Smoothie Maker Recipes Wanted

[tummyache]

Help! My wonderful husband bought me a Ninja Smoothie Maker thinking how wonderful it would be for my weird diet....but I can not find any recipes that I can use -- they all have fruit and/or dairy. Anyone have any suggestions? I can use unsweetened almond milk, rice milk, or none + veggies and dextrose. So far, every thing I have tried is YALK!

[colormist]

Everything that I can even think of to put into the blender would not taste great mixed together. I also think those things are more for the fruit- & vegetable-eating folks and it would be really easy for an HFIer to get fructose poisoning.

I also think a lot of the things that might taste okay would actually taste better as solid food (chicken and wild rice, for example).

[antonia]

Can you do lactose free dairy, or just no dairy at all? I was thinking yogurt could be a good base for something which you can get lactose free. Although I can't think of anything that sounds good mixed with it other than some sugar free cookies, like a "cookies and cream" sort of thing? I make sugar free oatmeal cookies that I do break up and sprinkle on plain yogurt for Palmera sometimes which is what made me think of it. Maybe that would be good with almond or rice milk too?

Also, those things can be used used to make hummus or pesto. Can you do beans or lentils for a hummus like spread? We have not tried beans, yet, but I do make pesto in a similar little processor like that. Would it make mayo?

[tummyache]

Fortunately, I can eat most green leafy veggies + some others (I'm not as sensitive as colormist) ... but I have to be 100% dairy free [cow, goat, sheep, etc), unfortunately. I like the idea of green smoothies for snacks to keep in the fridge. I need to eat every 2-3 hours to keep from having hypoglycemia problems. Getting enough calories, since I have to eliminate so many foods, has always been a problem for me.

[tummyache]

I found one recipe that might work with alterations ?:

GREEN LIMEADE SMOOTHIE
• 1/2 English cucumber, sliced
• 1/2 avocado -maybe a 1/4 of a small avocado?
• 2 handfuls baby spinach
• 3-4 limes, peeled (adjust to desired amount) --yes! maybe 1
• 1/2 tsp cinnamon
• Sugar to taste [or omit] --or use dextrose
• 6-8 ice cubes
Directions
In blender, add cucumber, avocado, spinach, lime [all three, but peeled], cinnamon, sugar, ice and blend on high until smooth.

[colormist]

I know each of those green foods has fructose and I worry that having them all at once in one drink will be too much. Just be careful and don't have the entire thing all at once. I got violently ill overindulging in lemon juice once and I think that ruined me for life. It's going to be a long, long while before I'm ever able to even buy lemon juice without gagging.

[antonia]

Could you add starch or grain (and decrease veggi load) to make it more safe? My mind goes to gazpacho (not the tomato based kind) or cold soup thickened with a starch. Add safe spices or herbs for flavor. Other than that I can only think of milk based with a starch and more dessert flavors such as vanilla and/or cinnamon. I know some people drink corn starch shakes to keep blood sugar stable. Something like this has to taste better than that, right?

Let us know if you find something that works. We have one of these little machines, bought about a year and a half ago, before HFI was on the radar for Palmera. I tried making a couple smoothies for her, and she dutifully TRIED to like them... took a few sips, poor thing. It still sits in the cupboard unused.

[ukbill]

If you are having to eat every 2-3 hours I am certain thats because of the high fructose load in your food. I was exactly the same before sorting out my diet.

After all the good carbs and proteins in your food have been converted into Glucose this will be "burnt" in your body in about 20 odd minutes.

So when the amount of good glucose supplied from you meal starts to drop the Fructose Phosphate left in your blood supply will fox your bodies regulatory system into thinking there is still food being converted (because your blood still contains Fructose it cannot differentiate from glucose or lactose) and your system will not release Glycogen from your liver to keep your blood sugar level safe.. hence Hypo attacks.

I Have experienced this myself and heard form many people who have suffered the same.

Also there was the case of a young HFI boy in ICU for 48 hours because he ate a lot of Smarties. They were trying to stabilize his Blood sugars by pumping him full of Glucose via IV.. Unfortunately this glucose must have been contaminated with Fructose or Sorbitol because he kept see-sawing into Hypo every time the glucose ran out.

After they listened to my advice and left him alone to recover himself.. within a couple of hours he was ready for release from not only ICU but the hospital.

Not blowing my own trumpet here just pointing out the dangers of good people trying their best but getting it so very wrong for us with HFI and also past bitter experience with Doctors, dieticians and hospitals.

In the UK our best hospital that deals with genetic issues has a "safe food list " that could possibly prove fatal if followed by the parents of a young baby! It is very far from HFI safe.

I think a complete re-think of your diet is urgently needed and if you get off all sources of Fructose (including Glucose and dextrose, Glucose I know is unsafe.. Dextrose well lets say the jury is out but I believe its made from GLucose so some contamination is very likely and not impossible) for a few months, say 6 months, this seems to be about right before many improvements are seen, your other problems will mostly go away and you will start feeling so much better!

Its like a switch.. for months (or many years if not all your life) you feel horrible all the time .. you change your diet and feel maybe a little better.. but still the problems remain.. but after about 6 months suddenly one day you wake up and you feel filled with sunshine and although it will not last all day every day you feel better and better..

I hope people around you can put up with your singing because if you do this they are going to hear an awful lot of it!

Wishing you all the best and hope you feel better soon, because I can remember how bad I felt all the time before going low Fructose.. its not nice at all.

Keep smiling

PS
To help keep Hypo's away Ahh I was going to suggest a milkshake made with milk, plain natural live yogurt and corn flour starch. This is used by parents of children with Glycogen storage problems.. the corn flour breaks down slowly into pure glucose and in the manufacture of the cornflour all the germ of the grain is removed (the part that contains quite high levels of fructose, by weight)

It is important that the cornflour is not cooked because then it breaks down quickly. Maybe you can work out a way to drink it in water or maybe peppermint tea?

I have tried cornflour drinks and I have to say they are not pleasant to drink.. being very powdery in mouth feel.. however they really do work very well indeed.

I usually have a cornflour milkshake before doing any extended heavy physical work. It keeps the Hypo away all day. Well 8 hours at least.

Hope this helps

[antonia]

Tummyache, we successfully made a smoothie in our nutribullet by modifying this oat based recipe!

thestayathomechef.com/make-ahead-apple-pie-oatmeal-smoothie/

Subbed out the apple sauce with homemade rhubarb sauce. Since rhubarb is naturally high in pectin like apples, it makes a great replacement for applesauce in recipes. The oats do a great job of thickening up this smoothie. In fact it was too thick after refrigerating and I had to thin it with some water. We used dairy milk and yogurt. I know you can’t eat dairy but maybe you’ve safe alternatives. I think any milk would work (recipe calls for almond) and since the oats do such a great job of thickening the yogurt might not even be necessary. We used 1/4 tsp alcohol and water based vanilla extract and a few drops of cinnamon oil for flavoring. And, of course, you can use dextrose in place of the brown sugar to your taste.

Palmera had a play date that involved a stop at Starbucks and she really enjoyed having a smoothie to drink with her friend.

[tummyache]

Mostly, I have been using the Bullet for unsweetened rice milk + corn starch drinks, as ukbill suggested. Took some getting used to, but it really helps with the hypo! Also, have fallen in love with grits and hot cream of rice cereal at night [unrelated to the Bullet, to help sleep better at night = per colormist]. This forum and folks on it are a fabulous resource to all of us. Thank you for being here and sharing!

[antonia]

Palmera also faithfully eats a bed time snack. She sleeps beautifully and doesn’t wake up starving since we started doing that.

I figured out why my smoothie was too thick. I think I doubled up on the yogurt. In a hurry while making it. However, I think I will continue making it that way because it makes it higher in protein. Just happy to find some ingredients that are safe and work functionally. Now to play around with the flavoring. Some mint might be nice.

[antonia]

Also I think I read somewhere that pectin works with the calcium in dairy products to thicken them. So if you’re using non dairy milk you may want to use one with added calcium.

We’ve had problems in the past with yogurts thickened with pectin. Not sure what kind of reaction it is, fructose, allergic or GI, but after reading that rhubarb is a natural source of pectin I know now that it must be the source or manufacturing of commercial pectin that is the problem, because she has no issues with rhubarb.

[ukbill]

It seems that there might be 4 genes responsible for Fructosemia.. any 2 producing Fructosemia / HFI type symptoms!

So the huge variances between us might now start to make some sense.. Because there are well over 36 posible versions of Fructosemia / HFI!

This is going to make life difficult for all of us.. however it also might make our condition 2 or 4x more common than we thought!

Therefore we might get better recognition and help with foods not containing unsafe sugars in them when no sugars are needed.. (such as meat products like sausages and meat pies)

Anyway an interesting development I think you will agree?

Yes the cornflour milkshakes do take some getting used to but are a great help when needed

[tummyache]

I make my own rhubarb preserves [just rhubarb + a little dextrose] and use it to gently flavor the unsweetened rice milk [or almond milk which is high in calcium - but some HFIer's may have a problem with almonds]. Sometimes, sprinkle in cinnamon or coco for flavoring, just to get different flavors.

[antonia]

Ukbill, interesting for sure. Especially for those struggling to find diagnosis. Where do you find this information? I would like to share it with Palmera’s doctors. I struggle to understand the genetics. Do you mean four genes or four mutations?

[tummyache]

I see from Livewello there are over 50+ snp's of the ALDOB gene that cause HFI [also known as Fructosemia]. What other 3 genes are you referring to ukbill; and where did you get the info? Interesting!

[Stefanie (Ziba)]

UKBill, please share where you have read about four possible causes for fructosemia. Like Antonia, we are still in Diagnosis No-man's-land.
I can say without exaggeration that I have not have a good/full night's sleep in over four years. Remy has never slept through the night. He used to wake up ill, but now he is just restless/hungry. I try to get him to eat carbs before bed, but all he wants is meat/dairy. Oatmeal doesn't keep him full. Please tell me exactly how you make this "milkshake" because he and I need to stop waking up 10 times every night (I have tried "milkshakes" with goat's milk and yogurt but it upsets his tummy from too much lactose).

[Katie535]

I have tried these smoothies- I use Greek yogurt- plain- full fat, half and half, ice, and corn starch- and I put it in the blender. It is so good! I am going to try a little bit of cold brew coffee to add some flavor as an alternative. Thanks for the recipe! It keeps my head clear and my blood sugar stable until lunchtime :-)

[ukbill]

The information regarding the 4 genes was sent to me by a new member of the Fructosemia group. She had done a research paper (essay) for a school /collage project / exam (not sure which).

It was very uptodate quoting a lot of recently published research into the causes of problems with ALDOB B, which is the compound that in those of us with Fructosemia is either damaged (so it will not work) or simply missing in sufficient quantities to reduce the Fructose Phosphate in a timely manner, so it will not affect the general gluconeogenesis and cause a Hypo and associated effects.

She is rather shy so I will not post it here without her express permission to do so, but it is very very good and I have learned a lot from it. There is a lot of research going on right now into our condition

Most of this research has been carried out by Dr T Cox in Addenbrookes hospital the very chap we are seeing in November!

However we only have 2 hours with Dr Cox which will go by far far too quickly.. I have many 1000's of questions myself.. however I have to be sensible, the meeting is not about me, so we need to prioritise the questions into a list that helps all of us.

I intend to send him this list at least 3 weeks before our meeting so we can spend the time talking solutions and ways forward to support everyone with accurate precise information.

We also want someone (either Dr Cox or one of his research associates) to overview a series of videos on Fructosemia, our safe food, safe cooking techniques and recipes that we intend to make.

We also need a website which will cover all the aspects of Fructosemia and be kept up to date with new research.

The idea is that this web site will be the GO-TO for all medical professionals interested in Fructosemia and ALDOB B issues, but will also be worded so that none medically trained people can understand and learn from it.

So we intend having a short easy to understand heading to each section (I.E why do we go Hypo?) followed by a larger section which will go into as much detail of the metabolic process as we can find.

This is a BIG project! So we (currently Karen my partner and myself) will need some (if not a lot) help at times.

Not the least we will need some fundraising because to do this properly it needs to be a 7 days a week job and some professional (paid for) work will need to done that neither of us can manage.

We also intend attending conferences and lots of training on setting up a foundation / medical charity so the work and support can carry on long after my time here is done.. and at 62 now I have felt the wind off old father time's scythe a few too many times already!

So I really want to get this done while I am still able.

A cat has nine lives so they say.. If I am a Tom cat.. I now have 3 legs 1 ear 1 eye and a bit mangy around the edges but still ready to have a bit of a scrap if needed

When we are up and running properly we intend to give talks to all and any medical association and training program, to promote the condition and increase the medical knowledge amongst trainee and qualified dietitians pediatric Consultants, doctors and midwives and health visitors.

So increasing awareness of the condition, so it can be picked up quickly and we do not lose anyone's baby under the "failure to thrive" label.

If we can we will do this world wide.

We will also need to get our material we produce translated into as many different languages as posible so we do not hear again of a Doctor saying "we do not get that condition in our country".

I lost a son at 6 months old.. to SIDS and my daughter born 6 years later was labeled as "failure to thrive" (although she got through it and is now a very fit and healthy grown up woman of whom I am very proud of course so I know only too well the pain and heartache of the loss and the shear panic having a sick child with no diagnosis causes.

No one should have their soul hammered in that forge and if I can help even avoid one Hypo event for a baby / child / adult then the effort is worthwhile.

Sorry I seem to be very philosophical today. Not had good news over my eyesight.. I got diagnosed with a bad form of Glaucoma yesterday and might have to give up driving before too long.. been as this is my livelihood. It is concentrating my mind quite a lot just now.

Anyway..

As always folks ... keep smiling

[Stefanie (Ziba)]

Thank you for sharing, Bill. My heart breaks for you losing your son to what may have been a metabolic crisis labelled "SIDS". We appreciate all your efforts and hope you have many decades left to work towards awareness (and get into a few scraps, if necessary)
:-)