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15 Things You Didn't Know About Coeliac Disease!!

Written by Jo Cooke-Best

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Posted on March 19 2021

Over the past decade the number of people being diagnosed with Coeliac Disease has increased significantly. Between 1990 and 2011 the numbers had increased 'fourfold', and today it is estimated that about 1 in 100 people have been diagnosed worldwide. 

In some ways people say that the disease is more widespread than it ever has been before, in other ways you could say that there is more recognition for the disease and as awareness is increasing, so is the ability to efficiently test for Coeliac's as well as the individual person’s want to no longer suffer in silence. 

As we build more awareness… here are 15 facts about Coeliac that you didn’t know!

15 facts about Coeliac Disease that you didn't know! By The Modern Apothecary

1 – Coeliac Disease is a chronic autoimmune disease.
An autoimmune disease is with you for life, this means that you can never grow out of it, much the same as arthritis. It’s not all bad though! With the right care and following the correct dietary requirements you can live symptom free.

2 – The issues with Coeliac Disease lie in the food you eat, not in the disease itself. You must maintain a good diet to be able to stay in good health with the disease.
When a coeliac eats gluten, it causes damage to the small intestine. In untreated coeliac disease, the villi (the area which is responsible for absorbing nutrients in your small intestine) can become inflamed and flattened, or even disappear. This causes pain, discomfort and malnutrition as the body stops absorbing the nutrients it needs. That is why it’s really important to maintain your gluten-free diet as treatment for the condition.

3 – There are literally hundreds of known symptoms of Coeliac disease.
There are hundreds of possible symptom markers for Coeliac disease, many of the symptoms are also possible markers for other illnesses too, which makes it incredibly hard to diagnose. Some people are asymptomatic (they have no symptoms at all! Coeliac disease symptoms can include bloating, diarrhoea, nausea, wind, constipation, tiredness, anaemia, mouth ulcers, sudden or unexpected weight loss unexplained iron deficiency anaemia, fatigue, bone or joint pain, seizures or migraines, depression, osteoporosis, and an itchy skin rash called dermatitis herpetiformis.

4 – Coeliac disease is hereditary.
Celiac disease can pass down generations of families. When one member of the family tests positive (especially a parent) it is good proactive to get the next generation, or siblings tested. According to Coeliac UK first degree relatives should be tested every 3-4 years as Coeliac Disease can present itself at anytime throughout a person’s life.  

5 – To test for Coeliac disease correctly, and get an accurate result, you need to be eating gluten.
A common misconception is that once you stop eating gluten, you will still show positive for Coeliac disease. This might be the case for a few days but left for periods of time your blood will repair (this does not apply to people carrying the coeliac gene during gene testing). When you stop eating gluten the villi which are the tiny micro hairs on the inside of your small intestine, will begin to repair, so if you have endoscopy surgery in your small intestine to diagnose, they will not be showing the same results, giving you a false negative. If you weren’t eating gluten at the time of your blood test, or you had limited your gluten intake, you may have received an inaccurate negative result and still have coeliac disease. If this happens then you will need to repeat the testing process with your consultant.

6 – You can treat Coeliac Disease without medication.
In fact the only way TO treat Coeliac Disease is without the need for medication to live symptom free, then you must adhere to a strict gluten free diet – FOR LIFE! People living gluten-free must avoid foods with wheat, rye and barley, such as bread, beer and pasta. Some people with coeliac disease can be sensitive to oats, it is thought this is due to contamination during the growth phase or during processing. Your medicine is basically to avoid the foods that make you sick! As a little warning: Gluten based ingredients are often used as a cheap way to bind food ingredients together and is often found in many products, so you need to be wary of the products you use.

7 – It is not just foods you need to watch out for!
There are lots of unexpected daily living products that contain wheat/gluten such as toothpaste, make up, shampoo/conditioner and even things like the popular children’s favourite product Play-Doh (here is my recipe to make your own gluten free version at home DIY Aromatherapy Play Dough). You need to be careful that the products are not accidentally injected. Whilst it has not been proven through scientific testing, many Coeliac’s and Non-Coeliac Gluten Sensitivity people report to develop skin issues, sore and itchy scalps, when using certain products that contain wheat or gluten in them, if this happens look for a natural, non gluteny alternative. If you would like to shop for natural makeup, I have a natural, pure, chemical & toxin free range available here.

8 – Even the tiniest amount of gluten can be damaging to a Coeliac.
It is of uttermost importance that you adhere to a completely gluten free lifestyle. This includes making responsible steps towards ensuring you avoid cross contamination.

Here are my top tips from my blog ‘what’s next after Coeliac Disease diagnosis?’ if you share a household with wheat eaters include:

  • You do not need a new cooker! Make sure your existing cooker is cleaned frequently. If you are cooking wheat items at the same time as GF items, use separate trays, put the GF tray at the top to avoid any crumbs falling on your food and make sure that your oven mitts are clean and not contaminated!
  • Toasters are hit and miss; some people still use a toaster if they have a toasting pocket or have their own toaster. Personally, I do not trust them, and I worry about accidents, if I want toast I do it under the grill on a clean tray or piece of baking paper.
  • Keep cooking utensils separate during food prep and cooking.
  • Have your own breadboards, never share!
  • Some people, especially the sensitive ones opt to have a fully gluten free kitchen. This is down to personal discretion and is entirely your own decision. Do what you feel comfortable with (just bear in mind that if you live with wheat eaters, then they still need some wheat in their diet, cutting it out of their diet completely can lead to its own issues.
  • Clean your hands after handling any wheat products to avoid cross contamination.
  • NO DOUBLE DIPPING. This does mean separate butters jars of jams etc. and things such as shared veggies on the dining table when other guests have gluten foods on their plates. The safest thing to do is to have your own products up or take what you need with clean cutlery and put it on their own crockery ready for them to use when they are ready. For example, scoop some butter out of the pot and put it on their plate to use. That way you are keeping the core product clean from cross contam.
  • Continuing the subject of double dipping, avoid frying foods in the same oil that has been previously used to cook gluteny foods in. Use your own oil and pan!
  • Get used to making the time to cook from scratch. Cooking this way will save you money when shopping and is a lot healthier. If you have a busy household, you can batch cook and freeze meals to eat at a later date. A lot of processed gluten free foods are high in sugar (which really is not necessary as sugar has its own health issues) and eating a lot of foods like this is the unfortunate cause of many people “putting on weight when going gluten free”.

9 – Sometimes gluten free foods contain gluten.
Any food product that is labelled “gluten-free” cannot contain more than 20 parts per million of gluten, which is the safe threshold of gluten consumption for people with celiac disease. People with Coeliac disease are safe to eat these products, however, if you have a gluten intolerance or are very sensitive you will find that these products still make you very sick.

10 – If you accidentally inject gluten, expect to get poorly.
If someone with coeliac disease accidentally eats gluten, they are likely to be unwell within a few hours. We call this ‘getting glutened’. Symptoms can be varied but include brain fog, dizziness, severe diarrhoea and vomiting and can last several days.

11 – Check your vitamin levels.
People recently diagnosed with celiac disease are commonly deficient in fibre, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D.

12 – Probiotics may help rebuild your gut.
A healthy gut is important for us all, but if you have coeliac disease, especially if you have recently been diagnosed it is crucial to ensure that your gut is at its optimum. Probiotics prevent harmful bacteria from attaching to the gut lining and growing there. They send signals to your cells to strengthen the mucus in your intestine and help it act as a barrier against infection and inhibit or destroy toxins released by certain “bad” bacteria that can make you sick.

13 – You can still eat.
Yep, believe it or not, you can still eat! All types of rice, potato, corn (maize), plain meat (including meat fed on gluten-containing grains), poultry, fish, eggs, cheese, milk, most yogurts, fruits, vegetables and pulses (peas, beans and lentils), rice, nuts and seeds are naturally gluten free and are suitable for the diet.

14 – You can still eat out.
It is UK law that all caterers must be able to provide information on any allergens, including cereals containing gluten, in all the dishes they serve. This means if a recipe uses cereals containing gluten such as wheat, rye, barley or oats in the ingredients, they will need to declare it. Caterers can provide allergen information in written or oral formats. Where the information is not provided written and upfront, there must be clear signposting to where the information can be found. Businesses choosing to provide information orally must ensure that there is a written notice, menu, ticket or label that is clearly visible, at the point food is chosen, to indicate that allergen information is available from a member of staff.

Coeliac UK runs an accreditation scheme to drive improvements and standards in eating out so that people with coeliac disease can find more choice. You can find more about this at www.coeliac.org.uk/accreditation. Coeliac UK’s online Venue Guide lists accredited venues and member recommended venues where they’ve had a good experience. There are over 6,000 venues listed so that more and more people can find somewhere to eat that caters for their gluten free diet. The charity has launched a range of catering services to support this and you can find more information at www.coeliac.org.uk/cateringservices.

15 – There is help out there!
Coeliac UK is the national charity for people with coeliac disease and has a wealth of information for all those following a gluten free diet including recipes, helpline and a regular magazine. It was established in 1968 and around 12,000 new members join every year. Coeliac UK has two smartphone apps: Gluten Free Food Checker and Gluten free on the Move, helping those with coeliac disease and those choosing to eat gluten free, to manage every element of their diet; whether shopping for food or finding somewhere to eat out. It is available to all members of the charity.

Click here to find out more information about the gluten free diet, look at my delicious gluten free recipes and to purchase products from our bakery (all bakery products are baked in an environment that does not use the top 14 allergens) and more!

Thanks for reading!

Hugs and squishy gluten-free brownies.
Jojo xXx

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