new to board - questions

[gretchen]

Greetings! I discovered this discussion board over the weekend, and have spent almost every free moment since then reading over the posts. I've learned so much already, and I recognize so many of my symptoms in what you describe. It's so incredibly wonderful to find an online community of people who experience something similar to what I do, and to learn from your collective experiences.

I'm not sure if I have HFI or FM or something related, but I definitely have trouble with fructose, and I can trace this back to my childhood. I get horrible low blood sugar not long after eating foods that contain more than a very small amount of fructose. These are especially prone to happen when I exercise, which is such a bummer and makes me afraid to be as active as I'd like to be. I also get terrible gas and bloating from eating foods with more fructose than glucose, so I was thinking FM at first, but the severe blood sugar crashes make it seem more like HFI...

My main issue now is what can I eat. The irony is that I usually eat a vegetarian diet with lots of fresh produce and felt like I was being healthy by doing so. I can't remember ever having a day when I didn't eat at least some vegetables. This fall I finally realized that I don't do well with fruit, and I cut it all out and felt so much better. I went for four weeks on what I considered the least amount of fructose I could, which probably came to around 2 grams per day between the steamed spinach, collard greens and brown rice I was mainly relying on. I got to a point where I felt better than I can remember feeling in probably my whole life.

Then I thought perhaps I had recovered (I hadn't learned about HFI yet) and could add a little fructose back into my diet, so I ate a few sweet potatoes, and wow, did I feel awful again really fast. It's been five days now since I had my last sweet potato, and I am still getting low blood sugar and feeling ravenous and off balance. Sigh. Reading here I now know it can take a while to get the breakdown products of fructose out of my system, so I'm just continuing on and hoping it won't be too much longer. I'm trying to drink a lot of water to help flush things out - do you think this helps speed up the process?

I actually bought some plain yogurt and white rice tonight and had those for dinner along with some sheets of nori seaweed (I can't find the sugar content of nori or other seaweeds, but they don't taste sweet to me at all. I'd love any info that you have about that.) I also had some psyllium powder with chia seeds in water to hopefully slow down the absorption of the white rice and help avoid getting LBS tonight.

I've been eating a vegan diet for a couple years now, but I remembered that yogurt always worked really well for me in the past, and I'm wanting to try to go as low in fructose as I can right now. Once I feel recovered, I can slowly add things back in to find what level of fructose I can tolerate (somewhere around what I was doing before the awful sweet potato experiment I'm guessing). I do tend towards really high cholesterol levels, and these definitely respond to my diet (ie, animal fat and protein make them go up in an unhealthy way.) But I figure that in the short term a little dairy fat is the least of my worries. I can't eat gluten (autoimmune reaction) or potatoes (lots of inflammation). So that doesn't leave a lot of food options for me. I did really like the white rice tonight, and I think that de-germed corn might also be virtually fructose free, correct? Any thoughts about millet, teff, quinoa, amaranth and buckwheat? Should I focus on refined grains right now? I don't know about beans yet. Any kinds that are especially low in sugar or work well for most people?

Besides any ideas of foods for me, I'd love any tips to getting through this reaction time as soon as possible. Thank you so much in advance for any suggestions!

[charlie]

Hi Gretchen,

welcome aboard, and well done for taking the time to read through the board before posting to get some background info (sorry that sounds really patronising but it isn't meant to be).

Unfortunately in this modern world we have drummed into us what is a healthy diet especially in britain there is the campaign started a few years ago - you must have 5 portions of fruit or veg a day and eat wholegrains etc etc. Well yes for most of the population that is true but not for fructose related problems, about which more and more is now being learnt

so throw away all your old recipe books and ideas and start again, start basic too, I know its boring but you will feel so much better for it you can then start seeing the wood for the trees. White rice and grains are better as wholegrain has higher fructose. Forget all fruit and veg and sugars for a while, stick to meats, fish, proteins basically.
If you suspect FM, and there seem to be lots of variants of that depending on what triggered it ( born missing a protein carrier or a sensativity as a result of poor diet) then you do need to avoid wheat as you are anyway and legumes and soya.

Can you tolerate milk, that seems to be the best thing to get you through reactions, if Meg is reacting she drinks gallons of the stuff. I've just spotted your concerns about cholesterol but as you say, get yourself sorted before worrying bout that, if your digestive system is working better then it will work more efficiently on everything.

On the fructose malabsorption site I have posted about how to do an elimination diet, may be worth a look at for diagnostic purposes, its what I did on Meg, its long and its boring - well the post is too but the process is!! but it may well give you some clear answers.

Have a browse of the recipes section too for ideas.
You just have to think for now, keep it simple, it will be repetitive but you will feel sooooo much better its worth it.

Good luck

Charlie

[gretchen]

Hi Charlie, thanks so much for your reply. I so appreciate your posts and all your support of everyone here.

I don't care about boring! I just want to feel good. And this morning after my dinner of white rice, yogurt, nori, psyllium and chia seeds, I felt amazing. I woke up before the alarm, refreshed, energetic and in a great mood. I was more flexible for my morning yoga practice and had great energy walking in to school. I almost wanted to cry, it was so wonderful to actually feel good! So I'm doing the same thing for breakfast.

Can you provide a link to get to the other board that you started for FM? I'd love to go and read there too.

Have a wonderful day!

[colormist]

Gretchen,
Your diet is making me cringe. I seriously hope you're avoiding all fruits and most vegetables nowadays. Also, but sure to read all food labels. If you food is prepackaged, then you need to read the ingredients list. Even unassuming things like poultry and tinned fish have fructose in them.

Contrary to what Charlie said about throwing away old recipe books, I would suggest the opposite. Keep them and modify them! I make notes and edits in all my books. There are some really good recipes that you can make, it just takes a lot of careful modification. I usually look for savory recipes and edit out tomatoes, onions, and carrots. If a recipes is a sweet one, then I just ignore it altogether. A good rule of thumb is if you can find a recipe that only requires three substitutions/omissions, then it's a good one to try.

[gretchen]

Hi Colormist,

My old diet is making me cringe now too! I've been really struck by how everyone else here intuitively knew to avoid fructose, whereas I didn't connect my low blood sugar episodes and general malaise with it and instead wanted more sweets to get my blood sugar back up. God, my poor body. I almost always felt just terrible. Thinking back now to all the different types of diets I tried in trying to be able to feel relatively okay and function, I now see why certain ones worked while they did. This explains so much.

And I'm still finding it very difficult to wrap my mind around the idea that vegetables can be bad for me. It's like it was drummed into me and I just can't imagine life without some steamed leafy greens. I've cut way back and I'm eating some sea weed now, so that's making me feel like at least I'm getting some minerals and vitamins. Why did it take me this long to listen to my own body instead of all these supposed experts?

Right now I'm just eating very simply to try and get a sense of how much fructose I can handle. Once I get a baseline, I'll probably get a little more adventurous. I don't mind eating plain, bland food, as long as it's satisfying and makes me feel good. I can do other things for entertainment, lol.

[esmee]

Hi Gretchen,

I've been thinking about what you said about the fact that you did not intuitive know that sweets were the problem. I really did not either, though I did not particularly like purely sweet foods. I wonder if it depends on which enzyme we are either missing or are low in? I also wonder if we can tolerate some fructose because we are just deficient, rather than having a total absence, and it does not make us out right sick upon ingestion, then maybe we continue to crave it just like we would wheat, that it is somehow actually addictive. But once we figure it out, and get it totally out of our diet, then when we reintroduce it or take it by accident in even a very small amount, perhaps the negative response to it will be more strongly negative like it would be with wheat or another addictive food once you have detoxed from it. Just a thought...Also, I think Tammy's daughter Regina never had an aversion to sweet foods, because they never made her sick, but she was having neurological problems and failing to gain weight and grow normally.

[tikitavi]

I agree with what Charlie said about milk helping. When I was visiting family and accidentally had some sugar (honey ham - argh!!!), a glass of milk helped me, I was really surprised but I felt better right away.

Wow, you went _down_ to 2g fructose per day? Wow, I would be so sick from that. I can't handle much more than 100mg!

[colormist]

Gretchen,
About being vegan, I know you don't want to hear this but I don't think it's a great idea for HFI (presuming you have HFI). My sister-in-law also had horrible cholesterol issues and ended up going low-carb (then later she switched to vegetarian) to get her cholesterol under control.

I do not like eating meat. It makes me very depressed and sad to even think about it, but I also don't want to only eat only grains and dairy with the occasional side of spinach or green beans. I seldom eat beef (maybe once a month) and try to eat poultry or tuna at least once a week.

It's very hard given our restrictive diet to be picky eaters on top of being fructose free. I really hate fish. It makes me gag. I keep trying to eat it though because I know it's one of my few options of safe foods.

Beans all contain fructose. Every now and again (maybe once a month) I have a small amount of black beans in a quesadilla. I have also been known to eat kidney, soy, and lima beans. They are all unsafe, though. So don't eat them very frequently and be sure to only have very small portions. Don't eat them if you're experiencing hypoglycemia. Don't eat them frequently.

And about some of us knowing we knew that sweets were the problem. I knew to avoid things, but I kept trying them. I wanted to be normal. Instead of listening to my body, I would still try to eat cake, candy bars, ice cream, and drink pop. I remember my mom learning about hypoglycemia in college and telling us what she should do when she had a episode. She said we should eat something sweet. Shortly after learning that, I had a hypoglycemic episode and decided the best option was to eat a spoonful of sugar from the pantry. My instincts were "WHAT THE HECK ARE YOU DOING?!?" but my brain was all like, "Dude! Chill! This is what the doctors say we should do. We'll feel better, trust me!" I don't remember what happened after that (I probably drank some milk to get that awful taste out of my mouth), but the incident was traumatic enough that I remember it 20 years later. That wasn't even some friend or family member forcing me to eat something I know I shouldn't. That was me, being convinced that other people knew better than I did.

[gretchen]

Colormist, I'm wondering the same thing. I don't want to eat animals, but if fructose is making me sick, I don't know how I can eat a healthy balanced diet without having some animal foods. The fact that I felt really good going down to a very low amount of fructose (for me - I know it must sound shocking to you Tikitavi, and most others here!) indicates that I was on the right track. And the fact that I felt awful pretty quickly when I added more in also tells me that this is really an issue for me. And you and UKBill both wrote that you feel better and better the more fructose you cut out of your diet. I think I've just been used to functioning as well as possible while eating it, so I don't know what it feels like to be totally free of it.

I'd at least like to try a close-to-zero fructose diet for a while to see how it feels. I've tried low carb diets before and they made me feel terrible. But the option of adding in white rice to the fat and protein might make a huge difference.

I guess if it comes down to me or the animals, I'd have to choose me. When I tried eating animals for a few years a while back, I just told myself that I didn't design my body, God did. And if the only way it can thrive is eating animal protein, then who am I to question it?

And Esmee, it makes sense to me that if my symptoms were so delayed, and my main issue was having low blood sugar crashes, then sugar would bring my blood sugar up temporarily, so I wouldn't connect the sugar with the problem. I never wanted fruit when it happened either, but usually starchy and salty things. But even without the innate aversion that everyone else had, I can tell that it's having a terrible effect on me. And now that I'm not eating very much fructose, even vegetables that have a faint sweet taste are starting to repel me.

[tikitavi]

I guess if it comes down to me or the animals, I'd have to choose me. When I tried eating animals for a few years a while back, I just told myself that I didn't design my body, God did. And if the only way it can thrive is eating animal protein, then who am I to question it?

I was vegan for many years too (I think seven years, in my 20s)! But I was a weird vegan. I didn't eat much in the way of veggies or fruit (just naturally avoided them). My friends would make fun of me, calling me "The Vegetarian Who Doesn't Eat Vegetables!" Mostly I had a lot of homemade seitan (I am not celiac) and a variety of grains such as millet, quinoa, teff, and some pastas. Which looking back, is all very low in fructose, actually! So I actually was as low in fructose as I am now! Wow, I didn't realize that! I would make simple sauces with oil and sprinkling of nutritional yeast or parsley.

Still, I feel much better now that I eat meat. I don't eat a lot of meat, but some. There's a need for B12, taurine, carnitine, choline, etc, which I foundd just really hard to get on a vegan diet, let alone a superlow-fructose, vegan diet.

I've come to the same conclusion as you. We are as nature created us, it is difficult to defy our nature and thrive. So I try to get the most "ethical" meat that I can. For a while I purchased wild-raised buffalo which is field-harvested, so that the animals lived a good, natural life with their families intact. The field harvesting is done by a Native American group who do traditional rituals beforehand to respect the soul of the animal and give thanks. I even watched the video that they provided of the entire field harvesting, and I was actually very impressed. I thought "That's the way it SHOULD be".

Lately I've been trying to support our local farmers, so I've been buying 100% grassfed locally raised beef and dairy. The cattle live outside and eat grass or hay all year, and they have a good natural life. I've gone to the farm, seen the beautiful pastures and the healthy, happy animals, and met the family that raises them (now in its 7th generation!). I know that they have great respect for their animals and treat them with great care.

I also eat organ meat too, for extra nutrition, but also because I feel that it is most respectul to the animal.

So although I wish I didn't have to eat meat, I feel like this is an ethical way to do it. :shrug: And I do feel better, my skin looks healthier (everyone says I look younger now that I'm 40, than I did then in my 20s!), and I have to admit that I do enjoy my meals very much more now too!

[esmee]

hi tikitavi

thanks for sharing your story about being vegan. i am of the same mind as gretchen and WANT to be vegan, but am really not sure it is possible to get all my nutrients on an HFI-safe vegan diet. i was vegan for 13 years (got sicker and sicker--i did eat fruits and vegetable), then went back to animal products off and one for the next 10 years. my two best periods were when i lived off of goak milk yogurt and raspberries for two whole years (nothing else) and then raw grass fed-beef, olive oil, and raw greens for 2 more years, then tried avocado and greens for 8 months but felt like i was missing something, then decided to try a low-fat raw vegan diet (extremely high in fruit) and just about did myself in, but it got me to this forum and a proper understanding of what is wrong with me (finally!). Do you have a contact number for the wild raised buffalo? Was the company located in Texas. I lived in Austin for a short while and met a man at a farmer's market who was raising and harvesting buffalo exactly as you describe. I wonder if it is the same person?? I am not quite ready to make that leap yet, but would appreciate the contact information if you have it.

esmée ♥

[tikitavi]

Sure, here's the buffalo info, they are in S. Dakota:
wildideabuffalo.com/
I really like all that they are doing with restoring the Great Plains and the ecosystem!

[gretchen]

Titikava, that sounds like such a cool group. How awesome that they are doing that, and it's great that you support them. If I start eating meat, I will definitely seek out local, sustainable, pasture-raised animal foods too. I'm fortunate to live in the san francisco bay area, and there are many options for me here.

I actually bought some goat milk yogurt and had some yesterday and today. I know it worked well for Esmee for a long time, and it's delicious and digested really well.

Today was my first day of trying to eat absolutely no fructose, as opposed to just going "low" in fructose (a relative term, obviously.) I felt amazing! I was really late getting home for dinner, and it was so unusual to observe that I wasn't in a low blood sugar crisis mode like almost every day. I really wanted some spinach with my dinner, but I resisted. I just want to try this for several days to see what it feels like and get a baseline. Then I can add in a small amount of spinach or mushrooms and observe.

Titkava, do you eat any vegetables at all? 100 mg of fructose is such a tiny amount, and I'm wondering how you spend your "allowance." Or do you attempt to eat 0 fructose, and then the little bit that accidently sneaks in will hopefully be under your limit?

[ukbill]

Gretchen, I know where you are coming from with not wanting to kill animals for food.

I was raised on a small farm and most of my family were or are Vegetarian. Given 1/2 a chance I would be as well.

However I do not think I could live for very long on the list of vegies that I can eat.

I do not like animals being killed for me to live so I too try to buy meat from animals that have not been intensively reared in "factory" farms and buy free range eggs etc.

So at least the animal has had a pleasant life up to the slaughter time anyway.

Also I make sure that I cook the meat I eat and flavour it to the best I can so if nothing else I am getting maximum enjoyment out of the food some animal has died to provide me with.

It seems disrespectful not to get as much pleasure as posible.. although why now I think about it seems not very sensible.

As for mass produced burger companies where factory farmed animals are killed and then effectively just mashed up (very nearly whole) and burgers made from them.. (oh yes they really do mean 100% beef!)

Have you ever tried to eat a meat "patty" without all the sauces sweet buns and other stuff they put on them.. its like eating a piece of leather!

I do not make a habit of eating my shoes (unless I'm really hungry!) but I do not think they would taste any worse!

[tikitavi]

Titkava, do you eat any vegetables at all? 100 mg of fructose is such a tiny amount, and I'm wondering how you spend your "allowance." Or do you attempt to eat 0 fructose, and then the little bit that accidently sneaks in will hopefully be under your limit?

No, I don't eat any vegetables at all. I attempt to eat zero fructose. The little bit that gets in is from the refined wheat flour that I use (it has 100mg per 100g serving). However, I just found out here a few days ago that mushrooms are zero fructose, so I will be using them now!

[charlie]

This is always a hot topic so I will tread carefully - vegetarianism through not liking the thought of killing to eat.

Our original ancestors had to go out and kill their food, its how we are designed, we are omnivores. Nowadays someone does it for us and yes unfortunately in the quest for cheaper and cheaper sources of food speed and cost has overtaken welfare. I think that is slowly changing with peoples awareness, lets face it, as long as it was a decent price, tasted ok and was wrapped in cellophane for a long time people didn't ask how it got there - to the extent that schoolkids couldn't even identify the real animal things had come from. That is now changing and the more people shop diligently the better that will become. But "in the olden days" as Meg would say people reared their own animals, slaughtered them and fed the family on that, home grown seasonal produce grown in their garden and they were a hell of alot healthier that we are these days.

I think Walt disney has alot to answer for!!!!! We are humanising animals too much - They are food, survival, and necessary. we use a local farm for all our meat and it is delicious, I've got to be honest I like my meat too much to ever consider vegetarian, especially bacon sandwiches!!!! but I know the animals have a good life then they are slaughtered and into the food chain, I have a freezer full of half a pig and we knew him as a piglet and even fed him, and he is delicious now!!! Not trying to be offensive but that is how it is, if he hadn't been slaughtered for a purpose he would have rummaged about for years, got overweight, got arthritis like we do and then been miserable and good for nothing. He didn't think - oh no tomorrow my world is ending, they are going to kill me, he just hung around for the next feed. So if everyone used local sourced, decent stuff if they have a conscience about it then things would improve. I don't buy the cheap crap because I don't like the taste - or lack of taste rather.

So this is a roundabout way of saying, if your health needs it, and HFI does, you have to look at it differently and eat the way your body needs you to eat. If our ancestors had become vegetarian we wouldn't be here today.

sorry, hope I haven't offended anyone, and sorry to wander off the main topic but....... has to be said.

[esmee]

no offense taken charlie.

veganism is a modern phenomenon and is only possible because of modern farming practices (abundant food year round) and globalism (out of season food, especially fruit, year round). i also think that animals, as companions in our lives, have become increasingly important to us with the splintering of families, it is much easier for us to transfer our feelings for our cats or dogs to farm animals.

people always talk about wanting to live a "natural" life, but the only way to really do that is to return to our hunting and gathering days, lol! and those certainly were not vegan. i have gone back to both meat and dairy when i felt it was necessary for my personal health, and i would never judge anyone else for doing the same.

It is just so weird to discover that all the foods which are very healthy for 99.9% of the population are the cause of all our health problems. everything has been turned inside out and upside down. evertime i think i have it figured out, everything seems to get upended. i guess this is God's way of keeping me humble.

veganism is an ideological construct and it is a luxury of the modern world. if i did not feel bad about killing animals for food, and only listened to what my body wanted, i doubt i ever would have become a vegan in the first place.

thanks for your thoughts.

[charlie]

This is the thing with HFI, you have to throw away the modern rule book about healthy food but its no different than telling someone with severe osteoporosis and arthritis that to live a healthy life these days you must do vigorous exercise - it would severely damage their health so they just don't do it. Weird analogy I know but the only one I could think of.

To be totally honest I just don't get veganism, I can understand healthy sourcing of non-chemical foods but to limit that much just isn't in keeping with how we are designed to live. And maybe I just haven't met the right vegan but all the ones I meet are pretty miserable, unnecessarily limit their social eating habits and don't actually look particularly well - so whats the point?? It also seems to more the people with more money and time on their hands which raises the question.

Anyway, good luck with turning your food thoughts around, I know it took a long time for me to get the hang of it, Meg is into her 4th year of fructose limitation except now they have put her in this low fodmap diet I have to rethink again and just can't get out of my head that I am poisoning her giving her sugar and carrots etc. Well I may be we don't quite know yet as I am doing such small quantities until I get brave enough to up the quantities.

socially the limited diet is hard for her as she can't just tuck into whatever but little did she realise that she was the envy of her friends that she didn't have to eat the veg on her plate, and they all enjoy coming here to eat as they don't have to eat any!!!!!

[colormist]

I find the recent discussion about vegetarian/vegan diet with HFI amusing right now. I grew up in a family of farmers and hunters. As a result we had some more unusual fare in the fridge (rabbit, turtle, squirrel, deer, etc). I was okay with eating the cattle we raised, but less happy about eating the wild animals my dad shot--for one, they all tasted really musky which I found disgusting (and who knows how some of the jerky was cured). I also watched as my dad skinned and gutted 10 rabbits--throwing their inedible parts into a heat-stove. My dad (who would often force me to eat baked beans and other non-safe foods) would force me to eat the wild animals.

In my teens I proclaimed I was a vegetarian and would no longer eat any meat (I think in reality I still ate chicken and beef--just nothing he shot). My dad still considers me a vegetarian to date. He is surprised when I order a steak--but not when I eat poultry.

Anyway, I read an article yesterday about a vegan (from NYC) who was traveling around the mid-west. He would dine at restaurants located in stockyards, and places with "barbeque" and "fried chicken" in the names of the restaurants and then complain because they didn't have vegetarian option.

Not only was his dumbassery annoying, but it is extremely frustrating coming from a medically inflicted diet and putting up with dining out without too much of a fuss. I tend to obviously avoid dining at barbeques, japanese, and thai restaurants because I KNOW I will have some difficulty ordering safe food (the language barrier doesn't help). His article was three pages long and whined about a meat-based restaurant not having a vegetarian option--which was a lifestyle he chose to adopt.

I was seeing red by the end of the article. I have no idea why I continued to read it.

I'd just be happy if the ingredients list on my groceries were an accurate representation of the food I was about to eat.

[gretchen]

Hi All,

I'm not offended at all, and I appreciate everyone sharing their thoughts. I'm feeling like what Esmee described - all the things I thought were healthy may not be so healthy for me anymore, and it's just kind of hard to wrap my mind around it!

And I agree that it's a luxury to be able to eat a vegan or vegetarian diet, and I may not have that luxury anymore. But I always had an innate aversion to eating animals, just like most people with hfi had about eating sweets. I remember looking at the meat on my plate when I was a child and seeing everyone eating happily and thinking "don't they realize this is a dead animal on our plates? How can they eat it?" I was a picky eater and my mother could rarely get me to eat animal protein. I'd eat dairy, but not chicken or beef. And I grew up in the midwest in a family of meat lovers too! I don't know how that happened, lol.

But it doesn't feel balanced to try and eat vegan or even vegetarian while also trying to eat low fructose, so I'm trying to come to terms with it and seeing if I can get myself to eat some animal protein. I've already added yogurt. And after that, fish is the easiest for me, so I'll probably start there. It's just so far from my usual way of eating! I'd already gravitated to the lowest fructose options for a vegan and would eat mostly bowls of whole grains and steamed leafy greens and mushrooms with some nuts and seeds. Fruit was making me feel so awful, and when I tried some sweet potatoes again after a month or more off all sweet food, it was clear that it wasn't a healthy food for me either.