|
|
Post by oneladyff on May 24, 2014 1:34:50 GMT -5
I am new to this site. My labs came back with elevated Ast and Alt. Liver biopsy says severe fatty liver and fibrosis. I was sent to a liver Dr and they seem lost as to the cause since I don't drink alcohol, I am not obese and don't have high blood pressure. I found in my research HFI and insisted on a DNA test. All the Drs. have been looking at me like I am crazy when I tell them I am certain I have HFI. They are not even familiar with it. Decided to do my own research and drastically changed my diet. Probably not the right diet but I am trying. Well, got my DNA results today. I am positive for HFI. I have asked drs for years what is wrong with me. Anyone have a complete nutritional plan for this condition. I need to heal my liver.
|
|
|
|
Post by charlie on May 25, 2014 4:37:21 GMT -5
Hello, welcome to the board. congratulations on getting a diagnosis, hopefully things will go upwards from here. Ok, where to start. Start at the beginning. Let us know, maybe add it to your signature on your profile, where in the world you are as foods can differ in different countries and maybe someone in your region can help you with best places to shop. Firstly keep it simple to start with, throw away all the rule books about good nutrition, five a day, variety needed etc etc etc. that doesn't work with HFI, but as is proven by our older stalwarts on here, you can still lead a healthy life. Begin by trying to stick to the safest foods to make sure your body has a chance to heal. Stick to plain meats, fish, cheese, eggs, white rice, white flour, old potatoes (in small quantities to start). Eliminate ALL fruit and vegetables to start so you can build a base from which to work. Unless you have separate dairy issues milk is good for energy. Opinions vary on here about glucose but I advocate it as a sweetener if you feel you need some puddings, cakes etc. Eat regularly, limit exercise to start so that your system can recover, and your blood sugar can stay stable. How old roughly are you? Keep a bit of a diary as to how you feel each day to see if a pattern emerges. You can then use this down the line if you start introducing a few low fructose foods. Become fluent in food databases as these will be very helpful www.nutritiondata.comwww.cronometer.comfructose-free.tumblr.com/ is a good blog started by a regular on this board, Colormist. www.fineli.fi/?lang=enHave a look through the recipe section on here for some cooking ideas and ask away for any queries. Fred suggested a while ago those of us that have been on here a long while put together in info sheet and this line and I think that is a great idea, then we can PM it to new diagnosed to help. Will start putting something together and loop others into it I think. |
|
|
|
Post by colormist on May 26, 2014 8:23:10 GMT -5
Hi Oneladyff! For a diet guide (of sorts) I created a pinterest board of safe foods: Please read the descriptions as food manufacturers like to sneak in fructose under the guise of "natural flavors" and my comments will help you read the labels. Since you're starting out new, I would steer clear of anything listed "tolerate or might" since they have lower quantities of fructose, but might cause you an issue since you're going cold turkey. It's good to get a healthy baseline before experimenting with your tolerance levels. Once you get your diet under control, I would recommend sticking to lower-carb foods. I had horrible hypoglycemic fits while on high-carb diet (I only consumed meat a couple times a week). Now that I switched to higher protein content, I don't have issues with hypoglycemia as often. I can now exercise and go for more than 4 hours without eating. It might be best for you to cut out glucose and dextrose for the first week or so, just until you feel better so you can now how your body will handle those safe sugars. |
|
|
|
Post by oneladyff on Jun 2, 2014 8:24:26 GMT -5
Hello, welcome to the board. congratulations on getting a diagnosis, hopefully things will go upwards from here. Ok, where to start. Start at the beginning. Let us know, maybe add it to your signature on your profile, where in the world you are as foods can differ in different countries and maybe someone in your region can help you with best places to shop. Firstly keep it simple to start with, throw away all the rule books about good nutrition, five a day, variety needed etc etc etc. that doesn't work with HFI, but as is proven by our older stalwarts on here, you can still lead a healthy life. Begin by trying to stick to the safest foods to make sure your body has a chance to heal. Stick to plain meats, fish, cheese, eggs, white rice, white flour, old potatoes (in small quantities to start). Eliminate ALL fruit and vegetables to start so you can build a base from which to work. Unless you have separate dairy issues milk is good for energy. Opinions vary on here about glucose but I advocate it as a sweetener if you feel you need some puddings, cakes etc. Eat regularly, limit exercise to start so that your system can recover, and your blood sugar can stay stable. How old roughly are you? Keep a bit of a diary as to how you feel each day to see if a pattern emerges. You can then use this down the line if you start introducing a few low fructose foods. Become fluent in food databases as these will be very helpful www.nutritiondata.comwww.cronometer.comfructose-free.tumblr.com/ is a good blog started by a regular on this board, Colormist. www.fineli.fi/?lang=enHave a look through the recipe section on here for some cooking ideas and ask away for any queries. Fred suggested a while ago those of us that have been on here a long while put together in info sheet and this line and I think that is a great idea, then we can PM it to new diagnosed to help. Will start putting something together and loop others into it I think. |
|
|
|
Post by oneladyff on Jun 2, 2014 8:35:14 GMT -5
Thank you for responding to me. I am 53 yrs old and live in California. I have not been able to tolerate sweets since I was an infant. The reaction I have is nausea. I have asked Drs. For yrs why that is and it wasn't until I started my own research after my liver enzymes started elevating that I read about HFI and then requested a DNA test to confirm. I have always ate a lot of starch like rice, potatoes and pasta and sourdough bread. I was told by one Dr. to not eat white rice, no milk and no bread because they turn to fructose and are toxic to my liver. Do you have HFI? Does any of this sound familiar? It's nice to know that I am not the only one. Thank you for the links, I am going to look at them today. Where are you?
|
|
|
|
Post by Tammy on Jun 2, 2014 8:59:46 GMT -5
HI and welcome. I'm glad you found us! White Rice, Milk and Meat are pretty much the staples of this diet. Bread is also good when it doesn't contain any sugars. You'll find that the Dr really don't know alot about the diet part of this. they will usually ask you what is safe to eat. Those links above and the sugar list from Dr. Tolans site www.bu.edu/aldolase/HFI/treatment/sugar_table.htm will become your bible for awhile. Although you probably know by now what you can eat and what you can't. It's ok to eat starches. I know they turn to sugars after eaten, but that isn't a problem. Just eating it in the sugar form is the problem for HFI. |
|
|
|
Post by oneladyff on Jul 1, 2014 11:34:24 GMT -5
Ok, update. I have been seen by several Doctors including a liver Dr and found that I am completely on my own with HFI and Doctors. I sat down with the liver Dr and he didn't even take the time to understand HFI. Very disappointed. I had to explain to him how HFI causes liver damage. I asked him if he has ever had an HFI pt and he had not. He is head of the dept and is the research doctor. I asked him if he knew of any pediatric dr through Children's Hospital and he said he did not. Does anyone have a name of a Dr in the States that treats HFI patients? If so, could you please send me the name and location.
As for my diet update. Still very hard to find food values so I am sticking to just Meat, fish, chicken and pork, cheese, cottage cheese, milk, eggs and I found bacon that is cured in only salt and smoked so no sugar. My ALT and AST liver enzymes have dropped by half. Yay. So far so good.
The place I purchased the bacon is online at US Wellness meats, all organic grass fed. The bacon has really helped me with flavor for breakfast.
|
|
|
|
Post by charlie on Jul 1, 2014 15:52:56 GMT -5
Welcome to the world of HFI, unfortunately doctors and dietitians that really understand it are few and far between. Maybe contact Boston University for advice on where to go.
As for the diet, sounds about right for now. have you tried any grains? If pure HFI you should be OK on white wheat and white rice. If you are struggling with food values, have you had a chance to look up any of those databases we passed on, between them they cover most foods. You are best sticking to as low fructose as you can for some time to really give the liver a chance to improve.
|
|
|
|
Post by fred on Jul 1, 2014 19:25:42 GMT -5
Hello oneladyff
Gosh, you sound a lot like me! I eat mostly those things you mentioned.
The one food that will give you most trouble is store-bought bread. I used to eat eight slices of bread just at lunch when I was working and always took my lunch with me. Nearly all bread contains sugar. They add it to cause the yeast to work better. There is about two tbsp. of sugar in a 1 lb. loaf.
You can make bread without any sugar. A bread machine makes it quite easy. If you have a problem getting the dough to rise properly you can use Dextrose instead of the sucrose (table sugar).
There is enough sugar in most commercially made bread to make you feel sickly, all the time. Small amounts of sugar can also make a person with HFI constantly depressed to say nothing of that damage it can do to you. So, start making your own bread, you'll feel like a new person.
There are also a few vegetables that you can eat but for a while just stick to "old" white potatoes. You can boil them, roast them, fry them or bake them.
Fresh meat is OK but be careful about lunch meats and bacon. Smoked bacon is best as it is not usually sugar cured. Who knows what luncheon meats contain.
You will be able to eat Puffed Wheat, Shredded wheat or Oatmeal at breakfast.
Well That should get you started. Please ask any of us here any questions that you may have.
Fred
|
|
|
|
Post by Tammy on Jul 1, 2014 23:23:42 GMT -5
Ok, I am confused. If you are 53 why are you looking for a pediatric doctor at a Childrens hosp? Are you concerned about a grandchild or something? I haven't been on here a lot lately due to personal issues so maybe you explained earlier. Sorry if I just missed that.
The Pediatric Gastroenterologist that DX'ed my daughter 30 years ago still practices here. He didn't really know a whole lot about it, but enough to suspect it. she now goes to an adult Dr who knows even less but at least they always take everything serious and look into everything.
These drs are at Geisinger Medical Center in Danville, PA. So that is the other side of the country from you.
|
|
|
|
Post by oneladyff on Jul 1, 2014 23:52:41 GMT -5
Hi, I was asking about a pediatrician who has handled HFI patients because my regular Dr suggested that since it seems that more children than adults are diagnosed with it and liver issues that they may have some valuable liver info for me. My new liver Dr who is a fatty liver specialist didn't know what to say to me other than keep trying what your trying with the diet because he didn't know what else to do.
I haven't tried any bread again yet because I am trying to be as close to fructose/sucrose free since my liver is in such bad shape. It's a hidden disease. You would never know it by looking at me. I would of not known if my labs would of not been off. I am lucky at this point and trying to reverse the damage.
I really miss sourdough toast. Lol. The only carb I eat about 3 times a week is a bowl of puffed rice. Can't find a value for it but it has to be on the lower end I would think. I also found that making cheese crisps in the oven tastes like cheese crackers and it crunchy so that is satisfying and it's only cheese.
Just wanted to thank all of you too for posting back. It's really helpful and comforting to know I am not the only one.
|
|
|
|
Post by oneladyff on Jul 1, 2014 23:57:24 GMT -5
Charlie,
I have used all the links that you posted, they are wonderful. I even used the USDA website for values and was able to talk to their nutritionist on phone. I have been in contact with Boston University. Dr. Talon is very nice. He said they are about 3 to 4 yrs from an actual trial study.
|
|
|
|
Post by charlie on Jul 2, 2014 1:26:02 GMT -5
Sounds like you have most things covered. If you are seeing a liver specialist then he can keep an eye on the health of your liver regardless of the original cause. Then all you need to do is keep building up a safe diet that works for you. You should find plenty of tips and recipes on here.
|
|
millan
Junior Member
Posts: 79
|
Post by millan on Jul 2, 2014 8:43:59 GMT -5
I think it was good advice about looking for a pediatrician.
I am over 40, and I still go to the pediatrician when I'm having my check-ups for the HFI (every 3rd year or so).
They simply do not have any doctor for adults that have come across or know anything about HFI, since most patients get diagnosed when young(ish) and when grown up normally doesn't need any additiional help. I'm only going back now and then because the doctor was interested in following the health of and adult with HFI and I liked the idea of being able to check my liver values now and then.
|
|
|
|
Post by lukesmom on Jul 9, 2014 23:48:22 GMT -5
Hello. We are in Los Angeles, but also have relied heavily in this board instead of doctors. My son is the only HFi case at the Cedars Sinai Metabolic clinic (which has just closed  if you are in CA: Our Vons carries a bakery bread called "Farmstyle" that is HFI safe. Also, Trader Joe's has many products. Private message me for more local options. |
|
|
|
Post by tummyache on Jul 10, 2014 12:06:41 GMT -5
oneladyff, I am so glad you got a diagnosis and then found this great site! There is so much good info here and good support. Just wanted to wish you well and say hello. I'm 71, grew up in LA, California before HFI was even in the medical books as a footnote. I have found, unfortunately, that medical folks generally are still pretty clueless...so yes, in practice, "we" are left to fend for ourselves. Most definitely you will get your most useful info here and at the sites these members refer you to.
|
|
gerri
New Member
Posts: 43 
|
Post by gerri on Nov 28, 2014 9:13:22 GMT -5
HI Charlie, only difference between you and I, is that I haven't been genetically tested. I was diagnosed with HFI, by my family history, and fructose challenge. I will read through the post to you, to become more knowledgeable to help myself.
Gerri
|
|
|
|
Post by charlie on Nov 28, 2014 12:25:31 GMT -5
Hi Gerri, welcome to the board. I actually havent got HFI and my daughter has other conditions but we started out our journey of diagnosis on this board and stayed here to help others, and also because I enjoy the company.
Hopefully you will get alot of very good answers on here, but do feel free to ask whatever you want, no matter how trivial. Maybe post a new thread to introduce your story, what you eat etc to help us help you.
|
|
|
|
Post by richardjohnson on Aug 26, 2015 22:01:45 GMT -5
Hi
I am new to this site
I am a physician and scientist working on fructose and hereditary fructose intolerance
I am also collaborating with Dr Tolan in Boston
We are trying to develop a safe drug or possibly nutraceutical to help patients with hFI that has been officially diagnosed
One thing we need to know more about is the natural history-- how common does liver disease occur-- how often one gets severe reactions like nausea or hypoglycemia
Would people be interested in completing a questionnaire and are you aware of there is an official registry?
I would love to help reverse this disease
Richard johnson
Richard.johnson@ucdenver.edu
R
|
|
|
|
Post by charlie on Aug 27, 2015 5:41:23 GMT -5
Richard Johnson, that is really exciting news,
My daughter has Fructose Malabsorption but also CSID, HFI was eliminated by gene test but she still reacts badly to fructose. If she is relevant let me know,
Colormist, Tammy, Fred.
|
|
if you are in CA: Our Vons carries a bakery bread called "Farmstyle" that is HFI safe. Also, Trader Joe's has many products. Private message me for more local options.
