Re: Re: Celiac gene testing results came in

[Guest guest]

Barb, high iron stores could also occur, but it would be unusual.

Hemochromatosis is one possiblity and the rate of iron loading could even

accelerate with the healing from a gluten-free diet.

I would also imagine that if eating gluten is causing major inflammation

that ferritin could be falsely elevated. Doing a full iron panel would help

to figure out if there's too much iron loading when ferritin is high.

Hopefully they'll also run a simple iron panel (TIBC/UIBC), Marc.

-Nigel

On 20 January 2011 16:20, Barb <baba@...> wrote:

>

>

> BTW, low ferritin is one of the symptoms of celiac, not high, so that's

> confusing.

>

> Barb

>

[Guest guest]

Marc, notice how iron overload involves low TIBC:

http://www.labtestsonline.org/understanding/analytes/tibc/test.html

Perhaps you just have some inflammation elevating ferritin.

Bread crumbs are no issue as even the so so gluten-free loaves you can buy

already made can be used when you need bread crumbs.

Just get some corn starch and potato starch and experiment with what works

for you in place of wheat flour for gravies.

If you're particular on pizza crust then you'll probably do best making your

own from gluten-free flours. Some find a flour mixture they like and make a

whole lot and freeze the already mixed ingredients for usage later.

Another option is corn pasta. I've only had it a few times and found it

almost more like wheat pasta than rice pasta. However, it got all funny

within a few hours, so don't expect pasta salads to work with it; use rice

pasta.

-Nigel

On 25 January 2011 12:04, marc200134470 <cfs38@...> wrote:

>

>

> Nigel,.....thanks for all that info!

>

> The tests I had done were:

> Iron Total - 155 (45-170mcg/dL)

> Iron Binding Capacity - 375 (250-425mcg/dL)

> % Saturation - 41 (20-50% calc)

>

> My ferritin was 512 with this same blood draw.

>

> Supposed to see my doc Saturday,.....yes, he started having Saturday hours

> he is so busy.

> I will see the results of whatever he ordered that was drawn last week,

> along with the CT scan I just got back from having done a bit ago.

>

> I have made a good bit of progress on finding out what I have that is

> gluten free and what I need to get.

> My only issue will be finding pasta that I like, along with something to

> replace bread crumbs with for things like meatloaf and the like.

>

> Pizza,......I may just have to give it up, or cheat a few times a year as I

> am VERY particular about pizza crust!

> I have already managed to cut out 90% or more of things that have gluten in

> them, but I know you have to get rid of it all to find out for sure.

>

> I imagine this was a nightmare years ago to do, as it seems like in recent

> years even major manufacturers have made it pretty easy to see if their

> products contain gluten. Soups and gravies are another hard one it seems,

> but being as I hardly ever eat soup and can live without gravy that isn't a

> big problem either!

>

> Also I am not a big eater of sweets,......another non-issue.

>

>

[Guest guest]

Marc,

I have Statin Drug damage to my muscles and I am in a lot of pain and can't

stand or walk with out a walker. My Ferritin took off sense this happened last

Sep. when I hit bottom I went from 126 to 330 on one Iron pill/ day.

I wonder if the inflammation in my muscles is doing this to my Ferritin levels.

But then again I was adding Preg cream when this happened. So we are not

changing any thing I am off Preg. and will see how labs look in 8 weeks.

Co-Moderator

Phil

> From: marc200134470 <cfs38@...>

> Subject: Re: Celiac gene testing results came in

>

> Date: Wednesday, January 26, 2011, 11:27 AM

>

>

> So I guess the line labeled 'iron binding capacity' on my

> test was what you are referring to as TIBC?

>

> I guess it's possible that some inflammatory issue is

> causing my problem, as I am starting to wonder if I have an

> auto-immune disease or something.

>

> Seems that is something else that can cause all of my

> issues.

> Maybe it's the gluten, but I find that hard to believe that

> something like that could start so suddenly if I have

> carried the genes all my life.

>

> If I can't find an answer soon I guess I will have to head

> out of town to a place like Mayo Clinic or something as all

> of this is getting to be too much to handle.

>

> From listening to some of my posts one would think I am a

> hypochondriac, but I assure you all that I am not. I have

> never had any issues my whole life until a little over a

> year ago when I started heading downhill. Prior to that I

> had some acid reflux, and borderline hypertension that was

> treated with one med only for years. Never really felt bad,

> and could go 24 hours a day while taking any stress that

> came my way.

>

> Whatever started this downhill slope I have been on is the

> issue with everything I believe. The trick is finding out

> what it is, and I am not having too much luck in that area

> short of making docs and diagnostic facilities wealthier.

>

>

>

>

> >

> > Marc, notice how iron overload involves low TIBC:

> >

> > http://www.labtestsonline.org/understanding/analytes/tibc/test.html

> >

> > Perhaps you just have some inflammation elevating

> ferritin.

> >

> > -Nigel

> >

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Yes it shows inflammation in your Arteries and Veins. The other test show it in

your muscles.

Co-Moderator

Phil

> From: marc200134470 <cfs38@...>

> Subject: Re: Celiac gene testing results came in

>

> Date: Thursday, January 27, 2011, 11:57 AM

>

>

>

> >

> > Marc,

> > I have Statin Drug damage to my muscles and I am in a

> lot of pain and can't stand or walk with out a walker. 

> My Ferritin took off sense this happened last Sep. when I

> hit bottom I went from 126 to 330 on one Iron pill/ day.

> >

> > I wonder if the inflammation in my muscles is doing

> this to my Ferritin levels.  But then again I was

> adding Preg cream when this happened.  So we are not

> changing any thing I am off Preg. and will see  how

> labs look in 8 weeks.

> > Co-Moderator

> > Phil

> Seems that it could from what a lot of folks say.

>

> In my case though, I don't know where the inflammation is

> coming from if that is what's causing mine.

>

> I wonder if having my homocysteine and c-reactive protein

> measured would prove inflammation?

> Are those two items not markers for inflammation in the

> body?

>

>

>

> ------------------------------------

>

>

[Guest guest]

Marc, it looks like they just forgot to say " total " but that result looks

like total iron-binding capacity (TIBC).

We all understand about feeling bad and not wanting to seem like a

hypochondriac. But, you live in your body and know how you're supposed to

feel.

Sorry, I don't know anything about inflammation testing.

-Nigel

On 26 January 2011 10:27, marc200134470 <cfs38@...> wrote:

>

>

>

>

> So I guess the line labeled 'iron binding capacity' on my test was what you

> are referring to as TIBC?

>

> I guess it's possible that some inflammatory issue is causing my problem,

> as I am starting to wonder if I have an auto-immune disease or something.

>

> Seems that is something else that can cause all of my issues.

> Maybe it's the gluten, but I find that hard to believe that something like

> that could start so suddenly if I have carried the genes all my life.

>

> If I can't find an answer soon I guess I will have to head out of town to a

> place like Mayo Clinic or something as all of this is getting to be too much

> to handle.

>

> From listening to some of my posts one would think I am a hypochondriac,

> but I assure you all that I am not. I have never had any issues my whole

> life until a little over a year ago when I started heading downhill. Prior

> to that I had some acid reflux, and borderline hypertension that was treated

> with one med only for years. Never really felt bad, and could go 24 hours a

> day while taking any stress that came my way.

>

> Whatever started this downhill slope I have been on is the issue with

> everything I believe. The trick is finding out what it is, and I am not

> having too much luck in that area short of making docs and diagnostic

> facilities wealthier.

>

[Guest guest]

Creatine Kinase, Total

Myoglobin, Serum

Creatine kinase Isoenzymes w/o Total

CK-MM

CK-MB

CK-BB

Coenzyem Q10

and your

Ferritin and Iron levels

Co-Moderator

Phil

> From: marc200134470 <cfs38@...>

> Subject: Re: Celiac gene testing results came in

>

> Date: Thursday, January 27, 2011, 12:31 PM

> What test is that one Phil?

> I am on the search for inflammation myself. I am not on

> statins,...never have been, but my leg muscles ache a lot of

> times for no reason that I can think of.

>

>

> >

> > Yes it shows inflammation in your Arteries and

> Veins.  The other test show it in your muscles.

> > Co-Moderator

> > Phil

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Marc,

Sorry to here they found this I pray it all gose well and it's nothing.

Here are my last Iron labs I am thinking I might be able to stop my Iron pills.

Iron and Total Iron Binding Capacity.

Iron, Total 118 range 45 – 170 mcg/dL.

Iron, Binding Capacity 326 range 250 – 425 mcg/dL.

% Saturation 36 range 20 – 50 % (calc).

Ferritin 330 range 20 – 380 ng/mL.

Vitamin B12 995 range 200 – 1100 pg/mL.

Folate, Serum > 24.0 ng/mL.

Co-Moderator

Phil

> From: marc200134470 <cfs38@...>

> Subject: Re: Celiac gene testing results came in

>

> Date: Saturday, January 29, 2011, 4:27 PM

> Well to close this out it seems I do

> not have hemochromatosis according to my Cardiologist.

>

> He ran the same 3 blood tests for iron as well as some I

> don't remember right now,.....they were all normal.

> BTW Nigel, he also mentioned what you spoke of about the

> TIBC being low usually.

>

> All three of the iron tests were better than previously by

> a small amount.

>

> Good news on the CT Scan,.....liver/pancreas/gall-bladder

> is fine.

> Bad news,......I have an 'unidentifiable' cyst type

> formation on my left kidney, and something that appears to

> be 'strange' as well at the entrance to my descending

> colon.

>

> Now I get a targeted test on my kidney, and it looks like a

> colonoscopy as well.

>

> Guess that's how it goes!

> I'm fine with it all, and hoping for the best.

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

All I know is when I first got sick 30 yrs ago the first thing the Dr. seen was

my low Iron levels. He put me on Iron pills I did not get any better so I seen

a blood Dr. he was not a good Dr. he could not speak english very well. He re

did my labs but did not tell me to come off the high dose Iron pills I was on.

My labs came back in range he said I was fine. Now many yrs later I get my Dr.

to test my Ferritin and my levels were below normal going on Iron helped a lot.

Then I ended up having Heart Bypass Surgery so we still don't know why my levels

were so low. Seeing my Ferritin levels go up from 126 to 330 adding Preg. cream

might be why my Iron was so low. My Preg. and Prog. tested very low before

trying the cream.

Co-Moderator

Phil

> From: marc200134470 <cfs38@...>

> Subject: Re: Celiac gene testing results came in

>

> Date: Monday, January 31, 2011, 1:50 PM

> Thanks Phil,.....I don't really worry

> until there is a reason to about these things. Not only

> that, things will be what they will be. I am hopeful it is

> nothing on both counts.

>

> My iron levels were total 137,...........binding capacity

> 350,.......% saturation 39.

>

> While I have never taken an iron pill in my life, I am glad

> your levels seem to be getting straightened out.

> My doc wants to test my ferritin every 3 months for the

> time being, and after I get these other tests done, I am

> getting all the inflammatory marker testing done as well.

>

>

> >

> > Marc,

> >

> > Sorry to here they found this I pray it all gose well

> and it's nothing.

> >

> > Here are my last Iron labs I am thinking I might be

> able to stop my Iron pills.

> >

> > Iron and Total Iron Binding Capacity.

> > Iron, Total 118 range 45 †" 170 mcg/dL.

> > Iron, Binding Capacity 326 range 250 †" 425

> mcg/dL.

> > % Saturation 36 range 20 †" 50 % (calc).

> > Ferritin 330 range 20 †" 380 ng/mL.

> > Vitamin B12 995 range 200 †" 1100 pg/mL.

> > Folate, Serum > 24.0 ng/mL.

> >

> > Co-Moderator

> > Phil

>

>

>

>

> ------------------------------------

>

>