I thought it was HFI (Alternative Diagnoses)

[meaniejean]

I was wondering if this could be one of those threads that gets pinned to the top of the list? I think it might be helpful to people sensitive to fructose who are trying to figure out what is going on.

So, Cal has been diagnosed with Familial Mediterranean Fever, Fructose Malabsorption and Hashimoto's Thyroiditis (Autoimmune hypothyroidism). He takes colchicine and is now up to eating one fruit per day and unlimited vegetables (even corn and carrots)!!!

We are still waiting to find out what is going on with Sawyer, but we assume he also has FMF. So far he does not seem to have a thyroid problem.

Since fructose causes inflammation in the body even in "normal" people, it seems it can exacerbate inflammatory disorders. Whole fruits do not seem to cause as much inflammation as sugar and HFCS, etc.

If you thought you might have HFI, but have been diagnosed with something else, please share here.

Best,
Sandra

[anastazya]

OK...went back to the doctors today...so that's why this is posted here. The Fellow and the Dr both told me I could not have HFI because I would not have lived through childhood. They said I would have been very sickly and would not have done well. So I guess ear aches monthly doesn't count.

So, they told me I have sensitivities to: lactose, fructose, and gluten. They said I had a super sensitive and over reactive gut. They gave me a script to help me eat the foods I want.

The problem is I don't want any foods...other then spinach.

Two questions:

1.What do you think about this?

2.Where did you go to get genetics testing for HFI?

Thanks,

Sara

[colormist]

I think we've all heard the "you can't have HFI because you would have died in childhood" line. Bad doctor. Sounds like you need a new one if they're not even going to entertain your "crazy self-diagnosing ideas".

I asked my primary care physician for a referral to a geneticist. Thankfully I live close to a major university (Michigan), so they had run into one other patient (a baby) that had HFI. They took my bloodwork and schlepped it off to Texas (Baylor, I think) to get it tested for the HFI gene.

The more of us that come out of the woodwork as confirmed HFI (as adults), the more doctors will be exposed to adult HFIers, the more they'll actually think to test for this rather than giving a random pill to treat the symptoms.

[anastazya]

The sad part is this is a GI doctor at Mayo. Will try to convince my allergist at Mayo to get my blood tested for the HFI gene.

If not at Mayo, I'm 1 1/2 hours from Madison Wisconsin. Maybe they could test it there...

[anastazya]

Thank you Colormist. Glad I'm not the only one who hears these things.

[ukbill]

I have just found this on the CLIMB web site.. Fructose 1,6-Bisphosphatase Deficiency

I do not know who it was but someone mentioned high lactate in blood after Fructose testing.. it could well be this www.climb.org.uk/IMD/Foxtrot/Fructose1,6-BisphosphataseDeficiency.pdf

If anyone can find the posting and message the person, it may be useful information to them?

[meaniejean]

ukbill,

It could have been me. My lactate doubled during my fructose test. It never became abnormal, but I thought doubling of lactate was a little weird. Especially since I was supposed to be "malabsorbing" the stuff. How can I malabsorb something and still have it effect my blood like that?! I'm still not sure I don't have FDPase deficiency. My GI diagnosed me with it, but I never got a confirmation from (a correctly carried out) biopsy and don't think I have a huge deficiency if I do have it. FDPase deficiency does not involve fructose aversion and requires a low fat diet and frequent meals. Fructose is tolerated pretty well except when sick or fasting, though some can be very sensitive.

My household does pretty well on low fructose, low fat and low purine diet - basically a very strict gout diet with little fruit and no sugar. But, that diet is REALLY restricted. With colchicine, Cal is able to handle a much more well-rounded diet and has no joint pains and only a few small abdominal/fever flares.

Fat is the biggest issue for us and is one of the things that always puzzled me when we were following the HFI diet - olives?! tuna?! Fat is way worse for us than sugar or fruit. But, sometimes we have issues even when we follow our diets. This is what led us to explore issues that aren't completely related to food. Sometimes I have had "flares" after stressful events - liver biopsy, child birth, marathon, etc. Sawyer has had flares after being at the beach, Calvin after having a cold. Since my sis and bro also have similar issues, I'm guessing we all have FMF.

-Sandra

[ukbill]

I hope you find an answer soon.

It just rang bells when I read it and I started wondering?

I am not sure if the reaction to fructose test would give high Lactate if you have FMF?

High lactate by the way can cause pain in a similar way to gout pain. It would be like getting muscle cramps (stitch) after running but all over your body.

Best of luck with getting a good diagnosis and seasons greetings