Feb 14, 2025
Where patients previously had to follow a strict diet devoid of fruit sugar, a new drug now offers hope for change.
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Where patients previously had to follow a strict diet devoid of fruit sugar, a new drug now offers hope for change.
This is happening today. I’m hoping it’s just low blood sugar, but it’s only happening with my right hand and not when my hand is at rest. Eating some safe food and taking it easy this morning. #hereditaryfructosrintolerance #hfi #fructosemia #hypoglycemia
*sigh* It's articles like this, that do not specify or distinguish between Hereditary Fructose Intolerance (HFI) or Dietary Fructose Intolerance (DFI, Fructose Malabsorption, FM) that make me frustrated and sad. From what I know, this is pretty sound advice for people with DFI, but the abbreviation from DFI to just Fructose Intolerance creates a grey area that can cause people with HFI to become confused and possibly lead them down a path to a serious medical issue.
HFI is not DFI. I actually prefer to call DFI by the less confusing name, Fructose Malabsorption to prevent confusing articles like this from making a bad HFI situation worse. The least they could do would be to distinguish between the two conditions.
Pain brings about a lapse in judgement
The following entry is kind of gross. You have been warned. I did my best to use non-descriptive language.
I've been having some issues with stomach pains over the past couple weeks. The pain would come on rather gradually and then end up so severe that I'd be laying on the floor panting and crying. I don't have health insurance right now (I will be insured starting in August) because I couldn't afford the monthly premiums ($800/month for one person) at my new job. I talked to my mom (a nurse) about my pains and she thought it might be gallstones. Her suggestion was to drink lemon juice. I did (albeit a very small amount) and the pains went away for a week.
On Thursday, the pain returned. I ended up on the floor in pain for about six hours. An hour in, in an attempt to remove my focus from the pain, my husband said, "just wait until August, then you can go to the doctor". The pain would move from my chest to my low back. It wasn't really staying in one place. (It ended up not being gallstones, thankfully.)
I drank a lot of lemon juice on Thursday. I'm not sure how much but I found out on Friday.
Thursday night I could barely sleep. I was still in a serious amount of pain. I couldn't get comfortable. I took painkillers and drank water.
Friday morning came and I was feeling pretty crappy. My urine was dark orange. I had barely ate anything on Thursday. I wasn't in the mood to each much of anything on Friday, but I needed something to get me through the day. I had a bowl of shredded wheat. Later I drank a coffee and had some oyster crackers. My urine stayed orange no matter how much water I drank.
It dawned on me in the morning what was causing my back pain. The dark urine was the big hint. I only ever have dark colored urine for one reason: ingestion of fructose.
Lemons are fruit. Even though they still have the smallest amount of fructose and are considered safe (in small quantities) for people with HFI, they still have fructose. I was drinking lemon concentrate yesterday. My pain did not start out being caused by fructose, but my situation definitely ended up being complicated by fructose.
I still wasn't feeling swell at 6pm on Friday. My low back (right where my kidneys are located) ached. I had a few more oyster crackers and drank more water.
At 10pm I decided I should get this over with. I went to the bathroom to empty my stomach.
It's amazing the amount of control I have over my stomach after being nauseated for 20 years of my life. Even salmonella can't bend my iron-walled stomach (it wants to, but I was not about to have an incident in an art gallery). I walked calmly to the bathroom, pulled my hair up, got situated.
I had no idea I had that much lemon juice in my stomach. I was glad I made the decision to deal with it, because my kidneys could not have handled that much fructose and I felt better almost immediately afterward. The pain went away, my stomach felt better, and I had more energy within 15 minutes. If I wasn't so damned stubborn, I could have felt much better a day earlier.
Also, lemon juice tastes surprisingly decent coming back up. I would highly recommend non-HFI people drink it if they're feeling queasy. It will make things significantly less disgusting.
Visiting my local bakery
I recently moved (again--I swear my parents instilled some nomadic tendencies in me as a child) and wanted to check out the local bakeries and groceries. It's a pretty small town, so the grocery was underwhelming. There were four aisles and (even though I'm incredibly short) I could easily see over the top of each aisle. They really didn't have anything I could eat, however, they did have a ridiculous amount of gravy. I'm still trying to ponder why any small town would require so much gravy in their grocery. Gravy is pretty easy to make, too, so why would you want the pre-made stuff when the homemade stuff tastes so much better? I'm pretty sure they had more gravy than you could ever find at Wal-Mart. It was just bizarre.
I wasn't expecting much from the local grocery (aside from hardly any fructose-free foods and ridiculously high prices), however I did have some hope for the local bakery. I thought for sure they'd have some fructose/sucrose-free bread.
I sauntered in one beautiful afternoon and asked to see their ingredients list for their salt-rising bread. That was given a bit of pushback, so I instead inquired as to whether or not their bread had any sugar, corn syrup, molasses, or honey in it.
Whenever I ask questions like these, I always seem to draw a crowd of service people. Three of them were discussing my question behind the counter, a fourth walked over to the bakers and had a secondary discussion. The fourth came back and said "for every 20 loaves there's a fourth a cup of sugar" (or something along those lines--to tell the truth I wasn't paying much attention as soon as she started quantifying the amount of sugar in the loaves, I decided that I couldn't have the bread).
I shook my head, "no, I'm sorry. I can't have it. Even the smallest amount of sugar hurts my liver." I always clutch my liver and make a pained face when I talk about HFI in public--as if that'll protect it.
The cashier then said, "Well we don't want that. You don't ever want to do anything to hurt your liver. That's not worth it."
I was a bit surprised by that response. I usually get the "oh, but it's just a little bit of sugar, that should be okay, right?"
The other cashier said, "My friend has that sugar-thing, too. It's awful."
I'm a bit curious as I've been hearing this kind of a response a bit more here recently. I'm pretty sure they're talking about the dietary/fructose malabsorption condition and not HFI, however it seems that word is getting out about sugar-related conditions. Hopefully this means it might be treated a bit more clearly on ingredients labels here soon.
Made some muffins the other day
I have these boxes and boxes of Jiffy Mix. I can't eat them (due to the sugar content), but I like to make treats for my husband every now and again. I'm a pretty awesome savory chef, so I got it into my head that these Jiffy Mix muffins would taste even BETTER with real fruit in them.
I went out and bought some blackberries, smashed them up, and added them to the pre-sweetened muffin mix. The muffins came out of the oven looking mouth-wateringly delicious and smelled slightly sweet. I really wish I could eat berries, but I can't. Those muffins would definitely be one thing I would make if I didn't have HFI.
They were still piping hot and gooey-looking, so I took a small muffin to my husband and demanded he try them. He took one bite, "these are awful. They're not sweet at all. The berries are sour and bitter." I just kept standing there and he took another bite out of guilt, made another face of dislike. He had one last bite before handing the last bit to the dog. The dog really, really liked them.
I tried to find some sugar in my home to crust on the top of the muffins, but my home is a sugar-free zone. There might be some splenda packets somewhere (that my husband uses in his coffee), but that wouldn't be enough to save those muffins. I also wasn't about to go out and buy a 5lb bag of sugar just to use a couple spoonfuls.
I ended up throwing out the muffins. It would probably be wise to save the sweets-making to someone that can actually eat them.
Livestrong Updates Article; Gets Almost Everything Wrong
http://www.livestrong.com/article/287972-hereditary-fructose-intolerance-symptoms/
I am completely and totally happy with this article. We've had some issues with past articles posted to Livestrong about HFI, but this one is perfect! --- Update 2015 --- Sometime between me posting how wonderful this article was and today, Livestrong updated the article to include a metric-sthitton of inaccurate information. I can’t even right now.
After skimming the article, a few reminders: - There is fructose in all nuts. - The medical community has set the upper limit for daily fructose intake for an adult male at 100mg (total--in a day). - There is fructose in all vegetables.
It would seem they updated this article to be more relevant to more frequent intolerances. It now seems to be geared toward Fructose Malabsorption and Lactose Intolerance and no longer applies to people with Hereditary Fructose Intolerance.
Dentist Visits
I hadn't been to the dentist in about two years. I last went to the dentist immediately after losing my job (before I lost my benefits) and due to rough job market in the states, finding a new dentist in my region, and the length of wait for an appointment made, I was very concerned that I would develop at least a couple new cavities.
I don't have a very rigorous dental routine. I brush once when I wake up and once before I go to bed. I have to wear a bite splint because I'm a horrible grinder while I sleep and I was flattening out my teeth, so I wear that every night. I floss every few days--more often if I notice bleeding. That's about it. I use a toothpaste that has safe sweeteners (or no sweeteners) and I don't really use mouthwash (because they all seem to use unsafe sweeteners).
When I went to the dentist, I was expecting bad news. One side of my mouth was getting a bit sensitive and that usually meant a new cavity. I filled out the new patient paperwork and looked at the "medical condition" section. I was waffling on whether or not to write "hereditary fructose intolerance". Did they need to know? Was it really important? I had already wrote that I had an allergy to fructose, sucrose, and sorbitol in the allergy section.
I decided then and there that it was my job to inform people of this condition. The reason it's so unheard of is because people that have the condition don't talk about it (or, frankly, we get tired of talking about it), but maybe if I brought it up around other medical professionals, then awareness of the condition would spread. Instead of doctors saying, "you couldn't have that condition. You would have died as a baby," they would say, "it's not a common condition, but let's test for it just to rule it out and be safe."
The first thing my hygienist said was how nice my teeth were and that they were in really, really good shape. She couldn't believe I hadn't been to the dentist in two years and that I didn't floss every day. I informed her that it was probably because I couldn't eat any sugar, fruit, or sweets. This, of course, started the flurry of questions about what I could eat and what my diet consisted of and whether or not I took supplements.
It is my experience that dentists and dental hygienists love people with fructose intolerance (so long as we have some diligence with daily hygiene). As a child, I was usually lauded for not eating sweets and my parents were told how lucky they were.
I guess that's one of the lifetime benefits of having HFI: not really too much to worry about when we visit the dentist.