It took over a decade of living with symptoms before Tobias (36), who lives near Stuttgart, Germany, finally had a definitive diagnosis of eosinophilic esophagitis (EoE). A diagnosis which paved the way to treatment, bringing him physical and emotional relief. Now Tobias is a valuable resource for others coming to terms with a diagnosis of EoE.
Adrift in the deep sea
Tobias first started experiencing symptoms between the ages of 18 and 20. Tobias relayed his symptoms to his doctor who admitted that he didn’t know the cause nor where to refer him.
After this unsatisfactory encounter, Tobias continued to have trouble swallowing and frightening prolonged chest pains on a near weekly basis. He managed his symptoms as best he could by drinking plenty of fluids while eating in order to guide his food to “get down into the stomach”. However, in 2013, Tobias was hospitalized after a severe episode at work.
“Medics removed the blockage by cutting it into little pieces to remove it.”
Later, he was discharged from the hospital with no further explanation or investigation as to why the blockage occurred.
Tobias questioned his doctors to try to find out what the problem was, but no answers were forthcoming. Tobias turned to the internet in an attempt to find his own answers. When he approached his doctor to ask if his symptoms may be indicative of steakhouse syndrome (also known as Schatzki ring), his doctor finally referred Tobias to a specialist.
Steakhouse syndrome or Schatzki ring is when impaction of the esophagus occurs after eating food, especially meat, without adequate chewing. Symptoms can include chest pain, drooling, difficulty swallowing, coughing, and choking.
Diagnosis is only the beginning
Tobias eventually received a confirmed diagnosis of EoE in 2017, but this proved to be just the beginning. At the point of diagnosis, Tobias received little information and limited allergy testing. Neither his doctor nor specialist knew much about the condition leaving Tobias feeling very much adrift without answers.
Once again Tobias turned to the internet in his continued quest for answers and this time found a specialist in Hamburg who understood EoE particularly well. Tobias was able to access research papers written by this specialist and learn first-hand about his condition.
Tobias then travelled for a specialist appointment only to be frustrated by conflicting advice. The consultant told him that he did not have EoE!
Further tests confirmed the original EoE diagnosis was correct, but the delay and frustration left Tobias feeling like he was “swimming in the deep sea” with little support.
Tobias believes that enhanced training of healthcare professionals is essential. Disjointed medical care and a lack of knowledge hindered him from receiving adequate care, particularly in the earlier years. Having experienced first-hand the impact of poorly coordinated care, Tobias would like primary doctors to be better educated on EoE.
Tobias does feel that specialists today, at least in Germany, have a better understanding of EoE than they did when his journey started. Now, the main challenge for patients remains receiving an appropriate referral to access specialists. He believes that primary care doctors need to understand when to refer patients to a specialist, opening the pathway to expert care.
Disease management and treatment
Tobias primarily manages his EoE with an elimination diet. He has eliminated wheat and dairy which helps significantly with disease management. Currently, Tobias is monitored via an annual checkup with his specialist but feels that closer follow ups would be beneficial. Additional checkups may allow for additional testing and could help long-term with disease management.
“A year between hospital checks can be too long.”
In addition to dietary reform, Tobias takes medication twice daily— after breakfast and dinner. This combination of oral medication and his elimination diet has been successful for Tobias. He now is able to live with few symptoms.
Tobias recognizes that some patients face difficulties accessing the treatment because their insurance will not pay for the treatment (particularly in Austria) and the medication is too expensive to afford out of pocket. It is an added layer of anxiety for patients who find themselves in this situation.
Finding a supportive community
Tobias has found a Facebook support group based in Germany (primarily a German-speaking group), which although relatively small in numbers, he enjoys being a part of. He describes himself as one of the more experienced members and believes the group to be particularly useful for those recently diagnosed. Despite being three years post diagnosis, Tobias derives great value from being part of this supportive community and enjoys the wealth of support and knowledge sharing that comes from it. A perfect example of this is when many people shared that a high pollen count worsened symptoms. This helped members of the community to better understand the impact that environmental factors can have on their condition. This type of experience sharing is invaluable to patients and has the power to inform future research priorities.
Living with EoE daily challenges
Going out for lunch is something that most take for granted, but for Tobias this is one of his biggest challenges.
“It’s difficult to go to lunch with me!”
Like many people with EoE, Tobias must eat very slowly to ensure his food doesn’t get stuck in his throat. Often his friends and family are finished long before him and he feels bad when they are left waiting. And, while most restaurants cater for people with food allergies, unclear menus can mean Tobias will opt for the “safe” option, usually a salad, which is definitely not his first choice!
Travel, too, has become a source of anxiety. Tobias reminisced about a trip to Marrakech, Morocco, where he enjoyed eating at a street market—something he would never do now.
“Eating food when you don’t know what all of the ingredients are and with the ever-present threat of having a reaction where you can’t easily communicate your health needs, or access appropriate medication is just too risky.”
Tobias has found a way to live with EoE on his own terms and is looking forward to planning his wedding after coronavirus restrictions are lifted.
Tobias was able to expedite his own diagnostic journey because of his determination to understand everything he could about EoE. Today, he is a valuable source of information for those working in the healthcare industry, but more importantly, for those patients receiving a new diagnosis and starting their own journey with EoE.