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Aside from the first few months after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
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The one I did meet with told me to eat whatever I want and then cover it with insulin. Why would I want to meet again? Should I eat more eggs and then take cholesterol medicine too?
Yes. I see an endocrinologist in Dallas that specializes I weight wellness and he has a nutritional specialist. I’ve met with him a couple of times and we talk through MyChart regularly. This is separate from my endocrinologist that handles my diabetes though as the weight wellness endo likes for us to us MDI and I’m on a pump. He may or may not have that training. I’m not sure.
Unbelievable that the endo doesn’t promote letting people choose between a pump or MDI. I chose MDI for many years and just started pumping about 2.5 years ago. It just seemed like the right time for me to change.
The nurse practitioner that started me on my pump and taught me about carbs.
Yes, several years ago I attended a week-long DAfNE course (DAfNE is an acronym for Dose Adjustment for Normal Eating) that was aimed specifically at pump users. This covered a whole range of topics including dose adjustment, carbohydrate counting, managing insulin around exercise, around illness, and around social activities including drinking alcohol.
There were obvious changes in the carbohydrate counts of individual foods and/or drinks compared to what I was taught 30+ years before.
A week-long course. WOW!
My limited experiences with nutritionists in the first few years after my diagnosis were very disappointing. Although I am sure they were well-intentioned, they were very out of touch with the reality of managing this disease. It would have been much more helpful if they would have taken a life-coach approach and discussed incremental changes that could be made or suggested changes that would solve a particular issue that I was having. I don’t waste my time going to them anymore.
Yes, sort of. However, when her initial reaction was to question whether I wasn’t actually T2. . . .
I like to eat as healthy as possible for a variety of reasons. Eating what I want and covering it with insulin is not an option I am comfortable with, so I recently talked to a nutritionist associated with my Endo. She at first wanted me to go to a group and I told her no, that I had specific questions. After we talked, she said she agreed that I could probably teach the group. She confirmed my food choices were good and suggested a great little store that sells quality olive oils 🙂. That’s about all I got out of it. I know what I SHOULD do. It’s doing it. I stay on the healthy diet wagon, fall off, clean up my act, get back on and try not to beat myself up.
With my pregnancies, my Endo sent me for a revised diet plan. I followed it prior to pump use and still do. Great Endo, good call in my opinion.
Yes, but it’s been a long, long time ago. Diet info has changed since I was diagnosed in 1967. I know I saw one when it shifted to carb counting.
No and yes, I married one.
😀
Actually 21 years plus the first few months after Dx but I had the help from my mother, an unregistered dietician who had cared for my Dad, the LADA T1 dxed 20+ years before me.
My response is the same as Ms. Smith. It’s been a long time since I’ve seen a dietitian. I believe the last time was when I started carbohydrate counting.
I saw a dietician only once after diagnosis. Then after the appointment, you become your own dietician. Just like you become your own medical team living with this disease 24/7. Yes, there is help available even for mental health……..but when you have to pay out of pocket because of huge deductibles on your high risk insurance, I decided to learn as I went forward with this disease. My husband and I did T1D together and I learned a lot from him being my mentor. When our son was diagnosed with T1D there were 3 of us under the same roof and I was in charge of the kitchen. I do remember the dietician saying “Veggies will be your best friends”.
Haven’t gotten any specific Diabetic information, but last summer, following my heart attack, I attended Cardiac Rehab for a few months, and every Thursday we had a registered dietitian make presentations. However, these were specific to heart issues, although many of the points related to both.
Yes, but she was worthless. She was unable to do the math in counting carbs.
funny !!
I was Dx-ed at 18 months of age, I have seen a dietician a few times, but probably not enough.
Never saw dietician. Lost a lot of weight so ate more calories. When weight stabilized switched to low carb diet. Now am sort of modified keto.
I believe so it was 61 years ago.
I didn’t see a dietician when I was first diagnosed in 1980 but they did give me a booklet from the ADA that showed how the exchange system worked. It wasn’t until I got an insulin pump in 1995 that I met with a dietician and learned about counting carbohydrates. I met her several times until I got pretty much settle on pumping. My insurance paid for all of that.
Several times over the 37 years I’ve lived with diabetes
Dx’d at 50 in 2013, the day after diagnosis, I went to a dietician. She was lovely, but I knew going in that I wouldn’t eat the way she (ADA) suggested. Cake???? Fifteen gram carb snack??? I have eaten lower carb since day one, it’s the only way I know how to do it! Lately I have ventured in to eating quinoa and beans….yummmm! I had studied to be a dietitian in college, but got married and had kids instead. No regrets there!
I feel I had one of the best for many years. I also volunteered at her classes. Sure miss her. She’s retired.
I was 30 years old when Dx’d. I was sent to a day long class, and at the beginning we all introduced our selves. Once I said I had T1`D, she told me to meet her at the break (after the first hour). She (honestly) said she didn’t have anything for me, the class was geared for T2D. IN our intro’s we shared the stories of our Dx’sa, and I had mentioned that I was a ballet dancer. She acknowledged that I had probably taken a day off work. So she offered to sign that I attended (which I did, sorta) and told be to go and enjoy my day off.
Nice…. from sweet Charlie
I was never sent to a dietician. When I was first dx’d in 1962, my parents and I were handed an ADA pamphlet about Exchange Lists. We found it extremely helpful. Since then, hospital dieticians have been sent to visit me (never diabetes related hospital visits) and their levels of knowledge varied widely. I taught one of them all about glycemic index.
Sounds typical regarding a majority of generic hospital RDs being absolutely clueless and out of touch about the various challenges of eating and BG control people with T1D face in real life – especially when living with T1D over a long lifetime.
When I got my first pump in 2005, 18 years after diagnosis, the NP kept urging me to talk with the dietitian so I finally gave in. She started talking about how many “choices” I should have for eat meal/snack (1 slice of bread was a carb “choice” etc). It was like I was back in 1987! I tuned her out. At my next appointment the nurse asked me how it went and I told her the truth. Later when she spotted the dietitian walk by she ran out and I heard the NP tell the dietitian to not talk about exchanges with Type 1s. She said, “I didn’t talk about exchanges, I talked about choices”. The NP told her to only talk about carb counting with Type 1s.
Never in 51 yrs of T1D.
Yes, many times over the past 66+ years. From my dx at 8 until I left home for college I was like an onlooker at the appointments my mother made with the RD. What I remember hearing was “no”. Obviously, this was not the best prep for living on my own. The ADA Exchange Plan was drilled into my head, but in all those years of appointments it was never personalized to include my choices. Since then my RD visits have been far fewer and always in conjunction with major changes in insulin type and dosage. Since starting pump use 6 years ago I’ve had contact with a CDE who is an RD, certified pump trainer and a wonderful resource for the majority of my life with T1 questions.
Only once. That was following CABG surgery in 2018. Didn’t learn anything new. 😁
Yes, and I learned something new each time. But with that said, I was diagnosed before age 4 and now have had T1D 62 years. I did not follow much of anything advise until 30+ yrs later. Since then I have moved and changed doctors along with insurance. Insurance and endocrinologist had me see a dietitian and I was glad I did. Never too old or too many years with diabetes not to learn something new
Yes, just recently, 47+ years after diagnosis, for help with a more plant based diet and sports nutrition.
In 50 years of T1D, I have never been sent to a dietician. When I was diagnosed, the doctors told my Mom to just let me eat what I wanted.
If I had been allowed a choice back then, I might have preferred a dietician.
I wish dieticians were on the “schedule” of things to do for diabetics… like foot or eye exams.
I am the same way. I was given a diet by the doctor or his nurse – the Exchange diet – back in 1970 and have been changing it on my own ever since. But I could use a dietician’s advice on some things and to check out my nutrients. I went to live in England for two years right after my diagnosis, and their system was not the same as in the U.S. So that expanded my tools to live with right away. They only counted carbs, not calories. Of course, proteins and fats influence blood sugars, too. But at the time, all diabetics were given extremely low fat diets (because they thought lower fat would help obese Type 2’s lose weight) and I was starving.
I haven’t had very good experiences with getting helpful information the couple of times I’ve seen dietitians as an adult, but it has at least been a time to evaluate what I am doing.
II saw someone once many years ago who helped me understand counting carbs, but I don’t know if she was a registered dietician.
Aside from a few months after diagnosis???
For me, the true answer would be NO even including every hour since diagnosis!!!
70 years ago the Doctor gave me a sheet of paper explaining diet.. common since explained the rest.. from Sweet Charlie
I was mis-dx’d T2 9 years ago and went to a series of classes that covered diet among other things. I was correctly dx’d T1 in Nov 2020, no classes guidance other than one 45 minute session with a CDE that may have “touched” on diet, but nothing of any extent. For all the talk by ADA, JDRF, and others, about the importance of a “team” approach (Endo, CDE, NP, Dietician, etc.) is needed, I’m shocked at the lack of “teams” in Northern VA. There’s a couple that claim it, but for the most part the closest you come is people that share the same mega-corporate name, but not a team in reality.
I have never seen a registered dietitian. Not sure if we even had those when I was diagnosed almost 34 years ago. I rather do my own research and plan my diet to match my needs. So far so good, no complications, very few lows, plenty of energy for activities, latest a1c 5.4
I saw a dietician for the first year or so of living with diabetes when I was diagnosed at age 8 in 1962-63. It was mainly for my mother and me to learn about the the ADA Exchange diet and how to make reasonable food choice adaptations during holiday season meal planning & eating out at restaurants. That was it for seeing a RD until I entered the Diabetes and Early Pregnancy Study with Lois Jovanovic, MD and her team at NY Cornell Medical Center in NYC from 1982 to 84. From an excellent RD, CDE and a team of RN, CDEs I learned to count carbs, read labels, and use a MDI sliding scale of Regular at meal times along with longer acting UltraLente as basal insulin.
I started using a pump in 2002 and it was a RN, CDE pump trainer who reviewed some up-to-date carb counting pointers for pump use with me. The RD I was given an appt to see before starting on the pump brought out the plastic food models and fake boxes with labels to teach me about reading labels and portion sizes. I was like “Are you kidding me?” She meant well but the visit was a waste of time and I never went back to see her.
As a RN I became a CDE myself and have studied nutrition & meal planning applications relating to various forms of diabetes. I teach all patients I see customized basics about making reasonable food choices for healthy eating. If they need more complex first line teaching or have serious nutritional deficits or weight loss related problems I strongly encourage them to consult a RD and make an appropriate referral.
I was diagnosed 55 years ago, and I have using an Insulin for over 39 years, of course my CDE is also a Certified Nutritionist.
No for me- but I am and Endocrinologist that specializes in T1D, has T1D, and I frequently give talks to HCP’s on CGM and/or pumps, and am a co-author of a book on pumping from 2013. So I am not typical. I think many would benefit from talking to a nutritionist if the nutritionist understands the impact of fat and protein on BG levels and does not think that only carbs matter. That is clearly not true, and those who are up to date know this.
I believe just once which was when I first switched from nph to lantus. That was quite a few years ago.
Using just humalog now that I am on a pump and waiting to get tested to see if my lungs are good enough to add afrezza to my regiment.
It is very expensive and my insurance does not cover anything for dietitian or nutrition training/help. I am not sure why because it would help so much. I did one 16 years ago when I first because diabetic and then found out insurance didn’t cover any part of it and had to pay that huge amount at the hospital out of my pocket. I cannot afford it again but would be very helpful if I could being it has been 16 years since I have and my current A1c was 9.2 last week.
first became I meant not first because “correction”
I was diagnosed 36 years ago. Once I reached adulthood and when I would
Have good health insurance a registered dietician and a certified diabetes educator have always been a part of my medical team.
very helpful!