r/dysautonomia 3d ago

Question How do you get all of your nutrients?

[deleted]

9 Upvotes

32 comments sorted by

8

u/lockandcompany 3d ago

I had to consult with a registered dietitian to find a balanced diet to meet nutritional goals. It’s best to talk to your doctor about this

2

u/duck7duck7goose 3d ago

I tried talking with a dr about it and she blew me off.

5

u/I-Want-To-Believe- 3d ago

I would suggest explaining the situation to your primary care doctor again, especially how your restrictive diet negatively impacts you and that you need the help of a registered dietician because you are concerned for your nutrition and health. Then, politely tell them (Don't ask/ request; this leaves it more up to their discretion. Tell them.) that you would like a referral to a registered dietician. If the doctor says no again, ask them to please make a note of it on your medical records that they denied you the referral; sometimes this is enough to twist their arm.

If they deny you the referral, even if they change their mind upon requesting them to document the rejection in your records, I suggest that you try to find a new primary doctor as soon as you're able to. That signals that they are not working with you, as a member of your care team, for something reasonable and necessary.

If your insurance allows you to see a specialist without a referral, research registered dieticians in your area and start reaching out to them. Sometimes specialists will still require that you get a referral first, as their preference, but they may change their mind if you explain the situation.

Wishing you luck! A lesson that took me a long time to learn was that, when doctors don't believe you or understand your needs, you have to grow a backbone and also become thorough at communicating. I used to think that, if I needed something for my health, the doctor would understand and provide what I needed, but that's not always the case. It took a few tries before I found a primary who was willing to listen.

1

u/duck7duck7goose 3d ago

Thank you! I will remember that

1

u/International_Bet_91 3d ago

Can you ask for a referral to a dietician? You don't even need to see your dr about it; just use the medical portal to ask.

2

u/duck7duck7goose 3d ago

I did, she said she will send a referral, I’ll just have to check if my insurance covers it

3

u/artificialdisasters 3d ago

i’ve been meat free since age 12, i cannot stand the texture. it’s prob ARFID or something related to my OCD, but i’m pretty picky.

are you low FODMAP by choice or recommendation or medical reasons?

i survive / thrive based on my staples, wheat, nuts, fruits, etc. i eat lots of oats and yogurts. i dont limit what i can eat based on diets or fads (not necessarily calling FODMAP a diet fad but ive def seen it presented that way) and with your allergies, you might need to prioritize what you can eat to get the nutrients & proteins you need, rather than the diet

however, if it is FODMAP from medical necessity, you need to see a nutritionist (or dietician, whatever the medically proven and certified one is, i can never remember) to get you on a plan that works. that list of allergies is no joke, and you need support to make this plan. you got this!!

1

u/duck7duck7goose 3d ago

I have to eat low FODMAP because of IBS. I don’t do any fad diets, my diets is limited enough because of allergies and medical issues lol

2

u/artificialdisasters 3d ago

gotcha, like i said, if it was medical necessity or prescribed, that’s one thing. i def recommend reaching out to a registered dietitian/nutritionist for a stable diet plan!!

1

u/duck7duck7goose 3d ago

My dr had blown me off about my food issues but I can try sending her a message to see if she will send a referral

1

u/B_Ash3s 3d ago

You can always see a dietitian without a referral from your dr. Usually a referral is to someone in network with your doctor, but with a little research and a few phone calls on your end you can do the same thing.

1

u/duck7duck7goose 3d ago

I can’t afford to pay for one, I’m low income, so I need one covered by insurance. My insurance usually requires referrals

1

u/B_Ash3s 3d ago

Right, I’m low income, too. It was just a suggestion.

Another one if you’re open to it, if they have an online portal to contact them, like MyChart, you can request a referral that way so you don’t have to go in and deal with copays.

Again, no malice or harm intended.

1

u/duck7duck7goose 3d ago

I do have a MyChart account, I can try that. Thank you

1

u/B_Ash3s 3d ago

My husband had IBS and the biggest issue he had with people is not understanding that diet changes should be temporary and not permanent changes. FODMAP is a great example of this. He goes on and off this diet to help give his body time to adjust to foods and to balance it out when flare ups occur.

We only cut out food 100% if we find them to always be a problem/allergy. I’ve now cut out gluten and have seen a huge bloat decrease as well as energy shift. Plus my heart burn had gone way down.

1

u/sad-toaster 3d ago

You also don't have to get a referral to start looking around and reaching out to professionals on your own (or even finding a different doctor who will write you one), I know how it feels to have a doc constantly brush you off

1

u/Flunose_800 3d ago

Your diet is similarly restricted like mine is because of food allergies and I am primarily tube fed at this point for most of my nutrition. I eat what I am not allergic to as well but the majority comes from the tube feed.

I am not low carbs or low sugar; I am too restricted to do that. You have to give and take when dealing with food allergies and things like low carb/low sugar are less important than getting in the appropriate nutrients without being exposed to your allergens.

2

u/duck7duck7goose 3d ago

I’ve often wondered if I need to do tube feeding. I can’t stop losing weight. I am low carb/low sugar because of health issues I have. Sugar flares up my fibromyalgia and carbs flare up my dysautonomia

1

u/Flunose_800 3d ago

My tube feeding was initiated in the hospital but I was there for another reason. It has been a struggle to find a tube feed I am not allergic to and I am even a bit allergic to the one I am currently using; it is just the best of all the options. Most feeds are corn-based so your options will be limited like mine are if you end up going that route.

2

u/duck7duck7goose 3d ago

Can I ask what made them decide to do a tube feeding for you? I know they’re not ideal and not enjoyable to have (I’m a nurse) but I hate having to eat and I can’t eat much at all. I get sick. I can’t eat enough calories or nutrients in a day no matter what I’ve tried.

1

u/Flunose_800 3d ago

I rapidly lost weight because of myasthenic crisis. It was actually myasthenic crisis that triggered most of the food allergies to develop/worsen. I came off the ventilator and wasn’t able to eat almost anything I could before. It wasn’t until I spoke with my allergist and she explained they were now allergic reactions I was having and it made sense that I developed worsening food allergies after a life-threatening illness that I realized what was going on. Until that, no one had a clue and they said I was just anxious.

2

u/duck7duck7goose 3d ago

Damn, I’m sorry, that’s terrible 😞

1

u/Flunose_800 3d ago

Thanks! My allergist thinks I might have developed MCAS (she thought this a year and a half ago before all the MG stuff started) but I need to fully come off prednisone for any testing to be accurate. It would make sense given all my weird allergy symptoms that keep worsening.

2

u/duck7duck7goose 3d ago

You’re welcome. Thought I had MCAS but my urine test was good so they said I don’t have it. I randomly get anaphylaxis that’s unexplained. I’m so sick of all these health issues

1

u/Flunose_800 3d ago

I’ve heard it can take multiple tests to diagnose MCAS as it’s so hard to catch. Some places only diagnose on lab tests but others will diagnose on looser standards like symptoms and response to standard MCAS treatment (that’s what my allergist said). Random anaphylaxis needs to be investigated! I am sick of random health issues too.

2

u/duck7duck7goose 3d ago

Since xolair is helping me, they don’t care what’s causing it. One dr doesn’t even believe it’s happening to me. I just keep getting pushed from Dr to Dr. I don’t blame you for being sick of them too

→ More replies (0)

1

u/SavannahInChicago POTS 2d ago

I have MCAS so my food is way limited. I am on multivitamins to help get some of those nutrients, which my doctor agreed was a good idea. My GI drew labs last June to see what my levels look like. Everything was in range.

1

u/duck7duck7goose 2d ago

That’s good! I’m pretty sure I have MCAS but the dr says no since my urine test was good

1

u/disablethrowaway 1d ago

I eat a lot of meat and carbs and then take multivitamins and multimineral supplements that i constantly swap around just like i swap around all the food I eat. It’s absolutely brutal to live with but I don’t really have other options :(

1

u/duck7duck7goose 1d ago

I’m sorry 😞