updated 2nd October 2024
Coeliac disease is a lifelong autoimmune condition caused by a reaction to ingesting gluten. If you have coeliac disease, eating gluten will cause damage to the small intestine, making it difficult for the body to absorb the nutrients it needs.
It’s estimated that 1 in 100 people in the UK have coeliac disease, but only 30% who are living with this autoimmune condition have been diagnosed.
Coeliac disease is genetic, and if a direct family member is diagnosed it increases the chance of other family members having the condition by 1 in 10. Therefore, it is recommended upon diagnosis that the rest of the family are screened.
Family testing recommendations normally only apply to grandparents, grandchildren, parents, siblings and children. However, I’ve known of a much wider circle of relations within families having the condition. Such as aunties, uncles, niece, nephews and cousins.
Coeliac disease can manifest at any time so family testing should be repeated periodically, even when no symptoms are displayed.
1 in 4 people diagnosed with IBS, are diagnosed with coeliac at a later date. Coeliac disease should always be ruled out by screening before gluten is removed for any reason, in particular IBS.
As coeliac is a multi-system disorder affecting any part of the body, diagnosis can sometimes take some time to establish as symptoms can be so varied.
You can currently only be accurately diagnosed with coeliac disease whilst gluten is present in the diet.
Coeliac disease is also associated with other autoimmune conditions such as, Type 1 Diabetes, Autoimmune Thyroid disease. Further research into connections to other autoimmune conditions is ongoing.
Undiagnosed coeliac disease and non-compliance to a gluten free diet can cause more serious health complications; infertility, anemia, osteoporosis and bowel cancer. (If you have had family members that have been affected in the past, or present with any of these conditions but not diagnosed with coeliac disease, it would be good for yourself and your family to be tested for coeliac disease.
People with coeliac disease are less able to produce antibodies to fight infections and are advised to have a vaccination against pneumococcal infection (repeat booster every five years), meningitis A,C,W,Y and flu.
Once diagnosed, the only treatment for coeliac disease is a strict gluten free diet for life. It is important to maintain your gluten free diet whether you are symptomatic or not. A marble sized piece of bread is enough to cause damage to your gut. You should feel better within a few weeks of following a gluten free diet. The time it takes for your gut to heal completely can vary from 6 months to 5 years.
Annual reviews should be maintained and carried out by your Specialist or GP after being diagnosed with coeliac disease.
Research is ongoing to find a vaccine for coeliac disease. How GOOD would that be?!!
There’s lots more information about coeliac disease here
Dermatitis Herpetiformis (DH)
Dermatitis Herpetiformis is a skin condition linked to coeliac.
DH occurs as a rash – red raised patches, usually with blisters, very itchy and generally, on knees, buttocks, elbows and the face, but can affect any part of the skin – very often symmetrically on the body i.e. on both knees.
DH affects 1 in 3,300.
DH is diagnosed by an initial skin biopsy and confirmed by a gut biopsy. To ensure of an accurate test result, the skin biopsy should be taken from an area unaffected directly by the rash.
As with coeliac disease, once diagnosed with DH the treatment is to follow a strict gluten free diet for life.
Lots more information about DH here
Hope you found this helpful. Thanks for reading!
Liz x
Always chat to your GP/Specialist about any health concerns you may have. Never be afraid to ask more questions, repeat appointments or get a second opinion if you feel something isn’t quite right.