A Diagnosis for /was More iron

[Guest guest]

We just got a call at 7:00 AM that 's biopsy results came back from her

" perfect " looking endoscopy/colonoscopy. It seems she has confirmed many times

over Inflammatory bowel disease (IBD...not IBS) which runs from her throat to

her anus. She has gastritis, enteritis, duodenitis, ileitis, colitis and

Crohn's. This is where the malabsorbtion comes from. This is why she keeps going

anemic as there is microscopic bleeding going on just below the surface

throughtout the entire length of her gut. This is why she can't absorb calcium,

VitD, protein, iron etc. The doc says she has extemely expensive poop and she's

like feeding a sieve.

Of course my first reaction as a " normal " ? mother was to go " OMG what have I

done? Have I wasted all my time and money all these years on this SCDiet??? " he

said had we not been doing this diet this would have shown up alot sooner and

would have been visible on the photos they took all the way down. Apparently

it's much easier to locate on his kid patients who are on " crappy diets " (his

words).There were no lesions, scars, ulcers etc. By doing the diet we have kept

a serious condition under control and kept her out of what would have been an

enormous amount of pain. He said on a scale of 1-10 most kids on a typical diet

would be a 10 with these kinds of results but because of our work She's a 6-7.

She's got dozens of " hot spots " all the way down her innards and the diet has

been like a fireproof oven mitt that prevented the pain. like from a burning

frying pan, from coming all the way through.

Next step is to go back on Zantac and to start Pentasa which is a first run

anti-inflammatory before they move to steroids (or surgery). it is or can be

hereditary (We have alot of stomach stuff in the family), an immune problem, or

bacterial or viral (seemingly not so in this case. It is uncurable but it is

treatable. It can cause joint pain and a host of other symptoms which stem from

all the inflammation and malabsorption.

This is all I know right now. This is THE definitive answer he says, when

considering all the bloodwork and symptoms there are no chances of this many

false positives. So....at least we know what's going on for sure but I haven't

had a chance to feel relieved about a diagnosis. I'm still in shock and have

been crying all morning.

I hadn't mentioned before but has become exteremely ferocious and

aggressive in the past few weeks and I was really scared about what might be

happening to her mentally. I figured she had a clean bill of health from the

scopes but now at least I know where it's coming from. I know in my heart this

is a good thing...to have an answer after all these years of tracking down a

calcium deficiency. I can't believe the perseverence it has taken.

maybe I'm crying for relief too...I just love her so damn much and I'm so sick

of her being in pain and being the poster kid for mystery symptoms.

Thanks everyone for all the prayers and good thoughts

Sherry mom to 18 DS/Autism

[Guest guest]

Hi Sherry,

I am sorry to hear that is very sick, but I am glad that you

now know what is going on. I think it helps when you know what you

are battling.

I'll be keeping you both in my prayers.

Sheila, SCD Feb. 200, UC 23 yrs

mom of Em and Dan

<<.....had a clean bill of health from the scopes but now at least I

know where it's coming from. I know in my heart this is a good

thing...to have an answer after all these years of tracking down a

calcium deficiency. I can't believe the perseverence it has taken.

>

> maybe I'm crying for relief too...I just love her so damn much and

I'm so sick of her being in pain and being the poster kid for

mystery symptoms.

>

> Thanks everyone for all the prayers and good thoughts

> Sherry mom to 18 DS/Autism >>

[Guest guest]

sherry, you sound like a wonderful mother. your daughter is so lucky

to have such a devoted mom.

silvia

> We just got a call at 7:00 AM that 's biopsy results came back

> from her " perfect " looking endoscopy/colonoscopy. It seems she has

> confirmed many times over Inflammatory bowel disease (IBD...not

> IBS) which runs from her throat to her anus. She has gastritis,

> enteritis, duodenitis, ileitis, colitis and Crohn's. This is where

> the malabsorbtion comes from. This is why she keeps going anemic as

> there is microscopic bleeding going on just below the surface

> throughtout the entire length of her gut. This is why she can't

> absorb calcium, VitD, protein, iron etc. The doc says she has

> extemely expensive poop and she's like feeding a sieve.

>

> Of course my first reaction as a " normal " ? mother was to go " OMG

> what have I done? Have I wasted all my time and money all these

> years on this SCDiet??? " he said had we not been doing this diet

> this would have shown up alot sooner and would have been visible on

> the photos they took all the way down. Apparently it's much easier

> to locate on his kid patients who are on " crappy diets " (his

> words).There were no lesions, scars, ulcers etc. By doing the diet

> we have kept a serious condition under control and kept her out of

> what would have been an enormous amount of pain. He said on a scale

> of 1-10 most kids on a typical diet would be a 10 with these kinds

> of results but because of our work She's a 6-7. She's got dozens of

> " hot spots " all the way down her innards and the diet has been like

> a fireproof oven mitt that prevented the pain. like from a burning

> frying pan, from coming all the way through.

>

> Next step is to go back on Zantac and to start Pentasa which is a

> first run anti-inflammatory before they move to steroids (or

> surgery). it is or can be hereditary (We have alot of stomach stuff

> in the family), an immune problem, or bacterial or viral (seemingly

> not so in this case. It is uncurable but it is treatable. It can

> cause joint pain and a host of other symptoms which stem from all

> the inflammation and malabsorption.

>

> This is all I know right now. This is THE definitive answer he

> says, when considering all the bloodwork and symptoms there are no

> chances of this many false positives. So....at least we know what's

> going on for sure but I haven't had a chance to feel relieved about

> a diagnosis. I'm still in shock and have been crying all morning.

>

> I hadn't mentioned before but has become exteremely ferocious

> and aggressive in the past few weeks and I was really scared about

> what might be happening to her mentally. I figured she had a clean

> bill of health from the scopes but now at least I know where it's

> coming from. I know in my heart this is a good thing...to have an

> answer after all these years of tracking down a calcium deficiency.

> I can't believe the perseverence it has taken.

>

> maybe I'm crying for relief too...I just love her so damn much and

> I'm so sick of her being in pain and being the poster kid for

> mystery symptoms.

>

> Thanks everyone for all the prayers and good thoughts

> Sherry mom to 18 DS/Autism

>

>

>