plain oats and buckwheat

[vintagesf]

Hello,
Do any of you react to plain oatmeal or buckwheat? They are supposed to be fructose-free, but if I have more than a couple of teaspoons I start getting the same reactions as I do with most fruit.. Any ideas? Thank you!!

[charlie]

I could be the fiber as Fred has said, or the wholegrain aspect of buckwheat.

Tikitavi may have driven me up the wall but introducing me to the Finelli database site was a good move. I don't know complete accuracy levels between this and nutrition database but it seems to give a good indication on alot more foods.

Buckwheat:

Starch: 60.0 g analytical, generic independent laboratory 19
sugars, total 0.4 g summation from constituent components value created within host-system
sucrose 0.2 g analytical, generic independent laboratory 19
lactose 0 g estimated according to logical deduction value created within host-system
fructose <0.1 g

[tummyache]

I haven't tried oats in quite a number of years because they used to give me a tummyache. But, now I am thinking it was probably the tablespoon of brown sugar I put on it rather than the oats - that's during the time I was in denial about HFI and we were thinking I might have celiac disease. I love buckwheat hot cereal with just a bit of dairy free margarine on it, or a sprinkle of cinnamon + unsweetened rice or almond milk.

[charlie]

Sorry, all readings are per 100g.

[carolyn]

I'm fine with oats, oatmeal & oatbran, but only tried a small amount of buckwheat once. It tasted very sweet to me so avoided it since. According to chron-o-meter it has fructose in it.

[carolyn]

Still diet related. I love the idea of trying those pixie stix that the US HFI'ers seem to be able to eat. I've done an online search & can only find Wonka ones that list dried corn syrup in the ingredients. Is this correct?

[colormist]

Carolyn,
Wonka is being evil as of recent and adding all kinds of fructose to their previously unfructosed candies. I don't trust their sweets to be safe anymore. They do have dried corn syrup (vote is still out on whether or not dried corn syrup is safe as sometimes it appears to be and othertimes not so much), but, more importantly, they have natural flavors (or some such nonsense) which (as we all know) can include a menagerie of ingredients commonly found on the earth.

[sara]

My daughter is two and was recently diagnosed with HFI. Our dietician has told us that flour is fine with HFI and I have been baking bread at home using dextrose to help the bread rise. I was reading more this weekend though and wheat is not safe for fructose intolerance so I am guessing flour isn't either. Is four safe in HFI?

Thanks!

[Tammy]

plain white flour is best. The whole grain flours give us a problem. It's the "germ" that contains the fructose.
Bread made with white wheat flour and dextrose is the best.

[sara]

Thanks Tammie. My daughter ate everything with sugar and never had symptoms. She even ate spaghetti sauce almost every day before we knew she had HFI. The only things she wouldnt eat were sweets and fruits. We found out her liver was very large and after that her diagnosis was made.

Also what about things like saltines with no sugar added?
What about cereals? I buy arrowhead mills brand rice puffs but they are made with brown rice. Can you recommend a brand made with white rice?
Any suggestions for snacks I can buy and send to school with her?

I have read all your threads and replies and they are so helpful. Thank you!

[sara]

Thanks so much! That is very helpful. My daughter tried both shredded wheat and oatmeal but she didn't like it. I will definitely try the puffed wheat.

[charlie]

Hi Sara, welcome aboard. let us know where you are in the world as this will affect what foods we can recommend, eg puffed wheat in the UK will have sugar added so a big no.

As regards wheat in general, for HFI white flour should be fine, not brown as has been said already but if she has fructose malabsorption then wheat is not OK for some due to the fructans in it.

You have been very lucky if your daughter didn't react to sugar and pasta sauces, tell us more on her history when you have time.

[Tammy]

lol @ Fred. I guess it's still better spreading butter on lower salt crackers than spreading it on full salt.

Regina eats a lot of Triscut crackers. Her other big snack is pretzels, but you have to watch which ones are ok as not all of them are. She "dips" her crackers and pretzels in cream cheese. Lately this is her night time snack. She tried SF peanut butter and did well on it from a HFI standpoint, she just didn't like it being all sticky in her mouth. lol.

[sara]

Hi Tammy
We live in NYC. What type of pretzels do you buy? I also wanted to know if you have heard of pirates booties. They are a brand of rice and corn puffs. If you buy the aged cheddar brand, the main ingredient is cornmeal which seems to be ok based on the messages I have read on this blog. There is also no sugar added. My daughter loves them!

[sara]

Thanks for the welcome Charlie.
We live in NYC. My daughter really had no symptoms until she got really sick. She never ate sweets or fruits but that was about it! When she turned two, she became very weak and didn't want to play or do anything at all. We took her to a pediatrician and on exam her liver was very large all the way down to her lower abdomen. She had a liver biopsy done that showed fatty liver infiltration. Genetic testing was done which made the diagnosis. She is feeling much better now and her activity is back to normal. Her liver size hasn't changed that much but she is growing so proportionally her liver has decreased in size.

I am so grateful for this website. I have had so much trouble trying to find foods my daughter likes. She goes to daycare from 8am to 6pm so she spends most of her time there. I am a full time working mom but I am going to go part-time soon to spend more time with her. Until then, I have to prepare her food obviously as you know and sometimes she just doesn't eat because she is sick of the same food.

Finally, sorry for the huge post, I just wanted to let you know my daughters story. Thanks again.

[Tammy]

Hi Sara
I haven't ever heard of Pirates Booties. Sounds like something my daughter would like.
We get Middlesworth or Snyder's of Hanover pretzels mostly. I think they are pretty local though. But you have to watch even these. Some shapes/sizes are ok and others of the same brand are not. The best thing is just to keep checking all of them. I find the "stick" variety are more often safe than the other shapes. No idea why. You just have to become a label reader.

When my son lived in NYC we would find pretzels there, but I don't remember what they were.

How old is your daughter now? I'm sorry if you've said already and I just forgot.

Are you sure she's tired of the same food? That doesn't happen to kids too much. Some times its a case of not feeling just up to par from just a tad too much of some hidden fructose. Or too much of a limited item at one time. Now that she's on the diet, she may start to not feel good when she gets it. My daughter was the same way. Ate everything with no symptoms except an enlarged liver. After she was put on the diet and her body started healing, she started signs of eating the wrong things that she never had before. Something to consider.

It's nice to have someone near to my part of the world. We may have some brands alike. I'm about 3 - 4 hrs away from NYC in central PA.

[charlie]

Hi Sara, thanks for the info, sounds like you were really lucky she didn't go acute before, I wonder what set it off when she did.

As for foods and variety, I am going to back up a little of what Tammy has implied, please don't take what I am going to say the wrong way - it isn't a critisism of your parenting, it's just I have been there and I know how a parents mind works.......

In the modern society we have grown up thinking we need variety, strong flavours, colour etc etc in our food. WRONG. We need good quality sustenance. Trouble is, we can't get that into our heads so we as parents worry the diet is to much the same, its boring, its bland, its colourless. But that doesn't matter as it is safe. I think Colormist will back me up here that she now has pretty much the same foods day in day out because she feels healthier on it. I went through all the depressions, the feeling guilty that Megs food was boring but the reality was I was bored of cooking the same old for her as I had that niggling feeling that it should be varied. Young children, and by the sounds of things your daughter is under 5 if she is in daycare, are not going to pull you up on their culinary variety.

However they may go off food, as Tammy has said because she doesn't feel well due to accidental fructose intake. And in the early days that will happen alot because it takes a long time to get the hang of this diet. Megs will go off food for days if she has anything, so I tend to stick with chicken and rice on those days and gradually her appetite improves and I don't overworry if she is off her food, I just keep posting milk into her to keep her blood sugar up.

I tend to stick to safe dishes and rotate on a 3 or 4 day basis, in fact I now draw up a menu plan at the beginning of the week which now Meg is older she has input into and that helps plan what you need to buy as shopping ain't as simple any more as you need to go here for this and there for that....... I am a working single mum so I need to plan ahead alot........

But you can vary things easily, do chicken three times a week, once with rice, once with potatoes (if she can have them) and once with pasta or noodles, very similar meals but varied. You'll soon learn what she prefers and is most likely to eat. And ignore other peoples opinions that don't know about HFI, especially daycare staff. When Meg was in daycare they would often comment, oh you've got chicken and rice again Megan as I handed over her lovingly prepared pots of food for them to microwave....... so I would say Yes, but at least it means she won't throw up all over you today..............

So the long and short of it is, please don't worry about variety, never apologise to a young child that it isn't varied as then they don't get in the mindset that it should be varied and therefore they are missing out. The earlier you get into a positive mindset about the diet the easier things will be - honest. But don't worry we have all been there. Colormist is building up a good stack of recipes on her pinterest board which she will direct you to hopefully as I have lost the url for that, and on her blog. Also there are lots of recipes on here too to hopefully give you some ideas .

[lucky]

Hello Sara,

I am "Lucky". Welcome... and congratulations on finding a definitive diagnosis for your daughter. Things are soon to get much easier...

I think most of us would agree, that for a parent, the most frightening and dangerous time is when your child is in a state of serious illness, and you must rely on others (specialists) for direction and resolution. Now that you and your family have answers, life will be far safer and happier.

... and for your daughter -like our son- life will be much friendlier.

Although -as I suspect you are really getting a glimpse of- a little more "food involved". Nothing but sourcing out safe ingredients and scouring the internet for toddler/child style safe foods and recipes...

Of course, an HFI safe diet is certainly do-able... but it's certainly not always the most convenient by today's modern standards of "quick convenience".

Realistically, there is initially a HUGE learning curve for anything to do with HFI, whether it be medical, food related, or social. If you take it day by day, things will evolve naturally for your family.

So, try to keep in mind that every healthy day is a success -and- don't sweat the small stuff, or worry too far ahead in the future. And I'm sure over time you will find a safe, comfortable rhythm with everything that works best for your daughter and family.

Our son (10yr old) has not been definitively diagnosed HFI, but must be on the diet for safety. He has been through much. Too much. And since being on a strict HFI diet, he is healthy long term for the first time in his life. Before this, he had an early lifetime of serious overall moderate illness -and- a few close calls.

And, I'm here to say... it is devastating for a parent to not initially understand clues and how to help their child. Or, watch specialists try and decipher what is happening health wise in times of chaos.

So, our story -like many here- is complicated. Three yrs. ago, our Genetics specialist thought our son's HFI DNA test was just a formality. Until it came back negative. Then, his DNA was sent out for FBPase deficiency. That was suppose to be the "for sure" thing. Nope. Negative. Then tests for everything and anything metabolically connected to fructose (and then others like Celiac etc.) Many, many, many tests including "Fasting test", Fructose Challenge (oral while on i.v), Glycogen Storage, Protein Tolerance test, and a Muscle biopsy to rule out potential Mitochondrial issues.

And then there were even more... so... we unfortunately have an arsenal of experiences...

Truthfully, unless we concede to a liver biopsy... I think we will never have a complete diagnosis. And because our son is SO healthy now (long term on the HFI diet) we will not -unless- something devastating or unforeseen happens to his health in the future. But, I think now that we are very aware of his issues (and patterns), this should not ever hopefully happen.

And in the end, all anyone wants is a healthy child. A healthy, happy, growing child. We now have this. And long term. So this is thrilling for us. We are grateful.

That being said, the assumption our specialists have is that our son probably has a variation of HFI / FBPase deficiency or something else fructose (metabolic) related. And since converting to an HFI diet 2.5yrs ago, our son is safe. VERY healthy and safe...

Soooo, I know how hard it is for you, Sara, to now find and convert to a different style of food for your daughter. Like our son, she already has a taste for some of the stuff that is not good for her. However, you may find that as time passes (and she loses the strong memory/taste of those foods), it will get easier. It has in our case.

For us... the only time our son now kind of 'craves' food with more flavor (or wrong food), is when I realize he probably consumed a minute amount of fructose (and is in a reaction type phase). Another sign is when he either eats more or almost grazes non stop until the reaction passes. Those are more difficult to decipher, as sometimes eating more may simply just be due to growth spurts. Oddly, there is also the opposite, when he feels 'off' and doesn't want to eat much... but that in itself can also make him feel unwell. Oh, and illness (and intense exercise) is a trigger to being more sensitive also.

Essentially, our son is the best when healthy, balanced on the HFI diet, and eating in regular intervals. Intervals that are closer than for the average 10yr old...

Basically, I'm on alert for any clues when something is different than the usual. If there is a pattern over time, it is a clue. And of course, not everything in life is fructose related... but by this point, I think most of us have extreme "mommy radar". For me especially... it has become my "6th sense".

At this point, we are so HFI strict, that our son NO longer has the horrid gastro, blood sugar, metabolic issues etc. we used to see. We now just see the extremely minimal signs as clues. This to us is wonderful, as our poor son lived much of his life previously in the extreme... No more. He is now a healthy, growing, happy, smart 10yr old boy with a healthy amount of mischief. And other than a slightly different diet -HFI- (and perhaps closer eating intervals), not noticeably different than his peers...

So I wish for you, and all with children especially, the same.

Sara...

Try not to stress over the diet not having too much variety. Our son has VERY little at this point. Most days it is not a problem for him at all. On the 'off' days (which generally are the reacting days), I assure him we are sooo far ahead of where we used to be, and are slowly working towards more safe variety. This seems to help.

I have a few HFI safe recipes I have found (and use) that I think are generally easier on smaller children. Until now, I have hesitated to post recipes (or general comments), as my son is not HFI confirmed... and I am extremely concerned/cautious in giving suggestions/opinions (that may cloud true HFI related food/experiences/safety). I believe one must always respect those with definitive diagnosis and their experiences above all else...

But perhaps I may have recipes of value to at least some... so I shall post them soon under a "Lucky" title in the recipes section.

And to Charlie...

Your last post was beautifully written. Well done. Many of us moms are concerned with the same issues... so thanks for taking the time.

Big hugs to you all,
Be well.

Lucky

[sara]

Thanks everyone for all the moral support and great advice.
Charlie: I agree with lucky that your post is wonderfully written. I wanted you to know that I have had similar experiences with my daughter's daycare. They are so big on healthy food (non-fat, veggies, fruits, etc.). I would sometimes send fried foods and the staff would say, "you cant bring this type of food, its not healthy" Finally, I was so frustrated and I said, "my daughter eats no sugar at all, I'm sure she is eating healthy. I had to get a note from her genetics doctor stating that she can eat foods high in fat. It is so sad that people can't thing outside of the box sometimes.

Lucky: I am sorry to hear that you went through so much trying to figure out what your son has. I am glad to hear that he is growing and thriving with an HFI diet. My daughter also has days when she won't eat and others when she won't want to stop similar to your son. Some days she won't even have a bite of a certain food, and on others she will eat the same food wholeheartedly. I also find interesting that my daughter (much like many of kids/adults on this post) drinks lots and lots of milk. I have always wondered if this is to reverse hypoglycemia or because it contains lactose, a monosaccharide they can digest.

Tammy: We also have the snyders of hanover brand of pretzels but my daughter hasn't tried them so I'll definitely see if she tolerates them.

Thank so much everyone

[charlie]

Sara, feel free to quote my daughter to any doubters. Here in Britain they push the 5 a day must have diet to grow big and strong. My biggest problem with getting the medics to take me seriously is that my supposedly ill child is on the 75th centile for growth, 55th for weight and has beautiful skin and a stunning sun tan in the summer, blond hair and big brown eyes so everyone raises their eyebrows when I say she can't eat any fruit, any veg full stop........

Mind you, if they see her on a reaction day with snotty nose, sores above her lip, farting for England and pasty faced..........................

But yes, get notes from the doctor and when she starts school you will probably have to get the school nurse to write a plan for her as they don't take it just from parents. We had an hour long meeting to get the school to give Megan a drink of milk at 2pm to keep her blood sugar up..............!!!!!!! They had to change the school plans a few years ago when they started their healthy schools policy and decided children could only have fruit for snack time - they conceded a sandwich was acceptable but not crisps.............. (Chips to you guys across the pond!!!)

Good luck Sara, keep asking questions, I'm trying to post a few toddler fun recipes, you inspired me yesterday to get on with it so I came up with potato ponies - the thrill that gave Meg was so worth the extra work. But you will have to get mega organised if you are a working mum, it took me a long time as I am not the most organised in the world and I have had to sacrifice my riding at the moment but if it keeps Meg healthy and happy then it is worth it as life is so much more enjoyable.