New to group

[Findingnemo]

Hello all. I am new to the group. Have suffered many years with hypos and abdominal and flank pain, nausea, vomiting and all other GI related symptoms. I have been to the ER 11x and have been laughed at by doctors because I look fine and blood work is decent. I recently eliminated fructose from my diet and have had great success in the last 20 days.

For the HFI people, do you eliminate fructans? I see onions and onion family are a no no, but wheat products with no added sugar are ok?

I have been gluten free for 6 years, and can tolerate dairy just fine.

Also looking to maybe do genetic testing for HFI so any input on that would be great.

Thanks in advance!
Xo- findingnemo

[ukbill]

Welcome to the group.

I hope you can find help and inspiration from the forums on this self-help group.

Keeps smiling

[Findingnemo]

Thanks! I just wanted to introduce myself. I see now most of the answers to my questions have already been discussed in previous threads.

Thanks

[ukbill]

Everyone is slightly different based on where you live in the world and your past experiences.

Please feel free to ask any questions you like and the friendly people here will do our best to help and answer them for you

Sending you all the best for 2017.

You will not believe how good you will be feeling after a few months (6 or more is common) after going low Fructose!

[colormist]

Hi FindingNemo!
I think maybe our livers do a very good job at functioning even when dealing with fructose. My brother (unofficial member of the super-exclusive HFI club) is still eating fructose (avoiding sweets) and functioning fine. He has noticed that he feels better when he drinks German beer and Dominos thin crust pizza (versus sugary domestic and sugar-loaded pizza crusts), so he's making small changes in the right direction. He won't get a formal diagnosis because he'll lose his job in the national guard.

I think you'll find that you feel much better as you slowly remove the fructose from your system. It's amazing not being hypoglycemic and nauseated all the time!

To get your diagnosis (presuming you're in the US) you'll need a referral from your primary care physician. Talk to your doctor about the condition, give them your history, let them know about the hypoglycemia (hypoglycemia seems to make them take your complaint seriously), say that you've done a lot of research and that removing fructose from your diet has made you feel amazing and healthy. My doctor referred me to a geneticist, but they could refer you to any number of medical professionals. They might want to test you for fructose malabsorption, but make sure they rule out HFI first. The Fructose Malabsorption/Dietary Fructose Intolerance test is extremely dangerous for someone with HFI.

Other than that, it's pretty straight forward. I hear they can even test with a swab now and they don't have to take your bloodwork.

Good luck and let us know if you have any questions!

[Findingnemo]

Yeah. I see a new doctor in January. So maybe I'll take the info to him and pray. I find this board very helpful. Thanks everyone who has posted. Even if I have FM or something else entirely...it's nice to know there are other people out there who are like me. I'm in the Midwest so I could travel anywhere if I had the name of any GI who would take me seriously.

The last response from a physician was "sugar can't do that to a person, it's time to move on (to another doctor)." Blahhhhh!

[rysmom14]

Hi Findingneno! Welcome to the board! I hope that the Doc you meet with in January is able to help and listens to your concerns. I know getting someone to run the genetic test has been a challenge for some people. I'm so sorry that the Dr. said that sugar couldn't do that to a person. of course it can, or we wouldn't have this board! I have started to loose faith in the medical community, and I am part of it. I long for a Dr. to look a the person as an individual and not as a diagnosis where they lump everyone into the same group.

Also, there are any different types of people on this board, some think they have HFI, some have confirmed HFI. others have a glycogen storage disorder, or fructose mal absorption. The good news is, that we all share ideas and suggestions and you can take those and adapt them to what fits you.

You asked about fructans, and wheat. People with HFI should eliminate Fructose (found in all fruit and most vegetables) Sucrose or table sugar( found in tons of stuff and also sorbitol that is more of a concern in medications. the problem is there are a lot of sugars that also must be avoided like syrups and natural sugar.

Wheat should be avoided in the "whole wheat" form, and fructans are a combination of fructose and other things so they should be avoided as well. a very basic diet would include dairy ( milk, cheese, yogurt- all plain with no added sugars or flavoring, Meats with no broths, starches like pasta, big white potatoes, white rice. There are very few veggies, like canned greenbeans, spinach with no stalks, and mushrooms that are tolerated.

so I think cutting out the fructose and keeping a food log to what you are eating and how you feel will be very helpful. Even if you go to the new Dr. in January and they agree to test you for HFI, the results will take a while to come back, and if you feel better on low fructose, then keep doing that until you know.

Good Luck at your appointment. Let us know how it goes!

Rysmon14

[Findingnemo]

Thanks ryansmom! I want to correct myself that my labs are not always fine. They bounce around, LFT'S up sometimes, uric acid up at times, very screwy Urine analysis several times at the ER. Just my labs have been decent lately because I inadvertently lowered my sugar intake a few years ago (long story). Then really lowered my fructose recently to nearly nothing.

I have a food log and it is really obvious now that I look back. I just pieced it together (that it was sugar) 3 weeks ago. It's been right under my nose this whole time. I used to think that I was looney reacting to everything until I considered sugar. Sugar is in nearly everything in the US!

We are going to ask the new doctor for a proper test but we also are going to present my situation more in a global sense. It might be worth it to get screened for other errors in metabolism that fit hypoglycemia that responds well fructose elimination.

Does anyone else feel like they have problems with their Electrolytes? Particularly the balance of water and Sodium? I feel like after I mess up on the diet (I am still working on learning it) that I can't regulate my electrolytes, have to eat all the time and have kidney and abdominal pain and nausea.

[colormist]

I get crazy thirsty and a craving for salty potato chips after eating fructose (accidentally or intentionally). My guess is that those two ingredients play a huge role in flushing the fructose (or Fructose-1 Phosphate) out of an HFIer's system. I really like Smart Water. It's got electrolytes in it which either makes me feel better or makes me think I feel better--either one works for me! You can try it and see if you notice that it helps.

"The last response from a physician was "sugar can't do that to a person, it's time to move on (to another doctor)." Blahhhhh!"

Ahhh! This made me laugh out loud. Clearly not the doctor you need right now. Hopefully they don't have any patients with diabetes.

[ukbill]

Funnily enough I get days when I am uncontrollably thirsty all the time.. not only after eating some salty Gammon ham and chips.

Chinese food bought out usually did it I used to put it down to the high salt content (from all you can eat type places) however now I do not eat there now becasue Karen has noticed I am almost imposible to talk to for days after.. too brain fogged from all the fructose.

I also get Hypo if I get thirsty and work hard.

Although working hard without eating regularly or sufficiently will do the job as well

[jenn123]

I think I have noticed that my child is less thirsty and craves salt less when she does not sweat at night as much. The night sweats seem very linked to fructose. She is six months into the diet now and her night sweats, nightmares, teeth grinding have drastically reduced. Pleasantly, the strange smell that appeared when she began the diet has also departed. Yay ! The first six months on the diet she was a yo yo with very dramatic dips in blood sugars. It seems a stockpile was finding routes out of her body. Her body was working very hard and she napped more than she had in years.

[colormist]

That's great news, Jenn!

[ukbill]

Jenn123 As a child I was always going Hypo and carried around a food pack for emergencies wherever I went. much of the food pack was what today I would consider unsafe but at the time anything that gave me a quick boost was worth having.
I also did not understand the after effects of Fructose brain fog.

If she exercises much or is going through a growth spurt in her teenage years keeping her blood sugar level will be quite a task.

Hard boiled eggs, cheese, bacon cooked till its crispy (it will keep for days) as well. A small bottle / carton of long life full fat milk is a good idea as well as a quick safe boost. White HFI safe bread and real butter is very good as well.

Please do not resort to feeding her Glucose Dextrose based sweets because they are all too variable in contaminants which really can cause a lot of problems.

IF she is too young to enjoy real coffee, tea is very safe and there are 100's of flavours.. Avoid the fruit based ones of course, Lemon tea is perhaps the only exception.

Mint teas are great when tummy gripes are getting at you too and is very refreshing if cooled to ice cold on a hot day.

Hope this helps?

[jenn123]

Thanks Bill. She is into sports a lot and it has been a challenge to strike a balance. Tonight she had cheese and crackers to munch on throughout her practice. She was in good shape when practice finished so thank you. She loves black and green teas. I will search out a mint one that only has mint, or try not to kill my mint plants On a regular basis. 😊😊

[ukbill]

A small pot of stir fried rice with prawns , tuna, bacon, Ham. spinach, mushrooms etc you get the picture with a little Soy (Kikkoman) will supply a quick digesting power boost and the salt in the Soy might help with electrolyte balance?
Tinned fish in brine (salt and water only) or sunflower or olive oil might help too. Tuna or sardines are good on toast or crackers.. makes you breath smell a little but good for protein and iodine.

From experiance milk and heavy exercise do not mix well unless the milk is washed down with a little water at the end. I always carry a bottle of sparkling spring water which in the UK is safe (so long as its not a "flavoured" one)

So say a cup of milk is OK but not much more.

I also used to make packed lunches for myself. I made myself puddings which were usually rice pudding (with added cream) or blancmanges or custard made from custard powder (which in the UK has no added sugar) with again a little added cream to boost the energy content.

I also made tapioca pudding and creamed rice pudding. For special meals I make Panna Cotta but make mine with vanilla and maybe a tiny touch of a spirit (scotch whisky) while making everyone else's as normal.

It feels nice to occasionally be able to join in with the sweet course instead of cheese and biscuits.. of which I have had enough for many lifetimes!

Usually I load up with so much main course I cannot manage a pudding anyway!

[ukbill]

Or a small pot of pasta with a soft cheesy sauce?