What is Celiac Disease?
With Lucy being a celiac and that being part of the reason why Lucy Bee came about, I thought it would be interesting to cover a couple of topics around Celiac Disease; what it is, symptoms, diagnosing it, and the treatment.
Celiac disease is an autoimmune disease, which means that the person’s immune system attacks its own tissue when gluten is consumed. It is not an allergy or an intolerance. This causes damage to the lining of the small intestine and means the person will not be able to absorb nutrients properly, increasing the risk of malnutrition or a nutrient deficiency.
Gluten is a protein found within wheat, rye, and barley, and so for those with celiac disease they should avoid consuming anything that contains any of these three products.
Please keep in mind, these blogs are just to provide you with information, they are not intended to treat or diagnose you. If you have a medical condition including celiac disease, and you have any questions in regard to your health, please speak to your health care professional, whether that’s your GP, Dietitian, Nurse, or Registered Nutritionist. Or, if you think you may have celiac disease, please go talk to your doctor first before excluding gluten, I’ll talk about why this is important below.
Celiac disease is an autoimmune disease that occurs in approximately 1:100 people and does have a genetic predisposition. It can develop at any age, which means that you don’t have to be born with it, it can happen at the first introduction to gluten, or later on in life.
An autoimmune disease is when your own body’s immune system attacks its own body. It should be the case that your immune system can tell the difference from foreign cells (e.g. bacteria and viruses), and your own healthy cells. In the case of celiac disease, the immune system inappropriately mistakes gluten (specifically a part of gluten called gliadin) as a threat to the body and attacks it. This then causes damage to the small intestine.
What happens in the body when those who have celiac disease eat gluten?
When gluten is consumed, we know that it causes the immune system to attack the gluten, and cause damage to the lining of the small intestine. Our small intestine is where most of the digestion and absorption of nutrients takes place in our body. To increase the surface area of the small intestines for absorption, our small intestine has something called villi, which are small finger-like projections as shown in the image below. The microvilli also shown in the image below, further help to increase the surface area, and increase the amount of nutrients which can be absorbed and then utilized by the body.
Here’s an image of the villi and microvilli in a healthy small intestine.
So why am I telling you about this?
Well with celiac disease, this is where the damage takes place. When someone with celiac disease eats something containing gluten proteins (gliadin), we know that the immune system has an inappropriate response, treating it as a threat to the body, and produces white blood cells and antibodies to fight it. This leads to the antibodies to attack the gluten and this attack on the gluten ends up damaging the villi (and microvilli). The villi become blunted and flattened. When these villi are damaged, it causes malabsorption and decreases the ability for the person to properly absorb nutrients.
What are the complications for those with celiac disease if they continue to consume gluten?
If their villi become flattened, this means that there is less surface area for the absorption of nutrients, which can lead to a lack of nutrients in your body leading to malnutrition. This will leave the person being unable to function normally. Another complication of this is osteoporosis which is weakening of the bones, leaving a person more susceptible to fractures and breaks. It can also cause infertility. There is an increase in risks of certain cancers including small bowel cancer.
Key nutrient deficiencies include:
- Iron deficiency anemia
- Vitamin B12 anemia
- Folate anemia
The enzyme which breaks down lactose (milk) is found in the small intestine, and damage caused to the small intestine, due to the consumption of gluten in those with celiac disease, can lead to lactose intolerance. Following a gluten free diet may allow the individual to be able to tolerate lactose again.
Please note these are risks for those who have celiac disease but are not following a gluten free diet.
Who is affected?
It is commonly diagnosed either in people between 40-60 years, or early childhood between 8-12 months, however, as mentioned before, it can occur at any age.
It has been estimated that it takes roughly 13 years to be diagnosed. Celiac disease has been found to be more common in females than males. It is estimated that only 30% of people who actually have celiac disease have been diagnosed, which means that there are people who are unaware they have this autoimmune disease. If you have a first degree relative who has celiac disease, there is an increase in risk of you developing it. It has also been seen that celiac disease is more common in those with type 1 diabetes, dermatitis herpetiformis, down syndrome, autoimmune thyroid disease, and Addison’s disease.
There are typical symptoms when someone eats gluten with coeliac disease, this includes:
- Abdominal pain
- Weight loss
- Poor weight gain
- Lethargy and tiredness
- Nausea and vomiting
- Anemia (iron or vitamin B12)
However, there are also atypical symptoms (atypical means that it is not the norm), in this case, it is when patients may lack the classic symptoms that are associated with celiac disease which are more gastrointestinal symptoms. Atypical symptoms include:
- Osteopenia (where your bones are weaker than normal, but not at the stage of osteoporosis)
Other symptoms include infertility, and dermatitis herpetiformis (a rash on the skin, which itches and burns).
38% of people with celiac disease are asymptomatic. This is where 90% of those who are asymptomatic do not complain of any symptoms, including gastrointestinal, however they still have damage to their villi in the small intestine due to exposure to gluten.
It has been noted, that there is a risk that those who do actually have celiac disease, have been misdiagnosed as having IBS (irritable bowel syndrome), or another digestive condition.
Gluten Free and Vegan Chocolate Cake
It is thought that the delay in the diagnosis of celiac disease, can increase the chance of developing another autoimmune disorder. Due to the wide variety of symptoms that someone can experience with celiac disease, sometimes a diagnosis can be delayed.
If you feel that you tick some of the symptoms and are concerned that you may have celiac disease Celiac UK have an online assessment to help see if you should be tested for celiac, which you can complete. It’s also worth following the information below as well.
If unsure of what to do, please follow the guidelines set out by your governments health advice as each country has different procedures.
So, what can I do? The below is based on UK Guidelines please check with your own guidelines as well
If you think you have coeliac disease, don’t just cut out gluten as it is necessary that you continue to consume gluten through the whole diagnostic period, until it is confirmed that you have celiac disease and that gluten should be excluded.
It may also be worth keeping a food diary. Include what you have eaten, and then any symptoms that you have, and when they occur after you have eaten, e.g. at 12pm a ham sandwich on multigrain bread, and then 2 hours later you experience bloating, cramps and constipation. You can then take this and show it to your doctor and it means you have all of the information, rather than forgetting something when you go to see them.
Speak to your doctor and discuss your symptoms. If they think it could be celiac disease, they will either take a blood test at the surgery or will send you to get one done. The blood test will check for antibodies which can indicate celiac disease. The antibodies looked at are total IgA, and IgA-tTG which will show positive results in around 98% of those with celiac disease and comes back negative in around 95% of those without celiac disease. There are also other antibody tests which are used if there are weak positives. To prevent false positives, or false negatives, a biopsy of the small intestine is needed.
If there is a positive result for the blood tests, you will be referred on to a specialist, known as a gastroenterologist, whereby you’ll have a couple of biopsies from a section of you small intestine (the second part of the duodenum). This will enable them to look at the villi in this section and assess the severity of damage to them, whether they are partially damaged or total atrophy (the villi are flattened) using modified Marsh classification. It is important to note that if damage has occurred, the villi can regenerate by following a gluten free diet. In children a biopsy in the second part of the duodenum is only necessary when the child comes up borderline for the antibodies in the blood test.
If you do get diagnosed with celiac disease, you may get more tests to check your iron, folate, B12, calcium and vitamin D levels.
Throughout this whole process you should not give up or stop eating gluten as mentioned before, as when you are checked for celiac disease they will look at if there is an antibody build up specific to celiac disease, and how your body reacts to the presence of gluten. So, if you don’t consume any gluten, you won’t have any antibodies which means you may not get diagnosed. If you have already eliminated gluten, you will need to reintroduce it, for the diagnosis to be accurate and this will be discussed with your health care professional.
For those with celiac disease, going gluten free isn’t a lifestyle choice but a necessity to maintain their health. There isn’t any cure to celiac disease, so it is treated by following a gluten free diet, and you may wish to consider calcium or vitamin supplementation, but this should be discussed with your doctor or if referred on, your dietitian. Following a gluten free diet will allow the small intestine in someone with celiac disease to repair and enable it to absorb nutrients again. It’s important to prevent cross contamination of products which contain gluten, with those that are gluten free.
Some individuals with celiac disease find that when they eat oats it can trigger their symptoms; this may be due to the oats being contaminated. Most can safely eat oats. It does contain a protein called avenin, which is similar to gluten, but most people with celiac disease are fine with this.
In the UK, for something to be labeled ‘gluten free’ it must contain less than 20 parts per million or less (20mg/kg), and gluten free can also be used for uncontaminated oats. It has been shown that this amount is not dangerous for those with celiac disease. Products which are ‘very low in gluten’ have a gluten content between 21-100 parts per million (21-100mg/kg), though this isn’t commonly used in the UK.
Always read the labels, on food packaging. Products need to have any allergens in the product highlighted, which means you can spot when a product contains, wheat, barley, rye or oats. On food packaging there is a ‘may contain’ statement whereby they’ll say if there is any risk that the product may be contaminated with gluten.
Even if when you consume gluten you don’t get any symptoms, but you have been diagnosed with celiac disease, you will be causing damage to your small intestine, due to it being an immune response that believes the gluten is a threat to your body. Continuing to eat gluten can increase your risk of complications including:
- Neurological conditions
- Vitamin and mineral deficiencies
In some cases when following a gluten free diet, some people do not feel better, and may still experience symptoms associated with celiac disease. This is known as nonresponsive celiac disease, and in most cases is actually due to the person still including foods that contain gluten in their diet. If gluten has completely been excluded, and there is no further damage to the small intestine wall lining, other causes of the symptoms may be investigated e.g. lactose intolerance. If you are still having symptoms, and there is further damage to the small intestines wall lining, and no accidental gluten is being consumed and the person is following a strict gluten free diet for up to a year, this is known as refractory celiac disease. This is very rare but following a gluten free diet is not helping to prevent small intestine damage. A complication of refractory celiac disease is increased in risk of certain gastrointestinal cancers. However, as mentioned before this condition is rare, and some individuals may be more sensitive to the presence of gluten that they may have accidentally consumed.
Cooking as a Celiac
Gluten Free and Vegan Mac and Cheese
As mentioned above it’s important to be aware and preventing cross contamination as much as possible to prevent damage to your small intestine. In shops now you can find a whole range of things which are suitable for those who cannot eat gluten, including flour, breads, pastas, and even cakes! Although, just because something that is gluten free doesn’t mean it is instantly healthy, so just keep an eye on the ingredients and nutritional information in premade meals. There are lots of recipes out there which are suitable when following a gluten free diet, but you can also swap things that contain gluten, to gluten free options. All of our recipes are suitable for those who need recipes which don’t contain gluten.
I hope you have enjoyed these blogs and please don’t forget that they’re not a replacement from medical advice from your health care practitioner. If you are concerned about something, including if you have celiac disease please talk to your dcotor.
Daisy, MSc PGDip ANutr,
Is a Registered Associate Nutritionist with a Master's Degree in Public Health Nutrition, and a Post Graduate Diploma in Eating Disorders and Clinical Nutrition, both of which are Association for Nutrition (AFN) accredited. She, also, has a BSc degree in Psychology and Cognitive Neuroscience; and has completed an AFN accredited Diet Specialist Nutrition course. Daisy has worked for an NHS funded project, the Diabetes Prevention Programme; and shadowed a nutritionist in Harley Street, London
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