Coming to terms with your condition

Hazel Jacklin’s coeliac disease is asymptomatic but changes her life nevertheless

Hazel Jacklin, 49, works in research for a consultancy business that supports pharmaceutical and biotech companies. She is apt at understanding different clinical conditions, so it is no surprise that when she started feeling fatigue, foot cramps and heart palpitations she assumed they were associated with her previously diagnosed anemia. However, after being recommended an endoscopy and colonoscopy, she was diagnosed with small intestine villi damage. Although most of what she was feeling were common symptoms of anemia, the intestinal damage was not.

“I was found to be anemic when I went to give blood. After initial basic blood tests which confirmed iron-deficient anaemia, I was referred for an endoscopy and colonoscopy. The endoscopy biopsies demonstrated significant villi damage in my small intestines,” she explains.

Four years ago, Hazel Jacklin was diagnosed with coeliac disease which is a non-IgE-mediated disease of the small intestine triggered by the ingestion of gluten. Once she ingests gluten, there is a flattening of the small intestine mucosa that can impair the absorption of nutrients. The damage of the villi in the small intestine is associated with diarrhea, weight loss and general weakness.

Although Hazel experienced the weight loss and weakness, her coeliac disease is mostly asymptomatic which means that she will be damaging her body every time she ingests gluten but will not realise this.

Her situation as a coeliac disease patient is bittersweet: although she does not present any drastic effects from ingesting gluten, she must be extra careful with the food she ingests.

“I don’t have many symptoms per se. I still appear to be mostly silent. I could be regularly visiting the same café that is not as careful as they seem or buying a sauce without noticing the ingredients have changed – and I wouldn’t have a clue. But my body is still being damaged,” she says.

Having this disease has impaired her life in many ways. From being afraid of cross contamination to resentment in relation to food.

“Cross contamination issues came as a big shock. There is a constant background anxiety about accidentally poisoning myself. In the early years there was also the huge sense of loss and resentment in relation to food that I could no longer eat or enjoy. And learning to read labels and make sensible decisions on whether a product is safe for me was a very steep learning curve.”

However, the worst part are the frictions in her daily life, such as having to explain herself to friends and colleagues and feeling anxious when ordering a meal at a restaurants.

“I try to avoid eating at friends’ houses. But I feel most comfortable if they understand and are not offended by me wishing to bring my own food. I have a couple of friends who understand and always take the time to check everything with me. Eating out in restaurants is mostly just stressful and uncomfortable. If eating with a group, then I hate having to always dictate where we go. I am always anxious that someone in the group just thinks I am making more of a fuss than is necessary. Work-dos are particularly nerve-wracking – I would rather avoid those when I can. My holiday preplanning has increased enormously as I need to spend ages locating and researching safe places to eat, and then contacting every location to confirm their allergy awareness and procedures,” she says.

From her experience she has learned that it is best to sometimes skip a meal and wait until you can safely eat at home. But more importantly, that you should just come to terms with your condition and not be resentful. In the end, you should not pretend that everything is fine.

“I think if you don’t let yourself have this you just end up being angry at everyone else – for not understanding, for not taking it seriously enough, for not providing safe food – and it’s no fun being angry and scared all the time. I strongly feel that the psychological processing of the issues and implications of an allergy/coeliac diagnosis is vital to ongoing adherence and well being. And I really don’t think that this (like most mental health issues) is handled well in our healthcare system,” she explains.