How do I Help My 18-yo Daugher Adjust to Celiac Disease?

Q. I am a Registered Dietitian working in a Burbank hospital. My daughter just got diagnosed with Celiac Disease. She is 18. We originally biopsied her 5 years ago and she tested negative. A recent biopsy was positive. We are adjusting to the diet change and fortunately she has a dietitan Mom who is able to navigate thru all of the conflicting information available. I know you mentioned your son was diagnosed years ago. Any advice on helping my daughter adjust? She is in college and lives at home. She doesn't want to eat at restaurants because of the embarrassment of having to question the waiters. It's only been a month, but I want her to start taking ownership of her condition and not relying on Mom so much. Also, can you recommend a gastroenterolist in Los Angeles specializing in Celiac? Thanks so much.

A. Here's what I'd suggest:
  • Make an appointment with a dietitian who specializes in celiac disease, so that your daughter really hears the information without relying on you to filter the information. (I readily admit that when my son was diagnosed with celiac disease over 10 years,  I was completely overwhelmed with learning the details of the gluten-free diet, even though I was a dietitian at the time!).  It was one of my motivations to get educated in celiac disease and treatment.  (Check out this link to find a dietitian specialist in your area Finding Dietitians that Specializes in Celiac Disease)
  • Re-assure your daughter that it is normal to feel overwhelmed in the beginning and that she will be feeling better eating a gluten-free diet.
  • Restaurant Strategies:  Since your daughter is inexperienced at ordering gluten-free from a standard menu, it's understandable that she feels awkward.  Have her call the restauarant a head of time and ask the necessary questions.  I'd also suggest dining during non-rush hours so she will have the wait-staff's attention.  Many restaurants have gluten-free options (See Gluten-Free Restaurants).  Also, to simplify the ordering process, I tell the wait staff, my son has an "allergy to wheat, rye, oats and barely and any of their derivatives such as soy sauce".  While celiac disease is an autoimmune disorder, not an allergy, this request has really cut down on errors from the restaurants.  (It was advice given to me by an executive in the restaurant industry, because "allergy" has a legal conotation and gets the needed attention to details).
  • Join Teen/Young Adult Celiac Support Groups: Since you are in the LA area, I'd join the Celiac Disease Foundation, they have a wealth of information including support groups.
  • LA Gastroenterologist:  I highly recommend Michelle Pietzak, MD or Richard Mathes, MD.  There are many more qualified physicians, but I have worked with these particular doctors over the years.  Here is a resource of recommended physicians provided by celiac.com.

 
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