Calling on vegetarian DS veterans for advice --

[Vikki C.]

I need some assistance on behalf of my daughter. She had BPD/DS 16 years ago, suffers from chronic anemia (requiring periodic infusions), and became vegetarian about 18 months ago. Her health is suffering, as she is quite run down and becomes ill often. Her internist told her she needs to build herself up and suggested that she improve her diet, but did not really offer any suggestions how to deal with the DS nutritional requirements as a vegetarian.

If you have had success in maintaining a healthy vegetarian DS diet, please send some ideas my way so that I can help my daughter regain her health and stamina. Thank you.

 

[DianaCox]

She needs to STOP being a vegetarian for starters. Surely she was told that was contraindicated with the DS!!

Meat, protein supplements (high quality, and not veggies crap), and iron infusions, ASAP. And she's probably deficient in most of her vitamins and minerals as well. What are her vitamin A and D levels? She should NOT be listening to a doctor who has no idea about DS nutritional needs.

 

[Larra]

As much as I admire people who are willing to be vegetarians, for someone with the DS this is putting her health in jeopardy. It is very difficult to get in enough protein to maintain good nutritional health without eating some non-veggie proteins. The veggie based proteins are not dense proteins, so she would need to eat much larger quantities to get in enough, and that's hard to do with a small stomach, esp considering that she is only absorbing about 40 - 60% of whatever protein she does eat.
I do know one person with the DS who is somewhat vegetarian, but she will eat fish and I think eggs, and these are both excellent sources of protein. Perhaps your daughter can find some protein drinks that are vegetarian. If not, I respectfully suggest that she put her health first and eat whatever forms of animal or fish based protein are least offensive to her. Protein malnutrition kills.

 

[Vikki C.]

I have urged her to go back to animal protein. She does eat eggs and fish. I don't really know her full vitamin regimen, but she does take ADEK's, and 50,000 dry D. Frustratingly, due to insurance constraints, she is not under the care of a DS doctor, does not get regular blood work, and only receives infusions when her anemia symptoms become incapacitating. She lives in Salt Lake City and hasn't been able to find a good physician who is knowledgable about DS.

 

[southernlady]

Vikki, she needs to get lab work and then adjust using the Vitalady list located here in the Vitamins and Labs forum. And ADEK is not enough as she can't adjust it to her individual ACTUAL needs.

Unfortunately it sounds like she is buying into the popular idea that not eating animal protein is good for her. But she turned herself into a carnivore 16 years ago. How many tigers or lions (classic carnivores) do you see eating veggies? They eat meat. However, you can't fix her...she is gonna have to fix herself.

 

[Vikki C.]

Vikki, she needs to get lab work and then adjust using the Vitalady list located here in the Vitamins and Labs forum. And ADEK is not enough as she can't adjust it to her individual ACTUAL needs.

Unfortunately it sounds like she is buying into the popular idea that not eating animal protein is good for her. But she turned herself into a carnivore 16 years ago. How many tigers or lions (classic carnivores) do you see eating veggies? They eat meat. However, you can't fix her...she is gonna have to fix herself.

She is vegetarian for ethical more than health-seeking reasons. And you are right -- it's up to her to make better choices.

 

[Munchkin]

She is a modified human being. She has to eat protein. We can get by just fine on protein only for literally a lifetime. She needs to get good vites and start taking care of herself.

Some people do fine as vegetarians. Strange thing, some of the heaviest people I have ever known have been vegetarians. Anyway this is not for DSers. And she already made that decision and she knew it before she had surgery in the first place.

 

[aaa]

I knew a vegetarian DSer years ago. I seem to recall she ate a lot of tofu.

 

[DianaCox]

She is an OBLIGATE carnivore - she chose to be that way. She will die for her ethical concerns if she doesn't do something about this.

The volume (and fartogenicity) of a vegetarian DS diet would be unlivable. And gross.

No matter what she says about her insurance not covering a proper DS doctor, if there is none in network, all she needs is for her PCP to state that she needs a specialist for which there is no qualified in-network person - and the insurance MUST allow her to go to someone out-of-network at in-network (to her) rates - it's up to the insurance company to make their own financial arrangements with the doctor.

 

[Vikki C.]

Thank you all for your input. I will pass it on to her. Hopefully, she will be motivated to make a change before she sustains some permanent damage.

 

[Charris]

Protein malnutrition kills.

I will be the first to acknowledge this statement. In the last 3 years i have been on deaths door twice from protein malnutrition. I have always told my family i want to live as long as possible no matter what physical state or pain im in....Well that was true until i became malnourished. I begged for them to let me die. The pain, sores, lost mind had me begging for death to stop what i was going through. To be honest it's a horrible excruciating way to die. I ended up on liver transplant list because of malnutrition. Once the malnutrition went away the issue resolved. The doctors told my family to make funeral arrangements. Im talking she needs to nip it in the bud before she gets that bad. I don't think i could wish that on my very worst enemy. If she is just adamant about being vegan i would be more than happy to share pictures, videos, medical reports with you guys so she can see where she may be headed. It's a slow torturing death. I couldn't do anything for myself. I had got to point where my mind went and i couldn't walk or talk. I am totally not exaggerating. If she wont eat meat she will probably need quite a bit of extra $$ to invest in good quality protein supplements or she might end up carrying an IV on her back with TP. i have done for a total of 13 months out of the 35 months i have had a DS. Once thoae nutrients, vitamins and minerals tank it is harder than hell to get those numbers to normal wothout TPN. Good luck

 

[Vikki C.]

I will be the first to acknowledge this statement. In the last 3 years i have been on deaths door twice from protein malnutrition. I have always told my family i want to live as long as possible no matter what phydical state or pain im in....Well that was true until i became malnourished. I begged for them to let me die. The pain, sores, lost mind had me begging for death to stop what i was going through. To be honest its a horrible excruciating way to die. I ended up on liver transplant list because of malnutrition. Once the malnutrition went away the issue resolved. The doctors told my family to make funeral arrangements. Im talking she needs to nip it in the bud before she gets that bad. I don't think i could wish that on my very worst enemy. If she is just adamant about being vegan i would be more than happy to share pictures, videos, medical reports with you guys so she can see where she may be headed. It's a slow torturing death. I couldn't do anything for myself. I had got to point where my mind went and i couldn't walk or talk. I am totally not exaggerating. If she wont eat meat she will probably need quite a bit of extra $$ to invest in good quality protein supplements or she might end up carrying an IV on her back with TP. i have done for a total of 13 months out of the 35 months i have had a DS. Once thoae nutrients, vitamins and minerals tank it is harder than hell to get those numbers to normal wothout TPN. Good luck

Thank you for sharing this. I intend to have a frank discussion with her about the damage she is inflicting on her body in the name of "vegetarian ethics."

 

[southernlady]

Thank you for sharing this. I intend to have a frank discussion with her about the damage she is inflicting on her body in the name of "vegetarian ethics."

Does she have kids? If so, suggest she make sure she has all her affairs in order if she continues to pursue being vegetarian because of ethics. How is leaving friends and family behind ethical when eating protein would fix it.

Humans were designed to be omnivores NOT herbivores.

 

[Vikki C.]

Does she have kids? If so, suggest she make sure she has all her affairs in order if she continues to pursue being vegetarian because of ethics. How is leaving friends and family behind ethical when eating protein would fix it.

Humans were designed to be omnivores NOT herbivores.

She is not a strict herbivore. She does eat fish, eggs and dairy products. But still, her health is not what it should be because I'm sure she doesn't make a point of maximizing her protein. I will be letting her know how dangerous it can be to let postop DS nutrition slip.

 

[bearmom]

Sigh. I have been vegetarian and vegan at times, and had my DS 8+ years ago. I suppose it's possible to do it (not vegan, maybe vegetarian) but it was work, like a full time job. The amount of effort it would take to remain vegetarian as a DSer is not worth it. I eat meat.

I am a diligent DSer, meaning I don't ever miss getting my labs, and those labs are scrutinized to make sure I keep levels in good range, and at the earlier stages of my DS when I still played with the idea of being vegetarian, I had my labs drawn every 3 months. Insurance didn't pay for all those, so I had to pay thousands out of pocket. I didn't find a DR that was well versed in the DS, so I found a young, eager to learn Dr, that wanted to learn along with me. I still go to her.

It takes time finding the right Drs, or fighting for referrals to the right type (like an endo) time researching what we need (as Drs still don't have many of the answers for us), time to continually fiddle with lab results and adjusting supplements, money to throw at tests or dr visits or supplements, and time to research, and come to sites like this one to learn.

It sounds like your daughter is at the opposite end of the diligence scale as me regarding her DS. I won't try the vegetarian thing again, and certainly think she shouldn't.

I'm concerned about your daughter and that she is causing ever more health issues which may not be reversible, or fatal. This is one of the more knowledgeable communities (and more importantly, poor information is weeded out) available online. Could you convince her to come here and learn?

By the way, kudos to you for coming here to try to gain some information for her, and finding a place with good DS information. I hope she can care enough to come here for herself.