Why Lupus Patients Should Work With a Dietitian

After a recent bout with pancreatitis ended with a 3-day hospital stay, I was once again forced to re-examine my current eating habits. Along with trying to eat a generally healthy diet, I now have to also consider what foods won’t aggravate my lupus, swell my joints, tax my kidneys, raise my blood pressure, raise my potassium levels into the danger zone, make me gain weight, help bolster my weakening bones and not inflame my pancreas. It’s enough to turn a girl’s hair white from stress.

Unfortunately, this is a common problem for lupus patients. Figuring out the best eating plan for you is one of the trickier aspects of coping with lupus or any other auto-immune illness. Not only will every person you ask have their opinions (whether you want to hear them or not), but the internet abounds with every crazy eating plan man can possibly think of. When your brain is melting from information overload or when you simply want someone to work one-on-one with you and your needs, working with a specialist might be the answer.

What is a Dietitian?

A dietitian is basically someone trained in the science of eating and nutrition (yep, you read right – eating is a science). Like a doctor, they receive clinical training and certifications, can specialize in various areas (such as childhood nutrition or renal nutrition) and must pass national exams in order to practice. In the US, dietitians get their credentials through the Commission on Dietetic Registration.

Dietitian vs Nutritionist

While many dietitians may call themselves nutritionists, not all nutritionists are registered dietitians. Duly registered dietitians earn a BA, take foundational coursework and must complete approved and supervised practice programs. They can only be certified through the Commission on Dietetic Registration. Passing the Commission’s test earns them the legally protected “RD” or “RDN” designation. The world’s largest organization for nutrition specialists is the Academy of Nutrition and Dietetics, where you can read more about all the qualifications that a registered dietitian must have in order to legally practice.

A generic nutritionist, on the other hand, can have little to no formal training or official credentials. While some states have laws to regulate who opens shop as a nutritionist, not all states do – meaning anyone can hang a shingle and advertise themselves as a nutritionist. That does not mean that all generic nutritionists are dangerous – some may have all the equivalent training of an RD, but simply might not want to pay the associated costs of being registered. However, exercise caution and thoroughly research the background and training of any nutritionist you plan to see. Or, if you want to save yourself the trouble, hop on over to the Academy of Nutrition and Dietetics web page or the Commission on Dietetic Registration site to look up a fully registered dietitian in your area.

Reasons to work with Dietitian

  • Getting your diet information from the internet is dangerous. Since anybody can create a webpage, sources for accurate information can be tricky to find. And while common sense and due diligence can help you sort out the helpful info from the potentially dangerous stuff, you can still end up tip toeing through a mine field of vague anecdotes and unsupported, paranoid rumors.
  • Every patient is different. Many diet and exercise plans found online or in books are targeted to a certain audience – and if that audience is not you, then you can setting yourself up for failure, or even more health problems. What works for another lupus patient in your support group might not work for your specific combination of medications, treatments, symptoms and needs.
  • Books and websites are no substitute for personal, individual attention. For example, while a high-protein diet can help someone lose weight, if you have severe kidney problems then all that extra protein can force your already-worn kidneys to work even harder. If you have IBS or Crohn’s disease, high fiber foods may irritate your stomach, while in a healthy person, extra fiber can help digestion. One of my diet caveats is that I already have a high level of potassium in my blood. While high potassium in a healthy person is a great thing, in my case that level can quickly shoot in the danger zone if I eat high-potassium foods. A dietitian can help you sort through multiple conditions and create a truly tailored eating plan.
  • Flexibility and support. If you hate the recipes you’re using or have a big family gathering coming up, your dietitian can help you adjust your plan and keep you on track, which can help you make your eating changes stick for the long-term. Many will work with you to find a workable compromise between what you need to eat and what you like to eat – leaving you no excuses for throwing in the towel.

However, a dietician is not your kidney, heart or lupus doctor – keep in mind that they’ll have the same challenges juggling multiple conditions that anyone else would. In our quest for answers, it’s easy to forget that our health care team are people too, complete with biases and limitations.

Have you worked with a registered dietitian? How was the experience? Do you have any tips for seeing one?

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One thought on “Why Lupus Patients Should Work With a Dietitian

  1. This was a point that I very much stressed in an article I posted about a year ago. In the post, I discussed why some people living with this autoimmune disease have chosen to adopt the paleo or modern day caveman diet. I totally agree with the fact that getting dietary information solely of the internet can be dangerous and thus it is imperative that lupus patients work with their doctor and dietician before making any change to their diet.

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