Another new member

[beetlebot]

Afternoon everyone, 
So I'm 25 and living in Melbourne Australia, I have recently been diagnosed with HFI based on symptoms alone, however that was after annoying a lot of doctors and not taking no for an answer. I've had issues with sugar ever since I was born, hated the taste from the bottom of my soul, also pretty regular vomiting and hypoglycemia if I ate the wrong thing. My parents took me to the doctor when I was a kid only to receive the 'just feed her whatever doesn't make her sick' response. I've attempted to get help several times myself since graduating from diapers with similar unhelpful responses each time. I've been self managing my entire life pretty much from checking labels and avoiding sugar as much as I could, I can't tell you how many people I've told to 'go to hell' whenever they told me I 'really should be eating fruit'.
Anyway after annoying the nuts out of a couple of doctors I finally got a hydrogen breath test for fructose which gave me the worst symptoms I've ever had (vomiting, hypoglycemia, cramping, diarrhoea, extreme dizzyness, blurred vision, the works). However one new symptom I got from that test was (sorry gentlemen), my period came 3 weeks early, and then it came again another 10 days after that, then the one after that was 3 days late and I think I'm finally back to normal as far as that goes (usually I'm stupidly consistent on the 29 day mark so this was definitely out of the ordinary). So after those tests my doctor finally took me seriously and send me to a dietitian to analyse my results in comparison with my symptoms during and after the test. Thank goodness for that dietitian, she was my saving grace, for the first time in my life I felt like someone wasn't looking at me like I wasn't worth the effort. She told me straight up that she had no idea, but she would research her ass off until she found me an answer, and here I am.

So that's how I got here, apologies if that was a bit long, I did try and make it as short as I could. Now that I'm here I have a few questions for anyone willing or able to answer them.
Question 1: Ladies, has anyone experienced similar hormone imbalances that I have described above when eating any of the devil sugars? I do suspect it could have just been the immense stress my body went through during the fructose test, I did burst into tears when I got home right before I threw up all over my boyfriends shoes (sorry boo).
Question 2: Do any of you live in Melbourne, or even just Australia, and those of you who do; have you come across similar issues getting doctors to help you? Also if any of you know an expert who I could go to, even just to chat with, that would be amazing. 
Question 3: In the opinion of those of you properly diagnosed with HFI, would it benefit me to attempt to do a genetic test? I realise they're not 100% accurate yet, but those of you who have been genetically confirmed, did it help at all? Either with day to day symptoms or even just peace of mind?

Question 4: Does anyone know what the long term effects are on the body by eating foods that have small amounts of fructose/sucrose/sorbitol in them, but not enough to cause a reaction? Eg: certain nuts, small amounts of mushrooms/cucumber/avocado etc. I realise the 'response foods' are different for everyone, but these are a few things that I do seem to be able to stomach. I guess the sugar content of different vegetables probably changes with your geographical location too. My main concern is that I'm going to be slowly killing my liver by eating 12 almonds every day (not literally but you get my point).

Lastly I would like to say how pleased I am that a group like this exists, just by going through old threads I have already learned so much. Growing up surrounded by people and doctors who were uninformed and unwilling to help made me feel like the whole thing was in my head sometimes, it's nice to know I'm not crazy and I'm certainly not alone. Thank you all.

[colormist]

1. I have not, but I have had my period show up early due to stress. It's like it's thinking, "Oh! Wow, you're really upset right now, so I guess now's a good time for Aunt Flow to visit, too." We actually warn potential HFIers away from doing the hydrogen breath test because of your reaction to the test. Just reading the description of the drink made me queasy.

2. I think we have a few that live in your area, but I don't know if they're still active. There are a few Facebook support groups too. You might find other members there.

3. I think all you really need right now is a diagnosis on your medical chart. If you dietitian was able to get it added, that might be enough. There's no real treatment available at this time, so I don't think a genetic test would help your situation.

4. Eating any amount of fructose will cause liver damage. In the long term, I think you might end up with liver disease (? I'm really not sure on this). It's best to cut it all out and try your best to avoid fructose. The little slip ups that happen will be more than enough of a challenge to live with. That being said, every few months I do eat half an avocado or less than a serving size of peanuts. I also eat white mushrooms like nobody's business (different types of mushrooms have different types of sugars, but white seem to be okay). I also love pickles, but can't manage cucumber. Something about boiling vegetables causes the fructose to decrease.

I was told by my doctor that livers are like a starfish. They can regenerate quite remarkably so long as they are healthy.

Welcome to the group! I'm glad you were able to get a diagnosis and stubborn enough to hound the doctors with questions, though I am really sorry you had to go through the hydrogen breath test. I know AUS pushes that test and the Low FODMAP diet, both of which are not safe for HFIers. Thankfully you have that amazing dietician who you can hopefully stay in contact with and might help you on your journey through the medical system.

[beetlebot]

Hi colormist,

Thank you so much for your reply it was very helpful.
I'll focus more on not consuming any fructose at all, I have this food intolerance app that's been helpful.
I was surprised to find trace amounts of fructose in so many things I had no idea about. Explains so much, makes me wish I could've been diagnosed earlier, I could've saved myaelf a lot of suffering.

Thanks again for welcoming me, happy to be here finally

[hfimomof3]

Hi. Fellow HFI sufferer here.
1. I haven't heard of a specific relationship between fructose ingestion and menstrual cycle changes, but what you describe doesn't surprise me. Fructose ingestion is stressful on our bodies.
2. Sorry, not in Australia.
3. I agree with colormist about genetic testing. The main thing is what goes on your medical chart. Your symptoms sound like classic HFI but I'm not a doctor so it would be nice if (as you say) you could talk to a doctor who knows enough to confidently confirm it for you. You also need a plan for any emergency medical treatment you might need (eg you should probably carry a medical card or bracelet that lets Emergency personnel know you cannot have fructose, sucrose, or sorbitol; and all your doctors need to have a record of your diagnosis and what substances are forbidden for you).
4. It seems likely that adults ingesting any fructose probably will damage the liver over time, so best to keep it to a minimum, but I don't know of any long-term studies in adults with hfi. We don't really know exactly what is the optimal real-life diet for a person with HFI so we are all just doing our best.

It's important that you take vitamin C regularly as people with HFI are known to lack this in our diets.

[beetlebot]

Hi hfimomof3,

Thanks for your reply, I have an appointment with my regular GP who has always been very helpful to see what I can do about getting some kind of formal thing on my medical chart.
I wish we were like 100 years in the future after all the studies on this disease had already been done so there were clear cut answers. All this guess work and self testing is irritating. There's still a couple of foods that make me sick that don't seem to fit the diagnosis, but I suppose everyone is like that. I might post these in another thread.

Thanks again for taking the time to reply!