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Here is the case history that mirrors my son's case. The sulfites seem to be the culprits, but looking further it would appear that excess copper and the subsequent deficiency of molybdenum caused a lack of sulfite oxidase (enzyme that metabolizes sulfites). I would love to see if there is any similar mechanism that could trigger achalasia. My husband is having his first-ever achalasia attack right now...after eating an Oriental Chicken Salad at a restaurant. Wonder if the lettuce was sulfited?? Hasn' t been able to swallow a bite of food since this afternoon. This is scary.

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1: Ann Allergy Asthma Immunol. 2003 Sep;91(3):314-7.

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Hepatic metabisulfite sensitivity in a patient with sclerosing cholangitis.Stormont JM, Flaherty M, Condemi J.University of Rochester School of Medicine and Dentistry, Rochester, New York, USA. stormymd@...BACKGROUND: Primary sclerosing cholangitis is an uncommon chronic cholestatic liver disease with a poor prognosis in symptomatic cases. Genetic and immunologic alterations have been identified, and many possible etiologies have been entertained. Most treatments have limited benefit, and primary sclerosing cholangitis is a common cause for liver transplantation. OBJECTIVE: To describe a patient with documented primary sclerosing cholangitis associated with chronic ulcerative colitis, who developed hepatic toxicity following ingestion of metabisulfite. RESULTS: A placebo-controlled oral challenge suggested metabisulfite hypersensitivity with liver toxicity. He was treated with cobalamin (to prevent sulfite toxicity), low-sulfite diet, steroids, and antibiotics and has had an unusually benign course for 19 years. CONCLUSIONS: The hypersensitivity to oral metabisulfite in our patient appeared to be a significant trigger to flare-ups of his disease. Controlling the response to metabisulfite (along with recurrent antibiotic and steroid therapy) may have contributed significantly to the remarkably good outcome in this patient.PMID: 14533666 [PubMed - indexed for MEDLINE]

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Jul 27 2004 13:14:01

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  • 1 month later...

Cindi wrote:

As always, Notan, thank

you for being the voice of intelligent reason! lol!

Lol indeed! ;-)

And I have to ask you, is

your name really Notan? My son pointed out that you are " Not

an Ostrich " .

It is not my real name. It does mean " not an " , not to be

confused with " nut in " as in " Nutin Candy " , or

" no tan " as in " Notan White " (What happened to the

Hawaiian dude with the tan)?

Here's my 2

cents

I will raise you 2 more, and I agree with everything you said.

Also, God makes us each

very unique! What a blessing! But that also means there will

probably not be a conclusive cause, treatment or even symptoms for every

case of A.

It may even be because we are very unique that we get A.

my kids deserve a healthy

mom who can be treated by a group of people who specialize in this area

of the body and know more about it than I ever will understand.

Yes it often comes down to something like that. In my case, my achalasia

has not been a problem for my family. For a while it did scare them, but

they have gotten passed that.

I would have been interested to hear more from Bernard, if he had more.

Maybe he did, maybe he didn't. I can understand that he made people feel

uncomfortable though.

notan

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--- Cindi,

If no one has told you yet, YOU, my dear, ARE THE TRUE VOICE OF

REASON. I love the way you get to the point of it all without

subjecting everyone to so much medical jargon and brouhaha. The

heller fixed me too. Period.

The fork in the " A " road points to surgery or no surgery. From

reading the messages written by Bernard, my take on it is working on

the ability to control the ANS by anxiety control--I know that is a

simple way of it and I respect what you are saying about this

therapy. I hope it really works. This world needs to learn how to

slow down anyway.

I'm medically oriented and am quick to make decisions based on my own

personal experience as a nurse. I chose the heller, and I didn't

spend my time wondering if it was right or not. It had to be done.

Cindi, like you, my family deserved a wife, mother, daughter in good

condition. My swallowing is not perfect and never will be again. Oh

well, c'est la vie. My favorite saying is: get over it, get on with

it. Life is too short. So Cindi, thanks again. You're awesome.

Jo from South Florida

In achalasia , " Cindi Wilmot " <cindiscandles@s...>

wrote:

> As always, Notan, thank you for being the voice of intelligent

reason!

> lol! And I have to ask you, is your name really Notan? My son

pointed out

> that you are " Not an Ostrich " . Just have been wondering!

>

> Here's my 2 cents on the whole " alternative medicine thing " , for

what it is

> worth.... I'm one who personally researches things like this before

> subjecting myself to treatment. When I was diagnosed, I literally

read

> hundreds of articles online before finding this group. I don't

think the

> medical community in general is completely ignorant of this

problem....

> though many doctors & nurses are. A has been researched and there

are still

> not a lot of answers. The same goes for cancer, Alzheimer's, AIDS

and so on

> ...many complicated problems, many without complete answers.

>

> Also, God makes us each very unique! What a blessing! But that

also means

> there will probably not be a conclusive cause, treatment or even

symptoms

> for every case of A.

>

> So, I came to the conclusion awhile ago that I might try something

if it

> were minimally invasive or not going to cause a long -term

unrelated problem

> (like, taking magnesium....no biggie; trying to drink soda to get

things

> down - works since my Heller!). but if I found a treatment for A

that was

> 93% effective, would I try it? YES! That treatment, in my case,

was a

> Heller. I have positively no regrets. My swallowing is not

perfect & I

> will guess I will have to go back at some point to have a dilation

or even

> further surgery as I'm only 39 yrs. old. But at the same time, if

I hadn't

> had it, I would be very, very ill right now. And my kids deserve a

healthy

> mom who can be treated by a group of people who specialize in this

area of

> the body and know more about it than I ever will understand.

>

> Cindi in PA

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