FM diet vs HFI diet

[FMmom]

I'm not convinced that this FODMAP diet is the best plan for Kaelin.

I'm curious about the HFI diet for those who actually have FM. Do you follow both plans? For instance, the Boston University HFI diet plan (www.bu.edu/aldolase/HFI/treatment/diet2.html) says that any bread is okay if it doesn't have fructose, sugar or sorbitol. Pasta is also okay.

That would be a HUGE plus to Kaelin's diet if flour is okay! She used to live on pasta and I rarely saw signs that it was bad for her. (Now that I know she can't have salicylates, I see that it was the few times that she's used tomato sauce rather the butter and cream I normally give her...)

What sweeteners do you use?
What is the best source for reading about the HFI diet?
How do you mesh the two plans?

[Charlie Arnold]

This is a good question. In fact I was thinking about renaming this board somewhere in between the two conditions.

I do think there is a grey area between the two.
Adults that develop FM suddenly can usually put it down to an illness or time in their life when their diet wasn't good and that triggered it. But those that show symptoms from the time they are weaned tend to suggest they have a different form which is much more serious and reactive.

So do they have HFI just not ticking the boxes completely.
The gene test isn't an absolute as it only detects 85% of mutations and you have two show two types of mutation I think to be positive. I need Fred from the other board in here, he will be clearer to us about it.
But if that is negative (was Kaelin ever tested for HFI specifically) then is it an undetected gene, or a problem elsewhere in the breakdown of fructose rather that the transport of fructose (as general FM seems to be).

In FM from what I can work out once the fructose is pulled clear of the intestines it is broken down ok and so doesn't cause any further symptoms.
But if another step is failing further on then you will continue to react. I certainly tend to notice a delayed reaction in Megs sometimes up to 3 days later, only if it is a high load do we get the instant feeling sick and vomiting and signs of hypoglycemia. So we need to work out where the next error is and why.
Maybe it is therefore necessary for invasive liver and bowel biopsies to show us where the fault lies.
But that is very risky on an already reactive digestive system.
But if it isn't done while they are reacting then will it show up?

So which diet? If you aren't going down the testing route then a process of elimination is necessary. Its very slow, very tedious and you need to keep very clear diary to stop yourself from hallucinating. Gradually, bit by bit a safe diet should evolve that is somewhere in between that may just work.
Wheat, the reason the FM diet excludes it is because of the fructose chain in the fructans. Now, I wonder if the very reactive will still react to this but others will not, it is something I need to look into a bit more. I do think Meg has better energy on days she doesn't have wheat but then is that something else better that day. I just don't know, I need to do a clear elimination test sometime on her for it again.
I do think, the more we all ask questions and put our collective sensible heads together the better understanding we will all have and may find there is a whole new condition that our kids have - a very frustrating one.
But while they are still reacting so much the HFI diet has got to be safer, have you popped onto the www.hfiinfo.proboards.com to check that out. It does have alot of good advise on it too. But basically everyone seems to base it on the boston diet. Having said that hang on, I have a full sheet on it from Britain which I will email you too.

Good luck on Tuesday, we are up in London too that day - spooky thats the second clash of appointments. Keep a clear head, write everything, and I mean everything down in a list of her symptoms and give them a copy. I don't know about you but my brain just goes to mush as soon as I sit down in the hospital room.
I'm going to have lots of time to do some researching tonight as Meg is having a sleep deprived EEG tomorrow, so we are up all night yippee.. She has to be as reactive as possible so tired and hypoglycemic should do it...... and I'm loading her with as much fructose as I dare as I'm sure they are triggering seizures.

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