Dealing With Doctors And Celiac

[Travis-Hiland]

Many posts refer to dealing with the frustration at how uninformed the medical community is to Celiac Disease, gluten-intolerance, and malabsorbtion issues. I thought I would post just one of my experiences with the issue.

Nine months ago, my wife was diagnosed with Celiac Sprue. Needless to say, this long overdue diagnosis (12yrs) finally provided the missing link to many chronic symptoms, including extremely severe iron-deficiency anemia, which countless inept physicians either failed to address or chose to ignore, commonly and obsurdly attributing her "severe" and chronic anemia to her normal menstrual cycles, usually with a single swift stroke of their magical diagnostic wands!

Sorry to digress...

Once her Celiac related malabsorbtion condition was diagnosed by our thoughtful and tenacious Nurse Practitioner, IV Iron Therapy was prescribed to help my wife on the road to recovery from years of iron-deficiency. However, due to critical mistakes made by the hospital pharmacy and the nurse on duty in the infusion lab, my wife nearly lost her life.

Iron with Dextran base was prescribed, which is the only iron-base formula that requires a test dose on 1st exposure due to the risk of anaphylactic shock and systemic failure.

The test dose was supposed to be 25mg DILUTED in 50-100 mL of NS and infused (DRIPPED) over 15-20 minutes. The test dose given my wife was NOT diluted and was injected directly into my wife's IV site, and therefore directly into the bloodstream. In the meantime, the remaining full dose in raw, undiluted form was being drawn up for injection into IV site. All contrary to my understanding of the intended prescription!

I told the nurses to STOP, DO NOT administer anything else until I made confirmations, then I was immediately on the phone to doctor’s office.

Within seconds of receiving the test dose my wife began to experience an escalation of frightening symptoms: First, an immediate sharp pin-prick itching all over her body, then fierce abdominal cramps, followed by a severe tightening of her chest with respiratory distress, before she finally went unconscious. All this transpired within just a few minutes of injection, all without the recommended anaphylaxis management kit on hand in the infusion lab. My wife was rushed to the ER, where she thankfully regained consciousness and was further stabilized.

Two weeks later, we tried again, this time changing the iron formula to a “gluconate-base” (Brand name: Ferrlecit). This second dose was diluted and infused over 5 hours/day for 8 days WITHOUT incident.

PLEASE, remember that credentials are NOT licenses for omniscience. DO NOT take your doctor or hospital or pharmacy at face value. Please require them to check and double check the prescription and its administration. PLEASE DO NOT be intimidated by your doctors and nurses, ASK QUESTIONS until you are comfortable and satisfied with the answers and DO NOT allow your practitioner to EVER dismiss your concerns.

Travis Hiland

[Fiddle-Faddle]

Thank you for posting this very important info. I am so glad your wife is finally okay.