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I asked about oils last night before I had a tumbler account. This morning I’m wondering if you’ve experimented with fermented vegetables? Would that remove enough of the sugar for your body to be able to process it?

I have not personally tried fermented vegetables. I personally wouldn’t trust the fermenting process to remove all the sugar. 

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I’m about 98% positive my baby has HFI. Eliminating all the triggers from his diet, currently, as i’ve just recently started piecing his symptoms together. thank you so much for your work here. It’s been so helpful. I make his formula, so i have been able to completely avoid any sugar other than lactose. My question is, i have a choice between olive oil and sunflower seed oil as part of the formula. Are either of those safe?

I think Olive Oil would be the safer of the two--particularly for a baby. 

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Hi there! very new to this, and am wondering why lactose free milk and dairy aren’t options for HFI? I appreciate your help! Katie

I am able to drink fairlife milk without any issue. I haven't tried other brands, but I would assume if they do not have any added sweeteners, then they should be okay

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More dangerous information and I’m unable to contact the author. I think this might be a sponsored post by the manufacturers of the hydrogen breath test. 

In short, if you suspect you might have HFI, please do NOT take the hydrogen breath test. It is dangerous for people with HFI and you might end up hospitalized or worse.

They hydrogen breath test is safe for people with Fructose Malabsorption (FM), but absolutely rule out HFI before checking for FM

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MyHeritage DNA now tests for HFI! Not sure how thorough the screening is, but it might be an option for those who are having difficulty getting screened.

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Hello. I don't have a diagnosis of HFI yet. I'm 44 years old and doctors just refuse to give me the test. I'm working on having it done privately. In any case, I'm looking for things I can eat. Aside from regular wheat (non wholemeal), can we eat other varieties such as spelt and kamut? I had some sourdough spelt bread the other day and thought it was quite sweet compared to regular sourdough. Any ideas? Thank you so much for your wonderful site. It has helped me immensely.

Oh man, I wish I could help. I have never delved very far into flour types before (aside from avoiding whole grain). I’m not sure what to tell you other than “go with your gut” (literally). If it tastes sweet to you and you don’t feel 100% after eating it, then it might be safest to avoid it.  Good luck on your journey toward diagnosis. It’s not an easy path, but it helps to have doctors that will (at the very least) humor you. 

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Is it possible to have HFI symptoms with only one variant of the ALDOB gene? I am 33 years old with some peculiar symptoms, including an enlarged, painful liver (with slightly elevated liver enzymes) periodic profound fatigue, among other issues.

It’s not possible to have HFI symptoms with one gene--as far as I know. It is, however, possible to have one documented variant of the gene and one undocumented variant. They have only documented a portion of the HFI genes. For those with undocumented genes, they would need to have a liver biopsy to confirm the diagnosis.  Have you tried going on a strict HFI diet for a few weeks? If your symptoms abate (and you keep a food diary with symptoms noted) this information would be very helpful to a doctor to help you toward a diagnosis. 

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Hi, I'd love to know what you think... Within about ten minutes of eating fruit (ie one raspberry), I have strong fatigue and brain fog/confusion. I often have episodes of hypoglycemic symptoms (shaking, cold sweats, slurred speech etc), even when not eating fruit, which sometimes have sent me to the ER, but my blood sugar levels are fine. I get fatigue/brain fog from caffeine, alochol, soda, juice. On the other hand, I used to eat a lot of fruit as a kid and never puked. Thoughts? Thanks!!

I’ve also had “fine” blood sugar levels after eating unsafe foods, but my liver labs would report back off the charts. On the beginning of a hypoglycemic episode while at the doctor’s office, I showed her my shaking hand. She had my bloodwork ran and my sugar levels came back in a normal range (in the 70s). I guess, just because your liver is hoarding the glucose doesn’t mean your brain can function properly? I mean the blood sugar is still in your system, it’s just in the not-as-helpful part of the system.  But again, I’m not a doctor or a scientist, but it’s the only thing I can think of that might explain what’s happening.  I rarely puked as a child--unless I was in a vehicle. I recall being nauseated a LOT, but I had a pretty good constitution. I didn’t even seek out my diagnosis until I was in my 20s. Nobody thought anything was wrong with me. They just thought I was a “picky eater” and “didn’t like sweets”.

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Hi just came across your blog. I am a female in my forties. All of my life I have had digestive problems, however, the test for celiac came back negative. Even as a child I had a bloated, distended stomach; pain and gas. I have always been embarrassed by it, even as a little girl. I also have been diagnosed with idiopathic reactive hypoglycemia. The fructose containing syrup they gave me for the test made me feel as if I was going to die. I suspect not just fructose malabsorption but HFI.

People with HFI can test false-positive for Fructose Malabsorption. The oral test is also particularly dangerous for people with HFI as it can cause them to fall into a coma from severely low blood sugar levels. It’s really very dangerous. If you can meet with your doctor and ask to get screened for HFI, it might not be a bad idea, however your symptoms/reaction sounds more like Fructose Malabsorption than HFI. I am definitely not a doctor, though, so it’s best to go through proper channels for these things and not go on a diagnosis from a blogger on tumblr. ;)

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Thank you so much for taking the time to write this blog. It’s been very helpful! I’m wondering if you know of any doctors or biochemists who specialize in HFI? Also, do you have a reliable source for nutritional information (sugar content) on unprocessed foods (veggies, grains) that you could share? I’m interested to know if varieties of certain plants have lower fructose content. (Searching for a heirloom tomato with no fructose that I can grow hordes of in my garden- ha ha).

Dr. Tolan is the only doctor I know that specializes in HFI. A few HFIers have reached out to him and have received a response, but I imagine he is very busy.  This is doctor Tolan’s website with Boston University: http://www.bu.edu/aldolase/HFI/hfitest/hfitest.html The best resource I have found for sugars found in various foods is the CSID website: https://www.csidcares.org/csidcares-sitemap/

Click on the “Food Composition” links to search that particular database for the food you’re looking for.  I’m, sadly, not sure you’ll find a tomato without fructose. It is technically a fruit. :(

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Hello! I’ve been wondering if consuming small amounts of some vegetables on the unsafe list have benefits that outweigh the risk. Ones which contain more glucose than fructose to reduce the hypoglycemic reaction? It’s difficult to supplement the multitude of phytonutrients found in veggies. How long does fructose-1-phosphate stay in the body before the kidneys flush it out? If it’s small enough amounts over a long enough time period, could the kidneys manage it with damaging them?

It is absolutely unsafe to consume small amounts of vegetables from the unsafe list. You will be damaging your liver. I have noted even the smallest slip on my part takes the better part of a week to recover from--and that’s one tainted meal in a week. I have to eat extremely clean for a solid week in order to feel better.  I honestly have no idea how long the fructose-1 phosphate stays in the body, but I do know how long I fight with hypoglycemia after eating contaminated food.  Even the safe/tolerated vegetables have bad sugars in them. It doesn’t matter how much glucose you eat, it will never offset the hypoglycemia you will experience from eating fructose--it only delays it. 

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I am so very confused with Products buying, can you tell me if Irish Butter Kerry Gold is Safe or wood it have hidden ingredients? thanks so much

I’ve never seen this particular product in my stores, so I can’t comment on its safety. However, if you mean this product: https://www.kerrygoldusa.com/products/salted-butter/ It looks like the ingredients that are listed are safe. 

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A new pizza joint opened up in my neck of the Appalachian woods. Blaze Pizza appears to have locations all over the US, so if you haven’t visited the restaurant yet, I have good news!

They have HFI-safe pizza, you guys! So, the first couple times I ate there, I tried to pick things that looked safe. Of course, I got sick because I didn’t look up the ingredients.  Here’s what you have to order: - gluten-free dough - white cream sauce or garlic pesto sauce (both of these have garlic in some amount--white cream has less than garlic pesto)

The rest of the ingredients are up to you, but avoid the meats. A quick look through all the ingredients shows sugar in all the meats (yes, even the chicken and pepperoni).  My go-to is spinach, basil, feta, mozzarella, mushrooms and black olives. 

Please note: the kalamata olives on the menu are not HFI-safe (even though they look really delicious).

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I decided to test out some very expensive lactose-free milk for my dairy-challenged HFIers out there. I really don’t know how you survive in this world without dairy, vegetables, whole grains, nuts, and fruits--but my hat is off to you.  There are a few parents with HFI babies who are also lactose intolerant. A lot of milk substitutes out there (almond milk, rice milk, soy milk, etc) are not HFI safe at all. (I tried soy milk in my coffee once and was projectile vomiting for a couple days.) Being parents of an HFI-baby is a complicated challenge, though. You have to rely on the information on labels (always horrible), what your doctor has told you is safe (I had one tell me he had no idea what I should and shouldn’t eat), or schmucks like me who are willing to guinea pig new foods on the market and let you know my reaction.

Well, let me tell you something. I tried the skim version of FairLife lactose free ultrafiltered milk and it tasted like chalk. It was not something that I would consider to “taste good” but it did not cause me to have an HFI-like reaction. In fact, I think this might be a good “drink this on an upset stomach” peptobismal substitute--that’s how chalky it taste. Of course, the 2% or Whole milk might taste significantly better.  The good news is, I think it’s okay to see how your kid does on it for a small trial run. Always check the ingredients, of course.  The other good news, is that this stuff is full of potassium and magnesium--both things that are difficult for HFIers to get out of their diet. It also has a lot of protein, so it could be a decent energy drink for any extracurricular activities. 

And it has a pretty long (fridge) shelf life, so it could last in your fridge for a month or longer. 

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Motion Sickness & HFI

I get car sick. I’ve had this since I can recall. My family was so used to me vomiting in the car that they’d make a joke of it and have supplies ready for me.  I have this theory that HFIers have excellent constitutions--particularly those of us who have gone decades without a diagnosis. However, tack on one extra nauseating thing in addition to our preexisting HFI-nausea, and you better have easy access to a trash can, toilet, or the great outdoors. Which is why I think HFIers might be more inclined to suffer from motion/car sickness than most--it’s just one more attack on our precarious constitution. Growing up in a rural community meant I had to ride the bus to and from school for hours every day. To while away the hours, I would read. I noticed this would occasionally make me feel sick to my stomach. That was when I came across an article about the probable cause of motion sickness: motion in your peripheral vision with a still image in front of you. Sitting in the back seat (staring at the seat in front of me, while things moved out the side window) or reading a book would cause nausea, but if I closed my eyes or put down the book, the nausea passed. I found that I could still read my book so long as I couldn’t see out any windows. 

On the HFI Forum, one parent was dealing with her own case of car sickness--sometimes even getting nauseated before the car trip began! The parent added curtains to the back passenger windows and removed the passenger headrest so the child could see outside from the back seat. The result was a three hour car ride without any emergency stops due to car sickness! 

I thought I’d share just in case any other parents were suffering with similar afflictions.

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This is literally the LAST thing a HFIer needs. Well, an allergy to meat closely behind a sucrose IV.