Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis

Hope4

Desert of SW USA
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473
@Howard Did the the surgeon give a reason for wanting the dextrose water? Is there another choice?

I wouldn't want an IV drip of GMO dextrose water.

Any reason not to have amino acid and/or saline solution in the IV?

I can't imagine how GMO dextrose could promote healing.

I am sending you best thoughts and smiles. :). :hug:
 

Howard

suffering ceases when craving is removed
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I was only adding some additional perspective, but none that would change anything for you or your treatments.

I am very okay with the response. If I come off as being crabby I apologize, feeling unwell / poisoned.

So yes, I am being impatient and would prefer to move forward, but I can't control anything... has to run its course.

It's a matter of "acceptance" right now. :) it's my choosing

I wouldn't want an IV drip of GMO dextrose water.

The dextrose water would be for the feeding tube only. I have serious problems with high fructose corn syrup, and have no idea how dextrose relates, or if it would cause any problems. Looks like it's made out of corn.
 

Howard

suffering ceases when craving is removed
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They're holding off on everything right now. Spoke with the doctor and they're trying to locate a substitute nutritional "drink" at one of the local hospitals... with no milk ingredients. :)

No dextrose in water for tube feedings right now either... although that form of sugar may be tolerable, at least as opposed to high fructose corn syrup.

Everything else seems to be working. I've got three hard-boiled eggs and three apple sauces down already. My dysphagia has been improving by the day. :)

Stomach still full of fluid, waiting on Canadian "domperidone" prescription for gastric emptying assistance with stomach contractions.
 

Howard

suffering ceases when craving is removed
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Osmolite 1.2 has milk and soy ingredients

Sodium Caseinate, High Oleic Safflower Oil, Calcium Caseinate,

can someone please explain to me what these ingredients are it looks like milk protein to me but I'm not a hundred percent certain thank
 

Howard

suffering ceases when craving is removed
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that's what they want to give me right now and they said it won't cause any problems. What am I misunderstanding here? It says for lactose intolerance this product.


I have milk intolerance milk allergy milk protein problems whey protein problems any of these things make me ill. So what are these casein by products? Isn't it a form of milk protein?
 

Howard

suffering ceases when craving is removed
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Unlike plant foods, milk does not contain fiber. ... Technically speaking, lactose and casein are simply components in milk and not one in the same. Someone who is allergic to casein or another milk protein would not be allergic to lactose. Likewise, someone who is lactose intolerant would not be intolerant of casein.Jun 15, 2010


Rennet casein is made by adding rennet to skim milk. ... To obtain a casein product that is soluble, the acid casein is neutralized with an alkali and spray-dried to obtain caseinates. Various types of alkali have been used. Sodium, potassium, and calcium caseinates are the most common types of caseinates on the market.
Casein - an overview | ScienceDirect …



People with lactose intolerance can eat foods that contain casein and whey, which are milk proteins, not sugars. If a product is labeled lactose free, that does not mean it is necessarily dairy free. People who seek dairy free products may be vegan or have an allergy to dairy (usually the proteins, casein or whey).Mar 14, 2013
 

Haley

Senior Member
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NSW Australia
From good old google:

Sodium caseinate is the biochemical name for casein, which is a type of protein found in the milk from all mammals.

Calcium caseinate is one of several milk proteins derived from casein in skim and 1% milk. Calcium caseinate is primarily used in meal preparation and fat breakdown

So basically they are both milk proteins. If you have trouble with milk proteins I''d be avoiding them!
US Food and Drug Administration says if you're highly sensitive to lactose, be careful about consuming products with sodium caseinate...

Sorry to hear they keep trying to push this type of product onto you. But at least they do seem to be trying to help...:hug:
 

sunshine44

The only way out, is through.
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1,208
In the immediate future, will they let kitchen blend up a smoothie type substance for you? Until you can get liquid hope overnighted.

This is really something that you are the first dairy free case they have run into....um, for real? ;)

I don't know why people think lactose free and dairy free are the same. Gah but it does go to show yet again how hospitals have very little education on basic nutrition...which is concerning...sigh.

Keep shoveling in what you can :) Good news on eggs!!! Also, I cannot do corn (consumption) but somehow have always done fine with dextrose IV's, I don't know if you would be same?
 

sunshine44

The only way out, is through.
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1,208
what do they think about transferring you to Mayo clinic which may have more options/professionals for cases like yours (dietary etc.)?

Just throwing it out there.
 

Hope4

Desert of SW USA
Messages
473
@Howard A few more details on Sodium Caseinate and Calcium Caseinate,

from "livestrong". Here is the link.

Casein and whey are two types of protein naturally found in milk. Both proteins are extracted and used in large quantities to make protein powders and supplements. Sodium caseinate also contains extracted casein protein, but it's used as a food additive. If you're allergic to milk, you'll need to avoid sodium caseinate.

Other than the risk posed to people with milk allergies, sodium caseinate isn't associated with side effects.

Sodium Caseinate Overview

About 82 percent of the proteins in milk belong to the casein family. Casein proteins are stable when exposed to heat. As a result, they survive pasteurization and they can be dried and reconstituted while retaining their nutritional value, reports Cornell University's Milk Facts.

Sodium caseinate is made by mixing extracted casein with a sodium compound such as sodium hydroxide. [Sodium hydroxide is lye!]

Then the mix is dried to produce sodium caseinate powder. Sodium caseinate retains the original protein, but other qualities change. One important difference is that milk casein doesn't easily dissolve in fluids, while sodium caseinate is soluble

Since sodium caseinate contains milk protein, it can cause an allergic reaction and should be avoided if you're allergic to milk. Also watch for other forms of caseinates and extracted casein, such as calcium caseinate and hydrolyzed casein, recommends Food Allergy Research and Education.

Check the list of ingredients for sodium caseinate. Any type of caseinate in the ingredients should include a note that it comes from milk. Be aware that products labeled dairy-free and nondairy often contain sodium caseinate.

Sodium caseinate is low in lactose, according to a report in Food Science and Nutrition in November 2014. But if you're highly sensitive to lactose, be careful about consuming products with sodium caseinate, recommends the U.S. Food and Drug Administration.
 
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Judee

Psalm 46:1-3
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Great Lakes
It's kind of a strange thing that people don't believe you when you tell them you're allergic or sensitive to certain things...

I get this a lot too from the medical profession. They always want to know what the reaction is as though some reactions mean allergy and some mean "it's all up in your head." I even had one older doctor tell me once that if I didn't get a rash, I wasn't allergic to the substance. :rolleyes::bang-head:

If they were bringing you a tray and you needed almond milk or something they would accommodate you. I'm not sure why these "professionals" are not able to think out of the box (or prepackaged tube feeding formula) on something like this. There are books on making blended tube feeding formulas so can't the dietary department make you something compatible to your body? Arrrggghhhh!!!!!
 

Hope4

Desert of SW USA
Messages
473
@Howard. I apologize for being so tardy with information.


Osmolite 1.2 has milk and soy ingredients

Sodium Caseinate, High Oleic Safflower Oil, Calcium Caseinate,

can someone please explain to me what these ingredients are it looks like milk protein to me but I'm not a hundred percent certain thank


Re: soy and high oleic safflower oil. They are both high in Omega 6. Having an oil which is high in Omega 6 as the main source of dietary fat, is likely to increase inflammation.

Can explain more, if needed.

Soy contains phyto-estrogens, too. Bad news for men.

Soy is also know to cause digestive and intestinal distress.

Legumes are problematic. Hard to digest and contain phytic acid which blocks mineral absorption. Can give more info, if needed.

:hug: and best thoughts to you. :angel:
 

Hope4

Desert of SW USA
Messages
473
That NanoVM seems to be a vitamin and mineral supplement for use with tube feedings that do not provide enough vitamins and minerals.

------


Here is something called Real Food Blends. Looks good, @Howard -- if the choices fit your desired food plan.

Here is the technical data sheet on the turkey and sweet potatoes meal:

https://www.realfoodblends.com/wp-c...s-Technical-Information-Document-04.22.19.pdf

Not organic, but real food, and not formula. :)

Here is a blog post with a video about the woman who started Real Food Blends. Her son has a seizure disorder, and so she developed the foods.

Excerpts from that blog page:

He didn’t always get real food through his feeding tube. When he first received his tube, we followed doctors orders to pump him full of formula. We hooked him up to his feeding pump anywhere from 6-8 times a day, and often overnight, trying to get him the amount of prescribed calories. He was miserable. Our family was miserable.

Seeking answers, I found a group of tube-fed people and caregivers that had this radical idea: Put real food through the feeding tube. It was truly a lightbulb moment.

Within days of starting to add real food to AJ’s tube feedings, his color perked up (imagine what you would look like only living off white food), he stopped vomiting daily, his reflux improved, and he started having regular bowel movements. Since that time, he now receives a whole rotation of quality proteins, whole grains, fruits, vegetables and healthy fats. Not many two year olds get beets, bison, kale, flax seed oil and quinoa on a regular basis!
...
Turns out $3 billion worth of tube-feeding formula is sold annually in the U.S. – and it’s growing. Just about all of those formulas contain the same basic stuff, mostly corn syrup / corn derivatives. None of them contained 100% real food or offer nutritional variety. This is what is being prescribed to kids like AJ who have neurological issues, and people who have cancer, ALS, cerebral palsy, MS, AIDS, and the other 150+ different conditions that could make a feeding tube necessary – all conditions that deserve the best nutritional support possible. (It’s worth noting that formula is not innately bad – many people wouldn’t be alive today if it weren’t for some of these specialized formulas!)

(Note from Kelly: I disagree with that statement, I actually do think it's bad, having seen the ingredient labels, but better than starving I suppose…)

That’s when the idea for Real Food Blends for healthy tube feeding was born. 100% real food, pureed meals for people on feeding tubes in convenient shelf-stable pouches. We’re starting with 3 different meal options but hope to add more quickly to provide nutritional variety.

Feeding a real food diet is rarely suggested by those in the medical community, but almost every nutritionist and doctor that has heard we have AJ on a “blenderized diet” gives us a pat on the back, saying “It’s the best thing for him.”

(However, one young girl on a blended diet was kicked out of her lunchroom because of this ‘unsafe practice’ of putting real food into her stomach!) It’s my hope that Real Food Blends makes real food via tube the preferred option for tube feeding. After all, what would you put into your body if taste didn’t matter?
Julie Bombacino is the founder of Real Food Blends. She lives outside Chicago with her husband Tony, daughter Luca and son AJ. ...
This is Kelly again. So what about you, what would you put into your body or your kids' bodies if a tube feeding was necessary?
...
Personally, I'd make my own, and use similar foods as Julie does, such as bone broth, coconut oil, and pastured meats, but also add in things like ground liver and cod liver oil and butter oil...
 
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Howard

suffering ceases when craving is removed
Messages
1,334
Location
Arizona
Thank you for the info and the responses. :)

As discussed with the dietitian, they are going to put me on a water saline solution 10 mL feeding tube drip overnight.

I need to be able to successfully take fluids through the new feeding tube, and after having established that, I can then go home at some point.

I explained that nutrition and caloric intake aren't emergent situations right now, being hydrated is.

The dietitian is aware of the product New Hope ..(?) product, but is unable to attain it for me at the hospital.

Would like me to try the osmolite 1.2, but my wife will murder me if I even consider it, on account of the dairy ingredients etc.... and my continuing gastrointestinal distress even now.

dietitian explained that this product will be easier to digest than last night's version, something about 600 versus 300, the way something breaks down, the way the intestines absorb, and the way this one wouldn't cause diarrhea and other nasty side effects. I didn't really understand what he was saying, but he said it well.

Hoping to sleep, hoping my intestines calm down at long last. :)
 
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