Symptomatic Carriers?

[sarosh]

I have been away from the board a long time as my diagnosis from Dr. Toland's lab was inconclusive. But , subsequent to that i pursued it with a genetic lab in India and now at 57 yrs of age I have finally be diagnosed as positive HFI!

Dr. Toland's lab had tested me for the common mutations: A149P, A174P and N334K and results were negative but they said that they suspected that there might be something on A337V and in India using Mutation Analysis by Next Generation Sequencing they found my mutation to be A338V.

I have managed to survive all these years without a diagnosis but now the lab says that both my children have to be carriers . I am wondering if any of you know of mildly symptomatic carriers.

[colormist]

My mom and dad both show signs of issues with sugar. My my gets some severe cases of hypoglycemia and my dad gets sick if he eats too many sweets. I've been wondering if carriers of the gene might show signs of fructose sensitivity, but they both seem to have fairly unrestricted diets. My dad drinks HFCS-loaded soda pop like nobody's business.

I know my geneticist in Michigan wanted to run a full genetic profile on both my mom and dad, but they're uninsured and couldn't afford the medical bill associated with genetic testing.

Congrats on your diagnosis!

[charlie]

Hi Sarosh, we missed you, welcome back. Glad you have a definitive diagnosis at last, that is great news.

I haven't read anything about HFI carriers but I know carriers of CSID which is another congenital sugar problem can have mild symptoms so it is a good possibility but they just never realised.

[denverjay]

I am HFI and have two teenage daughters whom are not HFI, but carriers. They exhibit no symptoms of HFI.

[Tammy]

My daughter has HFI which means I am a carrier. I eat anything and everything and I have no issues related to HFI.

[oneladyff]

Hi, I am also recently diagnosed with HFI which was confirmed by DNA. I am 53 yrs old. I have never liked sweets but little did I know that several of the foods that I love are high in fructose and now I have a sick liver and the only way to stop the damage is to find a diet that is fructose and sucrose free. I have always been healthy but the food I am eating is destroying my liver. HFI can cause liver, kidney and small intenstine disease.
I have been working very hard to find foods that are fructose, sucrose and sorbitol free. This is a huge challenge. Most labels do not tell you the amount of those. I have met with a registered dietician and even she did not have the answers. I do know that I can no longer eat any fruit, any vegetables and most seasonings. I can eat most cheeses as long as they are made with animal rennet, meat, chicken, fish, sea food, pork . I have been eating a small amount of white rice and egg noodles even though they have .04 grams per half cup I am not sure what else to eat. . I know I am going extreme but I am told in order to save my liver this is something I have to do. I have seen many of the recipes for HFI and they look delicious but most are low in fructose and I need no fructose. If anyone has any ideas of where I can find these values, plz let me know. I have found the USDA website helpful. If anyone is interested in the foods that I have found so far I will be posting those. I am getting quite the nutritional education.

[charlie]

Good databases are:
www.nutritiondata.com
www.fineli.fi/?lang=en

also, this is from the CSID site which is sucrose and starch but has a useful database of all sugars to print out, I use it as my bible, print it in landscape though to get it all on the page
csidcares.org/food/

Yes, it is a massive education, you will end up knowing way more than your dietitian..... You won't be able to get completely fructose free if you are using white rice and grains but the amount will be small so if you cut out the major sources of fructose etc then you may well find your body will cope with the small amounts in those.

There is a section for safe ingredients so yes, post some there, always interested to see what other people find.

look up colormists pinterest board too for recipe ideas, I will leave her to link you to it.

[colormist]

Oneladyff

Here is my link to my pinterest board of HFI safe foods:

Please READ MY NOTES. If I say "tolerate" or "might be safe" or anything that would imply that it has really small amounts of bad-for-hfi stuff, you are going to want to avoid that food until you're in a better place.

I also want to let you know that you are NOT going to extreme. Fred's doctor said he's only allowed to have 100MG of unsafe sugars a day before it starts to cause an issue. 1 gram is way over that limit.

If I were in your condition, I would stay away from anything vegetable or any other color than white/beige (with the exception for cheese and meats) for at least a good few months. This would limit you to dairy, meats, and refined white grains. Make sure your meats don't have any additives (broth, natural flavors, brine--all these things are highly likely to have fructose) and make sure your breads are safe (french, sour dough, italian, and rye are most-likely to be safe, but ALWAYS read the ingredients label). Also, plain salted potato chips are the bee's knees.

I would definitely be interested in seeing your list so far. I am always looking for new things to add to my pinterest board. Also, we can let you know if we see anything suspicious on your list that you might want to give a second look-see.

I've been on a strict HFI diet since 2006 and I still have slip-ups. They happen. Last week was cheese ball puffs. They were delicious, but they had sucrose listed on the label and I skimmed right over it. I only became suspicious when I felt ill later on. It was the only thing I had consumed that was not a trusted safe food.

Who puts sugar in cheese balls? Why?