This is how my fructose testing went

[gerri]

Me: TO attendant 

Me: Is there any sulfites in the fructose

Attendant: Do you have epi pen 

Me:  Yes - but I am allegic to sulfites in it - anaphalatic 
        Do you have emergency services?
        Fructose makes me very sick
        Do you have emergency services?

Attendant:  No we don't have emergency services at this hospital
                  Why are you having this testing if you already know you react to fructose

Me:  I thought if you seen my diet - hear how I react - I would be sent straight for genetic testing 
        
Attendant:  NO we just administer this  test - the hydrogen/methane test -  maybe you can have doctor - add genetic test to lab requistion
                  NO we will not allow you to take this test - too dangers - will write that on requisition -   Send back to doctor

Tried to see doctor/secretary both away - no genetic test done 
       

[ukbill]

Hi Gerri Welcome to the site.

Yes we can almost all claim experience of similar situations. In my case I was not strong enough with the Dr's and they gave me via IV 150g Fructose.. after seeing the result of 150g Sucrose the previous day. Which is why I was most likely unable mentally to challenge the Dr's sufficiently. They managed to put me in a coma for a short time.. boy did they panic! not surprising given they did their maths wrong and I should have been given 15g not 150g

Your Sulphites problems are a new one to me although a few people on the site seem to suffer from this, I cannot ever say I have had a problem with them that I know about.

If I drink any wine no matter how dry it is I get an instant hangover really bad.. (a couple of teaspoons full will do it.) Someone who claimed to have HFI / Fructosemia but drank lots of dry wine.. (which is why I question his diagnosis) said it might be the sulphites in the wine.. (there were none) even Dry Wine has a significant Fructose load Yeast never removes all the sugars only usually removing about 60% leaving 40% remaining.

The Hydrogen Breath test is dangerous for HFI /Fructosemia people.. if your liver is already compromised (common in undiagnosed people) then it can certainly do lasting damage or be fatal in extreme situations.

If a person with HFI / Fructosemia gets a serious reaction usually the best advice is to leave well alone, provide plenty of clean water / hot tea (unsweetened of course) and safe fast digesting carbs (known safe plain white bread and butter, milk, cheese, omelette, pasta etc)

I have known of a case where a mother had given her HFI / Fructosemia child smarties (the small ones) which are made of unsafe Glucose but which are not contaminated enough to cause a reaction.

He was used to eating these. One day he went to an Aunties house by himself and was given a large bag of Smarties to eat.. the large ones.. which are made from sucrose.

He ate the lot and put himself in ICU where for 48 hours they tried to stabilize his blood sugars by giving him glucose via IV.. Glucose that was contaminated with Fructose and likely buffered with sorbitol.. eventually his mother thought to contact me.

She knew what I would say about feeding him anything sweet.. its a stupid thing to do to an HFI affected child.. I told them to stop trying the help him and making him worse let him recover naturally and after about 2 hours he turned the corner and stabilized slowly bringing his blood sugars back to normal.

So as an adult you can go prepared if that sort of "challenge test" is required. Although not really needed now we have Genetic testing for the Genes responsible.

Anyway back to the plot..

What are your symptoms? What makes you think you might have HFI / Fructosemia?

[colormist]

Gerri,
I'm really glad to hear they turned you away once they heard that you react to fructose. They should definitely not be doing fructose challenges on people who have HFI. I'm happy they stopped the procedure and suggested a genetic test instead to rule out HFI. My experience with medical professionals has not given me confidence in their knowledge of HFI at all.

Pretty scary that they don't have emergency services on site. Good for your for checking. Not only could the fructose challenge test put you into a coma if you have HFI, but being allergic to sulfates!! EEP!

Keep trying. You'll get your genetic testing eventually. Just keep pushing them until they give you what you want! Don't be afraid to ask specifically for the test you want!

Good luck and keep us posted!