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[Gretchen]

My son has been diagnosed with dietary fructose intolerance. I know there's a HUGE difference between the diet and heredatarty, but am really hoping to get some ideas here. Jarrett just turned 6 and although he tested positive a few years ago, we weren't as good with sticking to the diet as we should have been. Now he got retested yesterday and the results were even worse than last time. It's very hard when you get a few pages of what not to eat, but it doesn't say what he CAN eat. Our GI said french bread is really the only bread he can have. What do you guys use for bread/toast? I don't have a bread maker. I looked at kraft macaroni and cheese and don't see any fructose, corn syrup or anything like that listed. WHat would make that not ok to eat? Any other kids convienence foods that are ok? Our doc said that table sugar with him would be ok in small amounts. Well how do I know what small amounts are??? Thanks in advance.

Gretchen

[kristen]

Hi Gretchen! Welcome!

I'm not the expert here, but can sympathize with you on the difficulty determining what is safe & the proportions of that. I've been struggling with it myself. I think the problem that we all have, is that DFI, HFI and FDPase tolerance levels all depend on the individual and the amount of enzyme that they have present. Unfortunately that means that the only way to answer the question is through trial & error.

I've also been told several times that while the body is in a 'healing' state that sensativities will be more severe. So even worse for us moms, we need to just ride it out and test periodically to see if things are tolerated, then add another, and so on...

The approach I've taken is to go to the extreme. If Coley was a bit older and able to tell me before he got too sick that something didn't 'settle well' it may be easier to be a bit more risky...but I just feel horrible for giving him stuff that affects him for days after.

We were given a potential diagnosis of HFI back in September, began restricting in October (when I got the information) and immediately saw great results from his mood, focus & sleep. I give him NO veggies, NO fruit, NO whole grains, and NO sugars or sweetners except dextrose (recently added barley malt - but it may need to be removed).

At our last visit (3/1) they began considering FDPase. We see a metabolic specialist.

I tested a couple things in small quantities this past week - 5 months later & although the reaction was not as 'loud' as previously, it's still there. I find myself asking the question lately, why would I ever want him to have something if it's just going to hurt him, even in a small way??? I mean are 4 brocolli flouretts worth a week of upheaval? I don't care now that it's a veggie or a fruit...the benefits of those can be found in a vitamin. We did have an issue with constipation for a short time, I guess because there is essentially no fiber left in his diet. We used benefiber for a short time, but he is having no problems now.

As for the mac & cheese, I just looked at a couple of them and they seem ok...but there are so many versions by Kraft that I can't be sure...I use Annies and I know that one is fine. The other day I found Annie side pasta's too (like the knorr/lipton ones), and they don't have all the MSG type things in them.

As for bread - that is a hard one. I live near Boston and have been able to find Matthews Golden White bread that does not contain any 'no-nos.' But others haven't been able to find it near them. I've also found a few breads at whole foods - their 365 brand has english muffins and pita bread that is safe. I've also been able to find breads occationally at the bakery case in 'regular' markets, but they are not reliable finds. I've been able to avoid buying a bread maker, but just purchased an ice cream maker because I can't find the dietetic ice creams that others have been able to. You may need to break down on one of these items too. Good thing is that yard sales are a good place to find appliances that people have lost interest with.

There are several toddlers here that have just been diagnosed recently. We started a list of toddler type safe foods/ingredients in the under 5 section of this board. Although many of the items are also appropriate for others, so you may want to take a look at that, as well as the safe ingredients list here as well.

U of Iowa has a chart that outlines the 'safe' sugars for DFI. It includes a description for many of the items, so it should be easy for you to figure out whether it's something that you feel comfortable testing. Where it doesn't contain information, the internet can fill in the gaps, or ask here.

Does your son's Dr think that Jarrett definately has DFI versus the other variations? I mean, if there is any question, personally I would assume the stricter for now. Once you start testing, I think it will become clear by his tolerance/reaction to things.

I think the big difference in what is tolerated between DFI & HFI is that if the glucose/lactose/maltose/etc. amount outweights the fructose that it should be tolerated by the intestine. HFI & FDPase people's liver & kidneys also lack the enzyme so incorporating any fructose leads to some amount of discomfort, LBS and liver/kidney damage. Then FDPase carries the additional risk of acidocis with ingestion, and LBS with fasting. It's not to easy to 'see' the differences until further into restriction. And I personally think GI's are clueless when it comes to this stuff - but I've also had a REALLY bad experience with one, and have yet to meet or hear of another to change my opinion of them.

Ok, that's a lot of info & bias...

Hope it helps some.
KJ

[Tammy]

My daughter is 24 (she just had a birthday on the 4/20) and has HFI.

I think Kristen did a very good job of explaining things. I really don't have anything more to tell you except one thing. Kraft macaroni and cheese is fine for us. We use that all the time.

And Kristen, Coley is soooooooooo cute. I didn't know you could add a pic. Ok, now I'll have to go in and play with my profile.
Tammy

[nancyrandall]

Gretchen,
How was your son diagnosed? Mine only has had a breath test and the GI doctors, diatitions, ect... have told me lots of stuff that is ok later to find out it is not. I would start out as strict as you can. You will make mistakes (we all do). My son does best on an HFI diet but, we don't know what he has for sure. What area do you live in? Someone living in your area may be able to help you with specific brands. Best bet is to read every label. Here is a list of some of the products I am able to find in Minnesota. Check all lables for yourself because items are not all the same.

Bob Evans original pork sausage patties, tyson frozen chicken tenders, starkist tuna, applegate farms beef hot dogs, archer farms three cheese shrimp (target) use this for a pasta sause, old home all nautral plain yogurt, cedar summit farm plain yogurt, natural value organic yellow mustard, cheez it crackers, preprage farm gold fish whole wheat variety (some can't tollerate whole wheat but, my son does), annie's cheddar bunnies, Digionoro alfrado sauce, Penara sourdough (loaf, bowl, baggette, and rolls), Bruggers plain baggels, Cub bakery san Francisco sourdough square, Cub foods pre-made pizza crust, new fresh bakery french dinner rolls, wonka sweettarts (not chewy ones), pixie sticks candy, fun dip candy.

This is a list of stuff I have started for my extended family and friends who have been asking what he can eat.

I also have a list of things we get when going out to eat. Burger King - French Fries, Hash Brown Rounds, Milk, Mustard, Chicken Selects. Arby's - Chicken Fingers, Curly Fries, Milk. McDonalds - McChicken Patty (no bun and fixins), mustard, swiss cheese, french fries, Chicken McNuggets, Chicken Select, Fish Filet (minus bun and other stuff). KFC- Orginal Recipe Chicken. At places that have pasta we order plain pasta with butter or oil. We shake cheese on at the table.

Hope my list of foods help some of you others. I know the person who posted the keebler ice cream cones a few months ago is a big angle in our book. I found them at the store and have used lots.

Other big suggestion is to purchase Dextrose Sugar (online). It is a big life saver. My doc also said my son could have some table sugar but, we disagree. I use dextrose for making lots of stuff.

Nancy

[Chelsea]

Gretchen,

Welcome to the board! This board has been a life saver for me since our potential diagnosis in January. My daughter Gillianne is 20 months old and like Coley, is suspected of having a variation called FDPase.

The others have given you lots of great info and the recipes/food ideas here are wonderful. We have not been able to find breads in the grocery store, other than French and Sourdough so I did purchase a bread maker. Best $99 I spent through all of this. I make all the bread and many variations of white, wheat, poppyseed and rosemary bread. It has saved me time in the long run, I was to tired of reading bread labels.

[gretchen473]

Thanks for all the thoughts. Nancy where in Minnesota are you? We're in Austin. The hardest thing so far is school lunches and school snacks. What is FPDase? No one really brought up that. He sees a GI doc at a very large "medical center" in Minnesota. Actaully our GI is one of the few docs I like that we've seen. It was diagnosed with a breath test. Thank god McDonald's chick is ok!!!LOL!! We might be living on them for awhile. The nearest Cub food is about an hour away. We only have Hyvee and Cashwise here. Pizza was my next question. What about sauce? I know they really stress no katsup. The funny thing is, Jarrett is about the only kid who isn't a fan of ketchup or spaghetti sauce. Now I wonder if that's why. Like I said, I'm battleing sterp throat right now so I haven't made it to the store. Hopefully tomorrow. Any other thoughts, PLEASE send them my way. He's already begging me for an ice cream sandwich. Anyone know any ice cream that's ok??

Gretchen

[Chelsea]

FDPase is just a different enzyme deficieny. It has some additional issues that can cause acidosis during fasting. The Aldolase enzyme is the more common enzyme deficiency in HFI.

As for pizza, it's not only the sauce but there is typically sugar in the crust as well. We definately avoid pizza here.

As for ice cream, we have the Klondike Slim-a-bear
www.icecreamusa.com/products/ind_product.asp?upc=75856-03140&brand=klondike&type=

I hope your feeling better soon!

[Nancy Randall]

Gretchen,
We live in a suburb of St. Paul. I have used the following for pizza crust (soft taco shell, home made, Coles frozen garlic bread, and a pre-made crust I have found at Cub Foods in the deli). I use white sauce and approved pepporoni and hamburger.

For Ice Cream I would go get an Ice Cream Maker. I have a small one that works great. I freeze the base overnight and make a custard that cools over night. The next day it takes about 30 minutes and is done. I am in search of a recipe that does not taste so much like whip cream but, my son likes it. I use Dextrose as the sugar.

We don't do school lunch. His teacher has pixie sticks, sweettarts (not the chewy ones), and Fun Dip for treats. She also has some cupcakes in the freezer for special occasions. I have a trade system with him too. If he brings me something he was given that he can't have I give hime something he can.

His teacher has been great. She sees a difference in his school work when he gets something he should not so, she has been great.

Good luck and feel free to e-mail me [e-mail]. Let me know if you are ever in the area. We travel to southern minnesota about once or twice a year.

Nancy

[Gretchen]

Oh, the cole's garlic bread sound good. We use that already for just regular bread. What ingrdients am I looking for in bread to stay away from? Is it simply the corn syrup or is there a "sercret" name they use? Do you just use regular cheese? ALso cold meat-someone said Hebrew's Nat. What about other meats that don't have honey or anything added are they ok? Again, any secret words I'm looking for!! I'm off to the store in about an hour to start this crazy job of finding us stuff to eat!!!

Gretchen

[Gretchen]

Well we live in a town of 25,000 so unfortunatly the italian bakery thing is out. In fact we don't even have any local bakeries. Only the one's at the grocery store!! I e-mailed my aunt how lives in Minneapolis-St Paul and asked her about some good health stores up there so hopefully she can help us out.

Gretchen

[nancyrandall]

Gretchen,

If you get to Minneapolis/St. Paul your best bet is Cub foods (they have pizza crust, bread, rolls). There is a Fresh & Natural and a Whole Foods but, watch for evaporated cane juice. Lots of foods at the health food stores seem to have it. Let me know if you make the trip to the cities and I can help you stock up.

One of your questions was about cooking with splenda (it is a no no). For kids snacks at school we use pringles and cheezits (both in indivitual packs). My son is in 1/2 day kindergarden so we don't do lunch yet but, some ideas would be cheese sticks, sugar free jello cups. If you can find the small old home yogurt you can pre mix in some flavor/sugar. I have found a few lunch meats. Tyson Chicken nuggets would be good if you can find someone to help heat them up. I have not given much thought about lunches but, will have to figure something out for next year.

Good luck shopping and hope you are feeling better.
Nancy

[Gretchen]

I think there's a Cub in Rochester which is closer and where we doc anyway. I'll have to check that out. For the yogurt thing.. I did find the same old home plain. I tried the vanilla trick and the SF jello crystals. It was really gross!!! What else do you guys use? Also, how long to you see improvement? Believe or not he might be worse since we started this Tues. Last night he was up at 2am screaming with a stomach ache and nasty poops. I'm 99% sure I haven't given him anything he wasn't suppose to. Do you guys shy away from all vegetables too? One thing I found is those new 100 calorie Cheeto asteroids. They're prepacked so they're great for lunch. Here's the ingrediant list: Enriched corn meal, vegatable oil,whey,cheddar cheese, part hydrogenated soybean oil,salt,maltodextrin,disodium phosphate, sour cream,art flavor,monosodium glutamate,lactic acid,citric acid. Sorry for the long list..does that sound ok? I can't wait for my Dextrose to show up so I can try the cake and stuff.

[nancyrandall]

Gretchen,

We don't even see issues after he eats something for about 48 hours then he has problems for about another 2 days. Everyone is a little different from what I understand. I would give it a few weeks to get everyting out of his system. Keep watching the labels. Big mistake some make is thinking sugar free is ok but, not all sugar free is fructose free. We don't eat much for veggies and no fruit. He eats lettus and spinich on a hamburger, mushrooms and brocoli on pizza but, that is about it. Our doctor did not label him DFI or HFI just Fructose Intolerance with a breath test. They told me sucrose would be fine. I so wanted it to be DFI and be able to have some sucrose and berries so I kept trying them. I finally told my self that what he needs is the HFI diet and don't listen to the doc's. Eight months later he is doing the best he has ever done.

Bruggers Plain beagls are fine Rochester may have one. I freeze them. Pennara sp? also has sourdough bread in may forms that is ok but, a bit heavy.

Have to go bus my kids around.
Nancy

[kristen]

NANCY! Brueggers has an OK bagel!!!!! OMG! I feel like it's my Birthday! And panera bread! Well, I'll be making a trip... ;D ;D

Gretchen, the sleep thing...YES!!!!! We've seen it. I don't understand it, and I'm not sure the docs do either. I'll tell you I've heard it from others too... It's gone now, after 6 months, but for a looooooooong time it was one of the biggest probelms we had - worse before we restricted, and for sometime after...it slowly got better.

Can you say sleep deprevation...it went on all night sometimes, for weeks at a time...

Our Metabolic Dr. thought that it had to do with LBS. BTW - have you read up on HFI and all that fructose does when it's consumed by someone with HFI? If not, in short, because there isn't enough enzyme present to break down the fructose it enters the blood stream, the endocrine system recognizes the excess 'sugar' and releases insulin to depleat it. Because the body still can't synthesize the fructose, it remains, triggering more insulin, meantime any glucose present is depleated, leaving only the 'toxic' fructose. In turn it sets up a state of hypoglycemia...which has it's own set of risks including seizures and kidney damage. The fructose present in the blood stream can block any remaining glucose from getting to the brain, also triggering seizure activity, and likely migranes.

OK - so the metabolic Dr thought that Coley was waking from LBS in the middle of the night. But that doesn't make all that much sense to me, because he woke (starting at 11mos to maybe 33 mos) SCREAMING & SHREEKING as if in pain. Additionally, he was extremely disoriented (which would be in line with LBS), but he was anything but lethargic.

He has had an EEG, infact the seizures were found prior to his FI diag...so I think what I was seeing was at least some seizure activity, perhaps more.

I noticed it happened worse when Coley was on his famous hunger strike, which his Dr says was his way of detoxing. So if you assume he's been overloaded...LBS and fructose are likely, but I still don't know if he was waking because he had an intense migrane, seizure, stomach cramps, LBS, or some combination of all of that...

I've heard that restricting makes them 'more sensative' so you may infact be seeing it 'worse' right now, but stay the course - it does get better...I noticed a HUGE change in Coley after just 3 strict days...the sleeping thing took longer...a couple months, but it did get better by the week.

Hope that helps,
KJ

[nancyrandall]

Brueggers Plain bagles have:
Unbleached enriched flour (wheat flour, malted barley flour, niacin, reduced iron, thiamin mononitrate, riboflavin, folic acid), water, malt syrup, salt, yeast. (I called the company and if I recall it is Barley Malt Syrup). My husband said they now have a new flavor that looks like he can have it but, he wanted me to go and check it out.

We used these all the time when we first stared the diet. I found some individual packs of cream cheese at Sams Club. So they were easy to eat on the run.

The sourdough at Pennara is good but, a bit hardy for me. We use it for those times when life gets so busy and I just don't get a chance to make some.

[nancyrandall]

For those of you who don't live in a big city and want to cut down the time in a store you can use www.simondelivers.com to search for products. They are a local grocery delevery service that has lots of products. They list most of the ingredents for items so you can sit at home looking up stuff rather than at the store. You would want to double check the item at the store. They do have mistakes sometimes. They let me have the item for free when I call them on a mistake. When we started the diet I used them almost every week because we also had a new born. It was just too hard to spend hours a the store.

Hope this helps some of you.
Nancy

[Chelsea]

Gretchen said:

For the yogurt thing.. I did find the same old home plain. I tried the vanilla trick and the SF jello crystals. It was really gross!!! What else do you guys use?

I use SF pudding powder in the yogurt. There are so many flavors to choose from. It doesn't take very much to get the flavor either.

[Gretchen]

I bought some SF pudding so maybe I'll try that with the yogurt. I think I may have put to much in when I used the SF jello!!! ;DRochester does have a Bruggers. I work over there(I'm an RN) and work tomorrow so I may have to stop on my way in and grab some. What about sugar alcohol's? Anyone have anything there that worked ok? What about the sugar free candies that are out there? I notice most of them have the alcohol's in it. Gosh I really hope my Dextrose comes today. I feel guily, I went to Perkins for lunch and bought a piece of pie. I pigged it down on the way home so it's gone by the time he get's home from school!! Nancy what is your son's name? Jarrett will be thrilled to know there's someone "like him" so close. We have to get them together to play. Jarrett just turned 6 last month and is in Kindergarden. You can e-mail me off line to and maybe we can plan something for this summer!! We had our first restaurant experience last night also. We went to Applebee's and he wanted noodles with alfredo sauce. Well I asked the waitress for the sauce ingrediants and the manager comes out and tells me someone has stuck a sticker over the ingredients and he can't get it off. So he had a chicken breast with a piece of cheese and brocoli. Well they bring the brocoli with bread crumbs all over it!! I had to make them bring it back and get me one not mixed with the breadcrumbs!! Oh the fun!!

Gretchen
[e-mail]

[Sarah]

Hopes this helps those just starting to deal with HFI

I was diagnosed with HFI when I was 12 years old (1990) through DNA testing, and was the first reported case at Kaiser, Oakland, CA. Up to the diagnosis, the doctors thought my parents were crazy-and even sent them to a shrink.

I can NOT eat ANY fruit, and primarily eat leafy green vegetables (spinach, broccoli, lima beans are the ones I eat most often) The only sugars I eat are dextrose (I am addicted to Sweet Tarts, Smarties, and Pixie Sticks), lactose, and glucose.
If I get more than a gram or so of sugar, I’ll throw up several times.
I can have 1 or 2 beers without feeling sick, and can drink wine–when the alcohol ferments, it “eats up” all the sugar in the wine, so the higher the alcohol content or the wine, the less sugar.
My body naturally rejects the taste of sweet things, even things that don’t taste sweet to others.

I also have hyperglycemia. Recently, I started running 5ks and cut back my calories to about 1200-1400/day. Not only did I lose about 20 pounds, my hyperglycemia is under much better control. I think my body got use to less food, so it didn’t react when I didn’t get food as quickly as I needed it.
Since then, I have lots more energy, especially in the evenings.
Occasionally I use Glucose tabs when I notice my blood sugars dropping, or for some quick energy.
I pretty much cut out white rice and now primarily eat brown rices. I do eat oatmeal and cream of wheat, and pastas.

I had constant ear infections as a child. And worse than the infections, were the medicines which all have sugar. I still hate it when I get a cold/cough since all throat medicines have sugar. The only cough medicine I use is Tylenol Cold-which has a cough suppressant. Other than that, I drink lots of teas. I once (accidently) took Ephedra (in a tea) when I had a cough/cold and it worked great. Too bad it is illegal in CA now.

Eating out at restaurants is challenging, but doesn’t stop me. Italian, Mexican, and Middle Eastern/Mediterranean restaurants are usually the easiest. I stick to meat dishes and pastas which don’t come with any sauce. I’m very specific with the waiters about not adding sugars, and give examples, like: does it come covered in tomatoes?

I drink wine and beer (in small quantities) and learned that when alcohol ferments, it “eats up” the residual sugar in the wine, which is why I can drink it. I assume the same is true for Vodka and other beverages. However, since the longer term effects of HFI on the liver are not known, and alcohol destroys the liver, I don’t like drinking too much/often

Living with HFI you have to get creative with food. I never ate my birthday cake as a child and my parents promised I would eat my wedding cake. My cake lady made the top tier of the cake out of St. Andres (a brie) cheese (I love cheese) and made a sugar free frosting that matched the rest of the cake. No one could tell that it was made of cheese.
In the summer time, I mix Pixie Sticks with plain yogurt and freeze it in popsicle containers.
At home, I bake my own breads/muffins and cook with LOTS of different spices.
I’ve traveled to over 30 countries and usually don’t have any problems.

I’ve had HFI my whole life and don’t view it as a disability. I’m 27 and in the best physical health and shape ever.

[sarahk]

Hi,

My favorite mexican dishes are fajitas and tamales. Actually, the fresh tortillas from Chevy’s are my favorite. I also like empanadas. I usually get the food “naked”–no sauce or salsa. Some green sauces and salsas are made from peppers and don’t have sugar, but I don’t risk it.

I can tolerate corn meal, I read that it is the kernel of the corn which we can’t tolerate, which is why corn oil is OK. I have read conflicting reports on corn syrup.


For some very useful information about sugars, look at this gov. publication:

www.nal.usda.gov/fnic/foodcomp/Data/Other/herr48.pdf


I use to make my own pizza dough, but now Trader Joe’s sells pizza dough for $1–and it doesn’t have any sugar. I always have one in the freezer.
I also make my own ranch sauce by mixing the Ranch Powder and non-fat sour cream–no sugar and it has way less calories and fat.

I avoid most dark bread products, except for rye bread. I can eat the Shredded Wheat and Bran cereal, so I don’t know about bran, I don’t eat whole wheat bread, almost all sourdough. I just found a German bakery that makes tons of great pretzels and other goodies with no sugar.

www.esthersbakery.com/

Hope that helps