HELP

[sunshine]

I am a 27 year old female and I've struggled with severe reactive hypoglycemic episodes since I was a child. I've noticed that when I eat a meal with carbs, or any sugar it's so bad after. Candy/fruit makes me feel as if I'm going to pass out so I don't really crave it anymore. I've been to the Doctor before and she brushed it off as if i wasn't eating enough protein and did an allergy  test on me! Of course it came back negative!My symptoms are getting worse as I get older and I'm having severe muscle twitches now. I recently did a genetic DNA test just for fun and to my shock it alerted me that I'm a carrier/high risk for HFI so I decided to Google it. When I saw the results, I knew I had it. The last time I drank a glass of juice I had a severe hypoglycemic attack afterwards meanwhile everyone else that drank the same amount was fine. Is it possible to go undiagnosed this long?! I mean I'm 27 and I've never been able to figure out what was wrong, my brother has the same issue too. Thoughts, insights? Is it possible I have it since my test says I'm a high risk carrier? What should I do? How do I fix it? I'm confused because on Google it says babies have it? Why wasn't I diagnosed if that's what it is? Thank you!

[jenn123]

My child was not diagnosed until 9 years old. They finally tested for it after i found it on google and requested the test be done. We had had a liver biopsy and a laundry list of tests. Just never this one. She had self regulated her diet and as a baby i breastfed her, so she flew under the radar. In fact, her numbers were so good from self regulating that they were entertaining releasing her as a patient. So i think it may be possible. Which DNA test did you take ?

[colormist]

I didn't start to really research why I was feeling they way I did after eating certain foods until my coworker said I was crazy for eating pixy stix like an addict but getting nauseated being around cupcakes. I was in my mid-20's, too. I really think that's when a lot of undiagnosed HFIers might finally start down the path of discovery. They start exploring new foods, cooking for themselves, and buying their own groceries. Patterns emerge and they wonder "is this normal? I wonder if there might be some underlying cause..."

Of course some kids a diagnosed by their parents and some adults go well into their middle years before finding out what they have. I wouldn't be surprised if others lived long lives just being a "picky eater" and never discovered their diagnosis!

My brother also has the same symptoms. I got a diagnosis and he just assumes he has the same thing due to our diets being exactly the same.

You should probably get and official diagnosis on your medical record. Ask your primary care physician to a referral to a geneticist (or someone who can test you for Hereditary Fructose Intolerance). You might have to be really confident and staunch. Insist that this is what you have. It's likely you'll get pushback along the lines of "that's really uncommon. You probably don't have that." Do not let them test you for anything else without ruling out HFI first. Mention hypoglycemia frequently (they get concerned about that).

The sad news is that you don't "fix it". If you have HFI, your liver CANNOT process most sugars and sugars will slowly poison/damage your liver until horrible things happen. The good news is, if you stop eating fructose (and other similar sugars) then your liver will heal, you'll feel 100X better, and be able to live a relatively normal life (outside of being neurotic about food).

Let us know if you have any questions about the diet, but you should be able to find a lot of the answers by reading the board.

[sunshine]

I remember having issues as young as third grade and it's getting worse as I get older. It just caught my interest that I've been having all these symptoms. I am not a diabetic or anything like that, then I test as a high risk carrier on my genetic test (which was unexpected.) and my symptoms match. Every article I'm reading says people realize when their babies are little. Maybe those are more severe cases? It's getting more intense though. I ate four life saver candies the other day and felt like I was going to pass out. I hate that doctors have that mindset, well it might be RARE but I just tested positive as a carrier and perhaps their disregard of me having HFI is WHY I'm going undiagnosed for so long. 

[colormist]

I was told by my geneticist when I went in for an HFI screening that "well, if you did have HFI, you would have died as a baby". He ate his words when the test results came back positive.

Also note: Not dead yet!

Have you tried the elimination diet yet? Or even the HFI diet in general? I made a pinterest board of the diet (and recipe options) a while back. It might be helpful:

[sunshine]

I've tried eating a very low sugar/carb diet and it's worked very well for me! Another reason why I think it's plausible. I know they say it's rare but 1/20,000 isn't super rare.

[tipper]

Hi Sunshine. I'm 34 and waiting on a genetic test to come back from a doctor in the genetic diseases department in my local hospital. I've been feeling ill all my life, and was finally referred to a specialist because my fasting blood sugar was rising (fun fact I found on the internet; persistent hypoglycemia can apparently create this effect). The doctors are trying to rule out a carbohydrate metabolism disorder, but they don't know which one. I have also always had what I was told was reactive hypoglycemia, and have been on a ketogenic diet for years to manage it. Although I don't have a diagnosis (and am super open to something else being the cause of my problems) every day I begin to become a little more convinced that this is what I have because the symptoms make sense to me, and it's the first time I've found a generally reliable way of managing my health. I have also been really confused on how I could go this long without being diagnosed, but after looking at everything from the information on this forum, to peer reviewed journals, I've started deciding that it is possible, even if unlikely, to make it this far before some disorders really start to interfere with your body enough to cause very serious medical problems. My grandmother was diagnosed with late onset adult diabetes in her early 20's, but could never find a way to not feel ill all the time, even though she weighed all of her food and was incredibly stringent with her diet. I've wondered if she in fact had a different form of metabolism disorder than what she was diagnosed with, and that I possibly got it as well. She died in her early 60's from organ failure, but she did (at the very least) make it that long before her body completely gave out.

[sunshine]

I think it's easy for Doctors to do obvious testing then when it's inconclusive they brush it off as though you eat poorly. How come a person with reactive hypoglycemia can eat the same meals as a normal person and almost pass out later. Sugar isn't supposed to make people feel THAT bad. On a good day I experience hypogylcemia once a day and on a bad day it's 3-4 times. I'm not diabetic and have no allergies. I don't get stomach aches when I eat sugar though. I just have blood sugar crashes and get very flush sometimes in the face. I've gotten catatonic before while experiencing severe muscle twitches for several mintues (trance like state.) I've become unresponsive, then I've snapped out of it several mintues later and eaten. My husband doesn't know that I've done this, it's fairly new as I didn't used to do this. This happened to me after drinking half a Sprite. That'd be a more severe case but I'm used to being weak, sweaty, very irritable and shaking when I'm having a crash. Has anyone been diagnosed with HFI and not experienced stomach pain, because I just get the muscle twitches and low BS. I've noticed that I usually have to pee really bad when I'm having severe hypogylcemia (kidney related?) since I'm a confirmed carrier of HFI it makes sense if have it, perhaps it's something else but I don't know. Some people get symptoms of cancer in early stages and some in later stages so it's not unreasonable for other conditions to have lesser and more severe results too. I just know mine is getting worse as I get older. I'm sure when I tell the Doctor she'll tell me I'm nuts and it's an allergy or some stupid thing. Luckily the low carb/low sugar diet works well so even without their agreement in a diagnoses I could self treat it if I had to.

[colormist]

So the thing with the stomach pain/nausea. I think HFIers tend to get acclimated to the nausea and then we just don't get nauseated as often if we're constantly exposing ourselves to fructose. You notice it more when you do an elimination diet and then go back and try to eat something you previously did.

Have you noticed your urine being dark colored or smelling sweet after eating sugars? My husband always says "your pee stinks". This is the case of the kidneys flushing out the fructose-1 phosphate from our bloodstream/liver. And yeah, definitely have to pee. Sometimes with kidney pain. It also feels "hot" or inflamed, like the bladder is having some issues.

[tipper]

sunshine . dude. your symptoms are so.familiar.

colormist. I definitely have these bladder symptoms. I'm starting to wonder if (you, know, if this HFI theory works out to be true) the additional symptoms I'm experiencing are the result of having fructose in my diet for so long and putting significant amounts of strain on my organs. Does it get better? Do people really recover after 6 months or so? I'm still having problems reintroducing any vegetables into my diet (like, I'm getting reactions from 1/4 cup of alfalfa sprouts). I feel like at one point I was doing ok - but this was after months and months of being on a ketogenic diet (which I went off of this year, and would have been getting lots of fructose on a daily basis). Do you regain 'fructose processing capacity' (for lack of a better term) in your liver? Is there an autoimmune connection with all of this, similar to Type 1 diabetes?   

[sunshine]

Colormist and Tipper mine is usually almost clear (but I drink tons of water) mine actually has a somewhat acidic smell to it at times. I have had stronger smelling urine for the past 7 years or so. I don't know that it is a sweet smell, sometimes it's odd smell just very strong. This is going to sound weird but sometimes the thing I could compare it to is a buttery smell sometimes mixed with acid? Does that even make sense?! LOL

Unlike anything I can compare it to. It is interesting to see that I am not the only one experiencing this as now you both are saying similar things along with what I am experiencing. I am thinking that the body tries to pee out the toxic "sugar" or fructose then I crash. Sometimes my urine is darker but usually that is when I have not gone for a while. Sometimes after I pee I am like "Does my pee smell strong?" "Are the people going after me going to notice?" LOL It's not like a terrible smell just very odd. 

[colormist]

Jan 19, 2018 12:05:08 GMT -5 tipper said:

colormist. I definitely have these bladder symptoms. I'm starting to wonder if (you, know, if this HFI theory works out to be true) the additional symptoms I'm experiencing are the result of having fructose in my diet for so long and putting significant amounts of strain on my organs. Does it get better? Do people really recover after 6 months or so? I'm still having problems reintroducing any vegetables into my diet (like, I'm getting reactions from 1/4 cup of alfalfa sprouts). I feel like at one point I was doing ok - but this was after months and months of being on a ketogenic diet (which I went off of this year, and would have been getting lots of fructose on a daily basis). Do you regain 'fructose processing capacity' (for lack of a better term) in your liver? Is there an autoimmune connection with all of this, similar to Type 1 diabetes?   

Yes, it gets better. You can't ever eat anything with fructose in it, but outside of that limitation it does get better. We do have some issues exercising, so losing weight is frustrating and complicated.

So many people on here have posted about how they or their family member had a complete change in lifestyle (for the better) once going on a fructose-free diet.

All vegetables and fruits have fructose in them. Some of us sneak a half serving of tolerated veggies a couple times a week into our diets (because it's boring eating solid beige food all the time), but we still have to recover from that fructose.

You never "regain fructose processing capacity" because people with HFI literally do not have the capacity to process fructose. Zero capacity. HFIers are missing the enzyme from their liver that processes fructose. The enzyme is just not there at all. And outside of getting a new liver, there's no way for them to process fructose right now. As far as I can tell, every bit of fructose I eat is eventually flushed out through my urine. That can be painful, particularly if I've accidentally ate a few grams of fructose.

There is currently no treatment for HFI aside from an extremely strict diet.