new to the site

[dhazelrig]

I'm a 39 yr old female from sugar land, tx. I've never had the genetic testing to confirm HFI, however there is no doubt that it is what I've dealt with since birth. I was lucky to have a grandmother & great aunt with the same conditions so I had a good support system. I am so thankful for this site & the stories you have all shared. I haven't been taking very good care of myself, eating food that I thought was ok because it didn't taste too sweet. I now understand that I can control feeling sick & tired all the time! I have a Dr appointment today to discuss kidney & liver tests, I am also hoping to get a referal for genetic testing for my insurance to cover. Any advice you can give is appreciated!

[ukbill]

Welcome to the site. glad we can be of help.

Look at the list of "tolerated" foods and remove all that contain fructose.. they may be "tolerated" but not without cost to any of us with HFI.

You will soon feel better than you have ever done before.. assuming you are HFI.

Do not get frightened by the liver and kidney tests if your enzymes are high that might be because you are still consuming too much Fructose or a result of long term damage due to Fructose or they might well be perfectly normal.

It can take years of eating safely for them to come down and in some cases where damage is great they might not come down to "normal" at all.

The Liver is a wonderful organ and so long as there is some undamaged part it will usually re-grow and regenerate

Good luck with your Doctors appointment.

[dhazelrig]

Thank you for the response! Your advice to remove the tolerated food seems to be what is needed. Last night I cut the veggies & only ate chicken, no stomach ache! My Dr, whom I've just recently been seeing, ordered blood tests but doesn't believe me about HFI, she said its most likely celiac diease! She is sending me to a gastro Dr..I guess its time I just pay the $ for genetic testing...
The advice & experiences of you and others is so reassuring, thank you!

[ukbill]

I live on Meat, mushrooms and carbs like rice, pasta and safe bread Oh yes and lots of Dairy (although some HFI have a problem with Cow based dairy.

I also try to eat a meal of sea fish at least once a week (iodine ) and get some liver type foods at least 2 time a month to get some serious vitamins and minerals.

I cannot take multi-vitamins because I am getting too many in my diet! I do take vitamin C (+ Zinc slow release type) and Vitamin D3 because in good old UK we do not get enough sunshine.. (and I work nights! )

To keep me "regular" because we have to eat a low digestible fiber diet I take a none digestible Fiber called psyllium husk. Its best to get the whole husks as the powder is hard to incorporate into foods and be aware if you have never had detox foods before.. you might get a green slimy surprise for a day or two.. this then clears up and you will never get it again.. no idea why.. it just happens sometimes OK?

Herbs are no problem either, I also avoid Soy products particularly Soy oil and protein and of course the beans..

The HFI diet (given a varied selection of meats) is a very healthy and will do you no harm, unless you are planning to get pregnant soon? when the addition of Folic acid is essential both before pregnancy and during gestation.

Certain Potato products are safe (instant Mashed potatoes for example)) if you need some more variety.

I cook Rice with various spices and herbs usually different ones each time I cook. By the way watch Rice in the USA most is coated with sugar! YUK!

Try to get imported Basmati rice which has the best flavour of all.

In the last week I have had Salmon with pasta in a seafood sauce, Pork Curry with Rice, beef steak with pasta, Turkey stir fry with rice, Pork chops with Potato dumplings and more that slips my memory at the moment.

So the Diet is NOT restricted at all so long as you use your head a bit

Tonight I'm having chicken livers pan fried with mushrooms and spices and pasta with home made pesto.. which would cost you a fortune in an expensive restaurant!

Hope you continue to feel better.. just remember to use different meats (red meat is very good for B vitamins and Iron)If you cannot face Liver of any kind try liver pate? Its very palatable and if you can find some without added sugar loaded with vitamins.

Oh yes I have to mention Mac and Cheese too some of us nearly live on the stuff

Enjoy
PS My Blood lipids (cholesterol)and blood pressure are very good! My blood pressure is spot on for a 25 year old..

[colormist]

I love mushrooms, cheese, pasta, olive oil, potato chips, and olives so much. I make these chicken pockets that are to die for. My husband dubbed them "chicken pockets", but in reality they are Cheesy Chicken Chimichangas. He demanded I make them at least once a week for several months in a row. This never happens with my husband as he tires of the same food very easily.

Since you're in the US (and I'm going to presume you have insurance), I'm going to suggest you bring up hypoglycemia (I'm presuming you have issues with your blood sugar levels as this seems to be a decent indicator of HFI instead of DFI)--i.e. the shakes, cold sweats, lightheadedness, depleted energy, need to sleep, labored breathing, and fogginess.

I mentioned this to my geneticist and he said to get insurance to pay for the genetic test, we had to use the term hypoglycemic. He said that insurance would not pay for the test just to see if you have HFI, but they would pay for the test if they knew you had bouts of hypoglycemia. It still ended up costing me $100 for the test, but it was worth it to have evidence in my justification for picky eating.

[dhazelrig]

Thank you for the food advice especially the fiber....I've been doing much better simply by not going out to eat so I can control the ingredients. I work full time & have a 8 yr old so I'm always tired but I'm getting creativr with the slow cooker. The advice about the hypoglycemia (every symptom you mentioned I feel) is something I will try to get the doctor to look into. I have great insurance but just need to get a good doctor!

[colormist]

If you can, ask your family doctor (PCP) to give you a referral to a geneticist. My bloodwork was actually sent to Baylor College of Medicine in Houston. Which is really quite close to your location. Baylor is one of the more common locations in the US for HFI genetic testing.

Good luck!!

[dhazelrig]

My pcp insists I see the gi before she will refer me to a genetic Dr..I found your food blog & you've got great ideas! Even though I know most of what to avoid I still make mistakes..yesterday it was kraft easy mac, after a quick lunch of 2 packages I realized there are 5 grams of sugar per serving!

[colormist]

I made the same mistake with Easy Mac, too. I bought a case of it at Sam's Club. Had one bowl and then had to donate it to a coworker. Food manufacturers are tricksy, they is.