Re: How do I convince gastro - Charlene, Sheril, Carol

[Guest guest]

Hello all,

First, this is extremely difficult and complicated. I left some things out

because I didn't want to overwhelm you with details. At first SCD was all I

needed; it even normalized my weight! But then I started to get these

attrocious abdominal pains and that was the end of that! When I am in this

pain cycle (can last from a week to a month) I can eat nothing that won't

increase the pain. I was told it was a possible rare disease called

porphyria. Well looking into this, I was sent to yet more doctors and didn't

test positive, but one marker was close. My symptoms are classic, but I

can't get the treatment without the dx because it is costly and a controlled

substance is used to treat it.

This illness has made me slip and slide off SCD for years now, not knowing

why until recently. The treatment is actually IV dextrose! Then they tell

you to " eat grains " ! I'm like, " are you kidding me " !

As far as the diet goes, when I am on it, is great, but when that pain hits,

all bets are off! It used to be if I just avoided veggies, but now it does

not matter what I eat, I am in agony. I have to see a specialist, and if

that doesn't work, I am going to a pain treatment center if my ins. will

cover it. Because of this pain, I have gained back weight and spent way too

much on food and then finally went into fasting, which was my only recourse,

but that is another story I won't bog you down with, this post will be long

enough!

I want these tests done because I had an email friend who had chronic

diarrhea. He went to one of the big clinics and they ran test after test.

They didn't find much, but did find the Hydrogen breath test was horribly

off. He was treated and that helped. As far as Celiac, I still don't know

why I cannot tolerate many of the foods, supplements ect. I need for another

disease I have and it is important that I know what I am dealing with, with

my digestive system because I have to be treated for several rare conditions

and the oral meds/supplements are reaking havoc on my digestion. It seems

silly that he would not test, but this time we are going to 'knock heads'

until he can tell me WHY he is so right with no dx!

At any rate, please don't get the wrong info from my email. I NEVER let a

doctor walk on me! I do, however gauge who I am dealing with

(personality-wise) and act accordingly. I cannot force a doctor to do

something he won't do, so he was not walking on me, he was dismissing me and

because I hadn't looked into Celiac and the Hydrogen Breath Test enough, I

didn't have the info/knowledge that I now have to confront him on this. I

now can walk into his office completely confident that I KNOW what I am

talking about, and if he says " no " so will I! I never burn bridges, I just

don't cross them again unless absolutely necessary! I had to do it a month

ago for something else, as a matter of fact.

My attitude has always been that doctors are my employees and I have left

many (at least 10) for not taking me serioiusly. I just thought that since

he knew about SCD when I mentioned it to him, he would be open to other

testing.

We are all wrong and right at times, I have been wrong and I have been right

with the doctors that work better with me, it's no big deal, but this guy's

ego is!

From what you guys have told me, I decided I am going in one more time,

sweet as pie, but firm as spagetti squash, with my paperwork and request he

run the two test and tell him why. He is on my ins. so it won't hurt my

pocketbook at all.

I will post how it goes.

Thank you all so much for your input, I feel very comfortable now about my

decision.

God bless,

Hazelpone