When your body sees a foreign substance as a threat to your system, it can produce antibodies to protect you from it. When that substance is a particular food or other allergen, you’re said to have an allergy. Some common allergens include:
An allergic reaction can be mild. You may only experience minor itching or redness. Some people, though, will experience anaphylaxis. Anaphylaxis is a set of symptoms that can progress to life-threatening consequences.
A series of tests can usually determine the cause of your symptoms by identifying what you’re allergic to. Sometimes, though, your doctor will be unable to determine the cause. If this is the case, you’re said to have idiopathic anaphylaxis.
The symptoms of idiopathic anaphylaxis are the same as regular anaphylaxis. Symptoms can start out mild and may include:
- rash or hives
- an itchy or tingly feeling in your mouth
- slight swelling around your face
Mild symptoms may progress into more serious symptoms, such as:
- swelling in your throat, mouth, or lips
- severe abdominal pain
- nausea or vomiting
- difficulty breathing
- decrease in blood pressure
These symptoms can be life-threatening. Anaphylaxis isn’t likely to resolve on its own. It’s extremely important you get immediate care.
Your doctor will only give you a diagnosis of idiopathic anaphylaxis after extensive testing. Your allergy trigger may be external or internal.
An external trigger may refer to food or environmental allergens, such as pollen or dust. An internal trigger occurs when your body’s immune system reacts for an unknown reason. This is usually temporary, though it can take days, weeks, or longer for your body’s immune response to go back to normal.
Besides food, your doctor will also look to rule out insect stings, medication, and even exercise. Though less common, exercise can trigger anaphylaxis in certain instances. Some diseases can also mimic the symptoms of anaphylaxis. In rare instances, anaphylaxis can be associated with a condition known as mastocytosis.
You will not always be able to prevent idiopathic anaphylaxis. However, it can be treated and managed effectively.
If you’ve been diagnosed with idiopathic anaphylaxis, your doctor will likely prescribe injectable epinephrine, or an EpiPen, and ask that you carry it with you at all times. It will ensure you’re prepared. This is especially important since doctors aren’t sure exactly what might trigger your symptoms. If you identify that you’re having an anaphylactic reaction, you can self-inject the epinephrine, and then head to the emergency room.
If you experience attacks fairly frequently, your doctor might prescribe an oral steroid or oral antihistamine to help manage your condition.
Your doctor might also recommend you wear a medical alert bracelet. This can help other people know what to do if you have an attack in public. It’s also recommended that close friends and family know how to respond to this potentially scary situation.
Anaphylaxis can be very scary, especially the first time you experience it. That fear can be heightened when doctors aren’t able to find the cause of your severe reaction.
Idiopathic anaphylaxis is rare, and there’s a lot that doctors don’t know about what causes it or what may help prevent it. Because of this, finding support can help immensely. It can help you:
- connect with others who’ve been through a similar situation
- ask questions that you’ve found hard to find elsewhere
- hear about any new research that could affect your treatment plan
- feel less alone in experiencing this rare condition
You can search for online support groups on Facebook or other social media websites. Yahoo! Groups has an idiopathic anaphylaxis support group with close to 300 members. Just be cautious of any medical information given by anyone that’s not a healthcare professional.
The American Academy of Allergy, Asthma and Immunology and the World Allergy Organization may also provide useful information for you.
If you’re not finding the support you need, reach out to your allergist. They may be able to offer you additional resources or point you to a support group near you.