What are your staple meals?

[rachael]

Hello! My son (he'll be 2 in August) was just diagnosed with HFI last week. I enjoy cooking but am at a loss as to what to do without my garlic, onions, and tomatoes. I am going to start cooking a lot with shallots! Everything seems so bland now, but i know that's just because I'm new to this and I'm sure I'll learn some tricks with time.

Can you tell me about your favorite meals to make, or, resources for recipes? In particular, I'd love to find sugar free chili and pizza recipes. 

Thank you! This board is the only resource I've found so far and it's really helpful!

[rysmom14]

Hi Rachael!

This board has been life changing for me when my son was diagnosed. Since the condition is so rare, there are not too many specialist that have worked with it before. on the board you are asking people who live with it every day, either as a parent/ grandparent of someone with HFI or if they have HFI themselves.

The best piece of advice I can pass on, if what I head from this board when I first joined. Try not to worry about finding variety, just find what is safe. especially since our kids are so little and can’t really express how they feel, it's better to be on the safe side and have less trial and error. They will always be time to experiment later on. The hardest part is finding a diagnosis. It is by no means easy, but it will get easier. Packing food for when you go places will become second nature, and you will have a list of “go to” meals while you are out.

Here are a list of things that I have for my son. He is 2 years and 4 months. I have to admit that most of the time I make him and his sister( who doesn’t have HFI) their own dinner because we seem to eat in shifts because of the way my husband and I work, but below are some things that he really likes.

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)


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)
-Tuna is apparently ok, but I haven’t found one yet that dosent have vegetable broth.
-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 free 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


Hope this list is helpful. Colormist has a page on pintrest that is really helpful too. I hope she chimes in and attaches her link. There is also a list of sugars to avoid that someone on here had once before and I use it as a refference. If you message me your email, I would be happy to send it to you

Rysmom14

[colormist]

As requested! Here is my link to my Pinterest board:

Are Shallots the same thing as green onions/chives? I eat chives in extreme moderation and usually only under duress. I'm not sure if shallots are safe (as most things in the produce section are not safe).

I love Pirate's Booty sooo much. That and Annie's Mac & Cheese. It's been my new go-to meal when I'm feeling not like spending an hour cooking dinner.

[rachael]

Rysmom: I have the BU list of sugars, is that the one you have?

I found Colormist's Toddler Pintrest board last week, it was my bible grocery shopping over the weekend! I was bummed that we couldn't find Pepe's at our nearby Walmarts but thankful that I finally found Purely Os at Whole Foods (and bonus, it was on sale!). Our cabinet was already full of Annie's mac and cheese and cheddar bunnies, thank goodness I don't have to throw away all of his food.

Shallots are like an onion garlic hybrid. They were on the safe list that we were given, but the nutritionist didn't seem all that knowledgeable so maybe they aren't actually safe?

I thought NO corn products were safe so Pirates Booty was off limits, but it sounds like you've found it to be safe?

[rysmom14]

Hi Rachael,

The list I have was from a member on the board.  I have attached it for you.  I hope you are able to open it.  I think I follow Colormist's regular HFI link on Pintrest, I never saw the todler one?  I will have to look. the list shows a little bit of the difference in corn products, but the Pirates booty is safe.  I know a couple others who likes that as well. 

I dont know about the shallots, I am thinking they are not safe.  If it's in the onion family, I would avoid since onions are not safe. 

I have found that my nutionalist was not helpful at all!  I used to cut lables from all the food I was giving my son and bring it to his appointments forteh nutrionalist to look over and she would always say " these look good to me" but I think she was only really looking for the obvious sugars, or fruit.  Some things that we used to give him in the beginning we have cut out because the more we know and try, the better we are getting at seeing a reaction.  My thought is that since HFI is so rare, the Dr. and dieticians don't spend as much time being well versed on the topic, becase they aren't going to run across many patietns with it.  It would make more sense to know more about the conditions that are affecting more people.  when my son was diagnosed, Childrens's hospital of Pittsburgh had only 3 other people ever with this known diagnosis. And I think currently, my son and one other patient are the only ones being followed right now. 

Attachments:

Which Sugars to Avoid with HFI.docx (21.18 KB)

[rachael]

rysmom14: I didn't have that list, thank you for sharing! I have so many lists and they all seem to contradict each other. If it was just me it wouldn't be a big deal but we are just starting to "detox" my son of sugar so I can't tell what he is and isn't reacting to. His hospital also only has three patients with HFI!

[colormist]

LOL! I was also like "I have a Pinterest HFI board for toddlers? I remember thinking about doing that but I didn't think I made one..."

Apparently I did make one!

[rachael]

Not only did you make one, but it saved me in my first hours of finding out and feeling so overwhelmed! I love the idea of using pintrist and am using it to track what to buy at which stores.

[tummyache]

I make little egg/veggie/bacon or sausage Frittata Muffins in those wee bitty pans and freeze them in a zip lock bag. They are great for travel, for a quick grab for breakfast on-the-run, and just the right size for little folks snacking. You can add or omit anything to recipes you find on the internet...just make them in a muffin pan instead of on a griddle.

[oneladyff]

Trying to decide if the list of foods on Pinterest is for fructose intolerance or HFI. I hear you talk about pasta being safe. I see that you have cream of wheat and rice on the list. Are they considered fructose free?

[ukbill]

OK Looking at the list Colormist has put up there are a few items I would avoid. Sliced green beans are too sweet for me for a start tinned or fresh and anything caramelised is a no-no as caramel is made out of sugar.

It is best avoiding all added sugars if at all posible its very important for the long term health and safety of a child that they be allowed to dislike the taste of sweet foods. This will save you many many bad days when your child is off at school or around at friends.

It also has a lot of implications for the adult HFI'er also allowing an easier life where the very low levels of sugar can be detected by the HFi person before eating enough to make you ill.

Many sugars that are listed as safe are not safe. Glucose for example is unsafe. This is because of both contamination and the fact that legally Glucose can be sold as 100% pure glucose while being actually 40% "other sugars"

The food industry has negotiated all sorts of "deals" with Governments regarding food adulteration. "brined meats" are a good example. IF meat is "Brined" that means it has more than 10% added water pumped into the meat. Usually with added Polyphosphates (to stop the water running out) and sugars to make the meat taste of anything with maybe 20+% added water.

In Sausages they include all sorts of meat both precooked and "fresh" when I say "fresh" you need to understand that can mean one hell of a lot of things you or I would not consider as "fresh" including pre Frozen and re thawed and dried and rehydrated meat "products".

It really is a disgrace what is allowed to be sold as "food".

Lactose (from milk) is usually safe but buying it as a product to add to foods is a bit counter productive and also can lead to problems with adulteration or contamination.

We have found that Dextrose is far safer than Glucose.. but why we are not sure. <amy food snow list "Dextrose" as an added ingredient instead of Glucose or sugar.. however we can still get "reactions" to the foods indicating that indeed it was Sugar (sucrose) not Dextrose that was added.

There is also the issue of digestible fibre. This digests int he gut into Sucrose leading to bloat, gas and IBS type symptoms along with a general feeling of being "below par" or just not good today.

So anyone over the age of 2 (but discuss with a medical practitioner ) Psyllium husks (not ground powder) is a safe addition to our diet that stops the se-sawing constipation / runny tum caused by a very low fiber diet.

Herbs and pure spices because they are used in very small amounts and flavour foods wonderfully and so their fructose load is so tiny as to be insignificant.

Hope this helps people?

Keep smiling

[ukbill]

Forget onions use chives as a replacement they are much lower in fructose I believe.

[colormist]

Dec 11, 2016 18:36:27 GMT -5 oneladyff said:

Trying to decide if the list of foods on Pinterest is for fructose intolerance or HFI. I hear you talk about pasta being safe. I see that you have cream of wheat and rice on the list. Are they considered fructose free?

Hi Oneladyff!
I made the pinterest lists specifically for people with Hereditary Fructose Intolerance. The problem with any plant based foods is that they are never completely fructose free, so there will still be teeny tiny amounts of fructose in anything that grows out of the ground. To have a fructose free meal, you would need to restrict yourself to meat and dairy--and even then you'll have problems with manufactured products including brine, broth, and other plumping agents. The pinterest board includes all foods that I (a person with diagnosed HFI) eat regularly without issue.

Bill,
The caramels were for a recipe for fructose-free caramels. I don't think I'd ever be able to convince myself to try them, but others might be more bold than I. I did make sure to clarify on all the postings about how to make the recipes safe for HFI, which includes only using medical grade glucose or dextrose. The US is very stringent on medical grade sugars. The store-bought products, however, are likely to be (at the very least) contaminated with other sugars.