Lettuce/Spinach questions

[deb]

I have searched through some old threads but am wondering if those of you following a strict HFI diet might clarify something-- when spinach is mentioned as safe, does it matter if it is raw or cooked?
Stems or no stems?
Also, what has been your experience with Romaine lettuce?
Our daughter doesn't care much for spinach - we have been serving it raw as a salad - so I tried romaine tonight and she is suffering now....wondering if it was the Romaine or something else she ate..?
And lastly, any lower fructose lettuce/greens I might try?
Thanks!

[deb]

To clarify-I meant lower fructose than Romaine, - or low-fructose greens in general- thanks!

[ukbill]

Romaine is known as a sweet lettuce although I do quite well on the occasional odd leaf I eat.

Spinach is not 100% safe its a "tollerated" as apposed to safe.

I.E there is some Fructose and more importantly digestable fiber which will aslo catch us out.

I find normal "oak leaf" red, floppy or frissy leafed Lettuce is fine in small amounts.


I find that I can "tollerate" more of Spinach if I remove the stalks first also when "sweatting" the spinach (I cook it in a frying pan with butter,) If I pour off the liquid that comes out of the spinach.

However I find out when I have eatern too much or too frequently, 24 hours later if you get my drift.. I will not go into details..

Tinned spinach is never good for me.

[ukbill]

I think cooking only brings out the avaliability of the sugar / fibre quicker than eatern raw.

[denverjay]

I am not sure of the chemical makeup of spinach.

But I have always been able to eat cooked or sauted spinach without any ill effects. I do not eat it very often though, maybe twice a month.

[deb]

Thanks very much for sharing re the greens. She had one bowlful of romaine maybe 5 or 6 big bites altogether. There was a very small amount of garlic powder in the dressing. She did have some broccoli tops during the same meal- maybe altogether it was too much. She may have snuck a bit extra when I wasn't looking- altogether probably 2 tablespoons full of broccoli tops. When she has no greens at all she is wonderful- but in an effort to find her tolerance we seem to keep pushing her over her limit. Last night I made a spinach pesto sauce with walnuts a little garlic powder and steamed baby spinach with stalks removed- she loved it - and ate too much of it, it seems, as she was up all night.
I think her limits are decreasing as we remove the fructose - or we are just uncovering them- maybe a bit of both....plus, when I scour old threads and see that some of you tolerate x quanity of walnuts, I think I need to remember to scale that down to a child sized portion whenever we give her something not totally safe :-) thanks again, Deb

[charlie]

I think you are right Deb, it may be the combination build up. Also yes, the body does seem to get more sensative. On their own they may have been ok for a mouthful but romaine, garlic and brocolli tops may have tipped her over, also was it a delayed reaction from something earlier in the day.

Walnuts, some can't tolerate all nuts, I have never tried them with Meg as we were told not to. so yes, I think scale down, especially as her system is still trying to settle. Meg only ever has a small portion of a risk in a day.

At the risk of doing a Tikitavi........ Walnuts on Finelli are 0.2g fructose and 2.2g sucrose per 100g serving

[jennifer]

Deb I think we are having the same problem. My daughter seems to be extremely sensitive now. She had something with a little garlic powder yesterday and was also up all night. We cannot seem to add anything at all to her diet. She does ok as long as her diet is strict fructose and dairy free, but any little additions and symptoms return. Does anyone know how to get past this extreme sensitivity? Last night I knew she was having a problem before her stomach even hurt because when something doesnt agree with her she has a very distinct almost chemical perfume breath and that is when i know there is a problem, has anyone else had this?

[deb]

Thanks CHarlie for the walnut "stats" and general advice- by the way, so glad for you that they didn't actually lose the bloodwork in the end-- but how frustrating to be put through that grief!
Jennifer, when we went to see the metabolic specialist, she specifically asked us if our daughter's breath or urine ever smells sweet or if it ever smells like acetone (nail polish remover). Apparently this can be a sign of an underlying metabolic disease process (ketoacidosis, maybe?) In our case the answer was no so we didn't really explore that further, but you might want to bring that up with your daughter's physician to see if that sheds some light on what is going on....

[jennifer]

Deb, that is exactly what I was thinking, the problem is I can't find a metabolic specialist in our area and so far the doc seem to brush over it when I mention it. Was your metabolic specialist a pediatric or adult? Do you think a geneticist would be the same as a metabolic specialist?

[colormist]

I don't think a geneticist would be the same as a metabolic specialist at all. My geneticist was concerned with my medical history, my family history, and my genetics. I would think a metabolic specialist is more like a dietician/gastroenterologist/etc. They're more concerned with how your body processes food.

[lucky]

Hello Jennifer,

Our son is primarily looked after by two specialists at our local Children's Hospital...

1. GENETICS: "Biochemical Genetics" (Metabolic/Genetics) : (Head of the dept.)

2. GASTROENTEROLOGY: (Head of Gastro dept. -and- Head of Pediatrics)

Between the two, we are well covered. Initially, our Pediatrician referred us to both with an "urgent" timeline to the Genetics (Metabolic) dept. Be prepared for a wait though... Unless a patient is in a life-threatening situation (already admitted in hospital/liver distress), there can often be a long wait for the initial consult.

Our initial Genetics appt. took 6mo. and Gastro 15mo. and both requisitions were sent at the same time (both depts. were at capacity for non life-threatening patients).

Good news was that we were sent initial info on reduction/elimination diet to help us and our pediatrician in the interim. This made a WORLD of difference to our son's health, and it helped us collect clues and patterns while we waited. In addition, certain blood tests etc. were done beforehand/during this time as a baseline.

Doctors were thorough once our son was on everyone's 'radar'. In the end, by doing these things in the interim, we effectively shortened the observation timeline that is generally done after the initial consults when diet protocol is given. That's the time period allotted to see how the patient's system responds during fructose 'detox'. We did ours while waiting the 6mo. for the initial Genetics consult. And we tried to be as efficient and meticulous as our specialists... If we were told to do something, we did.

By the time we saw the Genetics doc (with a 3hr consult), we were good to go and had blood taken for HFI testing that appointment and sent off. In Canada, the testing is covered so there is no cost to the family if ordered by the specialist. Ultimately, if the initial patient is positive, the rest of the family is also followed up with testing.

Jennifer, either specialist will be good to initiate investigation as they usually work together and electronically share files. And at some point, both are needed to watch over your child. Although we got into the Genetics (Metabolics) dept. first under an "urgent" status, we were told -generally speaking- a patient is first seen by Gastro to take an initial detailed history, rule out other possibilities, and observe diet before being referred to Genetics (where the whole process is repeated again to catch gaps in info). Otherwise, you can imagine the system would get clogged up (and the waiting times longer) as many issues (from moderate to extreme) are simply not of a genetic origin. However, obviously sometimes there is wiggle room (in who you see first) as seen in our son's case...

After that, regular appointments were in normal time frames...

Hope this of help. All the best,

Lucky.

[jennifer]

Thanks so much Lucky for the great information. We are with a great gastro right now but with all the testing so far she has not referred us to gentetics and I think it is time for us to go there. Although I think you are right all of this waiting has forced patience and also given us time to try the restricted diet and gather information about how she reacts when something is added back. So maybe when we finally do see a doctor about it, maybe our information and observations will help in making a diagnosis. The waiting is so hard because as much as I try to make yummy food for my daughter she is just so sad all the time and we have tried everything to keep her upbeat and happy but for some reason she is taking everything really hard.

You are so lucky testing is covered in Canada, maybe that is why they are so reluctant to test in the U.S. We have stated to our doctor that we would be willing to pay and we know it won't be covered but they still do not see a need to order it. As I see it, there is no downside, its just a blood test but I guess they would rather run more invasive tests and check everything else, just no logic there.

Thanks again~

[charlie]

Jennifer - you asked: Does anyone know how to get past this extreme sensitivity?

Yes, time is the only answer. Keeping the diet easy, plain and simple and what works well to be honest if you can stick it out for about 4 years we were told. Then, if it is FM rather than HFI you may find the system has settled enough to cope with more and rechallenge with fructose. If definately HFI then you can start adding little bits but while they are so small and fragile the plainer and easier the food to digest the better.

Garlic is something that can set alot of children off even if they don't have a food problem so maybe avoid that, it is also on the no list for FM. The best thing is build up from a staple diet of rice and chicken, fish, plain other meats and slowly add in wheat, eggs, cheese, dairy (if not lactose intolerant) and get a good reaction day after day after day before you start experimenting. The children will gradually start to enjoy their food as their poor tummies won't hurt every time they eat. But patience is the key - there is no shortcut with this...

[jennifer]

Thanks Charlie, you are right patience if for sure the key. We treid the garlic powder because we were being pushed by the docs to try to advance her diet and we thought it would be a safer place to start then giving her suger or an apple which was their suggestion. Good thing we didn't try the apple or suger because the garlic powder ended up keeping her up at night and home from school, I can only imagine what would have happened if we took their advice. I guess at least my daughter remembers how it feels to eat something bad again so maybe she won't be as sad when she has to stick with her plain diet. I think she had forgotten how sick she was since she had been doing so well and so she did not understand why she couldn't have her "old food" back as she calls it.

[ukbill]

The common link is Garlic "powder"

What is in the "powder" ??

I will bet any mony those strips that detect sugar will go Dark blue becasue I'll bet there is added Fructose particularly if its "low salt" version..

It is easy to make you own Garlic salt if you want a quick garlic flavour added to a meal..

Simply crush a clove or two and put them in a small jar with some salt and mix it all around.

The Garlic oil will in time spread through the salt and give you a quickly available garlic flavour and so long as the Garlic remains in the jar very very little risk of Fructose contamination as well

Enjoy

[jennifer]

interesting, I wouldn't have even thought about possible fructose addes to the powder. I will try to make my own salt. Sadly the garlic powder we used had her home from school since she really did not feel well, good thing we didn't give her a lot. I figure at least it will be good information to tell the doctor at our next visit, hopefully it will convince her that we need to do further testing.

[charlie]

Hmmm, Bill, for someone who is so vehement about glucose you don't half advocate alot of garlic and onion etc which at the end of the day would have just as much of a build up of fructose problems. Also, fructose is water soluble so would it not get absorbed in the oil too?

Garlic - now you would have to eat alot to get to 100g but that would have 0.6g fructose and 0.6g sucrose.

If there is any suspision of FM it is also on the no list due to fructans.

[jennifer]

So far she only tested positive via breath test so it could be FM, but she can eat things with wheat(bread, pretzels,crackers etc) with no limits , (and she eats tons of these things)and it does not cause her any problems at all so it did not seem like fructans were a problem for her.

[ukbill]

From the amount of Garlic I eat I would estimate Fructose load is about (100g / 0.9/100 * 2)

As 1 clove of garlic will weight less than 2g that works out as less than 0.0018g Fructose..

I can deal with that in order to have tasty food!

The amount of onion I eat is less than 2 g a day taken over a week so also not a problem Fructose wise.

I have eaten 10 or more cloves of pickled Garlic at one sitting, with no detectable side effects, on occasion.

Other than not having any friends for a day or too of course

I think Garlic crushed and put in oil to allow the Garlic oil to transfer, it should leave the Fructose in the water behind.. oil and water don't like mixing much so if you avoid the tiny amounts of water in the bottom of the jar (from the garlic) you will be nearly 100% fructose free.

The same works with fried onion put in oil.. the oil takes the onion flavour and leaves the Fructose in the water left in the onion.