onions and spices

[Benjamins mom]

Dear UKBill, I am a daily visitor to this site, but am listed as a 'guest' because for some reason I cannot get an account created. I am looking forward to your words of wisdom about fructose intolerance. I am confused to what you have discussed about onions in your recent posts. First of all....is there a difference between a leek and a spring onion? Does the store really know the difference or could it be easily labeled incorrectly like yams/sweet potatoes are? Secondly....what type onions do you 'caramalize' and what exactly do you mean by that cooking terminology ---stir fry in olive oil until crunchy? What if they are in a crock pot all day? Then ,at restaurants, you mentioned non-tomato sauces....but do you worry about an overload of garlic or other spices/herbs that may be 'too much' ?

My son will be 4 the end of this month. He was diagnosed with fructose malabsorption via a breath test when he was 14 months old. He had a negative blood test for HFI, but does best on the strict HFI diet. As little as one tbsp of a fructose containing food has caused him to become hypoglycemic 2 days later. It is the delayed reaction that puzzles his doctors but they are convinced no harm will be done if he ingests small amounts of fructose. I am hesitant to believe them and am awaiting an appointment with yet another metabolic doctor next summer. Meanwhile, I do pull his portion aside often when cooking and then add the tomatoes etc for the rest of the family, but it is often easier for the whole family to just eat his food....so we do frequently, but it is bland and boring since I am hesitant to add any spices/herb and have definately been avoiding onions, no matter how cooked. SO, if you could clarify, that would be helpful. Thanks ...and welcome to the board. This board has been a tremendous help to me, both with knowledge and emotional support. As you seem to be aware, it is stressful knowing there is something wrong with your child. Knowing specifically that there is a major problem with fructose, yet not having the medical support is frustrating. I have received a great deal of support from everyone here. I hope you find the same. :)carrie

[ukbill]

This delay is rather unusual to be sure, is this common in DFI? perhaps someone will tell us as I am puzzled?

I wonder if the first dose of Fructose is making him sensitive so the second dose knocks him down?

Perhaps he is able to produce a little of the enzyme that breaks down the Fructose residue which is what is missing in us HFI's.

Once this has been burnt up then the next day any fructose in his diet gets to him?

Can you feed him carbohydrates or meat to get him out of it?

The reason I think this might be happening is because a high percentage of sugar in food is adsorbed through the mucous lining of the mouth and stomach, not the intestine. So Fructose in particular can be in the bloodstream in seconds, why is the reaction taking days??

Just my musings anyway :-) any suggestions anyone?

OK the very best thing for him if he is going to have to avoid all fructose and sucrose for the rest of his long and happy life is for him to be able to identify sugary and sweet things easily, and in very low doses.

If he has a 2 day delay then there is a problem in that he will not correlate eating something sweet with being ill as I do so will get to like sweets.

Food need not be bland and boring but if it is it will not hurt him too much, 1/3 of the worlds population eat rice 2 or 3 times every single day of the year. Now you cannot get more boring than a bowl of plain rice! However the Chinese race seem to thrive and live long and healthy lives.

Spices and Herbs seem to have no really bad effects on me, these days now I have IBS strong Chili and Currys cause lots of trouble but have to be eaten every so often ;-)

OK Onion question.

Spring onions, they are the salad onions that have roots and are thicker at the white bottom end near the roots sometimes forming a white bulb at the bottom and thin stem and leaves that are round.

Leeks have "normal" leaves like grass (to which they are related)
A full sized Leek is a mighty beast longer than a mans forearm and up to 2 " thick

There is a variety of Spring / salad onion I cannot eat they look like mini leeks but no roots in the packaging and they also have no bulb at the bottom they are perfectly perpendicular as thick at the top as the bottom.

They usually do not have much in the way of green tops as they are chopped short in this variety.

Cooking Onions,

The only Onions I usually cook are Shallots.
This is because a very small amount of them will create the flavour of a lot of normal onions. In flavour terms a small shallot about 1" wide will have as much flavour as an onion 3 times its diameter.

This is only my opinion and I accept other peoples opinions may differ.

I cook onions until they are deep brown in colour if frying it is difficult to do this without incinerating them and ending up with little charcoal sticks!

When Onion is cooked to translucent then it is at its worst!

A word of advice with frying oils, butter is very "none stick" inthat food fried in butter rarley stick to the pan, however butter but burns at a low temperature.

Food cooked in Butter browns far quicker than in Olive oil! (olive oil has antioxidants and when browning we are oxidizing the food ie. controlled burning ;-) )

You mention Stir frying.

This is a method of cooking used in the far east I have a "WOK" it looks like a large thin metal bowl with a metal handle stuck on one side into which is a thick piece of wood riveted into place so I have something to hold that will not burn my hands !

They work best if you have a gas cooker of I use a camping gas ring if cooking where ther is no gas cooker.

I works well on a good hot camp fire!

The idea is to Flash Fry food for a few moments at very high heat. A complete meal for 4 people can be prepared and cooked in less than 30 min.

Well it would feed more but we all like our food!

I do tend to eat very large portions (commonly twice the normal recommended portion) however I cannot eat between meals as I cannot just buy snacks that are safe for me to eat and I am very fed up of eating potato chips (Crisps in the UK)

Until I was 25 or so I always carried emergency food with me in case I needed to eat.

If I got hungry or thirsty I would go Hypoglycemic so if out on a walk I always carried a lot of water and food with me.

Now I am older I can now go for longer between meals without having problems.

I used to have to eat very regularly and frequently when growing up!

When Stir Frying I usually use a mix of Peanut Oil and olive oil (beware of peanut allergies!) sometimes called Groundnut oil, I also add a little toasted sesame oil to the mix to get a nice nutty flavour to the food.

If I am cooking something that is bad for sticking (fried eggs for example ) then nothing beats butter! sorry very unhealthy but so very nice.

I can make French onion soup that is just tolerable to me on a good day but it takes about 2 days cooking for the onions to caramelize sufficiently enough to be edible to me.

I cannot see any problems with giving him any herbs.

As for spices only the sweet tasting Cinnamon causes me any worries.

I do know Fred ( a HF a bit older than me) likes it and adds it to his rice pudding but it is not for me.

Yes I agree the support offered on this site is far better than any doctor I have ever seen!

No one here has tried to kill me (YET ;-) ) when I had my diagnosis in 1981 they gave me 100 times the correct dose of fructose intravenously 150 Grams! that 15 tea spoonfuls!

I know a charity that might have some information for you.

It is a charity run for support of parents of children with Metabolic disorders in the UK.

It used to be called RMTDC but now called Climb they fund research and provide support and information to parents and doctors of children with Metabolic disorders. They can be contacted here.

CLIMB (Children Living with Inherited MetaBolic diseases) – Lesley Greene, The Quadrangle, Crewe Hall, Weston Road, Crewe, CW1 6UR. Tel [phone]/Fax [phone].
www.climb.org.uk/

Yes I like your approach to cooking for him that is how I cook to this day. Please remember he might want seconds! (I went through my childhood never getting second serving because of this ;-) )

Let him try new foods like different cheeses, his taste will expand to include with time lots of much stronger flavours which will expand his range of food available to eat.

You do not say which country you are in so I cannot be specific about places to buy food from.

Do not panic about him not getting enough vitamins! The only vitamin supplement I have is Vitamin C which I take in a slow release capsule (with Zinc) since i have been taking this I have been largely cold free for 3 years now.

Although I do not eat, as far as I know, anything which is a source of Vitamin A my body produces more than enough of the stuff. If I take a multi vitamin then I very quickly get painful joints which are being caused by the excess Vitamin A crystallizing out in my joints!

PS an major advantage of no sugar diet is no rotting teeth! I have never feared the dentist like all my friends do!

I hope this helps?

Regards and best wishes, you are not alone!

Bill A.

[Tammy]

My daughter is HFI, confirmed through a liver biopsy. When she accidently gets even the smallest amount of fructose, it takes 2 - 3 days before we see any reactions. So the delay isn't a surprise to me. One time a restaurant made a mistake on Sat, and she was fine until Tues. I don't know why it takes that long, but it always does. It does make it harder to pinpoint the problem when it is so delayed. Even so, she knows that is why she is sick, and happily stays on the diet.

[Benjamins mom]

Thank you both for your replies. Tammy, it is your description of Regina's reaction, along with others on this site that encourages me to continue my search to get to the bottom of Ben's issues. So..thank you!! Bad reactions lately are accidental. The most recent was from what I think were spring onions that cooked all day in a crock pot for stew ...my first attempt to flavor food with something other than celery and salt. The reaction was 3 mornings later and he picked at dinner that 2nd night --totally fructose free those couple days also. So, I thought it was related to the lack of dinner but then remembered the onions so I suspect it was from that. Today he picked at lunch AND dinner, which is very rare --I can usually get 2-3 good meals into him each day, so I will check his BS in the morning. If he is fine, the I am somewhat convinced that he only has hypoglycemic issues when there is fructose in his system within the past 2-3 days. Maybe someday I can convince a doctor of that?! Or he'll just learn his body and know what to do.....

Bill ....wow, so much info, thank you! I am in the US. Thank you for the UK website though, I will check it out. Ben is amazingly good with his diet. He sticks his hand up to anyone who approaches him with food and announces he can't have it because he is fructose intolerant and he will seek me out from across the room or playground all proud that he did not accept the offered food. He is totally fine in situations when there is no food for him, he is too busy running around playing or telling jokes and stories to everyone. My pediatrician says he seeks activity for fun/comfort not food...which in the long run is a good thing. He does get thirsty a lot lately, so I am keeping an eye on that.

When I do cook separate things for the rest of the family, it is a sauce or a vegetable dish or something, so he has unlimited servings of the fructose free food, because some nights he can really chow down! He especially loves his noodles, but no seconds are allowed until the protein on his dish is finished. Our meats are usually bland, but I will occasionally make a tomato sauce or something for the rest of us and keep it separate. He will ask now and then for the sauce or veggies that the rest of the family may be eating and I frankly tell him that it has fructose in it, it may give him a bad tummy ache and he will be 'jittery and pukey' in the morning as he describes his symptoms when he is ill , and that it is HIS decision if he wants it or not. He has always opted to avoid the food and stops asking for it. So, he knows!

I do worry about the vitamins, but it seems like everyone else on this site is okay and I am encouraged by the older members living on this diet for a long time.

well...thanks again.
carrie

[Benjamins mom]

Thanks Kristen for the chives reminder. I actually have some growing outside and completely forgot about them for probably 6 months! I have added them to dishes and eggs---thanks for the reminder! It's not like Ben eats a lot of green things, I mean chives was one of the few and I just totally forgot!! oh well....

also, I look forward to some sort of herbs/spices thread .... thanks!!

:-)carrie

[ukbill]

Wow thanks to you all for the info I am learning lots from all this.

Regarding Onions.

Has anyone else tried them raw?

Spring Onions are very sweet when cooked but I can eat them raw as with most other onions, Excluding Leaks.

I must stress the point that I am able to tolerate more Fructose now I am older than when I was younger, and my swings in sensitivity from tolerant to non tolerant are far less pronounced now.

However I did not have IBS when I was younger so perhaps its the same amount of enzyme just in a different place now??

Regarding blood sugar and Fructose.

I have been told that Fructose is a blood sugar.

Which is why I cannot give Blood or we think receive it?

IF I do need a transfusion I will need a Glucose drip at the same time to counter any Fructose in the blood I am receiving. So I was told by the Blood transfusion service in the UK.. perhaps I understood them wrong?

With regards to the enzyme in the mouth, I can confirm I can "feel" the Fructose in far lower levels than I can taste it!

Pure Fructose is harder to detect than Sucrose (Sugar). Plenty of things taste sweet to me but not to "normal" people so I use the temperature test if I am not sure if the sweetness is caused by Lactose, Maltrose or something less nice.

IT feels like a drop in temperature in my mouth where the fructose / sucrose has touched my mouth the skin go's cold.

Or feels cold to me anyway

With regard to flavorings I love Celery seed salt when I can get it!

It is fantastic put into the cavity of a trout with some butter, wrapped in foil and cooked in the oven or on an open fire!

For some reason it goes very well with trout.

I have only been told of a problem with the Liver being "burnt" and the damaged areas being replaced with fatty deposits leading to scoliosis of the liver if sugar is forced onto the HFI.

Unfortunately this has happened in the past!

Nothing I have read or has been said to me before has mentioned about Kidney or intestine problems.

However the kidney is a point that would match into my experience.

As a child and into adult hood I have always had to make sure I do not get thirsty!

For some years after I was diagnosed (and badly poisoned in the process) I kept having Diabetic tests because I was constantly thirsty and drinking water all the time along with night time sweats that got so bad the bedding had to be changed (not sure if any correlation with the he sweats).

I occasionally get very thirsty without a proper reason (ie hot day working hard).

I am not so bad with thirst now but it used to be almost as bad as eating sucrose!

I quickly lost motor reflex and coherence as I occasionally do now however I am always on the lookout for this particularly if I have not eaten recently or had enough to drink or eat.

I know all about being "jittery and puke"

I do not know if this is a help but I always feel "good" for a day or 2 after eating Liver I know it is a very good source of B vitamins but I do feel stronger and "warmer" if that makes and sense?

If I take a B vitamin supplement I feel a occasionally a bit stronger but not "warmer"

If I get Low in my blood sugar I do feel Cold or at least cooler than normal, along with tiredness, a bit irritable, however not always hungry.

I have had to force feed myself only last week when I noticed the signs.

I think perhaps for a young child cooked onions may be not advisable, perhaps for me too

I cannot say Garlic has ever caused me trouble but then one or 2 cloves in a large pan of food will have only a marginal effect anyway. They do not taste sweet to me even when cooked.

Wishing everyone the best with the coming season of good will etc.

With this in mind Chesnut stuffing is out! Much stuffing contains too much dried onion for me to, however home made with onion is far worse!

Keep smiling

[Tammy]

Bill,
I don't know about this being a blood sugar, but I do have some experience with recieving blood.
Regina was very sick spring "05, due to blood clotting. she spent 5 weeks in the hopital, with several surgeries. Over the course of that time, she recieved 20 units of blood and/or blood products. We didn't have a problem with any of it. She didn't have any glucose drips with it. We always made sure there wasn't any fructose in any of the IV bags. The IV's all had dextrose. But even these weren't given with the blood. Maybe we were just lucky, but all went well. So you might want to ask your Dr about it again. Also, they've never said she can't give blood, either, but then I've never asked about it.

glad to hear that you are also learning things from here. It turns out that NONE of us know it all. Even us "old-timers". These young whipper-snappers on here do a lot of good research.
Tammy

[ukbill]

Tammy have you spoken to Fred about the 05 problems??

Before I went on the slow release Vitamin C I used to get frequent colds and fly type illnesses.

Because I cannot take the "normal" cold and flu type medicals I mix my own up.

I slice a Lemon into a jug and then thinly slice 1/2" root ginger into the lemon I pour on boiling water and mash it around a bit!

No sweetners needed!

Wonderful for throats but I do not know about us HFI's having stronger enamel because after my second Jug my teeth are porous and very sensitive to everything! Cold air, Hot drinks the texture of milk! (OK thats an exaggeration but you get the idea!)

It takes about a week for my teeth to return to normal.

There is a better way to sort out sore throats a good gargle of neat Malt Scotch Whisky clears all bugs out of my throat and gives me a wonderful glow all though and a very peaceful night!

It is a crime to spit out the Whisky of course

Hay! Less of the "Old Timers" I for one can still run rings round most teanagers!

[Tammy]

Bill,
Yes, Fred and I have discussed this blood clotting issue. But thanks for asking. It was quite awhile before we found the "co-incidence".

Luckily, here we have a lot of cold meds and things that Regina can take. So guess she won't get a chance to try your whiskey idea. Would be interesting to watch, hehehe.

I don't know if it's because of the enamal or not, but Regina is 24 and has never had a cavity in a tooth. The only teeth she has ever had work done on are the 4 front bottom ones that she broke off. ouch.

Think I'll just sit back and watch you run the rings. No sense in both of us having a heart attack. ;D
Tammy

[ukbill]

Kiersten,

Yes that is my problem but I could not spell hypoglycemia thanks for the help

And yes my "condition" is far more manageable now I am older and cooking for myself and my (currently 3) children full time. This might be a coincidence however.

I can now miss a meal without too much worry even though at the moment I have a far more physically demanding job than I have ever had!

I have for the last 20 years wanted a Talisman to warn the medical people in case I am involved in an accident and I am unable to warn the Doctors and nurses of my problem.

But I have not yet got a wording sorted out that would get the message across without risking worse problems.

With regards to Fructose and Blood Sugar. I have to wonder about the doctors injecting 150g Sucrose and then 24 hours later 150g Fructose direct into my main artery in my left arm!

Little wonder I had bad after effects for 6 months after.

They said it would mimic the effect of eating a Chocolate "Mars" Bar, and refused to reduce the dosage.

I am sorry you are not yet to a conclusion in finding the problems with Coley, my best wishes and thoughts go with you.

All my comments are based on my experience as an HFI I do not make any comments regarding any other condition as I have no knowledge of them.

It is quite funny when I was at School I was always the weakling not able to play sports very well etc, now however I am far fitter than any of my school friends.

Please Tammy no jokes about heart attacks!

My Farther died age 54 form his 5th his first being when he was only 42! I have been expecting one since I was 42!

He did however smoke all his life and could not give up.

Tammy A thought about Regina's clotting problems and smoking has your daughter ever smoked?

Also regarding teeth enamel, both my brother and sister had very soft enamel yet had "better" diets than I ever did.

My brother had no teeth until he cut his second teeth, his Gran kept giving him a very sweet syrup on his "soother" as a baby and when his first teeth came through they rotted straight away. This caused him to cry more so she gave him more syrup to stop him crying.

Both had frequent fillings required.

So as a family we do not have good enamel.

Regards and seasons greetings to all.

[Benjamins mom]

Bill, have you considered wearing a medical alert bracelet that explains the fructose condition? I have my son wear one, and Fred has mentioned he wears one also. It comforts me for when my son is out of my care -- all who care for him know his diet restrictions, but it reminds them. And of course, if I am ever knocked out in a car accident on the highway, his little bracelet would explain things. I have a couple pharmacists in the family, and they assure me IV meds are not suspended in fructose...but then what is to stop them from giving him a lollipop, you know? just a thought --- carrie

[Tammy]

Bill,
My daughter is also physically and mentally handicapped. She is still a child. Is it connected? 20 yrs ago they said it was, but today they say it isn't. Also, looking back, (since is Hindsight is 20/20) I don't believe it's connected since there were signs that were before the ingestion of fructose.

Anyway, because of this, she has never smoked, never been on birth-control pills, or any other meds, or never anything else that can cause clotting. And no one else in the family has ever had the problem. So they don't know why. Only our speculations at this point.

Sorry about the joke. I can understand why you are sensitive with it. My grandfather was late 50's with his first, and my dad died at 61 with his heart attack. But my family still has a strange sense of humor. Gets me in trouble all the time. ;D
Tammy

[sarahk]

Hi,

It's wierd for me to read the delayed reaction some of you experience. For me, a throw-up in about 2 or 3 hours after eating some sugar. I feel shakey/off the next day, but any reaction is pretty quick.

As for tooth enamel, mine is almost gone. My father and uncle are are dentists so I know a bit about this. The problems is too much dextrose--which erodes enamel. I'm addicted to SweetTarts, Smarties, PixieSticks--all are dextrose candies.--it is like sucking on lemons for your teeth. My uncle who only works on kids, has noticed kids with weak enamel b/c they are eating too many of these candies.
Also, as for me, the years of throwing-up also contributed to less enamel--due to the high acidity content.

sarah