Opinions would be helpful!

[colormist]

Hmmmm... while you have quite a few checkmarks for HFI, other things lead me to believe that you have maybe not HFI, but a similar metabolic condition. And yes, you can get a negative screening for HFI while still having HFI. Last I heard, they don't have all the genetic markers identified yet.

So the thing with HFI is, if you ate anything sweet you would have a reaction similar to your reaction to honey. You wouldn't be interested in eating cake and would refuse soda pop. This happens with MOST of us HFIers on the forum. You would also have very obvious issues with your liver when the doctors ran any lab work. I ate a single serving of Funyuns and a day later my liver levels were six times above normal. My doctor was perplexed as to why I wasn't yellow. However, if you had been eating completely HFI-healthy for a couple weeks and had your liver tested (via bloodwork), it probably would have had normal results.

I'm hoping someone can come on here and give you a doctor recommendation in the area.

I'm also hoping someone will pop on and point out the other metabolic support forum. Given your symptoms, I wouldn't rule out HFI, but it sounds like you might have another metabolic issue with sweeteners. It could also be a complication with multiple diseases. :\

[hfimomof3]

Some of the symptoms you describe are consistent with HFI, for example vomiting after eating honey or soda. But given that you still enjoyed soda and cake enough to voluntarily eat it makes me think you might not have HFI. It is more typical for people with HFI to come to dislike the taste of sweet things. I suppose it's possible that because of your stressful childhood environment, you suppressed your natural distaste for sweet foods. Or, if the only available food at many meals was sweet, your desire to eat might have drowned the natural development of distaste. I'm not aware of any scientific evidence to support that, but it's not an area with a lot of research done (that I know of: I don't know the science literature exhaustively on this). The fact that your genetic test was negative is also suggestive that you don't have HFI, but, again, does not necessarily rule it out completely. Maybe you have a new mutation or a partially functional mutation? Your liver testing was normal, but was that after you had already eliminated fructose from your diet? Have you done liver testing when you were still eating foods that contained fructose?

It sounds like you could have a metabolic or digestive disorder, but whether it is HFI or something else, I am not sure. There are many other possibilities, from celiac (and non-gluten wheat sensitivity) to Chrohn's disease, to a food allergy. Others on this forum have talked about CSID (which I know nothing about).

What are you eating right now (last 2 weeks or so) and how do you feel? Have you ever kept a food diary? If not, do start one.

I would approach this in a systematic way. Write down how you feel at the start, everything you eat/drink, and how you feel afterward. Use language as objective and specific as possible (felt faint, felt tired, had a headache, vomited, itchy rash on stomach with raised red bumps, itchy red skin on stomach but no bumps, itchy stomach but no visible rash, etcetera), rather than "had a reaction."

It's also possible you have a couple different things going on.

I noticed you drink a lot of water. 4 Litres is 16 cups. That's a lot of water! Have you been tested for diabetes? What was the explanation if your diabetes testing was normal?

[hfimomof3]

So the doctors put your high water intake down to psychiatric causes?

How far did your celiac testing go? Did you do the endoscopy? Villi looking good? also no ulcers or anything like that?

You also mentioned high transferrin saturation. What did your doctors say about that? Could that be causing all these symptoms? Do they want to treat it?

I don't know what an anion gap is.

Your diet sounds a bit low on complete protein, do you feel like you're getting enough protein?

[hfimomof3]

It sounds like you have several results that are out of the reference range. Have your doctors called you to follow up on these? If this were me, I would want them to explain each result that was out-of-range, and why it is ok for my body to have this result, or, if it is not ok, what they plan to do to diagnose and treat the problem.

Good luck. I don't really know what you should do next but it sounds like you have some ideas.

[ukbill]

looks like original post has been removed?