New to the boards

[laurie]

It has taken me days online to finally find a place with good information. My 7 yr old son was just diagnosed last week with HFI. We just went to see the dietician this past Wednesday (this is all new to her too)
When I finally found this site last night I cried. Once I settled down and started reading I called my son to the room and told him I found a site and "they" are making cookies, cakes and bread..........talk about a happy kid!!
I'm so new to this I hope yall are ready for a bunch of questions.............first question.........
hot dogs??!! I was told he couldn't have hot dogs. Is there a special kind?
He's a VERY picky eater and not willing to try new things, but hot dogs were one of the few things that he would eat.
He's had 20 surgeries due to severe GERD and is sick alot. (he's been placed home-bound for school this year) Needless to say, I'm concerned about him not being able to take the liquid Tylenol or Motrin anymore. It's hard for him to swallow a lot of stuff due to the problems with his esophagus caused by the GERD.
Any advise anyone can give me one anything (food, meds or even just how to deal with this) would be a great help. Until last night when I found this place I felt so alone.......we cant find anyone else around here with the same condition.

thanks, Laurie

[laurie]

oh, I almost forgot.........thanks Cati, I got your email, it was stuck in my spam folder, but thankfully I check all of those messages before just deleting them.

[Tammy]

Hi Laurie,
So glad to help. I remember that over-bearing feeling from 20 yrs ago. I just left to spend the day at the grocery store. I think I read every label in the store to see what my daughter could still have. Every now and then I still do that. Things change and new stuff comes out. And I'm always excited when I find new things.

As for hotdogs, just do the same thing. I can get Kunzlers here. They are regular hotdogs. A lot of the turkey dogs are ok. Also Sam's Club has one I can get. But, as we've found out on here, even name brands are not the same depending on the area you are in. Example, I can get Weavers Mini Drums (they are a chicken nugget, and only the Mini Drums, non of the other Weavers products) but others have said they checked them in their area and they have sugar. So we can give you ideas but ALWAYS double check the ingredients yourself.

As far as taking Tylenol. Regular adult tablets are ok. Just grind them up (You can get a pill splitter, grinder very cheap at a drug store, or even Wal-Mart) and put them in Sugar-Free Pudding. It'll make it easy to swallow, and the pudding will mask the taste. My daughter's favorite is chocolate but JELLO makes several flavors.

Is your son on any meds for the GERD? If they are prescription, Prilosec is ok, but Previcid has sugar. Now if you buy over-the-counter, then it is just the reverse. Previcid is ok and Prilosec has sugar.

Get a copy of a PDR. (Physician's Desk Reference) This will list all ingredients in all meds. I ALWAYS check every med I bring home from the pharmacy. (This is how I found that Previcid has sugar, it was prescribed for my daughter, Regina, thinking it was ok) They are rather expensive to get a new one, but ask your Dr if he will save you an old one the next time he gets new ones. They put a new one out every year. The drugs don't change much, but the Dr offices usually keep up to date since they are always coming out with new stuff.

Fire away with your questions. I am by no means a professional, but I'll help where I can.
Tammy

[Tammy]

Oh, and by the way,
You can thank Chuck Grace for this site. He started it when his twin daughter was dianosed. Then he posted links in the other sites that led us to here. I kind of took over the answering part for awhile, but it's still his doing.

I hope Chuck and Kelly are still getting info from here as well. Haven't heard from her in awhile.

[Tammy]

Adult Motrin tablets are ok, but Advil is not. Just do the same as with the Tylenol.

[Chuck G.]

Hi Tammy,

Kelly and I get a lot of help and information from you and others that post regularly. I just returned from a business trip to Shanghai, China and Kelly has been swamped with our twins who recently turned two.

I just wanted to let you and everyone else know, that HUGE things are being planned for this site. Fred and I will be contacting you soon for your help. More details will be forthcoming in future posts to keep everyone informed.

Thank you again,for all the time and effort you give, to help our readers.

Chuck and Kelly Grace

[laurie]

this is so funny, but i feel like i have a new family here.......haha.
i spent all day today in the health food store and found a few "good" things for Hunter to eat.
i asked the doctor's when they found the HFI if it was related to his GERD but they said no.
he just had surgery #20 on sept 19th. he isn't currently on any meds, thank god, but never has been good with swallowing pills.
we drive back down to Charleston on tuesday for the glucose intolerance test. they said it's to determine how much bacteria is currently in his system. anyone heard of that?
then we go back down on February 3rd to start working on his esophagus again. he now has a 3inch section that is basically closed up. all signs point to either barrets esophagus or esophageal cancer. both are rare, but in hunters case, rare seems to be his thing...haha.
i was really excited to read KFC chicken was ok (he loves that place) and Mcdonalds (another of his favorites). i sent an email to his dietician with the Mcdonalds info and she isn't sure about the corn starch and whether it will cause a problem or not.
Hunter really wants to go back to school and right now that's a big fear for me. i've talked to his principal and his teacher, but yall know how 2nd graders are.........they're sneaky.
if it wasn't for this site i would still be so lost........i really can't thank you all enough!

laurie

[Tammy]

Corn Starch is ok, as is corn oil, corn flour, and even corn sugar if you could find it plain. The problem with corn is the "germ" of the corn. That is why they can't have plain corn. And all corn syrup in the US is actually High Fructose Corn Syrup. They add the fructose.
So have your dietician check and he'll probably find the same as all the other dieticians did. It's just the germ, and the processed corn products are fine.

[Cati]

elflaurie said:

we drive back down to Charleston on tuesday for the glucose intolerance test. they said it's to determine how much bacteria is currently in his system. anyone heard of that?

I don't know if it is the same in Germany.

Here you have to drink glucose in water. Then you have to breath in a medical device every 10 minutes, for one hour.

They measure how much hydrogen is in your exhalation.

There are too much wrong bacterias in the bowel, if the concentration of hydrogen in exhalation rises. These wrong bacterias cause problems in the bowel like pain and inflated belly because of too much gas.

The wrong bacterias form gas from food in the bowel. So the bowel don't digest in right way. Because of this vitamins don't arrive in the body and you will be sick more often.

[kkretzmer]

Hi,
Wanted to say hi and intro myself to you as well. We have a just turned 8 yr old daughter last week that has HFI.. dx when she was three. I know all about the issues with schools and getting used to different ways of eating. Would love to talk more.

Kimberley

[charles mims]

I am a 58 year old male wirth HFI. Both brothers have it too. I only eat meat that is cooked or fried without sugar or wine sauce. I avoid all colored vegitables except green kahle, chard, spinach and caulifloiwer. Green beans that are cooked from scratch (not to long) are ok. I make yeast bread and pancakes with minamal sugar and a lot of yeast and let it sit long enough to eat up all the sugar. I eat real cheese, real cream. real nuts that are not procssed (except cahews) I eat the generic cerials that are sugar free like toasted oats and shreaded wheat. I eat real oatmeal and maltomeal. I avoid all fast food except chicken fish and mexican food (no Mole). NO Pizza it is loaded with sugar. I drink a lot of sugar free soy milk. Heath food places have it and I usually clean them out. At 2 bucks a box it is better than a soft drink that will kill me. I find Turkey products can be ok if they dont have too much nitrates or dextrose. We can metabolize real dextrose in limited amounts. Watch out for yogurt it can be loaded with sugar. I swithched to Large Curd (High Fat) cottage cheeese. Avoid the low fat suff it is full of sugar big time. Real penut butter (no sugar) is fine and so is Smart Balence. Most low fat product will kill you so watch it. I even have to eat real potatoe chips as the canned stuff is loaded with sugar. Half/Half is yum good on breackfast foods My arteries are not blocked or enven narrow, maybe a benifit from the HFI? who knows. Charles L. Mims

[Bia]

Hello.
My name is Bianca. I am Italian and my three sons. aged 9, 8 and 4 are all fructose intolerant.
It's long time since i have had to cope with this, so I am quite well equipped as long as I stay in Italy (by the way, if you need any info about Italian food and drugs safe for hfi, do ot exhitate to contact me.)
The problem now is I have to work in UK for a month and my children will join me for a couple of weeks. I wonder if I will be able to find all I need over there - since I will not be able to take with me all the food from Italy. Most of all, I need to know where they can eat when they go travelling around with their father - while I am at work. My husband does not speak English and I have to tell him what to buy and where to eat.
We will stay at Oxford, but they will surely travel to London.

If anybody has any info to give me, please, let me know: I am flying to England in June...by the way, what about eating on the plane (British Airways)? Is it advisable to bring something to eat for them?

Bye and good luck to all of you! Sites like this are a real fortune for us - let me give you the Italian link: www.aifrut.it -just in case!

[Tammy]

Hello and Welcome aboard.
My daughter is 24 so I have been dealing with this a long time, too. I am in the same situation as you in a way. I am fine with this diet in the states. In July we are traveling to Amsterdam, Holland for a wedding. I am trying to figure out what all she can eat there. I am lucky in that my future daughter-in-law is from there and can help translate for me. Even with that, I am taking a lot of the food along I know is safe, just to be sure.

As far as England, I'm not going to be much help. I'm not familiar with the ingredients in their food. And we have seen here with many items that even between the USA and Canada there are differences. But as far as the plane, I take all food along for the flight. I don't trust anything they provide unless it comes in a package with the ingredients listed.

Here in the states, when we are off on daytrips, McDonalds Chicken McNuggets are one of our staples. According to the UK website, www.mcdonalds.co.uk/ they have sugars in theirs. But the chicken grills, and the fish would be ok. Of course all the bread and rolls will have sugar. Just eat the meat with french fries and drink diet coke or water. You can probably check some of the sites of other chain restarants like KFC. It is fine here in the states, but I'm not sure about there. At least this will give you something you can be sure about when you aren't with them to ask.

My problem with trying to look everything up for my trip is that all the web sites are written in dutch, and I don't have a clue what they say.

Good luck.
Tammy

[Bia]

Thank you Tammy! I will check on the website you gave me!
What about Manitoba flour (they say it is an american kind of flour)? I read on the package and it seemed safe, but my children didn't like the cake I made with it very much. Can you tell me anything about?
Thanks again and good luck for your travel to Holland.
Bianca

[Mike]

Hi,

My wife (age 28) has HFI and has travelled to over 30 countries with minimal problems.

We were in Amsterdam last year and she didn't get sick once. In fact, she loved all the cheese. I believe harder for kids will be the taste of some of the food, and the selection ie: sweet bread, tripe....

Just stick to the basics, plain pasta w/butter, steak or chicken with no sauce, rice.

As for airplane flights, she usually brings a snack she can eat (beef jerkey, Cheeze Its, etc) and a packet of instant oatmeal. Just ask for a small bowl and some hot water.

Hebrew National hotdogs don't have any sugar, and they make a low-fat version as well

[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.

[Cati]

Sarah said:

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.

Hallo Sarah,

I'm also 27 and I have fructose malabsorption.

I would like to contact you. Is there any possibility? You can write to me a private message.

I'm from Germany and have relatives in California. Have you ever been in Germany?

Cati