune disease. This means the body’s immune system attacks healthy cells in the body, mistaking them for foreign cells. This reaction not only causes inflammation in the gastrointestinal system, but in other parts of the body as well. It could therefore also affect your spleen, joints, bones, nervous system and skin.
Symptoms of celiac disease differ in adults and children. According to the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), the following symptoms could occur when you or your child suffer from celiac disease:
Symptoms common in children:
- Abdominal bloating or gas
- Abdominal pain
- Chronic diarrhoea
- Persistent constipation
- Pale, foul-smelling or fatty stools
- Nausea and vomiting
The malabsorption of nutrients could impact the development of your child. Look out for the following symptoms:
- Weight loss
- Failure to thrive (infants)
- Delayed puberty (adolescence)
- Irritability and mood changes
- Dental defects
- Growth impairment (height)
Symptoms common in adults:
- Anaemia (also called iron deficiency)
- Bone or joint pain and stiffness
- Lesions inside the mouth
- Dermatitis Herpetiformis (itchy skin rash breaking out in bumps and blisters)
- Infertility and/or miscarriage
- Missed or irregular menstrual periods
- Hands and feet feeling numb or tingly
- Dental issues such as diminishing enamel or spots on your teeth
It may be challenging to recognise celiac disease, as auto-immune diseases often pose as each other. In some cases, it is possible for a person to have an additional auto-immune disease in conjunction with celiac disease, for example lupus, type 1 diabetes, rheumatoid arthritis etc. It could also be mistaken for other conditions, like irritable bowel syndrome (IBS), chronic fatigue syndrome or lactose intolerance. It may take time to diagnose celiac disease correctly. As medical practitioners grow their knowledge base regarding the disease, it becomes easier to diagnose and treat. If you suspect that you or your child have any of the above symptoms, it is wise to consult a doctor as soon as possible. Because symptoms are generic and could point to a host of other illnesses it is advisable to rather seek proper diagnosis than deduce the condition on symptoms alone.
Diagnoses and testing
It is recommended that once you have recognised one or more of the above symptoms, gluten is not removed from your diet at this point. Testing is more reliable while you are still on a diet containing gluten. There are a few tests your medical practitioner might propose. As it is not straight forward to pinpoint specific auto-immune diseases, it is best to do all the required tests in order to be correctly diagnosed. The tests could include the following:
- Physical examination
During a physical examination the medical practitioner will assess the above symptoms, especially skin rashes and abdominal issues. During this time the doctor may discuss any similar, known medical history in your family, as celiac disease could be hereditary. Best you do your homework before your appointment.
- Blood tests
There is a battery of blood tests required to diagnose celiac disease. The medical practitioner will probably start by testing for antibodies common in people with celiac disease. If the results are negative and not satisfying, he/she may decide to proceed with more tests. These could include amongst other, complete blood count (cbc), liver function tests and cholesterol tests.
- Skin biopsy
If you have a skin rash, your medical practitioner might choose to do a skin biopsy by taking a small piece of skin tissue to be examined with a microscope. The tissue sample will be analysed by a laboratory. If this test is still inconclusive, the next step could be an internal examination.
- Internal examination and/or biopsy
The medical practitioner will examine the villi in the small intestine by conducting an upper endoscopy, to assess if there is any damage. He/she could also opt to take a tissue sample for a biopsy.
If celiac disease runs in your family, it is wise for family members to go for regular check ups. According to the NHS (UK) research shows that your risk could be up to 10% higher if you have a family member with the same condition. As celiac disease could be a life-long journey, my advice would be to seek a medical practitioner whom you trust and could build a relationship with. This person will play a major role in your journey to health.
Accepting your diagnoses
Once celiac disease has been diagnosed, it could feel overwhelming. You may be told it’s not curable and that in itself could feel like a heavy weight on your shoulders. I have walked a road of realising that accepting a diagnoses is much more helpful than living in denial. Only through acceptance can you keep your head up, take control and face the journey head on – the journey to live as healthy as possible. Celiac disease may not be curable, and does have a huge impact on your family and friends, but it is manageable. Choose encouragers to walk this road with you.
Addressing celiac disease
- Diet changes
The main way to address celiac disease is to convert to a gluten-free diet. By removing gluten from your diet, the small intestine (villi in particular) will get a chance to heal. In children, it could take 3-6 months to heal and in adults much longer. This will result in the body sufficiently absorbing nutrients again. It is preferable to see a dietician, specialising in this field. It is also beneficial if your doctor and dietician can support you by working together as a team.
Gluten is found in grains such as wheat, barley, rye, triticale (cross between wheat and rye), malt and spelt. Although oats do not contain wheat, it could be contaminated during processing. You could safely introduce the following into your diet as substitutes: nuts, potatoes, rice, soy, legumes (beans, soybeans and peas), amaranth, quinoa, buckwheat, bean flour, sago, tapioca, sorghum, fresh fruit and vegetables, eggs, fresh meat and fish. Be diligent in reading labels on food. Many processed foods, additives (eg. modified food starch, preservatives and stabilisers) and products like vitamins, certain medications, supplements, lip balms, toothpaste and kiddie’s play dough could contain gluten. Your dietician will assist in the education process of understanding food labels.
- Educate yourself, your family and friends
In order to make it easier for you, it is important that your family and friends are educated on your new lifestyle. Their knowledge of the disease and food types will greatly assist in this transition. It is easy for gluten-free food to become contaminated if your family still eat food containing gluten. Any exposure to gluten will cause damage to the small intestine again. An effective way in which to address this is to have your own workspace in your kitchen, fridge and pantry and use separate cutlery and crockery to prevent contamination. There are excellent recipe books with gluten-free recipes for meals as well as gluten-free lunchbox ideas.
- Find Sherpas
Sherpas are guides who take mountaineers to the top of the Himalayas, because they know the environment, weather patterns and routes. They have been to the top many times. Find sherpas to assist you in your health journey. They have walked the road farther and will be an amazing help in terms of encouragement as well as sharing knowledge and experiences. Again, choose wisely who you surround yourself with. You need positive, wise people to walk with you.
Living well with Celiac Disease
In our circle of friends, we tried to accommodate my friend in different ways. One way was by choosing to avoid restaurants (unless they were known to be absolutely gluten-free) and rather arrange our get-togethers at home. Finding new recipes and the correct ingredients to cook and bake with, in order to suit her diet, was a joint effort. We educated ourselves as much as possible so we would know what was good for her and what could harm her. She would come over to our homes and cook so we could learn from her. Together we explored a new world of eating. It was also inspiring to see her family adapt to their new lifestyle. Living with celiac disease, well managed, is possible.