Nutritionist

[yogini]

I just got a referral from my PCP to see a nutritionist. One of the doctors I saw a few weeks ago suggested that I see one. Have any of you seen one for your POTS? If so, what type of diet and/or supplements did they put you on? It would be great to tell them what other POTS patients are doing in case they haven't heard of POTS (which I am sure they haven't).

I read the website for the place where I am going, and they give you a 1 1/2 hour evaluation, and then you have follow up visits to adjust your diet. It sounds very thorough, so I am really excited. Even if this helps just a little, it would be great.

-Rita

[dianaD]

Hi Rita,

I haven't, but I've THOUGHT about it. I'm kind of doing a "self analysis" with "diet power" software that gives you summaries of your nutrients, etc. That, and a blood test from my doc to check for any deficiencies.

I hope it helps you!

[ellen]

I would be very interested in anything you can share with us from your appointment!

[Poohbear]

I have met with a dietician before but I can't really offer you much advice because my goal was to discuss how to get the sodium and potassium I need in the midst of all the food allergies I've developed.

You may want to let them know you are supposed to have increased sodium in your diet. Vanderbilt recommended 8-10 grams a day which if I remember right translates into 8,000 to 10,000 mg.

You should check with your Dr first though.

Let us know how it goes!

[kmpower]

Nutrition has been a key for me. It depended on knowing some things from my lab tests: homocysteine, proteins, hormonal status, electrolytes, more. Many of us eat really well, but sometimes you have to tailor the diet just to you and tweak it with supplements. Like so many of us, I read and research as much as I can to figure out more what we can do for ourselves.

The folate nutrients are very important in regulating lots of hormones, neurotransmitters and cardiovascular mechanisms.

My list of what I take would bore you and also not necessarily be what you need. But take all the blood tests that you have with you and your own record of BP, heart rate, symptom journal, diet diary, whatever you have.

Please let us know what the nutritionist says.

Have a good experience.

OLL

[yogini]

Thanks guys! Just my luck, I got a call from the nutritionst saying that they had received my referral, but they were not sure that my insurance will cover it. ..what a surprise...LOL! I called my insurance company and they said they pay for it for HMO patients, but not PPO patients, which is what I have. Drives me nuts, because I switched from HMO to PPO after I got sick b/c it was supposed to be better coverage.

Anyway, I have to sort all of this out before I can see the nutritionist. I will definitely post after my appointment...

-Rita

[OCsunshine]

Hey this is kind of a delayed response... but I have been thinking about seeing a Nutrionist so I searched for old posts.

Anyway, can a blood test really show the levels of all the vitamins in your body? I assume we're talking about a specialized test here, right? Not just what shows up in a cbc? I'm thinking that my docs must have done all this over the last 11 years... but I'm not certain.

I watched "House" this week and got to thinking more about celiac disease. I know I've talked with my docs about gluten free stuff years ago, but the concensus was that I have a milk protein allergy, not celiac. I know I have been tested for Chron's (when I was having a major flare up in GI symptoms) and that was definitely negative. Don't know if I've officially been tested for celiac, though?

I'm not looking for a diagnosis, I've lived for 11 years knowing I have NMH and CFIDS. But my gut instinct tells me I should have my vitamin levels checked and look further into the celiac issue...? Any thoughts.........?

[Lukkychrm42]

Hey there-

my women's doc PCPs tend to do a pretty good job demanding that I make sure to get enough calcium, iron, and things like that.. but my gastroenterologist also works in nutrition (so he specializes in things like celiac sprue). He did a bunch of nutritional testing on me to make sure I don't have deficiencies (I don't), and mini-lectured me on maintaining a healthy vegan diet (umm- no deficiencies... ).

I guess I'm not sure about what you're looking for in a nutritionist- I mean, I know that there are special diets out there to help minimize symptoms of things like fibromyalgia and chronic fatigue, so could someone help you apply those standards to see if your POTS symptoms improve? Cuz they're basically whole food, low (but good) fat, lean protein, nutrient dense, non-dairy diets. Or someone to make sure you don't have any deficiencies, and if so then to correct them?? Or general all-purpose kind of thing, make sure you're eating well, see what you could do better?

Good luck with them!

[Poohbear]

OC Sunshine

If you are wanting to be tested for celiac that's actuallly pretty straight forward blood test.

Ask your Dr to run that for you.

[Guest tearose]

I have seen a couple of nutritionists over the years. I went once after 6 weeks of IV antibiotics for lyme to rebuild my immune system and then again a few times after having increasing digestion problems from POTS.

My nutritionist had me keep a food (and supplement) and activity journal and then made recommendations for me. She helped me figure out how to eat smaller, balanced mini meals throughout the day and not get deconditioned, tired or experience any more tummy aches. I liked having a knowledgeable professional do the research on licorice root, potassium and other similar alternative things for me to consider.

It was worthwhile doing and only the last time was it covered by insurance.

Since digestion issues are a complication of dysautonomia, my pcp did a referral and it was covered.

go for it!

[yogini]

I just wanted to post an update, because I did go to see my nutritionist last weekend. I was a little disappointed. She really didn't have much to suggest interms of supplements and diet changes. In fact she said she doesn't believe in supplements and things you can get all the nutrition you need directly from food. I have been hesitant about the whole supplement thing in the first place, so I guess it wasn't meant to be. I already eat pretty healthy and don't really eat fast, frozen or processeed foods. The one thing that she noted is that she doesn't think I am getting enough sodium in my diet because of this. I about fell on the floor when she told me that. I think the whole/healthy food diet is good for regular people, but it might not be the best when you have POTS. She gave me some suggestions for ways to increase salt, so at least that part was helpful. I am going to start adding some frozen and packaged foods to my diet.

[Lukkychrm42]

I don't eat much in the way of processed foods, either, and I don't feel my diet is lacking in sodium... I am good about adding salt to foods, I suppose. If you can't tolerate the taste of adding so much salt, then eating some processed foods might be an easy way to go about it, but it doesn't have to be like chips or canned meat or frozen dinners, or anything.. canned veggies and beans have tons, as well as prepared broths- and they're better for you than other alternatives.

Anyway, I'm glad you went for a visit, for the experience if nothing else. I agree that people CAN get what they need from food, and that food is a better source of nutrients than pills. However, when we have so little energy and find planning superhealthy diets in advance too difficult, I definitely don't think that adding vitamins and minerals via a supplement is irrational or excessive. Maybe she's used to clients (patients?) who have the ability to plan a perfect diet, but we usually don't, so I'm glad it sounds like you took what she said with a grain of salt (pun intended?).

I guess I just meant to say don't push yourself to eat foods you're not comfortable with just to get salt, because there are healthy ways to get it!

Good luck!!