“Safe” foods questions

[meranda]

Hello everyone. As I said in a previous post, we are new to HFI. Our seven year old daughter has only been on an HFI diet for a little over two months now and she is doing better than she has since she was eight months old! The problem is all the contradictory information out there. It seems that, while looking for HFI information, most of the information for “fructose free” is actually reduced fructose and aimed more towards FM. This is where we are getting a bit confused. We do not have access to a dietician yet so have to figure this out in our own. Our daughter has been told to follow a strict HFI diet and she is also severely lactose intolerant. This creates challenges as extra sugar is often added to lactose free yogurts and such. We have had trouble finding lactose free AND fruit free yogurt (found plenty with gobs of fruit!), lactose free butter, dairy free margarine, etc. Lactose free milk is easy to find but is much more expensive. Dextrose powder has been readily available. We have been told to stay away from anything with wheat due to the fructans... is this an issue? We have avoided all pasta except homemade so as to avoid wheat as I cannot find ANY without wheat here (we are in southern Bavaria, Germany). One site says asparagus is fine while another says it’s not. One says coconut water is safe while another says it’s not. One says coconut milk for making curries is fine while another says it’s not. Everyone agrees no fresh onion or garlic but several sources say dehydrated onion and garlic are safe. Some say to stay away from oats and barley while others say they are fine. My head is spinning!

PLEASE HELP!!

[colormist]

White refined flour is not an issue for people with HFI, but whole wheat is an issue. Sounds like the advice you're being given is similar to the low-FODMAP diet--which is both not safe for HFI and not relevant to HFI.

Vegetables and fruits are best avoided until you get her diet under control.

I designed this a while ago: i.pinimg.com/originals/d7/f6/86/d7f68642d23676f0e9853fcd4d88eadb.png

I never got around to updating it, but white pasta means non-whole wheat pasta. Some people have reported more issues with green beans vs. wax beans. Wax beans do have less fructose than green beans, so if you wanted a try a vegetable, that one would be safest.

EDIT: The reason you're getting so much conflicting information is because nobody really knows how much fructose is in a thing and different cooking methods can change the amount of fructose in a food. It's really flipping complicated and annoying.

I do okay with a wee bit of garlic. I also don't notice a reaction to garlic powder, garlic salt, onion powder or onion salt.

The best advice I can give you is that HFIers (particularly children) don't really care for variety or changes in food routine. We can eat the same thing over and over and over again and rarely get tired of it. Bland food cut into interesting shapes will be more exciting for her than any variety.

[meranda]

I make the kids Bento Box lunches and she LOVES them! She absolutely loves rice. Are mushrooms typically okay? And white potato and cabbage? We have been told they are safe but I’d rather heard from someone actually dealing with HFI first. Lol. Unfortunately she does get very bored with bland food and the same thing over and over again. She hates fruit of all sorts but loves vegetables and is missing them, though she’s so happy to finally be healthy. We have never noticed issues with exercise in the past but she has always had complete control and stopped when she needed to. Now that she’s in school she is complaining about feeling very poorly after Sport class (P.E.). She describes symptoms of low blood sugar. Any suggestions? We cannot get Kool Aid mix here (unfortunately, I grew up on that stuff and even I miss it, lol). Dextrose is easy to get but I cannot send milk with her as it’s impossible to keep it chilled. I can get UHT milk but not in the lactose free.

[beetlebot]

Is she okay with maize products? I sometimes find plain corn chips are a good option when I'm feeling low on blood sugar. Or pretzels maybe? If she's really missing vegetables green leafy things are usually safe I think, mind you I'm just speaking from experience. Ive never had a problem with baby spinach leaves for example, so when I'm feeling really unwell I just throw some of those in a salad with some olive oil and I'm good to go.

[colormist]

White mushrooms are okay. I've noticed different types of sugars in different mushrooms (portobella are not safe), so it's best to look them up before trying them. I like this website for their sugar details: www.csidcares.org/treatment/food-composition-database/

Sugar free pretzels or corn chips in moderate amounts should be okay. I would think a protein would be better for her in the long run and help her maintain her blood sugar better. I really like Chomps: chomps.com

I also eat olives (green or black, so long as the ingredients read safe) and water crackers. I also like cheese, but I think you're doing a lactose-free version. I loved potato chips when I was a kid. She will also need lots of water.

[hfimomof3]

Hi. My experience has been that most of the internet advice for "fructose intolerance" is for fructose malabsorption (abbreviated FM, but also confusingly called Dietary Fructose Intolerance or DFI and some people just call it fructose intolerance because they don't seem to know that HFI exists). Dietary advice for people with Fructose Malabsorption is NOT SAFE for people with HFI. People with HFI must avoid sucrose, fructose, and sorbitol.

In terms of finding advice for people with HFI, ideally, you would have a nutritionist or dietitian who has specialist knowledge of how people with HFI need to eat. But in the absence of that, going through some of the older pages on this site will probably help, although you will have to sort through a lot of information. We are not doctors so what you'll find here is not advice but mainly our experiences. You can also try searching for one of the Facebook pages on HFI, those will likely be more active.

Some initial thoughts: one of your first tasks will be to find a safe multivitamin for your child, especially Vitamin C. This is because our diet lacks fruits and vegetables so we don't have a reliable dietary source of vitamin C. If you cannot find a safe vitamin source (especially vitamin C), let your doctor know and ask for some help finding one. This must be a top priority.

Does your child like white rice? We usually avoid whole grains, but I agree with colormist that white flour and white pasta (ie not whole wheat pasta) are fine for most people with HFI, but you must check with your doctor about these kinds of things, also bearing in mind that different varieties of grains may have different components (eg varieties grown in Europe may be a little different than those grown in the USA). I would not feed asparagus or coconut water at this time. I would also avoid dextrose, at least for now (dextrose will taste sweet which will interfere with her developing a feel for which foods she can tolerate, and also some of us are worried that commercial dextrose may be contaminated with fructose). Does your child tolerate eggs? How about chicken? Beef? Make a list of the things you want to try and get your doctor to go over them with you to make sure they are compatible with your child's problems.

Is your child's doctor doing any testing for liver enzymes, liver ultrasound, anything like that?

[tummyache]

In Germany sauerkraut should be great; Jewish ciabatta bread has no dairy, also traditional French bread is safe. Many Jewish meats should be safe from dairy as they do not mix the two -- meat/dairy. I like their crackers too, because they frequently do not contain dairy. As for a replacement for butter: I don't know what to recommend in Germany. Here in the USA, I buy Earth Balance Margarine (whipped, light yellow lid, only one without pea protein). I use either unsweetened rice or almond milk for cooking or to make cornstarch drinks for energy. For snacks I like meat sticks, pre-cooked chicken breast cubes (which I keep frozen in the freezer -- grab a few in zip-lock bag for a snack. They thaw out really quick!), raw veggies, lightly salted popcorn, corn or potato chips, (and some will argue with me here...which I carry in my purse all the time for when I feel hypo'ish) 4-5 nuts (walnuts, Brazils, Almonds). There are freeze-dried green beans at Whole Foods Market {$$$], and some other fancy stuff like that available too, if you read labels.

[meranda]

We have found a good margarine that works for us when we have meat meals so that’s covered. I’m wondering though... are most beans safe or not so much? I’m thinking things like kidney, navy, pinto, chickpeas, and lentils... I’ve had so much conflicting information and we cannot see the dietician for quite some time yet.

[meranda]

I agree with talking to the specialist before trying much but we don’t have that option right now. We cannot see the specialist or the dietician for some time yet (we don’t have one in our town and must travel to Munich, because we must go all the way to Munich we couldn’t get an earlier appointment and must wait) so we are in our own for now. Unfortunately Ingrid must still eat something while we wait, lol. I was, quite literally, told to “google it” while we wait 🙄.

She tolerates eggs fine but isn’t a big fan of them and won’t eat them often. She has no other issues that we know of. Just the HFI and lactose intolerance. We have been able to work around the lactose issue with a combination of lactose free and combining the lactose free with regular dairy (so she still gets the lactase). She likes white rice very much and it has been a staple of her diet since long before this diagnosis. Unfortunately she doesn’t particularly like meat. We have made it clear that she needs to get used to it and she’s trying but she doesn’t like it and every time she eats meat she ends up with tummy pain. Not nearly as severe as with fructose but still pain and she feels sick. We cannot have fish in the house as my husband is anaphylactic to it.

As for most “Jewish meats” it really depends on which meat. Of course we do not combine meat and dairy so anything kosher will be dairy free (we are an observant family and keep kosher) but all the processed kosher meats (pastrami, corned beef, wurst, etc.) contain sugar. When I make them at home I use dextrose and can control the amount and the purity but store bought is out of the question. Other than that it’s the same as any other. Beef is beef. Chicken is chicken. Lol.

We buy dextrose powder that is labelled as 100% dextrose. Thanks to EU laws we can be confident that what is labelled is what we are getting. We, as like nearly all of germany, use sage tea to treat almost all ailments. Hahaha. Cold? Chicken soup and sage tea. Flu? Same. Sore throat? Again. Lol. Sage tea can be somewhat bitter so we use a little dextrose to sweeten it and combat the bitterness. We certainly don’t use much or often. The other times we use the dextrose are for celebrations when everyone else has sweet treats and Ingrid would, otherwise, be left out. This seems especially important for school celebrations as we are STILL fighting them on food and the only way we can be certain they won’t give Ingrid anything is if we have sent her something. So I’ve made cupcakes and tarts for her with foods we KNOW are safe. Dextrose is not anywhere NEAR as sweet as table sugar and Ingrid is very happy with it as she gets a little bit of sweet treat but not sickly sweet. One of her classmates even commented that he can’t taste any sweetness at all (and this comes from a German kid!! These kids can’t handle eating American cakes and such because the level of sweetness makes them feel instantly sick, lol). She has never enjoyed sweet foods anyway but she likes a little hint sometimes.

It was a massive struggle to find a multivitamin that she can take! ALL the children’s vitamins contain sugar and “natural flavours” so they are out of the question. She’s too small for most adult vitamins (not particularly interested in overdosing her and making her sick again!) and the very few that would be safe to take every second day or so have sugar and or lactose in them. Oy vey! We FINALLY found one. The paediatrician and pharmacist worked together and finally managed to source one for us and it’s on a standing order. We are the only people in the surrounding twelve communities using it 😝. Thank goodness for a dedicated doctor and a dedicated pharmacist!

[colormist]

Beans are unsafe, but I'm not sure about lentils...

Looks like lentils canned or cooked from dry have 0.386 grams of sucrose per 1/2 cup. www.csidcares.org/food-vegetables/

That's pretty significant, IMHO. Definitely over the adult limit.

[meranda]

Thank you colormist. I didn’t think they were safe but thought I’d ask.