Managing Chronic Kidney Disease (CKD) is a journey that requires careful attention to many aspects of your health, and diet is one of the most important factors. A proper diet can help slow the progression of the disease, reduce symptoms, and improve your overall quality of life. However, CKD nutrition can be highly individualized and complex, which is why working with a dietitian who specializes in kidney health is essential.
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This comprehensive guide will explain the benefits of seeing a CKD dietitian, practical steps to find the best dietitian for your needs, and how to navigate insurance and costs.
The Role of Nutrition in CKD
Your kidneys are responsible for filtering waste, balancing electrolytes, and regulating fluid levels in your body. As kidney function declines, your body less able to maintain these balances, leading to challenges like high blood pressure, fluid retention, and imbalances in key nutrients like potassium and phosphorus. This is where nutrition plays a big role:
- Slowing Disease Progression: Certain dietary adjustments can reduce the strain on your kidneys, helping to preserve their remaining function.
- Managing Symptoms: Tailored nutrition can alleviate common CKD symptoms, such as fatigue, swelling, and high blood pressure.
- Preventing Complications: CKD increases the risk of complications like bone disease, cardiovascular issues, and anemia. Nutrition can play a significant role in preventing these outcomes.
Do I need a dietitian if I’m already seeing a nephrologist?
Yes! While doctors are essential in managing Chronic Kidney Disease (CKD), their focus is typically on monitoring and preserving kidney function, managing medications, and addressing complications such as high blood pressure or anemia. However, when it comes to nutrition, most nephrologists don’t have the time or specialized training to provide the detailed guidance most patients need and want. This is where a dietitian who specializes in CKD becomes invaluable.
Dietitians complement your nephrologist’s care by focusing on the day-to-day decisions that directly impact your kidneys and overall health. For example, they can help you interpret lab results like potassium, phosphorus, or sodium levels and translate them into actionable dietary changes. A nephrologist might tell you that your potassium is too high, but a dietitian will work with you to identify the less obvious causes of that high potassium level like constipation or excessive potassium additives in your diet. They also provide strategies to manage coexisting conditions like diabetes or high blood pressure, ensuring your diet supports all aspects of your health.
How often should I see a dietitian?
The frequency with which you see a dietitian depends on your stage of Chronic Kidney Disease (CKD), your individual health needs, and the complexity of your condition. In general, patients benefit from an initial series of sessions to establish a strong foundation for managing their diet. This often involves two to three visits within the first few months to review various nutrients of concern, assess eating habits, review labwork, and develop a personalized nutrition plan. These early sessions are crucial for addressing immediate dietary concerns and building a clear strategy tailored to your needs.
After this initial phase, most patients benefit from follow-up appointments after each set of labwork – typically every 3-6 months. These follow-ups help to see if any tweaks or changes should be made to your nutrition plan. If you experience any issues in between labs such as weight loss, food intolerances, constipation, etc – you may want to book a follow-up before the next set of labs.
For patients with more advanced CKD or those managing additional conditions like diabetes or heart disease, more frequent visits—such as monthly check-ins—may be beneficial.
Why finding a dietitian specializing in kidney nutrition is important
One of the most important aspects of finding the right dietitian is to find a dietitian that specializes in kidney disease. There are many nutrition specialties that dietitians can focus on:
Becoming an expert in any of these topics can take years of training and experience. Unfortunately, school does not adequately prepare students to specialize in kidney nutrition, so work experience where dietitians can learn from other experienced dietitians and nephrology providers is imperative.
A dietitian that specializes in kidney nutrition:
- Will be better equipped to analyze your labwork and history to identify underlying causes of any out of range labs.
- Will be more proactive in helping you align your food choices to maximize the health of your kidneys and try to prevent nutrition related complications
- Will be knowledgeable about other common conditions that people with CKD experience such as gout, hyperparathyroidism, diabetes, hypertension, mineral bone disease, and anemia and how to tie in the nutrition for CKD and these other conditions
- Will have more tools to support you such as sample meal plans, food recommendations, supplement recommendations, and educational materials
- Will be able to accurately answer your questions about nutrition and CKD
How to Find a CKD Dietitian
The first place I would check is here at Kidney Foodie. Lauren Gleason is in network with Aetna, Anthem/BCBS, Cigna, Medicare, and UHC. She takes clients from California, Colorado, Florida, Georgia, Hawaii, Idaho, New York, Massachusetts, Michigan, Oklahoma, Oregon, Pennsylvania, Texas, Utah, USVI, Virginia, Wisconsin, and Washington. Request an appointment here.
Otherwise, keep reading!
Ask Your Nephrologist
The next place I recommend is your nephrologist. Many (but not all) nephrologists have dietitians that they refer patients to. These will typically be dietitians that they believe are well-versed in CKD nutrition. They are also often dietitians that accept insurance since many doctors prefer not to send their patients to specialists that will be cost a lot.
National Kidney Foundation CKD Dietitian Database
If your nephrologist doesn’t have a recommendation, the next best place to look is the National Kidney Foundation (NKF) CKD Dietitian Directory.
What I like about this directory:
- You can search by state (for the most part), including telehealth
- The dietitians list out the insurance that they accept
- It includes the dietitian’s website, so you can easily check to see if they focus on kidney nutrition
- Dietitians can list their credentials (which also gives a clue about whether they specialize in CKD)
Tips for using this directory:
- Find your region first, and then click on your state to find an alphabetical listing of dietitians who are located in your state
- Be open to telehealth – if there are not many options in your state, visit the telehealth section to see if there are dietitians in other states who can work with you.
- Be aware that on the telehealth page, dietitians don’t always list out all the states where they can see patients. Many states don’t require a dietitian to have a state license to see patient in their state. If you live in California, Colorado, Hawaii, Idaho, New York, Massachusetts, Michigan, Oklahoma, Oregon, Pennsylvania, Texas, Utah, USVI, Virginia, Wisconsin, or Washington, I recommend looking at ALL of the telehealth providers even if they don’t list your state because they may still be able to work with you.
- Always check their website to see if they focus on CKD. Be weary of dietitians that list a lot of things they specialize in. A jack of all trades is a master of none! Unfortunately, there are many dietitians listed in the directory that do not actually focus on CKD.
- Dietitians that have “CSR” after their name or the words “kidney” or “renal” in their website are more likely to be dietitians that focus on kidney nutrition
- Verify with your insurance that they are in network. A dietitian may be contracted with your insurance company but not be in network with all plans. Always double-check!
- If you find a dietitian that you like that does not accept your insurance, consider asking if they are open to a Single Case Agreement. This is where your insurance company covers visits with out of network providers. More info below in the insurance section.
Academy of Nutrition and Dietetics
The Academy of Nutrition and Dietetics offers a directory of dietitians where you can filter by specialty. I don’t like this database nearly as much as the NKF database because it does not list out the specific insurance companies that the dietitian works with though.
Tips for using this directory:
- Be sure to filter by specialty. Choose “Kidney Disease and Renal”
- Always check their website to see if they focus on CKD. Be weary of dietitians that list a lot of things they specialize in. A jack of all trades is a master of none! Unfortunately, there are many dietitians listed in the directory that do not actually focus on CKD.
- Dietitians that have “CSR” after their name or the words “kidney” or “renal” in their website are more likely to be dietitians that focus on kidney nutrition
- Be open to telehealth – if there are not many options in your state, visit the telehealth section to see if there are dietitians in other states who can work with you.
Your insurance provider directory
Your insurance company’s directory of provider’s will ensure that you are only looking at providers who accept your insurance. Unfortunately, there are some drawbacks:
- You can’t filter by specialty
- They don’t always include a dietitian’s website
Tips for using your insurance directory:
- Look for their website so you can see what they specialize in. You can usually google their phone number or their name + the word dietitian to pull up a website. Be weary of dietitians that list a lot of things they specialize in. A jack of all trades is a master of none!
- Expand your radius. If you are open to telehealth, expand the search radius. I often limit my in person search to providers that are less than 5 miles away because Atlanta traffic can be brutal. If you expand your search to, say, 200 miles, you’ll see more providers and can ask if they offer telehealth.
- Search major cities near you. Big cities are likely to have more options, and many may offer telehealth. If a big city is in another state, but close to the state border, there is a good chance that these dietitians may also be licensed in your state.
Navigating Insurance and Costs
A common barrier for many people when seeking out medical care is the cost, and some people assume that seeing a dietitian is expensive. The good news is that many insurance plans provide great coverage for nutrition counseling, especially for CKD patients. For many patients, there is no out of pocket cost.
Medicare Coverage
If you have Medicare or a Medicare Advantage plan and have been diagnosed with CKD or Diabetes, you are entitled to a certain number of hours with a dietitian – at ZERO out of pocket cost:
- First year of seeing a dietitian: Up to three hours of nutrition counseling.
- Subsequent Years: Two hours annually.
- Additional Hours: If your doctor determines more sessions are medically necessary, Medicare will cover them.
Key Requirements:
- Referral: You need a referral from your physician that includes your CKD diagnosis. Referrals from physician assistants or nurse practitioners are not accepted. Referrals do not need to come from a nephrologist; they can be from any of your doctors.
- In-Network Providers: You must see a dietitian who accepts Medicare. For Medicare Advantage plans, the dietitian must also be in-network with your specific plan.
Private Insurance
Most private insurance plans also cover nutrition counseling, but policies vary. Here’s what to ask when contacting your insurer:
- Is nutrition counseling covered for CKD?
- How many visits are allowed annually?
- Do I need a physician referral?
- Are telehealth visits covered?
- What are my out-of-pocket costs?
Provide CPT codes 97802 (initial visit) and 97803 (follow-ups) for clarity.
Out-of-Network Options
If your preferred dietitian isn’t in-network, ask about a Single Case Agreement (SCA). A Single Case Agreement is a special arrangement between you, your insurance company, and an out-of-network healthcare provider. It allows your insurance to cover visits with the provider as if they were in-network. This option is often used when no in-network providers can meet your specific needs, such as finding a dietitian who specializes in CKD.
Insurance companies approve SCAs on a case-by-case basis. They typically require you to provide evidence that an in-network option isn’t available or sufficient for your care.
Note: Medicare will not do a single case agreement. If you have Medicare or Medicare Advantage, you MUST choose a dietitian that is in network with Medicare. If you have a Medicare Advantage Plan, you can request a single case agreement with your plan administrator as long as the dietitian is in network with Medicare.
Steps to Obtaining a Single Case Agreement:
- Find a suitable dietitian: Find a dietitian who specializes in CKD and is willing to work with you under an SCA. They’ll need to provide you with some basic information including their NPI, Tax ID, and fax number.
- Obtain a referral: A referral from your doctor tells the insurance company that this service is medically necessary. I’ve been successful with using my basic referral form where the doctor checks the diagnosis box and signs their name. I did not need a lengthy explanation from the doctor on why it was important.
- Verify that there are no suitable dietitians in network: I recommend searching your provider directory for dietitians within a certain radius of your home (perhaps 50-100 miles) and comparing them to this list of dietitians who are board certified in renal nutrition (just look at your state). If none of them match, that should be proof that there are no suitable renal dietitians.
- Assemble the documentation: A dietitian will be more likely to work with you on a Single Case agreement if you do all of the legwork. You’ll need to create a short document that provides necessary details on the Single Case Agreement. Here is a sample of what I usually include in a Single Case Agreement.
- Determine where to send it: call your insurance company and ask where to submit a Single Case Agreement. They may ask you to provide some details now and then fax in the rest. In my experience, it is usually the fax number for Prior Authorizations.
- Send it off: Send your document with the single case agreement details + the referral to your insurance company. Periodically check in with the dietitian to see if they have received a response or if you need to follow up.
The Bottom Line
Working with a CKD dietitian is one of the best investments you can make in your health. Their expertise can help you navigate the complexities of kidney nutrition, prevent complications, and enjoy a better quality of life. Whether you access care through Medicare, private insurance, or telehealth, finding the right dietitian is a step toward thriving with CKD.