How much is okay?

[tina]

Hello Gang

I came across this board and tried to register, but to no avail (technical issues)... I am wondering if I could get some insight as doctors don't seem to be much help.

I have had a reaction to fructose, sucrose and sorbitol since I can remember... When I was a child I would get cold sweats eating candies like Starbursts and Skittles along rapid heartbeat, headache and fatigue.  My parents never thought anything of it, except that it was weird. (I remember these symptoms as well with hot dogs and hamburgers as a kid, most likely from the HFCS in the ketchup and buns).  Over the years, I am now 36, the symptoms grew and got worse and I am a lot more sensitive to a lot more foods and drinks.  In my opinion doctors do not know enough about these disorders and after years of feeling ill and tired, I have finally narrowed my problems down to fructose just less than a year ago. Although I know I had symptoms to them in my childhood.. I didn't know what I was having symptoms to - was it just sugar?  Was it an ingredient other than fructose?  Was it food coloring?  I am now at a point where my symptoms have been very dangerous as my hypoglycemia is pretty severe.  I remember about 10 years ago I had a half a glass of redbull/vodka (it was my first drink for the evening).  I started to go into hypoglycemic shock and was blacking out on my way to the bathroom.  My friend followed me and all I remember was hitting the floor and then vomiting in the toilet.  She told me that before I vomited I was convulsing on the floor.  She has since passed on, so I am not able to grab more details from her.. but these are the things that would happen to me and doctors just tell me to avoid those products I react to.  One of a major disadvantage I have is that I live on Maui and our health care system is lacking a bit.  I went to the doctor to see if I could get any type of testing to help diagnose me as I am concerned about kidney and liver damage.. my doctor had no idea what I was talking about and looked up HFI in his computer database.. he then sent an email to a doctor in food allergy on Oahu, who then wrote back HFI is rare and testing is dangerous and I should just avoid foods that I get a reaction from.. It seems pretty impossible to be diagnosed for HFI and I dont know if I do have it or not, but I just want to be sure I dont damage my internal organs anymore than I possibly have.  I get a severe reaction to HFCS and see that as my death sentence; so I obviously avoid it.  I went into severe hypoglycemic shock from a shot of Robitussin when I was sick and fell ill for a couple of days (thought I was gonna die!).  I get a reaction to cranberries, but its not bad if I eat small amounts.  Am I still damaging my liver if I continue to eat something in small amounts with fructose/sucrose or sorbitol as my symptoms are minimal?  Or does the liver damage only take place when I begin to feel the hypo shock coming on as an affect from the toxins my body is producing from too much fructose?  Should I avoid ALL foods w/any amounts of fructose/sucrose/sorbitol?

P.S. About 13 years ago I was in the hospital for 5 days from a bad kidney infection.. I also have chronic UTI's and take D-Mannose supplements 2x daily to keep this regulated.  I am starting to wonder if my chronic UTI's and/or kidney issues are related to my possible fructose issue?   I just started taking Milk Thistle supplements daily to help my liver out as a 'just in case'.

Thank you ALL in advance!

[fred]

Hi Tina

You already know many of the foods that give you trouble. So, why are you still eating them? The first thing is to eliminate the things that upset you and yes, very small amounts of fructose can cause big trouble if you cannot tolerate it. My limit is about 100 mg per day.

You can get a DNA test from Boston University and also other places that will diagnose HFI. However it does not yet cover all mutations. The other testing is a tolerance test where they give you fructose and then measure your blood glucose levels (which will Drop) over about three hours. They also may do a liver biopsy and perhaps a small bowel biopsy. This is a dangerous test because if you have HFI, the sugar you will take is pure poison to you.

So, why not just start eliminating foods with Fructose or Sucrose in them and see if it makes a difference to you.

Fred

[tina]

Thank you Fred!
Yes... the whole fructose thing is new to me since I just recently realized it was the fructose that was causing my symptoms. All of my life I never knew what was causing me to feel ill... but when one thing would cause my hypo symptoms I would then never touch it again; I learned slowly this way. All my life, I ate certain fruits, but got used to the symptoms.. sweating, headaches, cold sweats... I learned to eat small amounts as I am a health nut and a vegan and try to consume as many "good foods" as I can. I never knew about HFI or FM and just figured my symptoms were an allergic reaction of some sorts and if I could handle small amounts, then I should just eat small amounts. Now after some intense research, I was asking myself if I need to avoid all fruits completely. I do have food aversions towards breakfast syrups and jams, sweet specialty coffees, tropical/fruity drinks.. but I always figured this was because it was a junk food aversion lol

I started reading up on 23andMe and this looks interesting.. i went ahead and bought the kit.. I know it only tests for 4 different mutations, but I figured why not? It's pretty amazing to get this type of information on your genealogy history at such a low price Hopefully it will help diagnose my symptoms too though Thanks!

[tummyache]

23andme is good. But, unfortunately, it currently, because of political reasons, is not right now reporting it's health related genetic information, except in raw data form. Hopefully, soon that will be worked out. Boston U Dr. Tolan] or Baylor in Houston may be your best bet for genetic info. DNA testing if positive is Positive for HFI. If it is negative though, it is not considered diagnositic as there are many more deviations than the 4 currently tested for.

[colormist]

Hi Tina,
If you think you might have HFI, you should definitely be avoiding the things that make you feel bad--especially if you're passing out and have been hospitalized for kidney issues. From what I understand, the only way people with HFI can process fructose is by filtering out of their system through their kidneys. The other option is to just retch it back up, and if you're anything like me, you try to avoid praying to the porcelain god. I usually end up with kidney pain if I eat something at a restaurant or have a dinner at a family member's house. It lasts for about a day and eventually passes if I drink enough fluids. I've been having kidney pains since high school.

So, some bad news, you really can't be vegan and have HFI. I mean, technically, you might be able to, but I'm certain that's not healthy in the slightest. If you're interested in trying the HFI diet, I wrote up an elimination diet for people who think they might have HFI: fructose-free.tumblr.com/post/104074729605/hfi-elimination-diet Try this for a week--don't cheat. If your HFI-like symptoms have gone away at the end of the week, then you might be on to something. If you start to feel WORSE while on the elimination diet (and you have not cheated), then definitely stop.

People who have HFI cannot eat MOST fruits and vegetables as they all contain fructose. Some of us will have a vegetable a day, but rarely more than a portion size. None of us eat fruit aside from the occasional avocado or lemon wedge in our drink.

If you do have HFI, you're going to need to throw out all that healthy food education you've learned because it doesn't apply and will actually make you very, very, very ill.

Your doctor, no matter where s/he is, should be able to take a blood sample or saliva sample to send off to a genetics lab that tests for HFI. My doctor was in Michigan and sent my lab work off to Texas. Distance is not really an issue. The other two tests that Fred mentioned are more risky--but you only might need to do those if you have a negative DNA test. A negative test does not mean you don't have HFI. You could still have HFI and receive a negative genetic test because they do not have all the genetic HFI markers identified.

So, my advice to you, try the elimination diet for a day. If you start to feel worse, stop following the diet. If you feel the same or maybe a bit better, continue the diet for a week. After a week, please check back with us to let us know how you're doing. If you are feeling better, that's a pretty good sign you might have HFI and we have some additional information that can be helpful.

Also, if you do eventually get a diagnosis, I would LOVE to share your story on my blog. A story about a diagnosis that's acquired later in life is very important to share--most doctors have been shutting down patients that try to acquire a diagnosis later in life by saying they wouldn't have survived infancy without diagnosis and this is just not true.

[Tina]

Hi I'm so sorry, I havent checked back in... Here's my update: I did see that 23andme put a halt on their medical records portion of the dna screening... Although, I did it anyways. I wanted to get my raw data and see if I can maybe get a little bit of info with a 3rd party interpretation, like genetic genie ( I think is what it's called). Plus, I could use the family genetic background information, my dad is really excited about that part I also am going to try out that elimination diet starting today. My vegan lifestyle is flying out the window for a week, so this should be interesting I am concerned about eating dairy and meats after 10 years of not eating any, so I am going to eat them in very small portions and make sure I don't shock my body with those "new" sources of food. I'll keep a journal of everything I consume and check back in once I finish! Talk to you soon!

[Tina]

Update! .... oh man.. I tried the elimination diet for a few days and I was just feeling horrible... but, I feel it was because I hadn't eaten meat or diary for the past 10 years. I felt so sluggish and heavy and my stomach was turning. I tried.. although.. I am slowly starting to eat chicken now.. so maybe this can help me in the long run.
I got my results back from 23andme and took a look at the raw data... I for sure can say I dont exactly know what I am doing with it, but I am slowly learning this dna stuff little by little. This may say nothing at all, so maybe some helpful insight to the following:
I searched for ALDOB gene by its SNP Rs1800546 in my data. My results for the SNP showed I have the genotype CC for this gene. I have no idea what that means but by looking at SNPedia, SNP Rs1800546 Genotypes of GG are normal and genotypes versions of C and G provide possibility of HFI.
This may say nothing, or I could be reading this all wrong.. any insight?
Thanks!
Tina

[charlie]

Oh blimey, you lost me on this one, did they not give you a clear answer, maybe contact them back for more info on what it means.

However, as for your reaction to the diet, I'm not surprised you were feeling bad, alot do as the body is turning out all the toxins and goes into a ketotic state for a while. Also as you say you were introducing stuff it isn't used to . But if you stick with it, that may give you better answers as to what foods you are reacting to, just do it really slowly, only adding in things every other day. If it is HFI as soon as you add any fructose back in you will know about it.....

[winston]

Tina, you have to know whether you're reading from the plus or minus strand when interpreting the data. C&G are ambiguous. I believe your results say that you do not suffer from that specific mutation. CC should be normal in 23andme data.

snpedia.com/index.php/SNPedia:FAQ