Re: diagnosis of hereditary fructose intolerance

[Guest guest]

I don't think we've talked family history. My entire maternal family (now mostly

long gone) had a strong history of undiagnosed/unknown digestive issues,

diabetes, and liver problems. As an infant I was diagnosed with a generic

" failure to thrive " diagnosis and " allergic to everything " - including breast

milk! Probably because my mom had a ferocious sweet tooth and was poisoning me

with all the fructose she ate.

I was diagnosed via hydrogen breath test and elimination diet. The gold standard

diagnosis is a liver biopsy, but it seemed unreasonably risky when either way,

the treatment is eliminating fructose from the diet. Kinda like how you feel

about adrenalectomy, when MCBs and DASH work

If anything, it's UNDERdiagnosed or erroneously diagnosed as lactose

intolerance/celiac disease. Which often go hand in hand with it, but they aren't

the main problem.

---msmith1928

45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, supine aldosterone

28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia; no HTN meds; current meds are 20MEQ K 3x/day, singulair 10mg,

norethindrone .35mg, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg when

needed; low sodium, fructose- and grain-free diet; known drug allergies include

PCN, sulfa, tetracycline

> > > > > >>

> > > > > >>

> > > > > >> msmith1928,

> > > > > >>

> > > > > >> I am afriad that I don't have much to offer you. The GI doc

> > > > couldn't find anything to blame for my bloating issues so he ended

> > > > up giving me an antibiotic that flushed out the GI tract. I am

> > > > taking asodopholis and so far so good (except for today of

> > course).

> > > > The idea was that my flora was out of wack and I could have had

> > bad

> > > > pockets in places with imbalance. Sugar would definitely set me

> > off

> > > > and processed foods. Going to a potluck was total russian

> > rollet. My

> > > > PA issues have just shown up (at least the low K and high BP) in

> > > > November last year and I have been having the digestion issues for

> > > > 15+ years.

> > > > > >>

> > > > > >> I have actually had a bad day of bloating for the first

> > time in

> > > > months. I am so hoping it isn't from the eplerenone. I have only

> > > > been on it for a couple of days. That would really suck.

> > > > > >>

> > > > > >> Assuming you have been tested for celiec?

> > > > > >>

> > > > > >> I am so sorry that you have been going through the disgestive

> > > > problems. I sympathize. And I am double sorry to hear that you are

> > > > having to cut out so much good stuff from your diet. I hope that

> > > > some day soon you can put all of that stuff back in your diet and

> > > > days of bloating are a thing of the past for you.

> > > > > >>

> > > > > >> Hoping for a clear cut diagnosis and treatment on your PA!

> > > > > >>

> > > > > >> Cheers,

> > > > > >>

> > > > > >>

> > > > > >>

> > > > > >>

> > > > > >>

> > > > > >> Hi ,

> > > > > >>

> > > > > >> First off - congratulations!

> > > > > >>

> > > > > >> I just read your story and as usual, noticed some

> > similarities

> > > > to my own. The main thing I wanted to compare notes on was

> > digestive

> > > > issues, if you don't mind.

> > > > > >>

> > > > > >> I've had digestive problems my whole life, and when I was

> > > > around 30 I was diagnosed with fructose intolerance, which means I

> > > > lack the enzyme to break down fructose in my liver. Symptoms are

> > > > vomiting, diarrhea, and bloating (and eventually, enlarged liver,

> > > > jaundice, and out-of-whack blood panels, if it gets really bad).

> > > > Treatment is to avoid fructose (found in almost all fruits as well

> > > > as many fruits that we commonly call " vegetables " ) and fructans (a

> > > > type of carbohydrate found in many grains). I've also been lactose

> > > > intolerant since birth.

> > > > > >>

> > > > > >> Cutting out grains, fruits/many veg, and all lactose worked

> > > > GREAT and kept my symptoms away for several years, until I

> > presented

> > > > with high BP. Gradually I started getting a milder version of the

> > > > above symptoms (mainly, bloating and feeling uncomfortably full).

> > > > This has gotten worse as the PA has gotten worse.

> > > > > >>

> > > > > >> Now that I have a diagnosis, my doctors think once the PA is

> > > > treated the digestive issues will go away again. I'm still waiting

> > > > for a decision on the course of treatment (and hoping

> > adrenalectomy

> > > > is an option).

> > > > > >>

> > > > > >> I'm curious to know if your symptoms are at all similar,

> > and if

> > > > so, if they go away while you're on eplerenone. For me I know the

> > > > lactose/fructose problems are something that won't go away, but I

> > > > sure hope the milder problems do!

> > > > > >>

> > > > > >> Two of my doctors have differing theories about why the

> > > > problems are happening in conjunction with PA. One thinks it's

> > when

> > > > my K drops, it impacts my muscles (including smooth muscle of the

> > > > gastrointestinal tract). The other thinks it's a response to salt.

> > > > I'd sure love to resolve it, whatever the cause

> > > > > >>

> > > > > >> Thanks in advance for any input you are willing to offer!

> > > > > >>

> > > > > >> -msmith1928

> > > > > >> 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, supine

> > > > aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking

> > > > supplements); 25mg spiro caused gynecomastia; no HTN meds; current

> > > > meds are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,

> > > > cyclobenzaprine 5-10mg when needed, fexofenadine 180mg when

> > needed;

> > > > low sodium, fructose- and grain-free diet; known drug allergies

> > > > include PCN, sulfa, tetracycline

> > > > > >>

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