<<Disclaimer: Verify this information before applying it to your situation.>>

Since being diagnosed with celiac disease, I have been hospitalized three times, each time at the same hospital.

In my experience, it is crucial to do five things:
1.  Take advantage of patient advocate programs to make sure there is someone to speak for you and bring all the involved departments to communicate with each other.
2.  Introduce yourself to the dieticians on duty.  If necessary, ask the supervising hall nurse to arrange an appointment with the dietician.
3.  Inform each shift of nurses of your dietary needs.
4.  Bring a store of food to use when taking medicines in the middle of the night or to tide you over when meals are delayed or you have to refuse them.
5.  Call your attending physician, the patient advocate, and the supervising nurse if anyone is refusing to feed you.

I did not avail myself of the services of a patient advocate in my stays, but will contact that office the next time I need to be in the hospital.

Here is how my stays went:

I initially chose to shift my care to this hospital because of its reputation for understanding and supporting the gluten free requirements of those diagnosed with gluten intolerance.  That turned out to be true in general, but not for each individual nurse, resident, nutrition staff member, etc.

My first stay went moderately well, with some delays as communication was established on the issue between the doctor, the nurses, and the nutrition department.  A hall nurse cut through this problem for me by arranging for a dietician to interview me on my needs.

The second stay was difficult because it occurred over a holiday weekend and the dieticians were off.  The staff of the nutrition department very conscientiously reviewed my meal selections, but then refused to send me requested items I knew were gluten free from my previous stay or substituted gluten containing items at the last minute without reading my slip.  Mostly they sent me the same awful creamed rice cereal, prompting me to send a note saying that I could not eat rice for every meal.  That note got attention.  In this stay,  I relied heavily on the hall nurses to help me negotiate meals with the nutrition department.  This meant that attention to my needs was inconsistent from shift to shift.  Both the nursing staff and the nutrition department staff changed with every shift and did not repeat at any shift over the holiday, meaning I had to start over with each shift change.

The third stay was wonderful because I had in the meantime personally met one of the dieticians outside the hospital and made a point of calling her directly when I was admitted on an emergency basis.  Even though she did not work every day that I was in the hospital, she did ensure that my slips were generally recognized by the nutrition department staff.  She also made sure that the staff knew not to override my requests.  Most importantly, she encouraged me to ignore the checklist format of the request slips, to write instructions all over them, to write in standard items not listed on the daily menu, and to request greater quantities of the things I could eat to keep my calorie levels up.  For example, instead of a hamburger on a bun, I ordered two plain hamburger patties.  I ordered grape juice with every meal in addition to whatever other beverages were offered (and frequently saved the juice for snack times.)  I ordered ice cream or ices with every lunch and dinner and decided upon receiving the meal whether or not to eat them (mostly depending on whether a mistake had been made and I had to send the rest of the meal back.)

It is very hard to be confined to bed, in pain, floating a bit from the pain medication, and generally miserable and through all that have to educate hospital staff on the importance of meeting dietary needs.  I've done it with help and I've done it alone and I don't want to do it alone again!

Mary Ann

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