Spread the Word!

Before I started my process of diagnosis I had never even heard of Coeliac Disease. There are a lot of diseases out there so why should everyone know about this one? Well… every needs to know about CD as it is a very common disease affecting 1 in 100 people. Although it is very common, only 10-15% of those affected are diagnosed with the disease. This means that there are so many people out there suffering and not knowing what is wrong with them. Coeliac Disease cannot be ‘cured’, it is a life-long condition and if left untreated can create some serious health problems.

So I need your help to spread the word! Everyone should know what Coeliac Disease is and how eating gluten affects us. I have seen and heard some very ignorant comments from people who do not understand CD. So this is a post for them and for the people who are yet to discover what CD is.

What everyone needs to know!

Most importantly Coeliac Disease is NOT an intolerance or and allergy!!!!!

The only way to treat CD is through eating a gluten free diet. Gluten can be found in wheat, barley and rye. The foods containing gluten include pasta, pizza, cereal, bread, cakes, biscuits and the list goes on. I would recommend checking all packaging when buying food as many sauces are thickened with wheat as is a lot of processed food such as sausages, burgers and ready meals.

CD is known as an autoimmune condition as when a Coeliac eats gluten their immune system reacts by damaging the lining of the small intestine. The immune system mistakes substance’s found inside gluten as a threat to the body and attacks them. When the gut is damaged in this way, it means the body cannot absorb all the nutrients from food properly (Malabsorption). This damage causes many of the symptoms of Coeliac Disease and adds to the health risks found with it (see below).

Symptoms

Symptoms can vary from mild to severe depending on the person and some people may experience different symptoms to others.

Possible symptoms may include:

• diarrhoea, excessive wind, and/or constipation
• persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
• recurrent stomach pain, cramping or bloating
• any combination of iron, vitamin B12 or folic acid deficiency
• tiredness and/or headaches
• weight loss (but not in all cases)
• mouth ulcers
• hair loss (alopecia)
• skin rash (dermatitis herpetiformis (DH))
• tooth enamel problems
• osteoporosis
• depression
• infertility
• repeated miscarriages
• joint and/or bone pain
• neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).

As many of the symptoms are similar to Irritable Bowel Syndrome (IBS), CD can often be mistaken or misdiagnosed. This is very apparent to me as I myself was diagnosed with IBS before my correct diagnosis.
If you are experiencing any of these symptoms it is important that you are tested for CD by visiting your doctor and asking for a blood test. Unfortunately you cannot be officially diagnosed by having only a blood test; you will also need to be referred to a Gastroenterologist for a gut biopsy. There are now also home test kits that you can buy online and over the counter but it is recommended that you always consult your doctor after gaining your results.

Related health issues

As CD is an autoimmune disease it is more common for people who suffer with other autoimmune diseases; such as Type 1 Diabetes and Thyroid Disease. It is also common for a Coeliac to develop temporary Lactose Intolerance.

Most people with CD in the UK are diagnosed between the ages of 40-60. That is many years of eating gluten and damaging your gut. Malabsoption (as mention above) can lead to Osteoporosis and Osteopenia. I have to stress that young people can also get Osteoporosis. If you have read my complications above you will know that I have calcium and iron deficiency caused by CD and also have Osteopenia which is a less severe form of Osteoporosis. This has also lead to many joint and bone problems.

Dermatitis herpetiformis is a skin condition that is linked to Coeliac Disease. DH often appears on the elbows, knees and the bottom but can appear anywhere on the skin. DH looks like a rash with red raised patches (maybe blistering) and will cause severe itching and may sting.

Cancer. Compared with the general population, people with coeliac disease have an increased risk of developing the following cancers:

• cancer of the small bowel, often referred to as adenocarcioma of the small bowel
• a very rare type of non Hodgkin’s lymphoma of the small bowel called enteropathy associated T cell lymphoma (EATL)
• other types of non Hodgkin’s lymphoma
• Hodgkin’s lymphoma.

However, the majority of people with coeliac disease do not develop lymphoma or the other cancers that are associated with coeliac disease.

Coeliac’s who are undiagnosed or untreated can experience fertility problems in both men and women. Women with untreated or undiagnosed coeliac disease are more likely to experience recurrent miscarriages and have a baby with a low birth weight or a premature baby. Men can experience impotence, reduced sperm motility or abnormal sperm and a decreased satisfaction with sex life.

After Diagnosis

Being diagnosed with Coeliac Disease can completely change someone’s life. Suddenly every food in your cupboard contains gluten and you have no idea what to eat and not only that – what do you do when you go out for a family meal? what if you’re out shopping for the day or going on holiday? Let me tell you it is a nightmare and nearly 2 years after my diagnosis I am still petrified of going on holiday.

This is where a dietician can really help and once you are diagnosed you should be referred straight away to your nearest one. Even though a dietician can help you, it may take a while to get an appointment if your hospitals are as busy as mine! The biggest help I received was from CoeliacUK. They are an amazing charity and I highly recommend them.

The most annoying thing is asking if someone sells gluten free food or caters for Coeliac’s and having to explain what it is. Seriously? you work in catering and do not know what CD is?

What I want is:

  1. Quicker diagnosis for Coeliac Disease
  2. People to know what CD is so that they can be tested for it if symptoms arise.
  3. To be able to eat when I go out shopping (Take note Greggs!)
  4. For the ignorant so and so’s out there to understand that we are not fussy eaters – it is a disease.

The information above was gathered from CoeliacUK and the NHS.

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