Soda

[jonb]

Hey people! I'm new to this site and newly diagnosed. What to eat and what not to eat was a bit confusing(and disheartening) at first but starting to get the hang of it and accepting also. So glad to see that there is a community out there like this one:) I have one question that might be a little strange. First of all, I love diet soda and have completely given it up after my diagnosis. I read in another post that someone had a diet soda they could drink safely? Could someone be so kind as to tell me which one? I'm from Norway so it might not be in the shelves here but I'm ready to get my heart broken:p

[charlie]

Hi Jonb,

Glad you found us.

I think it is Tammy's daughter that can drink diet drinks. My daughter can't as she reacts to artificial sweeteners but that is a whole different problem.
Sorbitol is a sweetener to avoid but aspartame should be ok, also sodium saccharin.

The diet is very confusing as doctors and dietitians just don't know about it, but hopefully you should get some good ideas here.
Glad you are getting the hang of it, the more you stick to the diet the healthier you will be

Good luck, hope you find your drink.

Otherwise we make homemade lemonade with sparkling water (we have a sodastream), half a lemon juiced and a tablespoon of glucose powder.

[denverjay]

I believe Diet Coke is safe to drink, although I cannot stand the taste of it. I have not heard of any other sodas safe to drink.

[Tammy]

My daughter drinks diet sodas daily. Right now most all Diets are ok but I have read where Pepsi is going to change some of their products to use Splenda instead of aspertame. Coke has already changed some of theirs. So it means you have to start reading labels again to see what it is sweetened it. Splenda makes my daughter sick. Diet Root Beers are also ok. She doesn't like the fruit sodas such as diet 7 up or sprite. I don't know if this is due to it making her feel bad or she just doesn't like the fruit taste so we just avoid them.

I have visited Amsterdam and I have found both diet coke and diet pepsi there to be safe so maybe there is hope that it is also in Norway.

[Yetta]

Diet Coke and yummy preferred Coke Zero. I don't recall getting sick on it but diet pepsi tastes too sweet to me and so my sweetness aversion says ick. Be warned though that I read somewhere after I had been drinking it quite a bit that Coke Zero was made with Splenda. I don't think it is though because I can't tolerate Splenda, at all, but I can certainly be wrong because what I read online about Coke Zero confuses me and I can't tell for sure. In my just googled search it says aspartame and Ace-K (but also has 'natural flavors' listed which is always an uncertainty). Once I was diagnosed I went on very strict diet to very slowly adding in other foods and some are definite do not eats but I craved them (like blueberries and blackberries which I eat about 10-50 berries a week now). I tend to rely on 'when I added it back in after strict fructose free period I got sick or I did not get sick' as means of including certain foods.

[colormist]

Coke Zero might have different formulations depending on the country, but in the US it's pretty much solely made with Splenda. It even says so right on the packaging (my husband loves Coke Zero). Splenda is definitely not safe in the US for people with HFI.

Yetta, do you have a confirmed diagnosis? If you're able to drink Coke Zero (in the US) and are eating berries (which make me crazy sick), then I would think you might be more likely to have Fructose Malabsorption. Both berries and splenda will make anyone with HFI quite ill.

[Tammy]

Coke now seems to depend on where it's made by factory even in the same country. I have just found a Coke Zero and a Diet Coke both made with aspertame. In cans. Bottles seems to all be made with Splenda. It's very frustrating when you have to check each label.
Pepsi has now switched over to Splenda also so we stocked up on the old formula. I'm hoping some of the generics stay with aspertame or I'm going to have one upset daughter when her stash of diet pepsi is gone.....

[yetta]

I have confirmed dx. twice actually. I never had genetic testing though. I still have self-doubts because of my history/experience with MDs, definitely get hypoglycemic and now it says hereditary fructose intolerance in records. Here's a long version:


It ("something") was actually diagnosed when I was infant but my mom thought it was 'allergic to baby food' but chart says 'liver malfunction secondary to fructose, avoid all fruit sugars'...this was in 1974. It goes on to talk about baby food which is what confused my mom. I attempted occasionally to eat fruit for many years and got violently ill and my mother never warned me off when kid and offered me fruits too. I have some very strong aversions to things I don't even remember ever eating like honey and yogurt which I think are likely from eating them when really young and not remembering the actual eating of them.

Eventually convinced myself I was allergic to vitamin C (skip really long side story here). But, when I told a doctor this in college he made me feel like an idiot and I never mentioned it again. I finally got diagnosed "again" in what I thought was first time when I was working and a coworker noticed I avoided fruit and asked me if I had HFI. She told me about her father-in-law who had HFI. I took that info to a new MD who I was seeing for first time specifically because of what coworker told me: he was condescending and said something along lines of 'if you had HFI undiagnosed this long you'd be dead by now. it's probably an allergy'. My chart still has 'allergic to orange juice' in it from him.

Took me a while to get up courage to push for testing(I was such a coward then). That MD did a horrid test that almost killed me...well it made me so ill I was hospitalized..it was supposed to be the breath test but I didn't make it far and don't even know if they did the breath test part...I seriously only remember going into room and prepping and then waking in hospital feeling very well rested. They made diagnosis of HFI then (and did not mention infant stuff). They gave a whole list of things to avoid and sent me to the Boston website where found this group. I eventually went to a new MD...I kept getting residents which is why blew through so many MDs in those years and on first meeting I was telling him all this because he pulled allergies up first on computer intake form 'allergic to orange juice'. He noted after I gave my explanation that he never hard of HFI, but clicked some buttons and said it was in my records and that the diagnosis was 're-confirmed recently' but that 'it's right here in your childhood charts' which is when learned of the infant 'diagnosis'.

Maybe Tammy is on to something. I'm in US (Pennsylvania). I can drink a whole can of Coke Zero a time, not like with berries. Too many berries make me ill but I usually eat 2-7 berries a day (although sometimes I don't eat any of course but usually I do because I crave them (mostly on hot summer days: I freeze them.)). I start feeling it FOR SURE at 12 berries so never eat more than 10 per day. They are one of rare sweet things I crave. Mostly I crave salt. I was in Russia once and am super strict when I travel because who wants to be ill in another country! Diet Coke might have made me sick there: I was eating grilled chicken and drinking bottle of diet coke when felt symptoms and I felt it was the soda since I'd eaten same chicken in days before and not any soda before, but had no idea why that would be until just now. I thought it was because the soda must have been made in a local plant using local water.

[jonb]

Oh snap! Totally forgot about this.

Yes, I talked to two dieticians and neither had heard of it. I guess you have to see people who are more specialized or something. I discovered the diagnosis by chance really. Was testing for celiac since its rampant in my family (well, not rampant but pretty common) and I can't remember the site but it mentioned it and i tried it for a couple weeks and I felt like I've never felt before. Just this amazing clarity. I could actually think. So then I went and got tested and so on.

Thank you so much for the tips. Its really nice to have a little something something when you feel the urge. Something that you needn't worry is going to make you feel like crap.

[jonb]

Charlie, I look forward to trying the lemonade-thingy. Love the taste of that

[jonb]

Yetta, I was also sick when I was small. My mother and doctor just coldnt piece it together. So they just reached for the most likely diagnosis. Can't blame them though. Its hard to guess something not available to you. At the very least I'm happy that places like this exist and that we live in a time where information is spread so easily that virtually anybody can obtain this

[jonb]

Tammy, colormist, Ive tried diet coke here in Norway and it seems to be fine. Tried pepsi max but that didnt work out too well. Like the taste out the latter better but the coke is good enough. Will try zero soon, maybe itll blow me away