Going to a hospital for any procedure is stressful, but if you have Celiac Disease or Non-Celiac Gluten Sensitivities it can be downright dangerous. My husband had to have a procedure yesterday that required General Anesthesia and he had made sure to let everyone know at the Pre-operative appointment that he had Celiac Disease, it was in his records. We arrived at the Hospital at 6am and I was “prepared’, or so I thought. This post is not simply about sharing my experience, but about empowering you, should you find yourself in a similar situation.
We completed the paper work and were taken back to an area for outpatient pre and post operative procedures. I knew that the hospital would not have appropriate gluten free foods for my husband so I brought a cooler that contained a thermos of Bone Broth, Turkey Breast Chunks, Raw Cheese, an Organic Banana, Organic Dried Apricots (unsulphered), Coconut Water, Filtered Water, and some homemade Sauerkraut. This was an Outpatient Procedure but I wanted to be prepared with nutrient dense foods because I knew when the anesthesia wore off he would be hungry. I watched a nice lady wheeling a cart through the Ward that had Ginger Ale, small plastic bottles of water, a Coffee Carafe and little containers of Coffee Mate, Lorna Doone Cookies, Belvita Bars, and a few other gluten filled items that I could not make out (no fresh fruit in sight). My husband said “I’m glad you brought real food”.
Our Nurse came in and introduced herself, I immediately asked if my husbands chart stated that he had Celiac Disease. She checked and replied “yes”, I felt a little more comfortable until she pulled out a set of “Nitrile Gloves with Max Oat+”, great for those with Latex Allergies but not so great if you have Celiac Disease. I told the Nurse she couldn’t use them because they contained gluten and she said it was the only type they had. I kicked myself in the butt for not bringing Nitrile Gloves from home and made a mental note to share this information with you. You can purchase a box of Nitrile Gloves at most drug stores or through Amazon, keep the box sealed and buy a size Medium as that will fit most hands. The Nurse and I found a work around so that the Nurse did not touch my husband with the glove…phew! Next up was a vial of medication that contained gluten, and a roll of gluten laden tape for an IV, Uggh! We had to find workarounds for these items as well, although the secondary tape ended up containing gluten. The Nurse was very accommodating however, this is a pervasive problem as most medical professionals are not aware that many medications, tapes, and gloves contain gluten. The Nurse asked which medication could be substituted and I was prepared having brought a list of Gluten Free Medications (www.glutenfreedrugs.com). Not every medication is on this list, but it is a good starting point. I was not belligerent, I merely asked if we could substitute the medication with one that was gluten free. She said “I didn’t know medication contained gluten, I just thought your husband had brain fog from gluten, isn’t that the worst of it”. Now it was time to educate the nurse on the damage of gluten for someone with Celiac Disease. She made extra notes in my husbands chart and ordered a different medication. I will skip some of the gory details but when she started the IV Saline Drip my husband became woozy and passed out. My husband front loads his food, eating a large breakfast so I asked that once we got him stabilized that the nurse order what is referred to as a “D5 Drip”, not the greatest if you have Celiac Disease and are sensitive to corn, but the lesser of the evils. A D5 drip is a Saline Drip that contains Glucose/Dextrose. Hubby began perking up within 5 minutes and the Anesthesiologist arrived to discuss the medications that she would be using during the procedure. The Nurse explained that hubby had passed out and I asked our wonderful Anesthesiologist to take extra precautions since hubby wanted to go through with the procedure as scheduled. I reviewed the medications that would be used and we swapped out one that was gluten based. The Anesthesiologist also added a gluten free anti-nausea medication to the cocktail, just in case there were trace amounts of gluten in any of the medications.
The procedure went well, but the waiting was gut wrenching! Finally, I was allowed to go back to see my husband. The first thing he said was “I’m really hungry”, a good sign! I asked the Post Operative Nurse what he could have and she said liquids. The Nurse said “He didn’t want the Ginger Ale or Orange Juice that I offered him”. I pulled out the thermos of bone broth and he drank all of it. He said he was still hungry so after waiting 15 minutes I asked if he could have solids and was given the O.K. Next up was the turkey and a few pieces of raw cheese. His color was better and he was getting agitated because he wanted to go home. 1 hour later after being checked out by the Surgeon we were allowed to leave the hospital. My husband held my hand and looked into my eyes. He said “Thank you for being here with me today and being my advocate, I couldn’t have done this without you”. Yes, I began to get teary eyed, he is the love of my life and I can’t imagine not being there for him, we are a team. Today hubby is resting although he has a few angry rashes where the gluten tape was on his skin. He is very tired, but slept through the night and has not needed any of the gluten free pain medication. I apologize if this is not the clearest post I have ever written, but as you can imagine I am just a little tired. There are other things that I am sure that I have not mentioned, but this information will help you help your loved one if the need arises.
Things to Remember During a Hospital Stay
- Tell everyone/anyone who walks into the room that your loved one has Celiac Disease and explain what that means including your loved one’s symptoms.
- Bring appropriate food so that your loved one can eat safely during recovery, and bring extra food for yourself.
- Bring a printout of the Gluten Free Medications (www.glutenfreedrugs.com) so that you can check the list against the medications that they are planning to give your loved one.
- Be an advocate for your loved one, even if it means getting belligerent with the Doctors or Nurses.
- Bring Nitrile Gloves, Sized Medium in a sealed box. Most hospitals have switched to Nitrile but it’s best to err on the side of caution especially if you have a latex allergy.