Sugars, Sweetners & Alcohols Defined

[hanifa]

does red grape fruite (jaffa) contain alot of sugar and calories and is it ideal for dieting

[azmary]

Great job, Kristen, especially with the new edit and your consideration of both DFI's and HFI's. Bless you for all your efforts! azmary

[Melissa]

Hi, everyone. My name name is Melissa and my 10 year old son, Bryce was just diagnosed with HFI. I've noticed problems with certain foods, lots of "food allergies" as a baby/infant, but thought he outgrew them or was just a "picky eater". He had a really hard time gaining weight, Doc said it was due to the picky eating. He really started having problems in March of this year. Had all the tests done, Abdominal CT, ultrasound, stool test, blood tests. I finally demanded to see a GI doctor when one of his tests for gluten sensitivity came back positive. She suggested a fructose tolerance test first. Well, for better or worse, we finally had our answer. It has only been two weeks and I'm trying to learn everything I can, but it's all so confusing. And the medical profession, sad to say as I'm a RN, is no help. 90% of what I've learned, I've learned from reading the postings on this site. A big thank you to Kristen who posted all the info on the different sugars, as this was confusing me. Two questions: Is citric acid as an ingredient allowed and what about bacon? Some say yes, some say no, but I know it is cured with sugar, but is it safe? He really loves bacon and has given up so much already. This has been really hard on us. My 7 year old daughter was just diagnosed with Juevenille Diabetes last Septmeber and trying to meld two diets is hard. I will defintely be spending more time on this site, as it has been way more helpful than his doctor, who actually told me that I would become the expert on HFI so that I could teach him about it. Once again, thanks to all who have gone before and shared what they have learned. I will try to do the same.

M

[Tammy]

Hello and welcome.
Citric Acid is fine. They actually encourged us to get all we could in my daughters diet.
As for bacon, bacon is fine ONLY IF it is NOT cured with sugar. They do make it. The brand we use is "Smithfield", only because it is the only one that my local stores, in this very rural area, carry. They don't sell it online, but here is a website that will tell you what store in your area may carry it. www.smithfield.com/products/bacon_saus.php
I hope this will help.
Tammy

[Melissa]

Tammy,

Thanks for the info on bacon. I will check out the website for any local stores that carry that brand. The reason I was asking about the citric acid is I found a website called www.smilemakers.com that carries sugar free candy (not much, suckers and the like), but my son was so excited that he could even have a sucker that I wanted to be able to order from them, if I could. We do have a store here in town, called Wholefoods that seems to have a lot of food he can have. I believe they also have a website, www.wholefoods.com, but I haven't checked it out yet. Might be worth a look. thanks again.

m

[Melissa]

Correction on the local store website, it is www.wholefoodmarkets.com. You can't order online, but it does have a listing of local stores and a section marked special diets for your local store. The brand we have found most helpful is 365. Also, they have a chocolate chip cookie, brand name Aunt Gussie's. But it has vanilla extract. Is Vanilla extract allowed or should it be avoided like vanilla sugar? What about dehydrated cane juice, safe or avoid? They make a "rice cream" with this ingredient. Also, the cookies are made with coffee, probably don't want to give a little one too many of them, but they are good. I have much more to ask, but I'll save that for later postings. Please be patient with all my questions. I have so much to learn and this seems to be the only place I'm going to learn it.

m

[Tammy]

Since your son is HFI, hopefully he'll be able to handle the same things as my HFI daughter. A lot of the mothers on here haven't been able to get a DX yet, and some of the things that work for them, doesn't for us, and also some of the things I can use, they can't. Like Aspartame and the sugar alcohols. We are fine with them. We avoid Sorbitol but the rest of the alcohols and artificial sweetners (except the new Splenda) seem to be fine. If she overloads on them she'll get loose bowels, but that is a problem for everyone who eats too much of it, not just HFI.

Vanilla extract is fine. As for the dehydrated cane juice, I don't know absolutely, but if I saw it on a label somewhere, I would avoid it. We live by the rule of if I'm not sure, then we don't try it.

Gertrude Hawks makes a sugar free chocolate that Regina eats daily. She loves the chocolate covered pretzels. Voortman makes a sugar free tea ring cookie. Not all Voortman types are ok, some have sorbitol so be sure to check each type.

Her favorite quick dessert type thing is SF Chocolate pudding with the new sugar free Cool-whip. Usually I avoid anything that says "Corn syrup" in it, but I have contacted the company and they have assured me that it doesn't contain Fructose in their corn syrup. So we finally got brave and gave it a try. It is fine.

My daughter is 24 now and has been very strict on this diet since she was 2 1/2. I don't know as much of the scientific explanations as Kristen does, but I've been dealing with the foods for a long time. Just like your Dr said, when she had to be in the hosp last year (for an unrelated issue) everyone had to ask me what she could and couldn't have.

I'm to a point where I can't be of too much help to some of the other mothers since their issues are still fructose, but different than ours. But maybe since yours is HFI I can tell you what works for us and what doesn't.

One final comment. No matter who gives you what advice, always make the final judment on what you and your Dr. think. Everyone here is different. And the end result is your childs health. So with that said, fire away with your questions, both on here or in a e-mail and I'll be happy to let you know what this old mom thinks.
Tammy

[Melissa]

KJ,

He's had the cookies before, with no problem, but I will defintely limit them and watch for any symptoms. But the rice cream brought on abdominal pains and loose stools.

Don't worry about bursting my bubble. I would much rather hve my bubble burst than my son in pain.

Bryce was finally diagnosed by Dr. Jean Davis in Fresno, a pediatric GI doctor, using the breathe test. No other doctor in fresno will deal with this diagnosis. It was his primary doctor who wants me to become the expert so that I can teach him.

Since we have been following a fructose free diet (as best as I can with what little I know), I have noticed that when I mess up and he gets the wrong food, no matter how small an amount, it's enough to bring on his symptoms. I only try one new food at a time, that way I can try and figure out what ingredient caused the symptoms. It's still so frustrating, but it's good to know that there are others who know what's it's like to deal with this and who I can go to for help.

I've decided to put together a binder so I can keep track of everything, specifically the foods/ingredients he can tolerate. I think that once I get more organized, maybe it will be easier.

Thanks again for all the advice. I'm at work, but I will be checking back in later.

m

[Tammy]

Tammy VS Kristen. ;D
Hi again
I also checked the candy site. The only ingredient I question is the natural flavor. If it is fruit flavored, then I always hesitate. I'm fortunate here because Regina doesn't like fruit tastes.

As far as the Hydrogenated starch hydrosylate, I allow it. You will find that Kristen and I disagree on some things. She follows more what Coley can tolerate and I follow more what Regina can. Regina is HFI and Coley is not (I really do wish, for her sake, that I had a DX to put in here for Coley), so therefore we don't always agree. Example: Chocolate and aspartame. Coley doesn't do well on either of these, and Regina lives on them. She has both every single day.

Kristen has recently started this diet and with all the info now available she researches and finds all the logical answers. I started it back in the days when all there was was limited charts and a very helpful dietician. I had no choice but to trust their answers. So I always use the old tried and true. Even when the logical answers make more sense. Example, I was told no nuts. Some are now doing fine with peanut butter, and even though I love PB myself, I will not try it for Regina. I feel our bodies are far from perfect and things just don't always make sense, even though they should.

Kristen also likes to make things as "healthy" as she can, in a non-HFI sense. I feel that most "natural" things are more like poison to HFI so I go for all the artificial I can lay my hands on. Therefore she likes the natural food stores and I despise them. There isn't much in them to choose from. (I don't have any chain health food stores in my area, so I'm only looking at the small local ones) I prefer the bigger supermarket type stores that have more to choose from. The more artifical flavors, sweetners, etc the better. I don't feel it's easier to just make everything from scratch. Give me all the prepackaged, microwavable things I can get. But then Coley is a whole lot more sensitive to a lot of things that Regina does well on.

Kristen also still tries to keep flavor and variety in his diet as much as she can. Regina mostly eats the same things day in and day out. She likes things that are plain. I really think things taste differently to her than they do to me. Somethings we eat the same, but there is almost always her pan on the stove right beside my pan. If I'm making meat loaf, everything goes in my pan, and very little goes in the pan on the side. She doesn't feel left out. She's eating basically the same thing, and she likes hers the way it is anyway. I have already tried making things like her cookies with more dextrose to make them taste more like mine. I like them better. But when they are laying side by side, she will take the one I like less everytime. She likes plain and simple so that is the way I allow her to eat.

Kristen also does a lot with balancing fat/carbs/ etc. This is totally over my head. It's very good for Coley and he is still small enough to make it work. I don't do anything like that. When Regina is hungry and wants a snack, she goes to "her cupboard" and gets whatever she wants.

But one thing Kristen and I do agree on is that she is a little too far on the logical side, and I am a little too far on the other side. So therefore it is probably a good thing for the rest of you. You can have both opinions and can hopefully find your own road down the middle.

Tammy

[alice]

My daughter is 12 yr. old, and has been sick for as long time. I have been watching this site for several weeks. It took me a LONG time to actually find any information about fructose free restrictions besides the BU site, but I needed more help and found it here.

I was VERY hesitant to actually "join" this forum because my child has not been diagnosed with HFI - but she has responded dramatically to a strict fructose diet, her HFI bloodwork is pending. She has multiple issues as it seems many of the families dealing with HFI/or other fructose issues also have an overflowing plates.

I contemplated not joining in case her bloodwork is negative, but I have felt the kindness towards me - when directed towards others with or without a diagnosis, this encouraged me to "join".

I am rambling because I wanted everyone to know that is a member or watching from the sidelines as I did for a long time, that I am learning so much from the posts from the site - ALL OF THEM.


It is such stressful, lonely and often it feels hopeless when you have a need, you are trying to find a way to obtain health for your child or yourself, but have no resources to fulfill that need. My need was truely filled by finding this discussion board.

I have learned so much from the Mom's info, the adults with HFI, and the very technical information posted. Everyone's input has helped me so much.
It is very difficult to try to buy items that you do not have any idea what the ingredients mean, and the lists that have been posted have helped me to understand a tiny bit better and I refer to them often.

The Mom's posts are so informative and so helpful.
Maybe comforting to know we're not alone?
It has helped me to see how other doctors have been towards some of the families here, and hearing about these experiences has helped me to see that I am not alone.

My daughter at 8 years old stood outside of Children's hospital in Boston and in a desperate tone told me it was nice to have someone believe her. How long was she aware, as we were, that many insensitive doctors (and family and friends) didn't seem to believe her, or at least wouldn't empathisize with her, at 8 years old and years prior. (and we have been to a lot!)

It is SO SO SO nice to find ways to buy items that are PREMADE! I would LOVE a long list to use as a guide to grocery shop with. OF course, easy for me to say, but just a guide to try certain brands that have worked for others!
It is also nice to go obtain items from a health food store with few ingredients (not as many if you stay away from whole grains, fruits, veggies and try finding an artificial ingredient at a health food store, yikes) and to have the recipes for those that love to cook, or at least attempt to cook!

Thankyou again for all of your information, I mean that to everyone that has posted here, all of it! My bottom line is serving a strict fructose free diet to my child. I think that is everyone's that posts here with or without a "confirmed diagnosis". Please correct me- if I do not belong here because we do not have a "confirmed diagnosis". If her labs come back negative I was thinking we'd still be welcome here?

I hope the posts I read today are adults agreeing to disagree?

[Tammy]

Alice,
By all means, feel free to join in here no matter what the DX is.
I do really agree with what Kristen does for Coley. He is a very special case and it's probably a very good thing that he has a Mom like Kristen, trying to find out what works for him.

Kristen and I are not in competition. We just think differently on some things. Not the things that really matter, we do agree on them. Like I said on the bottom of the post, she goes hard one way and I go too hard the other. This isn't a right or wrong type of statement. I think I just wanted all the other mothers out there to know they can disagree with me and/or her and it's still ok. She and I had this same type of conversation through e-mails back in the beginning, and like you said, we basically agreed to disagree on minor points, but do feel the same on the basic ideas of this site.

I think the purpose of my post was to kind of let everyone know that it is ok to not be a supermom. If I was new here I would be terribly intimidated by all Kristen's knowledge and feel overwhelmed by it. This is by no means an insult to Kristen. Quite the opposite. I admire her for all she has been through and all she's accomplished for Coley. I don't know that I could have done it. And she is great with sharing her info to the other moms who need it. But I also wanted to let the rest of the moms know that it is fine to be a normal mom, too. One who doesn't know everything, and doesn't have time to do all the stuff that she has to do. It's ok to make the quick things and get artificial stuff when there isn't a problem with it. Kristen doesn't have that option, whereas I do.

So Kristen, you keep giving all the info on it, and I'll keep reminding you that we're still here, too. And we'll let all the rest amuse themselves with our different styles. lol. Not good, not bad, not in competition, just different outlooks to choose from. deal? ;D
Tammy

[laurie]

Wow, I know I've been away for a while (computer probs), but what's going on? Survival of the fittest? (lol)
I have to jump on the Kristen band wagon on this one being as Hunter is also a child doesn't appear to fit in to the perfect HFI plan. Some things work for him, but the majority of them don't which is why he is tube fed.
I have found that simply because a certain food is labeled as HFI safe doesn't mean it will be tolerated. Hunter is my classic example.........no sugar substitute has worked for him!! Not aspartame, stevia........nothing.
We haven't been through the biopsy, but I don't feel the need. Evidently the doctors got all the answers they needed with all the tests and blood work they did to give him a dx of HFI.
I'm greatful for all the help I've gotten here on all issues including the foods, but when it comes to needing the "nitty gritty" on anything Kristen always has the answers. I f she doesn't, then she always manages to find them.........thank you KJ.

Being a mom is a tough job in itself, but when you add in a child that can't/wont eat it makes it harder plus Tammy you have to keep in mind things have changed a lot since Regina was young. We all wish our kids could be doing as well as she is, but that's not how life or this condition works. The do's and don'ts, yeses and nos. allowed and not allowed are totally different for child depending on their own bodies.
If it was all set up right then my son could eat pork chops with no problem, but he can't so I need to know why. I, like Kristen, long for the day that even if Hunter can't eat a lot of foods, the foods he can eat will make a healthy meal. The looks I get right now from people when Hunter says........"i ate sunflower seeds for dinner" are getting old. Kristen has kept me going and kept me from giving up completely being as I couldn't understand why so many of the other kids would do so good on certain things and Hunter couldn't take. Kristen and I have spent many hours disecting foods right down to how much greese is in them to see why Hunter's body keeps rejecting things.
So I guess what I'm saying here, is we are all different, and all react to different things.

gotta run right now............will try to get my thoughts more together and post again soon.

Laurie

[alice]

Hi Girls, I didn't mean to open a can of worms here. I thank you BOTH Tammy and Kristen for clarifying that you both have the same bottom line, you have both responded with that same thought. I also thank you both for making it clear that people that are responding well to a fructose free diet are welcome! That includes me.
I want you both to know that you BOTH have been a great help to me on this site, . I am using both of your recipes daily and your shopping items. I also agree, let's finish this post.
So, I have an idea, Is anyone interested in starting a BIG list of fructose free items easily found in stores? If it's already been done, maybe I need to re - search to find one.
Also, if anyone has had the trouble with toothpaste that my daughter has had, be sure it is fructose free!
Alice

[Tammy]

Kristen,
I read your post from 10:28 am just before I dashed off to work. The one where you talked about your feeling guilty. I spent all night at work composing my response in my head. Now that I'm in front of my keyboard, I still want to post it and hope I don't forget any of it.

I was going to answer you in an e-mail to make it seem more personal - but finally decided that maybe all the moms should hear this.

You are right in that you need to find your own answers, but I'd like to tell you the answers I finally found for myself. I may have said some of this before, and if I did I'm sorry to repeat myself, but I'd like to tell you again.

I'm not sure if it's a HFI "patient" topic, but with so many new moms on here, I feel it deserves a category by itself. So I'll post my response under a new heading. I put it under miscellaneous. I don't know if it'll help at all - but I hope you'll take the time to read my often "off kilter" way of thinking. A story by an old mom that's had time to find her own answers. I hope in some way it can help you find your peace.
Tammy

[Melissa]

Hi everyone and welcome to Alice. It's been awhile since I could come back to the site. I have been trying to find websites with more info or stores that sell foods Bryce can eat, My frusteration level is building again. I just have a few questions for the moms that have been dealing with this for awhile, diagonsed or not. Any and all replies are welcome.

I was told that popcorn was safe for people with HFI and have been allowing Bryce to eat it, with no problems, until last night. Within 30 minutes he was having extreme abdominal pain. So popcorn is now "off his list" as we call it. Is it possible to "tolerate" a certain food item, then devolp an intolerance for it? Obviously in Bryce's case it is, but I wanted to know if others experienced this. Also, is it safe to treat the abdominal pain with an analgesic. He was in so much pain last night, curled up into a ball and crying, that I gave him Ultram, which helped. But is that ok for HFI?

Also, I had a question for Kristen (or anyone else who can answer this). You mentioned developmental delays with Coley. Bryce to has had academic problems most of his life. But since we started his fructose free diet, I've noticed an improvement, especially in his reading skills. Is this common with HFI? Can fructose in the diet of people with HFI cause learning delays? And can they be helped by following a fructose free diet? I have also noticed that he has started to gain weight since we started his new diet.

It is simply amazing to me that the doctors we have dealt with over the years regarding his food problems, learning delays and inability to gain weight could not put all of this together. It was only because I was tired of watching him suffer (the symptoms, including the pain got really bad in March of this year) and insisted that he be tested until they found out what was wrong. I also had to listen to family members tell me he was faking it, or just wanted to stay home from school. I had to keep telling Bryce that I believed him, but I didn't know what was wrong and couldn't help him, that I was doing the best that I could. As a parent, that made me feel horrible.

Also, I am wondering if I should have my daughter tested. She had many of the same food problems as a child and even had a whey allergy as an infant that she seems to have outgrown. But she is constantly complaining of abdominal pains and having frequent bouts of diarrhea. When she was diagnosed with type 1 diabetes, I thought that was why she was having problems, but now I'm wondering. How common is it for both siblings to develop HFI?

Kristen, your list of sugars was/is very helpful for me, but i can't seem to find it on the U of Iowa site. Can you post the exact website address for me?

I obviously need to do some more reading of the many different posts on this site and will be spending the next several days doing just that. We are still waiting for the follow visit with his GI doctor, so for now I am learning what little I know on my own, from this site and from the help of my brother, who was actually the one who found this site for me. No, my brother doesn't have HFI, he is just the one family member who is supporting me in all of this.

[Tammy]

popcorn has always been a question for me. I was never able to obtain a good answer. I've heard that some people do well on it. We have never tried it since I don't know, and she's just happy with her other snacks. If we go to the movies, we always just take some of her pretzels along.

As far as eating it up until it bothered him, it could be something that we have been calling a "restrictive ok" item. Meaning that it's ok but only so much of it. Like Regina can eat oatmeal several times a week, but if she eats it everyday she gets diarrhea from it. Same for broccoli. Once a week for that is it. And every person has their own limits for these kinds of items.

Regina also has developmental issues. Way back in the beginning her Dr told me they were round-about related to HFI. Today they say they aren't. So I don't know for sure. But it's for sure that all the kids feel better on the HFI diet. So it could just be that they do better because they feel better, or it could be they actually do better on the diet. Either way, the end result is usually that you'll see a much better kid all around.

It is indeed possible that your daughter could also have HFI. Both parents have to be a carrier, then the child has a 25% chance of having HFI. If she has a lot of the same symptoms, I'd say her chances are good. It seems to be that some are a lot more severe than others. It could be that she's just not quite as sensitive and can tolerate more.

As you're probably finding out on your own, there's not a lot of info out there on HFI. Most of what we all know here is from experience, old confusing contradicting lists, and very little actual documented things.
Hope we can help anyway we can.
Tammy

[Melissa]

I think for now we'll stay away from popcorn. I might try it again later, in limited quantities.

As for testing my daughter for HFI, we have an appointment with her diabetologist 9/13 and I'll bring it up then. I'm not sure how safe it is to test her for HFI, what with her diabetes. The fructose might send her into DKA and that's something I've managed to avoid so far. Her diabetes is very hard to control and she has frequent "unexplained" LBS levels. Unexplained in that the same dose of insulin can send her blood sugar crashing. We just had a very scary incident at school yesterday. Her blood sugar continued to drop despite extra carbs to the point where she was becoming unresponsive. And I was at work, in the ICU and couldn't really leave. Thank God she turned around before anything happened. But after reading many of the posts, I'm starting to wander if HFI couldn't explain her problems with low blood sugars.

I guess I'm just afraid to have her tested and find out she also has HFI. How in the world well I manage her diabetes if she has HFI. I know there are worse things to have to handle, but I guess I'm just being selfish.

I'm a single mom at just about at the breaking point with trying to figure this all out. This site has been a god send and I'm slowly starting to get things figured out.

Thanks.

[Tammy]

Diabetes and HFI both would be a hard diet to handle. But as long as she was happy eating a consistant diet, it would be do-able. It might even help keep the LBS in check, if you knew.

My daughter is HFI and we have never had an issue with LBS. But not all with HFI can say that. Kristen's Coley and some of the other moms have issues with it. Some of them are also looking at FDPase or Glycerol instead of HFI. Maybe that would be worth looking into for her. They seem to have a lot more of the LBS problems.

This is a hard thing to find info on, so I'm glad you stumbled your way here.

[Chelsea]

tammy said:

It is indeed possible that your daughter could also have HFI. Both parents have to be a carrier, then the child has a 25% chance of having HFI. If she has a lot of the same symptoms, I'd say her chances are good. It seems to be that some are a lot more severe than others. It could be that she's just not quite as sensitive and can tolerate more.

I had a conversation with our Dr about this since my 3.5 year old has a limit with fruits, too much gives him diarrhea. He believes Aiden may be a symptomatic carrier to a degree. When his body gets too much it shows some symptoms but nothing serious.

I asked about the possibility of having it a a lesser degree, he said that wasn't possible within the same family. The genetic error would be the same so you would expect a very similar course within the family, not like the variations we see between us. More food for thought I suppose.

[Princinomin aka Prince]

oh my god i never knew that people ate such junk