Does anyone else get violently ill

[vetster02]

I have tested positive for fructose malabsorption and lactose intolerance. After charting foods and attacks I can not tolerate fructans either. I feel like drs don't take you seriously am at the point that I am really scared of how bad my attacks could become. My belief is that most of the time hours after eating something containing fructose or fructans I will wake up during the night my heart racing I become totally soaked with sweat. I am not quite with it. I'll head for the floor or the bathroom many times throwing up followed by diarrhea our sometimes just one or the other. This lasts 1/2 hour to an hour I will lay on the floor till its over. Other times my body will shake and my teeth chatter. Major anxietyrunning thru me preceding some events.

Can anyone relate or tell me where to look for answers. Also I appear gluten sensitive and have an unidentified inflammatory issue. Tired of being sick tired of not sleeping tired of wife spread tendon pain but mostly GETTING VERY ANXIOUS ABOUT FOODS

[Arcss]

I have the same diagnose, lactose intolerant and a severe case of fructose malabsorption. I can relate to the heart racing problem and oddly eough it improved since I've been on my diet and sleeping on my side not with my tummy up. I think maybe you shoul consult with another doctor and explain your worries.
I too tested negative for celiac disease but seem to be sensitive to gluten.
After a few months of trial and error this is what it seems to work best for me:
- I always look at the ingredients AND the total sugar content AND fibre content (more than 2 or 3 g of fiber seems to cause a reaction)
- you can't eat table sugar, zero grams! No whole grains whatsover
- for breakfast I eat lactose free milk, corn flakes organic 35 g (no added sugar, 0,5 grams of total natural sugars per 100 g), or homemade pancakes with white rice flour (1-2 tbsp, organic corn flour (1 tbsp 1,1 g / 100 g total natural sugars), buckwheat flour (0,9 g/100 g of sugars) or quinoa flour (pauls choice quinoa flour is the only one i can tolerate 0 g of sugars) egg, milk and coffe, no sugar
- for lunch and dinner: beef, pork, chicken, fish (hake, squid), white potatos (no more than 150 g), white rice (check the total sugars content, some brands have 1 g of sugars and that is too much for me), rice pasta, biofair rice and quinoa pasta, parmesan cheese, 10 to 15 g of spinach or turnip greens, olive oil, sunflower oil, safflower oil, lactose free butter, white pepper, basil
- for snacks: organic rice crackers ( stay away of brown rice crackers, check the fiber and sugar content), corn crackers, flatbread with the flours I mentioned for pancakes, just mixed with water and pinch of salt, I put 2 slices of lactose free cheese ( again check total sugars, anything with more than 0,5 g/100 g causes a reaction), prosciutto ( no preservatives, just pork and salt), lactose and sugar free organic yogurt, eggs, organic cocoa powder
- I use chronometer to balance my vitamin intake and I've been experimenting with several multivitamins
- I downloaded the monash app to crosscheck information, but I don't use because I can't eat most off the stuff they say is fine
- I use a scale o keep track of the quantities
-I try to buy organic meat and other foods because my blood test showed an alergic response of my imune system and I've been trying to figure that out ( the doctor thinks its a response to the fructose intolerance, not convinced)
- I eat chocolate from frusano (no more than 15 g), wine ( 1 glass once a week). I've been trying frusano's corn sugar and rice syrup but it doens't suit me, I don't know why!
- also can't eat cornstarch, potato starch and tapioca flour or tapioca starch, don't know why!
I used to have abdominal pain when I first found out I was lactose intolerant and other syntoms for fructose, but I feel better now
I've been diagnosed by a gastro doctor and had an appointment with a nutritionist (this forum was a better help although I struggled quite a bit with the fact I couldn't have wheat and oats like HFIers)
I' hope you feel better soon!

[Arcss]

Forgot potato chips for snacks (ingredients: potato, sunflower oil, salt, 0,5 g sugars/ 100 g)

[vetster02]

Thanks for your input and suggestions. What kind of doctors are you consulting? I keep hitting walls. Blood work always says I'm fine body says otherwise. It is frustrating to not even be able to put a name to what goes on other than my attacks. My endocrinologist just called. I got excited because had blood draw yesterday and thought at last. An answer. Nope everything looks good ?. Next step is finding someone willing to draw hfi test. Keep up your good work and oil keep trying to stay clean

[Arcss]

I'm consulting a gastroenterologist doctor and nutritionist. I did breath test for lactose and fructose ( this one was very hard to do) , blood work and abdominal ultrasounds. I have to be on my diet for at least 6 months, no cheating. I can try to reintroduced some foods but so far i can tolerate only dark green leafs up to 15 grams only once a day, for two days in a row and stop for one or two days.
Best of luck

[vetster02]

When you get sick what are your symptoms?

[Oregon gal]

I wanted to let you know that the company Natera has a genetic blood test- called the Horizon test- (you have to ask to have them add on hFI)- if insurance does not cover it- the charge $100 max out of pocket. It is generally offered to folks as an option to screen for the most common genetic chromosal issues prior to becoming pregnant. When I found out they tested for HFI- I jumped on it- it was cheaper than most other options. My metabolic doc said that they test for the most common variants of HFI- but not all of them. This is how I was formally diagnosed. My only regret is not purchasing life insurance prior to having the test. With Obama care in the U.S., they cannot discriminate for preexisting conditions. The genetic counselor I met with said that life insurance companies may discriminate. My 31 yr brother is getting life insurance before his test (we know he's got it as well- he just needs to ability to monitor his liver and kidneys). Anyhow... Hopefully Natera is available where you live.