3.5 month old fructose intolerant

[vanya]

hello, I am new here and need some advice... we found out yesterday that our DD is lactose and fructose intolerant.

It was confirmed through a DNA analysis. We were just testing to confirm lactose intolerance (since her stool tested positive for reducing substances), but the test showed that she is also fructose intolerant.

I am still breastfeeding but we get around the lactose intolerance by giving her an enzyme that breaks down lactose before each feeding.

Since fructose intolerance was confirmed with a DNA analysis does this mean that she is HFI? i would assume so.

I wanted to know if there are different levels of intolerance for people with HFI? Could two people diagnosed with HFI tolerate different foods?

I am also afraid of going though the trial and error process w my daughter and feel its just best to completely remove fructose from her diet once she starts solids. Any advice you may have would be extremely helpful.

Also could you suggest where I can go to find out which foods have fructose ?

Thanks so much....
worried first time mommy

[colormist]

In the links section of this forum, we have lots of resources that we use regularly. Most of the problem living with HFI is doing lots of label reading. There are two different types of fructose intolerance: Dietary and Hereditary. If it was diagnosed with DNA, my guess is that it is HFI. HFI diet is more restrictive that DFI, so you should be fine on the HFI diet regardless of which one it is.

Personally, I think it's best if you just eliminate everything until she's old enough to tell you what she likes and doesn't like. And even then, trying things very sparingly (one a week). Even products that you know to be safe could possibly change their ingredients, so it's important to read the label every time. I used to trust Cheese Nips and Cheese-its. Then, one day, I got sick after eating Cheese Nips. I looked at the label, and that particular cheese flavor had HFCS* in it. If I had just read the label in the store, I wouldn't have ended up buying a product that I'd just have to throw away later.

This is one of the main sites we use for reference about HFI. There is some general agreement to disagree with some of the foods that are listed as Unpermitted. www.bu.edu/aldolase/HFI/

Good luck, and if you have an specific questions about a specific food, we all like to share our experiences with them--good and bad.

*High Fructose Corn Syrup

[vanya]

Dear Colormist and Fred,

thank you so very much for your comments. they make me feel better and are very helpful. I looked at the BU site and it has a lot of useful information.

This board makes dealing with this much more bearable...

I was wondering, will she spit out anything that tastes sweet automatically or because if she eats sweet it will cause her pain and then she will associate sweet w pain and therefore not eat it?

We live in Cyprus. A very small island in the mediteranean.... and if its true that this condition is only found in 1 in 20,000 people,that means there are only 35 ppl in Cyprus. I don't think there are any specialized nutritionists for HFI.

We will travel to wherever is necessary to meet with a nutritionist so a contact would be very much appreciated.

Since she is so small, I still have about 2 months to learn as much as possible about HFI and implement what I learned in her diet.

Thank you so very much for your help. You will see me posting here often.

Just wondering, are cucumbers fructose free?

[vanya]

Thanks so much Fred. You actually managed to make me smile!

You may be right about her being the only HFI girl in Cyprus.... the DNA test was done here. And I feel very blessed to have been able to do it before Fructose even became an issue. This way I can start her out right from the very begining.

From the readings that I've done up to now, when fructose is ingested it is not processed to glucose and and excess fructose is stored in liver & kidneys which can cause problems with these organs. Does that mean that even if she can tolerate some foods with some amounts of fructose in them, the excess fructose still gets deposited in liver & kidneys? Or if she can tolerate it, it means its being absorbed by her body correctly and not affecting the organs?

Also related to this, can 2 ppl diagnosed with HFI tolerate different foods? Can one HFI individual tolerate more fructose than another? Is this where trial & error with different foods comes in?

Also I checked out the nutritiondata.com site. It is very helpful! it breaks down every food exactly to the last ingredient. One cup of peeled chopped cucumber (133g) contains 997mg of fructose.

I feel like I can manage this. We will be fine.

[toothfairy]

Fred,
Could you explain the grains statements, to the best of your knowledge for me. Do you mean whole grains, like whole wheat used in baking bread?
Vanya, you are very lucky to have found out early. Listen to Fred about being careful, he knows HFI info. ;D I say, he is the board "chef" but won't admit the fact. I'd print the recipes and file them. You will need to use them someday when she is older. Fred's flat work(even if they require oven mitts) and are pretty useful.
Better information and direction for moms on this site than any I've found.

[billiejh]

Hi Vanya, I have a 3 year old girl, she is under care of specialists trying to figure out if she has HFI/DFI. We will probably go ahead with DNA testing at some point, as it is important to know if it is indeed Hereditary. I just thought I'd tell you a little about my girl and what happened when she was a baby. I nursed her exclusively until 12 months, no formula. At 6 weeks old she seemed to have a lot of pain, tummy troubles. Doctor told us she probably needed to have a bowel movement, (but we thought he was wrong, as she was nursed and had multiple wet bowel movements a day) and he told us to give her some water with brown sugar in it. We tried, but she wouldn't drink it, (we thought how strange, as most babies love to drink sugar water) we tried to make her drink a few gulps. Then she had diarrhea with large amounts of blood and mucus. We knew then that something was going on with her. At 6 months, when it was time to introduce foods, she would clamp her mouth shut, turn her head away, no interest in eating. We tried and tried. Finally at 10 months she took rice cereal, then slowly some other things, but most things made her very sick ( fruits,veggies, normal things you start a baby eating on.) My point is, don't try to make her eat, obviously you'll know to be very careful now and go slow and what might be safer to introduce. And they get all they need from breast milk anyway, so take it very slow. If I knew then what I know now, I could have saved my baby a lot of pain, trouble, sickness, growth failure, etc.

Does anybody else know much from their parents about what happened when they were babies? What happened when food was introduced?

[Tammy]

Hi Vanya.
Just wanted to pop in here and say hi.
I'm like you - a mom with an HFI daughter. So anything I can help with on this perspective, just give a holler. My daughter is 26 now, so I've dealt with it for a few years now. Not as long as Fred, though. He's OLD. lol.

Just one thing to be aware of. I agree with what they've told you so far about paying attention and not making your daughter eat anything she doesn't want. (when you start that step) BUT it's not a given that she'll spit out what she shouldn't eat. My daughter never liked the fruit tastes, which is good, but she LOVES sweet. She loved chocolate from the time she was a baby. (I have an older son who liked to give her chocolate hershey kisses before we had a DX). So you'll still need to have a good idea on the foods you try with her. Don't leave it all up to her.

So glad you found this site. I hope we'll be of help to you.
Tammy

[vanya]

Dear Toothfairy, billiejh and Tammy.

Thank you very much for your comments. I will definitely be on this board a great deal! You have been very helpful.

Billiejh,

I'm so sorry for what your daughter had to go through. I am also nursing exclusively and intend to continue for at least until she is a year old.

I will make sure we go vert slowly when introducing new foods.

Tammy, I am also very glad I found this site. It is such a blessing.

[julienc]

Hi Vanya,

I also wanted to say "welcome"!!! I was diagnosed with HFI last year at the age of 30, so I was one of those who flew low under the radar, just living my life not eating anything sweet since I subconsciously knew it would make me sick. I still had tummy problems my whole life, I'm sure due to the fructose that was slipping through.

I think I was also the type who just spit out anything sweet as a baby - which was one of the questions asked earlier on this thread. My older brother also has HFI, so he paved the way for me. But as my mom tells it, the both of us just spit out and refused to eat any of the fruits from the time they were introduced to us. She even asked the pediatrician about it, but he just shrugged his shoulders and said it was unusual. Fortunately for us, my mom didn't force foods on us at all and just fed us what we would eat. She remembers taking me to preschool and telling the teachers to feed me water rather than juice at snack time since I wouldn't drink the juice. So, I'm sure it depends on each child/infant how they respond when fed sweets, but in my case (and my brother's), we seemed to not like it from the get-go.

In response to your question about if different HFI'ers have different tolerances. I think when it comes down to the nitty gritty, yes, I believe we all have subtle differences in what we can eat and tolerate. I tend to fall in line with the "40 mg" threshold that Fred mentioned earlier. There is another member here who can't eat asparagus at all, but I can eat regular sized servings of it and do just fine. But I think it's a matter of finding your own (or daughter's) personal threshold of fructose and what can be tolerated, and it will probably fall somewhere around the Boston recommendation.

Good luck!! I'm glad you found this board!

[colormist]

Hi Vanya,
I don't know if the "fructose stored in body or digested" question was answered, so I'll give it my best shot. From what I've noticed since I've been diagnosed (around two years), after I accidentally eat sugar (which is usually caused from family members preparing food for me, then swearing up & down that it doesn't have sugar in it) is that I get really sick. I'm not the type that vomits when I eat sugar (some people do around here, but I think my late diagnosis enabled me to tolerate nausea much more than the typical person), so I usually end up nauseous all day then the following day I have pretty severe kidney pain. To get over the bad kidney pain, I drink a lot of water. The resulting urine is very dark (presumably with fructose).

Your kidneys exist to cleanse your body of impurities. I would hope they would be removing the fructose from the body, otherwise I don't know how I'd function. HFI bodies do not digest fructose at all.

Also to the HFIers having different tolerances, I have a bowl of shredded wheat every morning. Sometimes I even have the Shredded Wheat & Bran variety. I haven't noticed a problem. I'm also a big fan of potatoes, white rice, and green beans. Of course, this might also be due to my late diagnosis. I just don't notice the presence of sugar as easily as some others do.

[sarahk]

Hi Vanya,

Mike here--my wife, sarah, has HFI-she just turned 30 and was diagnosed around age 13. As a baby and all through her life, she was a picky eater-but her parents never forced her to eat typical baby foods like peas, corn, apples....she appears more sensitive than others on this board, probably because she was diagnosed early and avoided all those foods.

We've been to Cypress--and love it. You are actually in a good region for your daughter. Sarah's (and mine) favorite food is Mediterranean (and Persian). I think we've been to every Greek restaurant in the greater San Francisco area

Couscous is safe, but watch out for raisons, honey, or anything sweet added. Almonds are OK, but she only likes them in small doses, walnuts are better.

We haven't found a shwarma we haven't liked--but no white or yellow onions and no tomatoes. If there is a dressing/sauce, check that. Cucumber are fine. Falafel is usually safe too. In the US it is hard to find pita bread without sugar added to it, but I don’t think that will be a problem for your region. We almost never have a problem with lavash bread either.
Dolmas (with rice only-not the meat type) are a favorite in our house-but we sometimes find that tomato is added-and she can't eat those. She also LOVES Spanakopita

She LOVES feta cheese, olives, and tzeke (yogurt, mint dill sauce). She also like artichokes and artichoke hearts. But, she can’t eat zucchini or asparagus

I've noticed with our 15 month old (does not have HFI), that around 9 monhts old he was able to tell us which foods he didn't like by pushing them away or spitting them out. When you start solids, start with rice, pasta, plain chicken, and basic foods. I'd stay away from all fruits (obviously) and green veggies (usually OK) until she can communicate better.

If sarah gets too much sugar, she throws up, usually within 3 hours of taking in the sugar. It takes a few times to get all the food and liquid in her system out.

Hope this helps

[ukbill]

Hi Vanya,

Welcome from me as well.

Breast feeding is good. I was breast fed until I was 18 months old as it was the only thing I seemed to be able to take.

Is DD your first child?

I would invest in a hand Blender so you can make your own baby food.

If you Blend meat, rice and gravy or meat juices together you will have something she can always eat!

Being in Cypress you have a wonderful supply of fish which will be fine too.

Herbs are good too and Lemons (mostly) some "smooth skinned" varieties are too sweet for me, but a little lemon juice added to food frequently makes it more palatable.

Above all Do not worry! (too much)

I would avoid anything sweet that she can eat (dextrose sugar) until her taste buds has fine tuned themselves. I know this is an argument I keep having..

Above all keep smiling and enjoy the miracle that is your new baby.

Regards and best wishes

Bill.
PS if there is anything or just something specific you want to ask then ask away were a friendly bunch here.

[christi]

Jul 18, 2008 15:17:28 GMT -5 vanya said:

Thanks so much Fred. You actually managed to make me smile!

You may be right about her being the only HFI girl in Cyprus.... the DNA test was done here. And I feel very blessed to have been able to do it before Fructose even became an issue. This way I can start her out right from the very begining.

From the readings that I've done up to now, when fructose is ingested it is not processed to glucose and and excess fructose is stored in liver & kidneys which can cause problems with these organs. Does that mean that even if she can tolerate some foods with some amounts of fructose in them, the excess fructose still gets deposited in liver & kidneys? Or if she can tolerate it, it means its being absorbed by her body correctly and not affecting the organs?

Also related to this, can 2 ppl diagnosed with HFI tolerate different foods? Can one HFI individual tolerate more fructose than another? Is this where trial & error with different foods comes in?

Also I checked out the nutritiondata.com site. It is very helpful! it breaks down every food exactly to the last ingredient. One cup of peeled chopped cucumber (133g) contains 997mg of fructose.

I feel like I can manage this. We will be fine.

[christi]

Jul 18, 2008 15:17:28 GMT -5 vanya said:

Thanks so much Fred. You actually managed to make me smile!

You may be right about her being the only HFI girl in Cyprus.... the DNA test was done here. And I feel very blessed to have been able to do it before Fructose even became an issue. This way I can start her out right from the very begining.

From the readings that I've done up to now, when fructose is ingested it is not processed to glucose and and excess fructose is stored in liver & kidneys which can cause problems with these organs. Does that mean that even if she can tolerate some foods with some amounts of fructose in them, the excess fructose still gets deposited in liver & kidneys? Or if she can tolerate it, it means its being absorbed by her body correctly and not affecting the organs?

Also related to this, can 2 ppl diagnosed with HFI tolerate different foods? Can one HFI individual tolerate more fructose than another? Is this where trial & error with different foods comes in?

Also I checked out the nutritiondata.com site. It is very helpful! it breaks down every food exactly to the last ingredient. One cup of peeled chopped cucumber (133g) contains 997mg of fructose.

I feel like I can manage this. We will be fine.

[christi]

Hi Vanya,

I live in Cyprus. Please contact me, either on facebook: christina diamandis demetriade or by email [e-mail]

[quote author="vanya"
source="/post/2777/thread" timestamp="1216412248"]Thanks so much Fred. You actually managed to make me smile!

You may be right about her being the only HFI girl in Cyprus.... the DNA test was done here. And I feel very blessed to have been able to do it before Fructose even became an issue. This way I can start her out right from the very begining.

From the readings that I've done up to now, when fructose is ingested it is not processed to glucose and and excess fructose is stored in liver & kidneys which can cause problems with these organs. Does that mean that even if she can tolerate some foods with some amounts of fructose in them, the excess fructose still gets deposited in liver & kidneys? Or if she can tolerate it, it means its being absorbed by her body correctly and not affecting the organs?

Also related to this, can 2 ppl diagnosed with HFI tolerate different foods? Can one HFI individual tolerate more fructose than another? Is this where trial & error with different foods comes in?

Also I checked out the nutritiondata.com site. It is very helpful! it breaks down every food exactly to the last ingredient. One cup of peeled chopped cucumber (133g) contains 997mg of fructose.

I feel like I can manage this. We will be fine.

[/quote]