Re: BAD BLOOD WORK RESULTS - please help

[Guest guest]

Hi Kathy,

Before you get nervous..

Please post all related to complete blood counts.

You posted the Hemoglobin but in order to get a true gauge it is

important to post the whole panel and also look at it against the old

results..

Things you should look at;

hematocrit, rbc, wbc, mch, mcv

platelet.. iron, ferritin, iron saturation (those last couple if they

were tested)

Not sure if I am missing anything..

Ohh did they check her albumin? That's another good marker.

Personally for me when I first started the diet my bloods were a

mess!! I don't know if this is true for others. It took me quite a

while to get good bloods and not jump around all over the place.

I feel the proof is in the pudding and the water isn't red anymore..

Jodi

SCD 14 months

Crohn's/Colitis

>

> My daughter has been on the diet for 3 months and has been feeling

> great - no blood, no cramps.......all good. Her energy level is

> great. However, we just got bloodwork back and everything is worse!

> Her sed rate (inflamation rate) went from 25 to 37 (normal is 0-20).

> Also, her anemia is worse 10.8 down to 9.5.

>

> Can anyone offer an explanation? We just don't understand how the

> anemia is worse. She had an entire year of red toilet water. It has

> been clear water for 3 months since the diet and it is worse?! We are

> just really upset. Our next dr. appt is next Tuesday and I know he is

> going to push Remicade. We just thought we would be thinking of

> tapering off the drugs, not increasing them.

>

> Any input would be greatly appreciated! Please help!

>

> Kathy

>

[Guest guest]

> My daughter has been on the diet for 3 months and has been feeling

> great - no blood, no cramps.......all good. Her energy level is

> great.

Also, please tell us again what she has and how long she

has had it.

Mara

[Guest guest]

Thanks for your comments (so quickly). To answer them, she has had UC for 3 years. These are the results I got from the dr.

sed rate 37 (normal 0-20) in August was 25 (GOT WORSE)

anemia 9.5 (normal 11.5-16.5) in August was 10.7 (GOT WORSE)

CRP 1 (normal is less than 1) in August was 0.8 (I'm not sure what the CRP measures) (GOT WORSE)

Potien level testing general nutrition 3.6 (normal is 3.5-3.8) in August was 3.8 (SO THIS LOOKS GOOD)

Platlet count testing overall inflamation 413 (nomal 130-360) in August was 486 (SO THIS ACTUALLY IMPROVED, WHILE THE SED RATE GOT WORSE)

That is the best I can tell you. I don't have any kind of medical background, so this is the best I can tell you that the dr. told me. Does this help explain anything? We are going to get re-tested with the wishful thinking that the labwork is wrong.

Just how can she bleed for an entire year, then not bleed (visibly) in 3 months and be more anemic now? It just doesn't make sense. Does anyone else think it is a 3 month flair? Any other thoughts?

Thanks so much for any thoughts!

Kathy

To: BTVC-SCD Sent: Thursday, December 11, 2008 6:29:47 PMSubject: Re: BAD BLOOD WORK RESULTS - please help

> My daughter has been on the diet for 3 months and has been feeling> great - no blood, no cramps...... .all good. Her energy level is> great.Also, please tell us again what she has and how long shehas had it.Mara

[Guest guest]

Hi Kathy,

What you are calling " anemia " is really just the Hemoglobin count. I

have never heard of the hemoglobin being ordered without the others I

mentioned already..

Anemia is more complex than just the Hemoglobin count and it is

important to get " The Complete Blood Count " from your doc. Also have

him order an iron rate, iron saturation, and ferretin.

All I can say is that with my blood counts, I rarely bled when it got

really bad. Even in various hospitalizations it was perplexing as

docs didn't understand how my counts were dropping. Sometimes

inflammation will do that- that is the answer I got from docs over the

years.

I think if she is feeling better and doing better that should be your

barometer. Of course- if she is worsening that is a different story.

No blood in the toilet is a pretty good indicator.

Whenever I had and was approaching the milestone flares my blood

counts were all over the place. It is concerning. My GI taught me

though it is important to look at the whole picture as well.

Is she having any pain, D or C now?

Is she able to function and do stuff?

How is her mood? Is she playful and engaging?

How is her appetite?

These are very important things to consider in over-all well being.

Also, does she have signs of " 3 month die off " at all?

Jodi

SCD 14 months

Crohn's/Colitis

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

I would -never- tell someone not to listen to their doctor.

I have had horrible anemia issues over the years.

Whenever it lead to serious points ie- hospitalizations doctors would

shift their focus from Hemoglobin and actually focus much more on the

Hematocrit.. That is why when trying to get a true picture of Anemia

the whole panel is absolutely necessary.

Anyway, staying fanatically SCD legal has really helped my blood

counts and this diet has been an absolute blessing for me. Because I

have been through utter hell with Anemia which is a vicious cycle in

of itself! The way it has helped my anemia is nothing short of

miraculous in my eyes. It has taken %110 dedication on the diet and

hard work!

Jodi

SCD 14 months

Crohn's/Colitis