DFI not HFI

[roc50]

Hi all,
Just joined this forum, hope its ok, I have DFI, developed it more than a year ago but was not aware of the correct diagnosis until July last summer after they discovered I had giardia parasite. All fructose, all sugars including sugar alcohols(all these include all spices and vegetable oils) bother me. Of course, most of these things I found out the hard way. Thank goodness sugar substitues are ok. I finally got used to the taste of aspartame and I use dextrose. I am very tired of the bland foods and it is very difficult to plans meals (for 3 of us) with this problem. Of course it doesn't matter how much it bothers me, I read all labels and avoid these bad foods because I don't much like the nausea, cramping and diarrhea. Also very difficult to eat out, I never eat fast food. Most restrauants are very helpful but a lot of them pre season a lot of things. Anyway thanks for reading this and if anyone has any ideas or recipes to share I would love to hear from you. E-mail me personally if you want. ;D

[Tammy]

HI,
Most of the people here have HFI. But as you probably know, the HFI diet is more strick than the DFI diet. So most things on here will be fine for you. You can use our recipes, we just may have to double-check your ideas.
But we certainly welcome any and all ideas.

Some of us here are new to this diet, and some of us are old hats at it.

Check out the recipes and see if anything sounds interesting.

Tammy

[roc50]

Hi to you,
I assume you mean more strict as in more of a threat to your health long term? Because my diet is very restricted and a lot of the recipes I have seen here are more flexible than what I can use. I would never assume that any of my ideas during the relatively short time that I have had this would be of any help to anyone here.

[Tammy]

By strick I meant that you are allowed more foods than what HFI is. At least according to the lists of aproved foods I have seen. The most recent being the DFI list on the U of Iowa's web site.
All the lists of HFI we have are contradicting, but the basic one is on Boston Univ web site. You can check it out and see what you think.

Some of the items in my recipes are on a limited basis. Like Broccoli. My daughter, Regina can have it once a week at best. And usually not even that much. But I included those recipes also.

I noticed a couple of things like strawberries on the DFI site. HFI can have NO fruit.

So the best thing is to figure out what works for you and just stay with that. What did you see in the recipes that doesn't work for you? I'm just curious
Tammy

[roc50]

yeah you are right about the list but I seem to be an exception, I cannot tolerate ANY fruits, no sugars, no spices, All meat seems ok without seasoning(except salt and pepper) have to use sunflower oil or cannola, I can tolerate aspargas, celery, green onion, mushrooms, spinach. If I eat things I can't tolerate I get nausated and severe diarrhea. A lot of recipes have lemon or rubarb. I pretty much have figured out what works but would like to get other peoples ideas, might be something I haven't thought of Sharon

[trish]

Hi All
Just joined. So happy I found this. My son is hfi and lastose intolerant, I't has been a tough road the last 3 years. But we are learning. I seems trial and error is best. He can have things that others cannot and visa versa. I have found a good all-purpose breading that doesn"t bother him. No sugar.Made with dextrose.Also, instead of onions try shallots. There great. You can find them dried or fresh

[roc50]

Hi again,
I am always looking for a little variety with my crazy diet and in my research I found that allrecipes has quite a few sugar free recipes, too many with fruit and lots of stuff I can't have but one or two is something. The sugar free cookies is one I am going to try soon, without the jam on top. Here is also a pretty good search engine if you haven't seen it already www.foodieview.com/index.jsp

[azmary]

Hi, all - I'm guessing that the posting here in the "DFI zone" is not very active because you are just like me...please let me know if my profile is anything you can relate to!

I am an adult (age 53) who was diagnosed in August, 2005 with fructose and lactose malabsorption via the hydrogen breath tests. This was, of course, in combination with almost every other GI test Mayo clinic had at the time.

I had relied on the U of Iowa website (when there was one) for information but have continued to experience acute abdominal distress, fatigue, mood swings, and weight loss.

FINALLY, I started to pay attention to how strict the HFI people have to be and have been following their protocols. My body seems to be responding well to the advice of the adult HFI's and the intensely passionate parents of the wee ones with HFI.

Obviously, some of us with DFI have a higher sensitivity/lower tolerance to fructose AND sucrose AND sugar alcohols. I cannot tolerate any fruit or vegetables or whole grains (a more recent discovery). So I've been hanging out in the HFI toddler area soaking up all that I can from their parents. I hesitated to speak up on this site because I am so aware of the serious HFI medical consequences compared to our DFI symptoms.

With the warm welcome of Kristen and others, I decided to introduce myself here, also. I may as well have been diagnosed with a latent or "adult onset" of HFI!! I know I am not alone from some of the messages posted here, but y'all are a pretty quiet group! Does anyone else feel like I do?

Thanks for listening - I know we owe a lot to all these HFI folks and maybe we can give something back at some point!

mary in az

[nancyrandall]

Mary,

Welcome! I am one of those moms but, my son has not been diagnosed with HFI. The GI doc just said Fructose Intolerance. When I questioned which one I got a confused look and she said he could not be HFI becuase he is not falure to thrive.

What we do know is that he does best on the HFI diet so that is what we are sticking for now. Can any of you seasoned people tell me if DFI runs in siblings? I know I have heard HFI does. My youngest (8 months old) may also be FI. He nurses yet and we have only given him a few items off of the HFI list. I tried about 1/4th of a banana on tuesday and he has had diareha and been very crabby since. I have an apointment with his doc in a few weeks and I plan to discuss it then. We also tried a few spoon fulls of apple sauce a few months ago and the same thing happended.

For now we plan to stick to the HFI diet with both our boys.

Nancy

[Tammy]

"failure to thrive?" Sounds like your Dr is in the same league as most other Drs. They don't know a lot about HFI. My daughter had the open liver biopsy done (years ago) so there is NO question about her HFI, even though Dr Tolan's testing didn't show it. And she never had a "failure to thrive" time.

I do check this site every day, and most days morning and evenings. I guess I've become one of the "quiet ones" lol. Hard for people who know me to believe.

Kristen has, by far, learned the most about all these different types of fructose issues. Her knowledge on the scientific questions go way beyond anything I know. Regina is strickly HFI. She is very sensitive to fructose, but doesn't have any of the other issues that Kristen has to deal with. So I guess that is why I just let her answer away. I allow things that she can't, but she also realizes that some things are HFI safe, even if questionable in a "healthy" sense. These are the things I allow. I restrict so many things that I give Regina all the artificial stuff I can find.

But, any "Mom" practical question I can help with, I'll be sure to answer.
Tammy

[azmary]

Nancy -

To answer your question about DFI running in families, I know my mother, 3 siblings, and their children have no FI trouble at all. They don't "get" how this happens, but then, neither do I!

For that matter, I'm just darned disappointed in the lack of knowledge by medical (and even "alternative" medical) people about any of these FI conditions. I feel that my main role as a patient to my last 5 doctors and 2 dieticians has been to educate them! Grrrrrrrrrrrrr...

That's why we need each other's feedback to support, encourage, and often sympathize with all the unique situations presented here. It would not surprise me if "they" discover that those of us diagnosed with DFI may have some of the same long-term risks as those with HFI. I hope I'm wrong, but I can't see taking any chances either... my best wishes are with you on this journey! mary

[sarahk]

Hi,

I have HFI, but can eat spices including curry, thyme, rosemary, turmic, and others. Do all spices bother you. GrillMates is a meat seasoning with no sugar that doesn't taste sweet or have any sugar. What about plain salt, pepper, or garlic.

[Peter]

Hi,

Well to be honest, yes I eat a lot of spices because everything seems so blend without it! Of course that it has fructose and it probably is not helping to eat ANY amount of fructose for me (HFI) but if we have to be so strict that we cannot even eat spices well I think that I will just not have fun eating anymore. I use cinnamon on yogurt, cayenne or thyme on pasta and so on. In fact I discovered that spices are good for your liver and kidneys (apart for the small amount of fructose it contains), it adds color to your food and is good for digestion.

Garlic is kind of a problem for me, if I eat some I will start having symptoms. It's not really fun to be so restricted, coworkers are always wondering why I'm eating weird things... I have not told them about my condition.. How are you dealing with the situation?

[Tammy]

We can use all spices, except alspice.
That is the only one that we avoid. The rest are not any problem.

[zueban]

Hello,
It has been awhile, from what I can tell, since people have posted. However, I am really needing some help. One year ago I was dx with celiac, fructose (DFI) and lactose intolerance. I have a host of autoimmune dieases that were running havoc in my body, but western meds, eastern practises, and a gluten free diet has helped a lot. I am a working mom of two kids (adopted) so I am not concerned at this point about them. But I am confused and lost as to what the heck I can eat. I just got my one yr. celaic anniversary scope and I am doing great. My celiac nutritionist and GI don't know much about DFI or HFI for that matter. They are at a loss too as I maintain a low fructose diet, I did the strict one for a time, but no change. Frankly, my belly is awlful! I am a pretty in shape person, yet my belly feels like I am either pregnant or going to burst all the time. I guess my first question is...anyone one know what flours are FI safe and gluten free. I really like to bake.

Thanks for listening,
Suzi

[Tammy]

Sorry, but I'm not going to be much help to you. My daughter is HFI and I just use regular white flour. I'm not familar with what is gluten free or not.
Maybe some of the others may be able to help you out, though.
Tammy

[CK]

Hi,

I also have Celiac disease. I am still trying to figure out what flours are safe to eat. It is a bit trickier since we have to mix so many starches together to make something work, that it is hard to see what is causing the trouble. So far I have been fine with white rice flour, potato flour, and potato starch, and I believe that arrowroot has been ok as well. I have been having trouble with amaranth, buckwheat, and montina flour. I still am seeing how the tapioca and maniac starch are doing. I have been having a terrible time making any baked good work with our starches/flours and dextrose. I have had to throw out a lot of food. The squirrels wouldn't even touch it. They turn out very pasty even if you cook them a long time. If you come up with anything that works, I would love to try it. I basically have given up eating bread, cookies, etc. just because it turns out so bad.

I also have troubles with lactose, but do fine with Goat milk and goat cheese and butter. So I use those.

Have you found any cereals that we can eat? I am having trouble finding cereals since many use fruit juice to sweeten or corn meal and such.

[zueban]

I too have been having trouble with the same flours. And I am also lactose intolerant. Though after seeing your post I bought some goat cheese, so far so good. I have been making rice, potato starch and a little bit of tapioca muffins (from one of Bette Hagman's cookbook). I use dextrose and cranberries. They are fine. Well I have gotten used to them let's say. I have also made the choc. chip cookies on the back of Bob Red Mills white rice package, but I used unsweetened carob chips, YUCK! So yes, I am struggling too. I think I may purchase a cheap tortilla machine and make while rice tortillas for my bread for awhile. I'll post if if I actually bake something else edible!! Also, do you know much about beans, which ones have fructose? This has definitely confused me.
-suzi