Following a strict HFI diet

[gerri]

Hi everyone 2nd post 

I was following a low fodmap diet - until I got very sick.   My tryglycerides just would not come down.  My liver enzymes are still elevated. (Never a alcohol drinker or drug user because of severe allergies).  No one could tell me since very young - why I had elevated liver enzymes.   I am diagnosed with celiac/Hereditary Intolerane (both by diet challenges).  My gastroendocrinologist will not do further test for HFI - he said the test would be quite dangerous for me. Diagnosed 3 yrs ago - but on fodmap diet for years.   The hospital does not do genetic testing.  To be honest - since follow a strict hereditary fructose Intolerant diet - of a month I am feeling - much better.  

As I have multiple autoimmune diseases as well - lactose intolerant - severe allergies to sulfites, eggs, corn, honey, maple syrup,  and much more - going strict fructose free has help immensely, my gut is not as sore - I have lost 10 lbs.   HFI has affected my liver/kidneys and other organs.  When I started having pains around my heart - I took quick action. Since on the strict HFI diet - the pain around my heart is gone.  My meals are all home made.  I avoid all fruit/most vegetables.  Meat/poultry/lamb/turkey  is organic and buying myself a yogurt maker soon - fish I buy at my local store.    

My Sjogrens is acting up don't understand why - will keep researching.  Not sure what sugar additive I can use - basically haven't use too much - except a stevia product / which I read is alright - then in another site it is bad.  

Getting tired of/and questions answered:
Drinking water - need suggestions what else to drink
Go to store for frozen vegetables - to find out that sugar is added before freezing 
Finding more things with fructans are now bothering me as well.
Family and friends don't have me over because my diet is too challenging.
Of being so tired all the time - get 5-6 hrs of sleep
Just wish my whole body would stop hurting.
Need to find what vitamins others are taking - right now taking vitamin D - for vitamin D deficiency - I am allergic also to the sun.
Where to find meal suggestions and recipes for disserts (think that is a option I can forget about)
What nuts can we have - I have cashews & pistachios - read ok and not okay - need other's thoughts 

Little long winded - hope for some answers - thanks

[colormist]

Fluids: Coffee, non-berry teas, milk (maybe lactaid might work), german beers are okay if you're liver is in good condition.

I find the fact that most people center celebrations/get togethers around food to be most-depressing. I went out to lunch with my friend and she picked a location where I wanted to go, but I knew I couldn't eat anything (aside from a latte). When she found out I wouldn't be eating, she also chose to not get food. (Which just made me sad because I wanted her to eat.) Dinner parties are particularly stressful. I usually can attend those that are pot lucks--where you bring your own dish. That way I know I will have at least one thing I can eat. Maybe offer to bring a dish to their get-together? Cutting someone out of your life just because you don't know how to feed them is such an not a very nice person move. You could always eat before the event!

No desserts. I don't even consider eating anything sweet.

Nuts are not okay. No nuts. Particularly not cashews. Sometimes I allow almond slivers or pine nuts, but those have fructose, too.

I take a Nature Made gel capsule vitamin. They're the only vitamins I've found that don't have added fructose and don't make my stomach do flip flops.

Please know that my recommendations are based on the HFI diet guidelines and not Fructose Malabsorption/Dietary Fructose Intolerance guidelines. I hear the FM/DFI guidelines are considerably more lax. Since you don't have a genetic diagnosis, it's hard to say which one you have. The HFI diet, however, is safe for FM/DFI, but the FM/DFI diet is not safe for people with HFI.

Where do you live? We might have people located in your region that might be able to give more specific food recommendations.

[gerri]

Thanks for your reply - My gastroindocrinologist a specialist who deals with people with hereditary fructose intolerance and other digestive issues - diagnosed me as having HFI - without the genetic testing. I would be interested in getting genetically tested - just not sure where to send my blood to get tested. They don't do the genetic testing in McMaster Children's Hospital, Ontaro Canada, where I go to see my doctor. I live an hour away from Hamilton, where the McMaster Children's Hospital is located.

Following the fructose malabsorption diet is what got me further into trouble and I was getting progessively sicker. I followed it strictly - but like you said it not good for people with HFI. Since following the hereditary fructose intolerance diet strictly - it has help me a lot. I've had problems with sugars all my life. Liver problems most of my life. Was jaundiced as a baby - very sick as a baby - was fed corn syrup and carnation condensed milk. As I got older I stayed away from sweets - holiday was hard could not avoid sweets / then I was sick again. Going to school I was given - peanut butter and jams sandwiches - by weekend was sick again.

Now I see my family also being affected by sugars (likely they have Hereditary Fructose Intolerance as well - not sure I will ever know - they are adults not interested in finding out) - as my boys were growing up I limited their sugar intake. They figure they don't need to get tested - if they don't get tests done - they don't have HFI. I don't want to be sick anymore - can't deal with the gut rot. I am too scared anymore - too touch anything with any sugar in it.

[ukbill]

Gerri have you contacted Fred on this site he lives in Canada and at 70+ years our oldest known member.

He was diagnosed many many years ago and knows how the system works in Canada. he will be able to help for certain.

Sorry but I missed you posts until today.

most of your problems will most likely be from a severely damaged liver.

Although if you are HFI / Fructosemia you are the 1st with diabetes!

I think your diet is almost certainly far too high in Fructose to be in anyway safe, or to allow your liver time to regenerate (which it will given enough time on an extremely low Fructose diet.)

Remember digestible Fibre is bad for us because its digested in the intestine into sucrose.. which causes IBS type symptoms and Hypoglycemic depression of the blood sugar levels, although usually only slight.

I can send you the safe foods list (which I amended to make safe) from the UK's leading hospital which researches HFI / Fructosemia.

The original is a dangerous document to give to any parent of an HFI / Fructosemia child or adult.

Although how you will make it work given all the problems your damaged liver seems to be causing is a moot point.

[ukbill]

Are you aware that Sorbitol is really dangerous for us with HFI / Fructosemia??

[gerri]

Hi UKbill - I was always Hypoglycaemic all my life - I tried to bring my sugar up to normal by eating more sugar. DIdn't realize it was causing me to be more Hypoglycemic - then when I passed 40 in age - and glucose testing my sugar said I was type 2 diabetis. I am not on any medication - because of allergies. I watch my diet and I am controling my hypoglycemia and diabetes. There is no sugar of any kind in my diet (all my food is made from scratch) or fructose in my diet. WIll try contacting Fred. Thanks. So much all the info

[ukbill]

I seem to remember you saying you were looking at added fructose in Frozen veg..

Veg is out altogether in a strict diet.

I take none-digestible plant fibre to keep things working as they should. (Psyllium husks) which helps a lot.

[gerri]

Hi ukbill - I don't eat any fruit and next to no vegetables - never added any sugar to my vegetables - but did find sugar in frozen vegetables at store - after getting so sick - starting having chest pains - stopped all fruit and most vegetables (small amount green beans, green peppers - about all I eat - like once a week - no more - but might be best cut that out as well ) - I don't use any sugar of any kind - no sugar substitutes - no artificial sugars either.

[colormist]

Jan 17, 2017 11:55:01 GMT -5 gerri said:

I was always Hypoglycaemic all my life - I tried to bring my sugar up to normal by eating more sugar. DIdn't realize it was causing me to be more Hypoglycemic

I did the same thing as a kid! I knew my mom was hypoglycemic and she would eat sweets when she started getting the shakes. So when I was feeling shaky, I got out a spoonful of sugar and would eat that. I did feel better right away and then worse about 10 minutes later! Half of the contents of table sugar is glucose after all. It's tough trying to figure out this diet on your own--especially given all we know about other "healthy" diets.

[ukbill]

So far out of my 11 male school classmates (11 to 16 years old) 6 have died 3 from obesity related illnesses and one who is currently still alive is on his 2nd stroke as a direct result of his obesity and resulting high blood pressure issues.

All but 1 were very fit keen footballers (soccer to people in the USA) when at school. All had a great liking for sweet foods.

I cannot see what is so good about any diet that includes refined sugars for anyone particularly when it kills people under the age of 60.

Makes smoking look healthy!

Back to the subject I used to eat raw green and red peppers and celery, green beans always made me feel ill after a few bites so never ate many of them.

Now I only eat the following green foods.

Small amounts of spinach (stalks / stems removed)
Soft green lettuce and salad leaves
Watercress
Savoy and spring Cabbage leaves (green ones only) stems, stalks and large white veins cut out, boiled briefly in a large amount of water.
Mint / Peppermint leaves in hot water to make mint tea.

For Celery flavour I use a tiny amount of celery seed. I use this in a lot of my cooking because I like the flavour, when I say "tiny amount" the seeds are so powerfully flavoured that 10g of the seeds last me about 12 months!

Dried or fresh herbs cause no problems what so ever in any amount I am likely to eat.

If you have had a compromised liver for so long I suggest getting an ultrasound scan to check for fatty deposits. As you keep to an ultra low Fructose diet your liver should start to repair itself. I know this can take over 6 months before suddenly one day you will wake up feeling more alive than you have ever felt before in your whole life.. and that is just the start..

[biologybill]

Hi Gerri 
I am a bit late to the post I know but we can always improve our diet. 
I hope you are starting to feel better. 

From my families 24 years experience on a strict HFI diet here are my tips. 

• Pay attention. listen to your body and read everything! Even if you read the ingredients list before they often change, and this usually means adding sugar, not taking it out.
• Avoid all fruits. Ripe fruits is by far the main natural source of fructose 
• Get most of your calories from animal products (especially when you are first starting out)
• Fructose is naturally only occurring in significant quantities in ripe fruits and a few outlying plants
• Leafy greens are normally safe. Best vegetables for most of your fibre vitamin A and C would be. Spinach, Brassicales (excluding brussel sprouts which have recently been bred to be sweeter)
• old potatoes have low sugar (but avoid new potatoes)
• Grains: White wheat, barley, oats and rice are all okay, so is rye and certain wheat varieties in moderation (but I would recommend only moderate portions)
• Nuts: I eat nuts quite regularly, but I have gotten my diet down to a T allowing my liver to keep up. If you are new to this maybe cut them out until you get things settled, and then introduce them slowly. 
• Sperm has fructose in it, don't swallow
• Get most of your calories from animal products, buy chickens, eggs red meat etc and eat proper non processed proteins and fat. (and dairy)
• Parsley!!! As a leafy green that has not been bred to be sweeter it has negligible sugar, but incredibly high content of Vitamin A and Vitamin C as well as other antioxidants. Try eating it, putting it in your food and making parsley tea. Much cheaper than multivitamins (especially as most brands add sugar or sorbitol (which we also can't have if you are not aware) Just don't overdose yourself on vitamin A
• Foraging. just started toying with this myself, but most naturally occurring edible plants are low fructose (apart from ripe fruits) 
• Most legumes are fine but
• No green peas, years of selective breeding has made them as high in sugar as some fruits (although from what I hear some eastern european varieties are not as sweat, so need to look into getting some of that.)
• If you go over or are struggling give your liver a break. Do this by eating only zero fructose foods for the next 24-48 hours or however long it takes you. This means animal products and plants with trace amounts of sugar only. 
• Onions and leaks..... Cut these out untill you get on top of things. Then add them in moderation for flavour, onion varieties tend to have more sugar, but spring onions and leeks have less. 
• Ramsons!!! Dont cook for long to get a garlic flavour, or cook down as a replacement for onions, wild garlic has very little sugar. 
• Drinks 
• Don't drink anything other than water, teas, and coffee while your liver is struggling (give it a break) 
• Alcoholaditionally brewed beer is fine, but they often leave out details of ingredients. When in doubt pilsners are safe as all the sugar is converted to alcohol. Other safe alcohols include vodka, proper whiskey, white rum, 
• Soft drinks: Diet varieties are almost always fine from my experience but be cautious with diet fruit drinks (orange and lemonade etc) as they may use concentrated juice