In need of HFI help

[breerose55]

I just found out what has been causing all my stomach problems and it's HFI. I'm 26 and have been suffering my whole life with horrible stomach related health problems. I just figured out what it is and now I have tons of questions. I have read so many conflicting things on what we can and can't eat. So I need some help figuring it out. I seem to be really sensitive and have a very low tolerance for things. Even rice is bothering me but maybe that's a different issue. I want to know what are my safe vegetables and such. Can I have pickles? I don't seem to react to them. Avocados? Floral things like lavender and camomile? Mint? Is garlic really bad? I've heard from some places garlic and onions are fine and others say absolutely not. Can I have any chili peppers? Broccoli? Cauliflower? I just feel like from what I've read I have no options except like three vegetables and meat.

[rysmom14]

Hi Breerose55,

Welcome! Although the diet is challenging, half the battle is having a true diagnosis. The more you follow the diet, the better you will feel. I personally do not have HFI, but my 2 ½ year old son does. I have found this website to be my lifeline. I ran into the same problems that you are having at first about seeing conflicting information online, and because the condition is so rare, health care professionals are also somewhat stumped. I feel better talking with others who live the life either because they have HFI, or have a family member with it. You will still find that there are some slight variations, but for the most part it is very helpful.

From what I am gathering, different people seem to have different tolerance levels. If you think you are more on the sensitive side then you may want to stick to most of the “safe” food items and not veer off to the “tolerated” list very often. You mentioned that sometime even rice bothers you. Some rice actually have somewhat of a sugar coating on it, so you may find it more tolerable if you soak the rice first, and then dump that water and then cook with new water.

So on to veggies…. Unfortunately, there are not may veggies that you can have because most contain fructose. The ones that are ok are big white potatoes ( you may also want to soak them first like with the rice) can green beans, mushrooms, spinach and dark leafy greens with no stock. Cauliflower and broccoli have fructose in them so I would not eat them. Pickles are tricky. I think some people have found that they can eat pickles, but only certain brands, same thing goes with olives. I am not 100% on lavender and chamomile so hopefully someone else will be able to answer that one. Mint I think is ok. Just recently I have been looking for a toothpaste that doesn’t have sorbitol, and others have recommended brands that have mint. Onions are no. Garlic, I thing you can get away with some garlic powder in cooking, but not a whole lot. You will have to pay attention to how you feel with that.

As far as you options, you can eat just about any meat( as long as it does not have broth, or “added flavor or natural flavors, since sometimes that means sugar), also eggs fish are good.
you can eat dairy. So milk and yogurt (plain) and cheese.
You can eat from the grain group. Rice, Pasta (the regular semolina pasta, bread ( homemade or some store bought like certain sourdough) homemade waffles and pancakes, oatmeal

As you are changing your diet, just start out with only safe foods, and keep it very simple. Add new items slowly and one at a time and pay attention how you feel. Once you cut the sugar out of your diet, you should be able to notice a reaction when you have tried a new food. Keep a food log, and then start to create your own safe and tolerated list. Keep in mind that tolerated may still have low levels of fructose in there, but they do not cause a reaction, so you can have them some times, but the best way to mainly eat only food that fall on the safe list.

Here are some of my son’s go to foods. I hope this helps! Keep asking questions. My son has only been diagnosed for a year. It’s a learning process that is constantly changing.

Ryan’s HFI Safe Food List
Breakfast options:
Oatmeal with butter and cinnamon
eggs with cheese ( we add ham, turkey, mushrooms, spinach or sausage ( made with dextrose only) for some variety
Crumpets ( in the section with the eggs, it's clear package with green writing)
O's and milk ( Pure O's from Cascadian Farms)
Breakfast burrios
Pancakes- check the different mixes and make sure they do not have sugar. Great value from Walmart is safe because you are supposed to add the sugar.

Lunch and Dinner Options:
-Cheese Ham or turkey and Saltine crackers
-Butter Noodles
-turkey burgers
-chicken alfredo ( I found one of these packets that you mix with milk that is safe since most jar alfredos are not. Or you could make alfredo)
-White Pizza ( I use a crumpet and put olive oil and cheese and then sometimes some of the breakfast turkey on it. Colormist also found a safe pizza dough at Walmart I think)
-Chicken nuggets ( we have Aldi grocery store in PA and I buy their gluten free kind)if not then I think Tyson has a bag chicken nuggets. Also Heatherp on this board has a recipe for homemade chicken nuggets.
-French fries (we get them frozen. Ingredients only list dextrose.
-Can green beans, white beans and garbanzo beans (in moderation)
-Fish is good. We make tilapia and cook in butter and a little parsley.
-Big white potatoes are ok, you might want to soak them in water first a couple times before you use
-I found a cream of mushroom that I mix with ground turkey and noodles and cheese like a casserole
-Hebrew National hot dogs ( regular, not low sodium)
- Mac and cheese ( there are a couple different brands)
- McDonald’s chicken nuggets and fries are good when you are on the go
-sourdough bread or homemade white bread for sandwiches
- “Lasagna” I layer noodles and cheese and sometimes sausage or ground meat. Just no sauce.
- any kind of meat as long as it doesn’t have broth, water or natural flavoring added to it ( the super expensive kind basically!)
-quesadilla with sour cream on top ( I found a safe gluten free tortilla wrap and I use a bunch of different stuff inside)

Snacks:
-Plain yogurt. We also loosen with milk and call it a smoothie. Are going to try to freeze and make a yogurt pop this summer.
-popcorn ( pirates booty makes hull-less popcorn. So does Annie’s brand
- Plain Lays potato chips
- Snyder’s sourdough pretzels (only some kinds)
- home make cookies ( 1 cup flour and ½ stick butter, pinch of salt and enough water to hold together. I make quarter size cookies and bake for 20 minutes on 325. I sprinkle with a bit of cinnamon when they come out. Can make like a gob if you whip your own whip cream. YUM!!
- Pure O’s
-Cheese Its
-Cottage cheese

[colormist]

So, briefly, all vegetables have fructose in them. If your diet is nothing but "tolerated" vegetables, then the fructose will build up and you'll get sick (this also happens if you saturate your diet with one vegetable) so try to eat them sparingly.

Pickles can be okay and tolerated if they don't brine them in unsafe sugars or onions. Dill pickles are a favorite around here.

Avocados seem to be tolerated by adults. I have gotten sick off of them by over indulging and having avocados in everything for several days in a row. A half an avocado once a week should be okay. Stay away from those big green Florida avocados, though. Those are definitely not safe.

I haven't noticed a reaction with floral ingredients or mints.

Garlic can be used sparingly. If you make a big dish for several people with two cloves of garlic, you'll probably be okay. The same does not go for onions, though. I typically used chives (the green bits) in place of an onion.

I use chili powder with abandon and haven't had a reaction. Not sure about chili peppers though.

Some here eat broccoli tops (not the stems). I'm not sure about cauliflower, though. I know it has a substantial amount of fructose in it, so I just avoid it.

Rice should not be bothering you so long as it's white rice.

You should also be able to eat nearly everything in the dairy aisle, eggs, and all the starches your heart desires so long as they aren't whole wheat or brown rice starches.

Olives (of all kinds, but watch the brine ingredients), mushrooms, banana peppers, kale, spinach, tinned green beans (fresh ones taste sugary), romaine lettuce, arugula, white large (not new/baby) potatoes are all regular ingredients in my diet.

Generally speaking, your food should be white, beige, and dark green (with a few exceptions).

[hfimomof3]

Welcome. The first thing you need to do is find a source of vitamin C. You need to take Vitamin C daily. A multivitamin might also be fine (they usually contain C) but I have found I have to take my C separately, because the Calcium in my multivitamin inhibits the absorption of vitamin C. You can experiment with this a bit, but it should be a high priority.

Second, a healthy diet for you is going to look very different than the standard healthy diet. Colormist usually recommends the website "cronometer", and i have been there and I like it. It is a little daunting when you see them recommend tomatoes for vitamin A (tomatoes will probably be prohibited for you) or bananas for magnesium. But you will also discover that milk contains some vitamin A, so that is a big help. I have found that it can be hard to get enough protein, because I have to cook all my protein from scratch. I can eat beans but some people are not able to. That will impact your fiber intake. A typical day for me might be oatmeal with milk for breakfast; leftover beans and rice or a fried egg with a toasted tortilla for lunch; and chicken sauteed with garlic, scallions, and soy sauce for dinner, served with rice or pasta. I handle my vegetable intake as a separate thing. I have a small list of vegetables that I feel comfortable eating and I eat them when i feel like it's not going to push me over what my body can tolerate. For example, some days for lunch, I might make spaghetti with a bunch of chopped and sauteed cilantro (I use the whole bunch because even though cilantro is pretty pricey, it's my only vegetable for the day). I make my own bread from scratch, with no sugar at all (King Arthur Flour no-knead crusty white bread.) If I've been exposed to fructose somehow or I feel under the weather, I will skip all vegetables that day. That is why the multivitamin is important. When I explain my diet to doctors, their response is usually to shrug and say "just make sure you take your vitamin." It is not ideal but it's reality.

You may want to discuss with your doctor doing some basic kidney and liver blood tests, or even an ultrasound. That is what my doctor did for me (one ultrasound to establish baseline; kidney and liver blood tests yearly to make sure I don't develop liver or kidney damage). In the US these are part of the regular annual checkup (so I'm told) but it may be different where you live. I don't know if there are other possible things to test for someone who was diagnosed as an adult. You should probably talk to your doctor about that.

You may also want to wear a medical alert bracelet (I should, but I don't) that says that you are hereditary fructose intolerant (if you write "fructose intolerant" they will think you have fructose malabsorption, which is more common). When I go for procedures, I ask for a medic alert bracelet and i write: "hereditary fructose intolerance. NO fructose, NO sucrose, NO sorbitol." However, I have also been told by nurses when I had my first kid, that the standard drips, when they require sugar, use glucose (dextrose) and not sucrose. Not medical advice, just reporting my hearsay from life. Things for you to think about.

[rysmom14]

I second the sugestion to get a base line liver ultrasound and liver funtion tests. my son gets the labs every 6 months and we see his Doctors ( gastro and genetics) once a year now. we just have a phone call in between about the labs.