what was it like for you?

[hfimomof3]

Another thread made me want to ask you all, if you knew you were HFI as a child, what was it like for you to grow up being unable to eat sweet things? Did you enjoy your birthday even if you couldn't eat the cake? Did other kids make fun of you? What did your parents do to help you enjoy your food? Did they cricitise you for disliking fruit?

[julienc]

My brother also has HFI, so I think that really saved me growing up. He is older, so he paved the way, and we are the only kids in the family, so my mom just had to adapt and learn.

We didn't know about HFI until a few years ago, but we definitely knew there was something "wrong" or different about us. Thank goodness my mom didn't push foods on us, for the most part. She would get annoyed that we didn't eat or would pick at things like tomato-based meals. But she'd let me sit and eat a can of olives for a snack. One of my favorite snacks as a kid was a slice of bologna with cottage cheese spread on top. Kind of weird, in hindsight, but it was just my normal and it didn't bother my mom. She was great about the fruit. Now that I'm a mom, I think I'd have a heart attack if my child didn't touch fruit. But she just went with it, thank goodness.

The dessert thing was annoying. I think the fact that we tend to develop such sugar aversions really helps. I didn't crave it, so it really wasn't a big deal to me. I still loved blowing out my birthday candles and picking off the sprinkles (and would try to eat those). My friends knew I didn't eat it, but I don't ever recall being teased about it. My brother and I figured out that Pixie Stix, Fun Dip, and SweetTarts were safe, so I could eat those and didn't feel all that left out. However, that REALLY threw my mom (and us) for a loop. "How come you can eat that junk but not all these other foods??" I did, at times, think that maybe I was just really picky. It didn't add up for me. Again, with my brother in the same boat, it helped me realize that there was something more to it.

Anyway, that's my story.

[hfimomof3]

We didn't have pixie stix or sweet tarts so that wasn't an issue for me. My parents also knew what was going on so when I was in the care of another adult they made sure to tell them I couldn't eat sweet things. I diddn't get made fun of much, as I recall. Occasionally I was made fun of for drinking milk "like a baby" but my memory is that it rolled off my back, and it didn't happen often. I didn't have a choice in being unable to drink soda and it seemed preposterous to make fun of someone for something they can' tchoose, so I just assumed they were joking. I didn't get to eat cake or cookies etc, but my mom usually sent me to parties with a bag of cheetos and I ate those. I remember other moms saying, "Oh, I'm so sorry you can't eat the cake, that must be so hard for you" and I would just shrug and say, "I don't like the taste, and if I eat it I will feel horrible, so don't worry about it." Even as an adult people would say to me, "Oh you can't eat chocolate, how awful for you," and I just say "It's not a problem for me". I think it would be useful for people to realise, and sometimes I do say, that if you have never had it any other way, then it is just part of the scenery.

SOmetimes I do feel sad about being unable to eat strawberries though.

My parents made sugar-free meals, which I think was hard for my siblings who were NOT HFI. We had a very bland diet, all of us, as a result of my condition. Because of this, I try to make meals with sugar sometimes for my own children, so they don't have to eat totally sugar-free beacuse of me.

[colormist]

It was pretty much awful. No joke.

I am the middle child. My younger brother has HFI, but my older sister does not. I would get yelled at many, many, many times by teachers, babysitters, and family to eat the food on my plate. I ate lots of HFI-bad stuff as a kid. I'm surprised I grew at all. But then again, as soon as somebody brought something I could eat into the house, it was in my belly (entire bags of potato chips in under an hour). My brother and I would go through a gallon of milk in less than two days. Sometimes in less than 8 hours. I think the lactose might have helped our bodies deal with the fructose.

We didn't really have any fruit in the house--the occasional bag of grapes, apples, oranges, or strawberries. I didn't like grapes or apples, but I'd try to eat them. I preferred the rind of fruit: apples, grapes, oranges, bananas--that's what tasted good to me. Nobody really tried to get me to eat fruit.

I definitely recall being forced to eat rice (drenched in sugar and milk), spaghettios, baked beans, (this is making me nauseated just talking about it), corn, peas, jello, poptarts... ugh. I would hide things under a napkin at school, nibble around the edge of the poptart during breakfast, smash down the rice and push it to the side so it looked like I tried it, scrape off the tomato sauce of the spaghettios and just eat the Os, and sit for a very, very, very long time at the table until I was given permission to leave. I had been screamed at many times and had my butt beaten for my poor eating habits. As a result I became labeled as "extremely stubborn" and "very picky eater". I wore them down eventually, but spent a majority of my childhood being hungry (until potato chips came withing eyesight).

I think it helped a lot having a brother that was equally picky and stubborn about his eating habits. It could have been worse. My mom eventually adjusted her cooking style to what her two young children would eat. It was a bland diet of potatoes and chicken, potatoes and hamburger, pot roast, and lots of milk and water. My mom would get us french fries at the fair and demand (and pay for) ice water from the stands.

With friends, they never really noticed. I'd always receive cake and ice cream at parties and I'd be nice and nibble on a teeny, tiny bit. I mostly focused on the potato chips there, too. Once a friend got a candy bar from her parents and she split it up to share with all five of her friends. This was so generous of her, I ate my quarter-sized piece and instantly regretted it.

I would frequently gather up change from around the house and head to the local convenience store to purchase some 5 & 10-cent candy (pixy stix, tart & tiny, smarties, sweettarts, gobstoppers, tangy taffy, cherry jolly ranchers) that would only last a eye-blink before they were all in my belly. I was self medicating at 7 years old. (Okay, cherry jolly ranchers are not safe, but they are so yummy.)

I didn't discover what I had until a couple years ago. I told my mom and she looked so sad and guilty--like it was her fault. Some people still don't understand and think I'm making it up. These people I just ignore.

[charlie]

Gosh Laura, that makes hard reading, surprised you are as sane as you are. I bet your mum does feel guilty and bad now, I know how I feel when I yell at Megs thinking she is playing up and then realise she is having a food reaction (several hours later it finally twigs). In a way she is lucky growing up knowing what is wrong and it all makes sense.

It is strange tho, peoples reactions to what can't be eaten. I've always jumped on family for the comments on how sad it is poor child can't join in with puddings and spoken over people loudly as they start that sentence. I suppose I could always say "well you're welcome to give her some and then sit with her for the next 5 hours while she vomits"!!!!?? not sure I'll get many takers!! LOL

Mind you, always makes me laugh now this obsession in Britain, not sure if its worldwide that children must eat their 5 portions of fruit and veg a day to stay healthy. Ok Meg picks up any cold going but she is the tallest girl in her class and when not reacting to food has a wonderful glowing tan!!!? Maybe, good balanced wholesome food is just better.

[meaniejean]

Sawyer is off the charts for height and weight - a restricted diet sure doesn't seem to be hurting him - as opposed to the failure to thrive when he was on formula (with sucrose)!

[hfimomof3]

Wow, colormist, that sounds terrible. You must have been really hungry a lot of the time!!! I bet your mom was also getting pressure from other people to make you eat what she served. I know a number of moms who have the philosophy that, "When kids are truly hungry, they will eat, so if they don't eat what I serve, it is because they are not really hungry." ANd, that if you make something for your child other than what the rest of the family is eating, that this is being soft.

[colormist]

Yes, the mothers here should feel very fortunate that they know what the source of their child's behavior is. Even knowing that it's something medical and not just stubbornness is a step in the right direction.

My mom wasn't the one who would force me to eat things I didn't like. She would actually lecture me (when I got older) about wanting to try soda pop and say that I wouldn't finish it. She would tell my babysitters that I didn't like sweets, so they'd omit the usual sugar-laden foods for ones that were not so obviously sweet. She accepted my food preference, but didn't know the extent or seriousness of it.

She did try to test me when I was about 4-5 years to see if I was just faking it. She put a small spoonful of sugar in my morning cereal (at the time I usually had Cherrios) to see if I'd notice. One bite and I pushed it away. She laughed, then got me another bowl without sugar.

[julienc]

Geez Laura, that just sounds terrible. The only time I had it even remotely like that was when I'd eat meals at friends' houses, and their moms would try to make me "finish my plate". We didn't have a cafeteria at school growing up, so I brought my lunch from home every day. That was also a big help.

I think the older child may also have it a bit more rough.

I do recall a specific time in my life, probably early high school, when my friends went from a sympathetic point of view: "Oh, we're so sorry you can't eat ice cream" to: "I wish I had that problem!" I've gotten a lot of envious comments about my lack of taste for dessert. As we all know, we wouldn't wish this condition on anyone!!

[meaniejean]

My mom always let me pick out my own food. I could never figure out why I was allowed to and none of my siblings were. They thought it was really unfair. Now that I am a mom to Sawyer I've realized why she did it. If I tried to cook around his food preferences/restrictions I'd go crazy. So instead we always have mac n cheese or pasta cooked and in the fridge for him in case he won't eat our dinner.
Growing up I just felt awful at every special event because I tried to eat like everyone else. My mom determined that I was "allergic" to Tang after I vomited profusely after drinking it when I was four. That stuff is like pure fructose! We didn't really have much fruit in the house and we couldn't afford desserts and candy. The only thing that really got me was birthday parties and school trips.

[jen]

When I was a baby it was a drama every time my mother tried to feed me and she found out by accident that I couldn’t tolerate sugar containing food items. Luckily I was born with a huge aversion for the sweet stuff. She started experimenting with food and accepted what it was. And within our family it was never really a problem. Although it was never clear why. This was 45 years ago. Nobody knew about HFI. Our family doctor just told her that I couldn’t tolerate sugar and that was it. No knowledge on why and what it could cause.

The reactions of outsiders were a bit different; I was weird because I didn’t eat candy or ice cream etc or they thought I was spoiled because I didn’t eat any fruits or most of the vegetables. Try to explain to an adult why you didn’t like that kind of food. Because without the knowledge I have now I just told them I didn’t like it.
And still people have no knowledge and it gets old to explain over and over again what I have.

colormist; Milk and potato chips sounds all too well familiar. I still drink a lot of milk (fat free). I guess that is my favorite beverage. And I can tolerate milk.
julienc; I still get that. ‘You can’t eat all the good stuff?’ ‘You don’t know what you miss’ and ‘I wish I had that problem’.

I’m almost 5 feet 10 and weigh more then I should so people are sometimes a bit surprised when I tell them what I have and what I can’t eat.

[hfimomof3]

I agree that it seems to be as you get older that people get less sympathetic. When I was working, my boss and coworkers would make fun of my predilection for salty foods. I occasionally pointed out that a normal person can have candy or chocolate or cupcakes or ice cream or soda, and often more than one of those things on any given day. It's only because i only HAVE one option that it is really noticeable. But, they didn't really get it.

I've also found that now that I have my own kids, it's hard to cook nutritious food for them and also edible stuff for me. People don't really understand what that is like.

[evelyn]

I've also found that now that I have my own kids, it's hard to cook nutritious food for them and also edible stuff for me. People don't really understand what that is like.

I totally understand this I cook 2 different meals every night. I am starting to use the slow cooker for everyone else and then whatever I have to have for myself I just cook separately.
I also have to have salty foods all the time. I don't know if I have HFI or not but, why do HFI patients crave salty foods?

[hfimomof3]

I don't know why. For me, I think it is that my regular diet is so bland that I just crave something with taste. I also crave tart things like lemons and berries. My mom told me this is because they contain vitamin C, which people with HFI won't get from their diet but biologically you need to take vitamin C in every day. It is probably also why some of us crave things like pixie stix: it's not the sugar, it's the tart. Pixie stix contain citric acid.

[charlie]

I have found now that I cook Megs food and then add something on the side eg veg, stir fry or even just use a chilli / garlic grind on top to add a bit more flavour for me. That way she can join in the meals and to be honest I feel much healthier now.

[meaniejean]

Most of what we cook is low fructose and then we have veggies on the side. Cal and my husband just take in some extra fruits and veggies and Sawyer and I continue on with our pretty bland diet most of the time. But, Sawyer and I are happy eating "boring" (but salty!) food every day.
I'm not sure what Sawyer has (FDPase deficiency, HFI, FM or Familial Mediterranean Fever), but he is pretty good at regulating himself. If he has pizza with a little bit of sauce on it, he won't want anything with fructose for a few days. I'm trusting his instincts - as long as his health doesn't suffer, of course.

[esmee]

I am new to the board and not sure if I have the severe form of HFI as some folks on here do, but I definitely have something very close to it.

I never really liked the purely sweet taste; I always choose sweet & sour candies and desserts. I was a VERY picky eater as a child and my mother let me start cooking for myself when I was only 8 years old. Mostly I ate nachos, tostadas, tacos, burritos, beans, rice pilaf, cheesy tortillas, chicken noodle soup, cheese, popcorn. The only vegetable my mom could get me to eat was canned green beans. With the exception of tangerines and oranges, I never really liked fruit.

Eating a sugary breakfast like cinnamon toast or pop tarts made me feel ill before lunch, so i learned to eat only protein rich foods for breakfast. i remember eating pretty much all the time after school. I don't remember too much tension over the food, as my mom definitely gets hypoglycemic from fructose as well and has been an over eater all her life (probably in response to fructose consumption) and never did to me what she would not want done to her (i.e. restrict food intake or choices) so I was lucky there.

The worst was going to my friend's house for dinner. I always had to know what was being served and if I did not like it I would decline and my friend's mom thought that was VERY rude and that my mom had spoiled me.

I also wet my bed until I was 10 years old (very embarrassing) and always felt like crap in the morning (often sleeping in until 12 when given the chance). My mother also considered me to be a very "moody" child, which I now believe was a consequence of fructose toxicity/hypoglycemic episodes.

All in all it was not too bad, though I always felt like something was wrong with me and that I was different. I was always afraid of being without food in case I started to feel bad. The hypoglycemia got worse when I decided to become a vegetarian and then vegan in my late teens and my fructose consumption increased exponentially. I had a hard time doing "life" because I always felt so bad, but stuggled to act "normal" for as long as I could until I totally collapsed in college at the age of 26 with what was believed to be Chronic Fatigue Syndrome. I spent the next 10 years in bed and everything I ate made me sick. I was labled anorexic by one doctor which was extremely infuriating. I eventually found that I could eat goat milk yogur and raspberries without feeling too bad and I lived of those two foods for 2 full years and started to regain my health to some degree. I am just now beginning to understand why that diet worked so well for me, as it was so low in fructose compared to the way I was eating before that. Anyways, I am glad that I FINALLY understand what the problem has been all my life and now I can procede to do something about it.


I am a confirmed celiac through intestinal biopsy and I strongly suspect that I am also lactose intolerant.