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Post by monie57 on Feb 4, 2009 22:27:12 GMT -5
i know that you all are not Drs. here but you have more info. than my drs. even the Gi. Dr. i was told by the GI Dr. that I couldn't have HFI version beacuase I was too old (just being told last Oct. at 51. How do you tell? I had the breath test.
I have tried some of the recipes here. Which is a safe extract(vanilla,etc.) to use ?
Is the gluose in the marshmellows recipes- liquid or solid?
If I have DFI is it safe to eat a little sugar?
The small grocery store, here in my town,makes bread and kiaser rolls using only dextrose for sweetener. I haven't had any problems with that. If I eat the Arnolds bread( contains no high fructose corn syrup) but does have sugar. I can only have 2 slices at a meal.
I had more questions but I can't remember them all right now. I'm feeling tired today. Does that have anything to do with this stuff?
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Post by colormist on Feb 5, 2009 8:55:30 GMT -5
Hi Monie, Typically HFIers have a life-long aversion to sweets, fruits, and lots of vegetables. We don't like things and we couldn't tell you why until we found out diagnosis. DFIers tend to develop their issues with sweets later in life and have been able to previously eat cakes, cookies, and candies without issue. HFIers are diagnosed with a blood test or liver biopsy. I think the breath test diagnoses a DFIer (a breath test can also cause severe complications with a HFIer). It is NOT uncommon for someone to go their whole life an not know they have HFI. Recently it seems more and more fructose is being added to regular foods (that clearly don't need it), so it's become more and more limiting for a HFIer to be able to live their lifestyle without having accrued complications. I'm not sure on the vanilla extract. I tend to use a maple extract instead, which doesn't give me issues. I'm just taking a guess on DFI here, but I've heard that over time, after being on a DFI diet for a length, you can slowly start adding certain fruit back into your diet until you find your threshold. I'm not sure how accurate that is as I don't have DFI. HFIers cannot add sugar into their diet at all. You are so lucky to find a local bakery that has dextrose-sweetened rolls. I have to make all mine by hand. You might check the sugar grams on the Arnolds bread. My guess is that it is still too sweet for you and that you should avoid it if it causes you issues. Accidental fructose ingestion for a HFIer makes us zombies. We get really slow, weak, and lethargic until the fructose can get out of our system (might take a day or longer depending on the amount ingested). To get it out of our system, we usually puke (within a few hours of ingesting the fructose) or drink lots of fluids to flush it out. I hope this helps. I can't really speak for DFI, but I'm sure lots of the stuff is similar. I hope somebody else here might be able to answer your other questions.  |
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Post by misty1 on Feb 5, 2009 12:45:52 GMT -5
Hi Monie I have DFI I have had some problems all my life but it was after my gallbladder was removed I really started to have issues. I have not used vanilla but have used almond extract and maple extract without problems. I make my own bread , bagels ,buns adn sweet rolls my whole diet is all home made stuff its easier that way I don't trust many store bought products. I also get very tired after ingesting frustose I have never had any blood sugar issues as some of the Hfi'ers do.
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Post by sherri on Aug 18, 2009 1:41:07 GMT -5
Hello. My name is Sherri and I am so glad to know that there are some real answers from real people living with HFI! I have been trying to find answers for the past 36 years!
I have always had strong aversions to sugars. Always new I was different but never quite got the answers I seeked. I heard everything from not having sweet taste buds, to it is all in your head ,here's some prozak and xanax must be baby blues,if you dont like sweets then dont eat them! What are you serious? Trained professionals laughing me right out of the offices! Took 34 years but I finally did some digging and self diagnosed, then found a genetic doc that would listen to me. She sent out for the dna testing and sure enough no gene! She gave me lists of acceptable foods and I now wear a medic alert bracelet. Unfortunately thats about all she wrote. I have so many unanswered questions and confussion and emotions and concerns! She is a pediatric geneticist and although I may act childish at times I am an adult.
Does anyone else suffer from a distended stomach? I have since childhood and into adulthood as well. I am so tired of being asked when I am due, am I expecting? I often wonder what sort of damage has been done to my insides since we found out so late. I wonder if I need to be getting liver tests and where would I go who would I contact. I am in the Dallas Tx area.I have three beautiful children, a loving husband and a very caring sister who has helped me so much to search for the answers I seek. I hope that yall can help!
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Post by colormist on Aug 18, 2009 7:37:32 GMT -5
Hi Sherri, Welcome to the board. We're glad you found us.  I requested a Medic Alert bracelet, but my geneticist actually said I shouldn't wear one. That it would actually prevent people from treating me because they wouldn't know how to handle HFI. He said if such a condition occurred where I was unable to correct people trying to put sugars in me, that hopefully there would be a family member that would inform them otherwise. I only get a distended stomach around my "time of the month". All other times it's pretty tucked away. I'm wondering if you might still be consuming some fructose since your geneticist gave you a list of acceptable foods. This might be causing the distended stomach? (I'm just guessing). Is there any way you could post your food list that the geneticist gave you? We might be able to do some trouble shooting right here before trying more expensive options.  |
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Post by sherri on Aug 18, 2009 18:56:39 GMT -5
Thank you so much for your quick response. i will try to find a way to post it. i guess t is all trial and err for everyone.I dont know if any of you have children, I have 3 beauties! I wonder if they should be tested as well. how does that work for them just having one gene? Is that enough for them to break things down? I try to be knowledgable about tricky ingredients, but maybe I have to watch even more closely or eat only what i absolutly know for sure is safe for now!
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Post by colormist on Aug 18, 2009 19:08:09 GMT -5
If they aren't showing any food aversion right now, then they probably don't have the full blown version which would affect their diet. Since you carry the gene, you'll definitely pass it on to them. They'll be carriers of half the gene necessary to have HFI. When they get around to having families, they should pay attention to their kids' food preferences as well. If your kids have kids with someone else who has the HFI gene, then they could very well pass it on. There's statistical probabilities behind this, but I'm too lazy to look them up right now. |
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Post by julienc on Aug 19, 2009 7:52:40 GMT -5
Hi Sherri - welcome to the boards!
I also had a pediatric geneticist officially diagnose me (at the age of 30). I think this is fairly typical - genetic issues tend to manifest in babies or children (since it is something you are born with), so I think it is common for most of the specialists to be connected with a pediatric unit. Did they do any other testing along with your DNA test? It seems that they should have checked your liver, especially once your DNA test came back positive for HFI. If you have concerns, I would certainly call them back and pursue more testing. I scheduled a one-year follow-up after my diagnosis. This was useful in that I had all kinds of additional questions that popped up in that time. Not that you need to wait a year - but a follow-up would be important and useful.
I have two children, and we haven't tested either of them. I didn't know I had HFI until my 2nd was born, and even then I didn't test her when she was born. I went through all the numbers with my geneticist, and the odds of her having it were so so low. Plus, I knew all the symptoms to look for once starting solid foods and had the "back door" number to the geneticist if there was a concern. It was obvious with my first born that he didn't have HFI since he showed no aversion and no issues whatsoever with sweet foods. We now know that my 2nd doesn't have it, either.
As colormist said, your children are carriers for HFI, just like your parents. That shouldn't pose any problem. It's good to pass on the knowledge of the condition so they are prepared in case they have children. We do have a case on this board where the grandchild of an HFI'er also has it. My geneticist told me the frequency rate of being a carrier - can't recall what it is, but I'm pretty sure it was less than 1 in 100 - so this is definitely a tough condition to get!! We should all feel so "special". ha ha ha
Again, welcome to the boards!
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Post by charlie on Aug 19, 2009 15:34:50 GMT -5
They talk about genetic counselling on a lot of websites about HFI, I've not really thought about this but I suppose can the faulty gene be picked up if a parent was tested, therefore could your children have their partner tested to see the likelihood of it being passed on. As far as I have read so far both parents have to carry the gene for it to have a 1 in 4 chance of it coming out in the child. I may be talking out of my **** about that but it would be quite interesting to know if anyone has had that done.
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Post by julienc on Aug 20, 2009 7:13:35 GMT -5
They talk about genetic counselling on a lot of websites about HFI, I've not really thought about this but I suppose can the faulty gene be picked up if a parent was tested, therefore could your children have their partner tested to see the likelihood of it being passed on. As far as I have read so far both parents have to carry the gene for it to have a 1 in 4 chance of it coming out in the child. I may be talking out of my **** about that but it would be quite interesting to know if anyone has had that done. I talked to my geneticist about having my husband tested to see if there was even a chance my kids could have it. He advised against it. He explained that it's very difficult to get conclusive results on the DNA test for a carrier. He went on and on explaining how the test works and how they look for the mutations, and the basic gist was that if they couldn't find any mutations from the test, that didn't necessarily mean he wasn't a carrier. And it didn't just have to do with the 12% or so genes that were lacking from the test - it had to do with gene sequencing and all kinds of things that I'm not able to explain here. I should have tape recorded our conversation. I believe Sarah's husband Mike was tested, so he may have more insight in this as well, and perhaps a different perspective. |
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Post by yw on Oct 28, 2009 13:08:34 GMT -5
So when I explain HFI to others (particularly long time friends/ family who know my odd symptoms throughout life of getting violently ill 'for no reason') they often ask so what should you do IF you get severe hyperglycemia. I tell them that I avoid fructose etc... and in past I just never knew what was wrong but learned to avoid the foods or drinks that led to problems. Basically just suffered through it. But IS there anything you can do to help mediate symptoms. I tend to crave milk sometimes but I don't know that it really helps.
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Post by colormist on Oct 28, 2009 16:01:03 GMT -5
The only real cure for alleviating hypoglycemia is eating. The problem (for me) is preventing myself from endlessly shoving potato chips into my maw. Straight up glucose foods will help alleviate the problem more quickly than eating potato chips--so perhaps the best method of attack would be a roll of smarties/rockets, then slow consumption of whatever food you're craving.
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Post by yw on Oct 29, 2009 13:25:30 GMT -5
Thanks. I did mean hypoglycemic. This helps. I always forget to ask the MD and then someone asks and I never am sure if anything I am doing actually is helpful or not.
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Post by colormist on Oct 30, 2009 9:34:33 GMT -5
If you feel better afterward, there's a good chance that you're doing the right thing. Lots of HFI relies on how you feel and how your body naturally gravitates toward things that seem confusing (e.g. pixy stix). Of course, if you eat 10x as much as you should--like I tend to do--then perhaps eating a little slower wouldn't hurt. (This is really just me trying to tell myself to stop eating so much food. My metabolism definitely isn't what it use to be.) |
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Post by charlie on Oct 30, 2009 13:52:45 GMT -5
The problem with having a dextrose / glucose based solution is that yes it does elevate the blood sugar but very quickly and then it will drop even lower so you end up with a yo-yo effect, you are much better if you have access to have something more complex carbohydrate such as Freds Crackers!! as it will give a slower but longer energy release. In an emergency though dextrose is good but follow it up with something else to sustain.
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