US Need advice-Central Diabetes Insipidus.

[boydwgrossii]

I was born with central diabetes insipidus. Because of this, I do not retain water or electrolytes like most people. I lose them really fast.

September 2019, I started strongman training and my chronic fatigue got worse. Towards the end of the program I was doing, I switch to plant-based exclusively. My chronic fatigue went away and I didn’t know that I could have that much energy at 37 years old.

I bought the Forks Over Knives The Recipes transition book but wanted to see if there’s any pointers I could do or things I should just keep around?

I noticed that I felt exhausted and almost passed out from the heat today and I drink some pure aloe juice with a lot of potassium in it and I felt a lot better. My goal is to have a better quality of life with this condition.

I also wanted to clarify. My doctor is of no help and the last endocrinologist I had wanted to study me because I am taking way less desmopressin (DDAVP) than I used to. My current endocrinologist is perplexed but doesn’t care enough to do any research.

I get heat exhaustion many times a year and end up in the hospital quite a few times. My goal this year is to not go to the hospital and I’m doing well but August is still here.

 

[Lou]

I'm sorry to hear about your condition. but I'm happy to hear that the P-B diet helps.

Have you heard of or seen Dr. Gregar's Daily Dozen Its a pretty good strategy and simple to use.

Also maybe spend some time poking around here. there are some good recipes that are WFPB laying around.

Do you like/drink Gatorade. I've recently discovered you can buy tubs of powdered gatorade and mix your own. Way cheaper, only 10¢ per serving. more eco-friendly too. Only problem is that there are very limited choices on flavors. but if you like the lemon lime - you are in luck.

 

[silva]

Things that come to mind are :
coconut water-electrolytes
celery juice-sodium
watermelon- electrolytes
cucumber
dates to sweeten
blend
Oh, and banana if you like banana

I've never heard of this condition from any doctor, but the best for peer and evidence based medicine are-
Dr Michael Greger NutritionFacts.org | The Latest in Nutrition Related Research
Dr Neal Barnard Food for Life
Brenda Davis RD
Julieanna Hever RD
and their affliations of course

 

[David3]

I was born with central diabetes insipidus. Because of this, I do not retain water or electrolytes like most people. I lose them really fast.

September 2019, I started strongman training and my chronic fatigue got worse. Towards the end of the program I was doing, I switch to plant-based exclusively. My chronic fatigue went away and I didn’t know that I could have that much energy at 37 years old.

I bought the Forks Over Knives The Recipes transition book but wanted to see if there’s any pointers I could do or things I should just keep around?

I noticed that I felt exhausted and almost passed out from the heat today and I drink some pure aloe juice with a lot of potassium in it and I felt a lot better. My goal is to have a better quality of life with this condition.

I also wanted to clarify. My doctor is of no help and the last endocrinologist I had wanted to study me because I am taking way less desmopressin (DDAVP) than I used to. My current endocrinologist is perplexed but doesn’t care enough to do any research.

I get heat exhaustion many times a year and end up in the hospital quite a few times. My goal this year is to not go to the hospital and I’m doing well but August is still here.

.
Hi Boyd, and welcome to the forum.

Because you have a potentially life-threatening condition, it might be a good idea to plan your diet with the help of a Registered Dietitian (RD) who specializes in diabetes and in vegetarian nutrition. In the United States, you can find local RD's through the website of the Academy of Nutrition and Dietetics: Eatright.org - Academy of Nutrition and Dietetics. Just click on the red "Find a Nutrition Expert" button in the upper-right-hand region of the webpage. You can select from RD's in/near your ZIP code, and according to specialty.
.

 

[boydwgrossii]

Been trying.

my endocrinologist scheduled me to meet with the dietitian there. The dietitian is programmed to push the Mediterranean diet on everyone and talk about its benefits. When I asked her about things particular to my condition in regards to electrolytes, she had no answers. The more questions I asked, the more I realize that she’s only really pushing a Mediterranean diet but she didn’t fully understand that.

I’ve tried reaching out to others around here and everyone is willing to take my money but knows nothing about my nutritional needs, transitioning to plant-based while making sure that I get proper electrolytes through food and drinks, or knows anything about diabetes insipidus.

As far as anything else goes, Gatorade doesn’t help all that much. Body armor does decently. What I usually get is a coconut water and I’ll put a liquid IV in there in dire situation. If I am beyond that point, I just go to the hospital and they plug me up to a couple bags of fluid.

 

[Lou]

I looked it up cause I was curious. Man, this is a rare disease.

Anyway at the bottom of the page they have some people and organizations contact info.
I would contact All of them

Arginine Vasopressin Deficiency - Symptoms, Causes, Treatment | NORD

Learn about Arginine Vasopressin Deficiency, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to

rarediseases.org

There is also a foundation

NDI (Nephrogenic Diabetes Insipidus) Foundation - NORD (National Organization for Rare Disorders)

rarediseases.org

it seems like hormone therapy is the most common treatment.

 

[boydwgrossii]

I will have to see what I can find.

I looked up a lot of people a while back and ask them if they did any other treatment then prescribing desmopressin acetate because that’s what I already take. Every single one of them said I could come in and get a prescription from them. I’m hoping I can come across somebody soon who will have an idea.

Me and summers don’t get along very well.

 

[Lou]

I will have to see what I can find.

I looked up a lot of people a while back and ask them if they did any other treatment then prescribing desmopressin acetate because that’s what I already take. Every single one of them said I could come in and get a prescription from them. I’m hoping I can come across somebody soon who will have an idea.

Me and summers don’t get along very well.

Well summers in Oklahoma. You probably should move to someplace cooler in the summer. Like Portland.

Alaska?

 

[boydwgrossii]

I thought about it. I’m still thinking about it. Call I would like to get married and get for custody of my children first. After that, I’d be willing to look into moving to a cooler climate. Sarah said Wyoming may be pretty nice.

I want to do all of this with wisdom first as I don’t think ripping my children away from people is prudent. At the same time, I need to survive the summers.

Also, I have a really solid church family here which are the closest thing to a family that I’ve ever had. It would be tough to leave, but finding another one shouldn’t be too terribly hard.

 

[silva]

Been trying.

my endocrinologist scheduled me to meet with the dietitian there. The dietitian is programmed to push the Mediterranean diet on everyone and talk about its benefits. When I asked her about things particular to my condition in regards to electrolytes, she had no answers. The more questions I asked, the more I realize that she’s only really pushing a Mediterranean diet but she didn’t fully understand that.

I’ve tried reaching out to others around here and everyone is willing to take my money but knows nothing about my nutritional needs, transitioning to plant-based while making sure that I get proper electrolytes through food and drinks, or knows anything about diabetes insipidus.

As far as anything else goes, Gatorade doesn’t help all that much. Body armor does decently. What I usually get is a coconut water and I’ll put a liquid IV in there in dire situation. If I am beyond that point, I just go to the hospital and they plug me up to a couple bags of fluid.

Is this a registered dietician, or just a 'nutritionist'? They are very different in the US. You say dietician, so I'm thinking you're good, but just in case--

Nutritionist vs Dietitian

Dietitians and nutritionists are both experts in food and diet and help people maintain good health and prevent or treat health conditions. Learn the difference between these two roles, the average salaries and how to become one.

www.publichealthdegrees.org

I wonder if there are any groups out there, online, that might focus on this condition?

 

[boydwgrossii]

I haven’t found any.

not sure on which they are.

I looked for CDI forums and found nothing.

 

[Lou]

I would check the contacts on those NORD website I posted above.
Those seem like the best place to start.
Just out of curiosity I checked YouTube. Gosh! there are a ton of YT videos.
I also did a quick check on FaceBook. I don't do FaceBook and I don't recommend it - but it turns out they have a CDI group. Maybe as a last resort.