Life with Food Allergies: The Doctor

What I wish I knew…

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The fact is that you are dependent upon a doctor for a food allergy diagnosis.  However, do not allow a doctor to dismiss you when you have legitimate concerns and knowledge.  Do your homework and be prepared!

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My nephew experienced what appeared to be the first stages of a severe allergic reaction a few months back.  He had hives, swelling, itchiness, and bright red all over his body.  But it didn’t just happen one time, but twice.  I was in constant communication with my sister-in-law during this time trying to encourage her and give her advice.  I was one “stage” away from advising her to take him to the ER.  It was scary!

It took about a week before the reaction symptoms fully diminished.  I strongly encouraged my sister-in-law that my nephew be seen as soon as possible by an allergist and get tested for at least the top allergens, if not a few more as well.  He was tested after the symptoms finally subsided and his body was free of all antihistamine medication.  But, guess what?  He did not test positive for a single allergy.  Phew!  That was a relief, but still very strange considering his reactions.

I share this story with you because this was all very new to my sister-in-law.  Having had a few bad experiences with doctors and hearing similar stories from others, I felt as though she needed direction on how to approach the doctor with as much detail and knowledge as possible.  Some of you may have been or are currently struggling with a relationship with your doctor.

Based upon my experience, here is a list of recommendations as you relate to doctors in a life with food allergies:

  1. Keep a journal of symptoms and food eaten (consider keeping a file of food labels if necessary).  When you get in a doctor’s office, it is often hard to remember all the details.
  2. Keep a journal of medication given and response to medication.
  3. Write questions/concerns down.
  4. Doctors  are well aware that most of us have internet-based medical degrees 🙂  Be respectful of their role as your (your child’s) physician.
  5. While being respectful, don’t be dumb.  Go armed with as much information as you can.  You don’t need to shove it in the doctor’s face, but use it  as a means of standing up for yourself.
  6. Don’t back down from what you believe to be a true allergy (good reason for having the journal), if a doctor tries to dismiss you.  There are still many doctors out there who do not believe food allergies are a real and present danger.
  7. If one test gives you results that seem odd, ask for another test to confirm the result.  It is a fact that all allergy tests have a certain percentage of false positives and negatives.  A clinical challenge is the only false-free test, but must be used with caution and only in the presence of a doctor with emergency medication present.

You can read prior posts about my son’s experience with doctors and a recent false negative result to egg.

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Is there anything that you can add to this list as we all interact with the medical community in this life with food allergies?

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The Life with Food Allergies series is based on my experience and what I wish I knew 7 years ago when we started down this road.  This information is not to replace that  of trained medical professionals.  Please use accordingly.

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2 Responses to Life with Food Allergies: The Doctor

  1. Becki says:

    Negative tests do not always mean negative! My son Colton had THREE negative tests (2 blood, 1 skin) before we found out his wheat and egg white allergy. He had hives every time he didnt get his allergy medicine, and one case warranted a trip to the er. His allergy doc said it was because of his age – allergy tests commonly have false negatives with kids under 4 years old. Depending on your nephew’s age, I would get him tested again. And keep a detailed food journal to try to figure it out in the mean time. Hives dont happen without a reason….

    • Cook says:

      I completely agree with you. I cautioned my sister-in-law as she goes forward to always be on the lookout and have benadryl. My son has had both false negatives and false positives. It’s the way it goes.

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