New to this, could I have HFI? Please help!

[jenni]

Hi there,

I am now 24 and have dealt with strange health issues for quite a long time and have been trying to figure out what is wrong with me. Doctors haven't been able to figure it out but they also haven't really done much testing at all either and really aren't very helpful. I noticed an issue with sugar and fruit at a young age, yet didn't really make the connection til later. When I was a child I didn't have any vomiting or extreme problems but I was very thin but we didn't have much fruit around the house to be honest and my mom never bought junk food, for fruit we just had apples and oranges here and there but I wasn't to keen on them.
At 13 I was told by a mentor that I should start eating healthy and that a raw vegan or mostly raw vegan diet was what humans were meant to be eating so I started eating loads of fruit and veggies. My health plummeted (however I already had very irregular periods), I lost a lot of weight, had extreme anxiety issues and hypoglycemic binging/starving... I became depressed and a completely different person, my parents just thought I was anorexic and I didn't know what was going on but was convinced this is what I was supposed to eat etc. after a while I finally gave that up after being sick and depressed and having anxiety and hypoglycemia and extreme weight loss.

I started eating other things but that also included sugars. I gained weight from eating other things but I would still have hypoglycemia and urges to binge whenever I had anything sweet or sugary or even certain veggies or nuts. This continued for a couple years until I just realized I had issues with sugar and fruits! I cut it all out and felt a lot better... I even told people that I was almost intolerant to sugar, even though I didn't know that was an actual thing.

After a couple years of this people around me thought I had an eating disorder again even though I felt so much better and looked so much better staying away from sweet things. Whenever I tried to eat fruit I would get anxious, depressed and hungry hypoglycemic all day and have the urge to binge to keep my blood sugar levels up. However I was pressured to add back in fruit and so,e sugar after a while because people told me I was paranoid and crazy. Ever since I added back fruit again my health has taken another turn for the worst.
Eventually I did find out about fructose malabsorption and thought that is what I must have, however even having regular sugar gives me issues as well as carrots and any nuts/peanuts and even the low fructose fruits. 
My question I guess is has anyone had a similar journey to mine where they have had issues with sugar and fruit but did not have fatal issues as a child? Could I possibly have  HFI? Low fodmap does help but if doesn't seem to be enough, however I don't have vomiting or liver disease, I have liver damage but no liver disease.
my symptoms are: bloating to the point of looking very pregnant, brain fog, mood swings, undigested stool (seeing everything), loose stools, depression, chronic fatigue, skin problems, memory issues, edema and weight gain/full body swelling from sugars/fruits/fodmaps... I can gain over 10 pounds in an hour... Hands feet legs face etc. hypoglycemia and extreme hunger/binging from sugars and fruit and nuts etc. 

My symptoms and swelling etc. reduce dramatically when I follow a diet for HFI. I had peanut butter (sugar free) last night and feel awful today... Bloating fatigue swelling and couldn't sleep last night. I have looked into salicylate intolerance as an alternative option to my issues however I can have black coffee no problem and olive oil is fine etc. which are super high in salicylates and should be problematic if that was my problem. 

I would be so grateful for feedback and help! Sorry this is sooooo long, I just wanted to give a proper history. Thanks so much!
Jenni

[jenni]

I should also mention that I have celiac and a possible cbs gene mutation so If I eat sulfurous foods that also causes a problem namely fatigue and skin breakouts.

[vetster02]

Hi. I have been dealing with many strange unidentifiable issues as well. Little by little I am piecing things together. I too gained an enormous amount of weight after being a size 2 110 lbs forever. I was bloated looked pregnant ( which I am not. I am a grandmother). I first started doingit gluten free. This helped with the pregnant look some still was heavy. I have connective tissue inflammatory problems depression issues have tested positive for fructose malabsorption and lactose intolerance. I would experiences I called my attacks. I will wake during the night, heart pounding run to the toilet. Sometimes diarrhea sometimes vomiting, sometimes both. I become somewhat out of it soaking wet with sweat and drop to the floor where it's cold and lay there until out passes. I learned thru a food diary and guidance from a holistic Dr low fodmap want enough. I looked up high fodmap. Much better. Every once in a while I have accidentally eaten something not knowing and bam it happens. My guess was that the fructose should into my bloodstream triggering a call for insulin putting me into an extreme hypoglecemic state. I haven't be able to figure out why at so guess I was around 48 when out started I'm now 55 out seemed tobe come out of no where.but they all my research I am going to try to get the Dr to test me for hfi. Muy granddaughter id's very over weight and liver enzymes off and liver biopsy showed she has fatty liver disease. This is all sounding like a puzzle coming together.

[vetster02]

Dec 6, 2015 22:40:24 GMT -5 vetster02 said:

Hi. I have been dealing with many strange unidentifiable issues as well. Little by little I am piecing things together. I too gained an enormous amount of weight after being a size 2 110 lbs forever. I was bloated looked pregnant ( which I am not. I am a grandmother). I first started doingit gluten free. This helped with the pregnant look some still was heavy. I have connective tissue inflammatory problems depression issues have tested positive for fructose malabsorption and lactose intolerance. I would experiences I called my attacks. I will wake during the night, heart pounding run to the toilet. Sometimes diarrhea sometimes vomiting, sometimes both. I become somewhat out of it soaking wet with sweat and drop to the floor where it's cold and lay there until out passes. I learned thru a food diary and guidance from a holistic Dr low fodmap want enough. I looked up high fodmap. Much better. Every once in a while I have accidentally eaten something not knowing and bam it happens. My guess was that the fructose should into my bloodstream triggering a call for insulin putting me into an extreme hypoglecemic state. I haven't be able to figure out why at so guess I was around 48 when out started I'm now 55 out seemed tobe come out of no where.but they all my research I am going to try to get the Dr to test me for hfi. My granddaughter is very over weight and liver enzymes off and liver biopsy showed she has fatty liver disease. This is all sounding like a puzzle coming together.

[jenni]

Thanks for your reply! So you are trying to figure this out as well? Sounds like you've had a rough time!! It's confusing... I've been told histamine, salicylates, oxalates, DFI, mast cell disorder etc. not none of that explains my fruit and sugar issues. Unless it IS salicylates and I can somehow still use olive oil which is high, and coffee which is high, but can't have sugar which is low. My doctor just did a stool reducing substance test for DFI/FM but nothing came of it. No sure how accurate that is for FM, I'm in canada and have been tOld we can't do hydrogen breath test for some reason. I hope to God I can figure this out soon. Thanks for sharing

[colormist]

Hi Jenni,
The hydrogen breath test is extremely dangerous if you suspect you have HFI. The test results will also read positive for FM if you have HFI--which is a false positive. If you can ask your doctor for the HFI genetic test, I would strongly encourage you to do so. Be sure to mention your hypoglycemia to your doctor. From what I hear, hypoglycemia is not common for people with FM and this might help convince your doctor to do the genetic test. If you have the funds (and an uncooperative doctor) you could always pay for the genetic HFI test yourself.

It sounds like you're trying to be vegan while trying to be fructose-free. The vegan diet and the HFI diet have very little in common (vegetable/olive oil, white flour, white rice, water, oatmeal, olives, and mushrooms) and it would be extremely unhealthy to try and maintain a vegan diet while on HFI. It might be possible to maintain a vegetarian diet (with some supplements), but would still present some major challenges.

Peer pressure is a HUGE problem with the HFI diet. Everyone and their uncle has an opinion on what people should and should not eat. You get it from all corners: media, teachers, babysitters, peers, family, friends, doctors, etc. After a while you just want to give in to the peer pressure and "eat healthy". It's mind over body at this point and your mind will lose (mainly because you get so hypoglycemic that you'll either binge eat or fall into a coma).

Hopefully Fred will chime in with some medical recommendations. I'm not sure where you're located in Canada, but he's run the gamut with the doctors in Canada and might be able to give you some medical hurdle advice.

[jenni]

Oh wow, thanks so much for your response! My doctor is so not helpful... She just wants to pass me off to someone else so tips for dealing with doctors in this process would be great. I don't have a really strong pitch for it though as I don't have some of the stereotypical symptoms of vomiting or comas and I didn't have any of those crazy symptoms as an infant. Hopefully they will do the test anyway, maybe I am one of those people with a different mutation still related to HFI but not as extreme? Do you think my full body swelling/water retention could be damaged kidneys? Also The last couple weeks I have had skin breakouts on my face, it's awful! I'm wondering if my liver is trying to detox now that I'm trying to be completely fructose free it can try and get rid of some of the toxins instead of freaking out all the time about the fructose I was eating. I'd like to think there was a positive reason for my pimple dilemma lol. Thanks again for sharing

[colormist]

The vomiting only occurs if you eat too much sugar accidentally. It's actually feels a lot like salmonella poisoning. The few times I've had salmonella poisoning in the past few years, I thought it was fructose! The thing about people with HFI is that we have excellent constitutions and avoid sweets naturally, so you're unlikely to vomit even if you feel nauseated. Be sure to let your doctor know if sweets make you feel nauseated.

My kidneys tend to ache if I ingest fructose (and don't vomit). They are sensitive to the touch. If you're worried about your kidneys and water retention, I would recommend talking to your doctor.

And acne can be caused by a number of things. I don't have too many breakouts and the ones that usually occur are because I haven't changed my pillowcase frequently enough or didn't wash my face properly. I'm not sure if the body can get rid of fructose through the pores.

[jenni]

Ok good to know. I actually feel like I want to throw up after some meals/certain foods but I usually don't. I have a really hard stomach and don't throw up easily... However nausea and throwing up isn't a huge theme In my life and my other symptoms were a lot more prominent so I might be on the wrong oath, but for now I'm doing better without fructose so I'll stick with that. However there is the kidney water retention swelling and liver problems so who knows.... I'm actually also sensitive to sulfurous foods and sulfites and those can make me break out but I'm not eating any of those so it's a bit of a mystery with my face breaking out.
Thanks for your reply!