Re: Celiac gene testing results came in

[Guest guest]

Well a gene test is certainly more definitive than a biopsy, to me anyway. I

would say if you're celiac, and hypo, and were using antacids, well that would

explain a lot of your gut problems. BUT, the good news is that they can heal.

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

confusing.

Barb

>

> Gluten Sensitivity Gene Test

> HLA-DQB1 Molecular analysis, Allele 1 0302

>

> HLA-DQB1 Molecular analysis, Allele 2 0502

>

> Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

>

> Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you

have one of the main genes that predisposes to gluten sensitivity and celiac

sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance

of receiving this gene from you, and at least one of your parents passed it to

you. You also have a non-celiac gene predisposing to gluten sensitivity (any

DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac

gene and one gluten sensitive gene, means that each of your parents, and all of

your children (if you have them) will possess at least one copy of a gluten

sensitive gene. Having two copies also means there is an even stronger

predisposition to gluten sensitivity than having one gene and the resultant

immunologic gluten sensitivity or celiac disease may be more severe. This test

was developed and its performance characteristics determined by the American Red

Cross - Northeast Division. It has not been cleared or approved by the U.S. Food

and Drug Administration.

>

> For more information about result interpretation, please see

http://www.enterolab.com/StaticPages/FaqResult.aspx

>

>

> Great!!!!!!

> I find this hard to believe as neither my mother nor my biological father have

ever noticed any problems eating gluten containing foods.

> I guess I have two choices,.....ignore it, or try to go gluten free for a

short period and see what happens.

>

> IF,....and I say IF this is correct, maybe this could be a source of

inflammation that is causing my high ferritin levels.

> Also I had blood drawn today for the hemochromatosis testing.

>

> Anybody with input, post away!

>

[Guest guest]

When you mean your parents don't note problems with eating gluten, do you

mean that they don't report gastrointestinal symptoms? Or that they don't

seem to have a problem eating gluten?

Some don't have gastrointestinal symptoms from eating gluten that they're

aware of. Some just have silent gut damage that causes malabsorption, but

nothing like either diarrhoea or constipation that many have.

You aren't likely to get any benefits unless you eat 100% gluten-free for a

few weeks (I've heard 6 weeks minimum as some finally come round near the

end of the trial diet). If you continue to eat just a crumb of gluten

occasionally your body may not start to recover and you may not notice a

difference. Therefore, some will think they don't have a problem with gluten

as going gluten-lite and then eating gluten-heavy make no difference in

their symptoms. Unfortunately, to those with Celiac less gluten is no

different than tons of gluten as it's still gluten and it perpetuates the

autoimmune attack.

I wish you all the best when you make this big decision!

-Nigel

On 20 January 2011 10:45, marc200134470 <cfs38@...> wrote:

>

>

> Gluten Sensitivity Gene Test

> HLA-DQB1 Molecular analysis, Allele 1 0302

>

> HLA-DQB1 Molecular analysis, Allele 2 0502

>

> Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

>

> Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you

> have one of the main genes that predisposes to gluten sensitivity and celiac

> sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50%

> chance of receiving this gene from you, and at least one of your parents

> passed it to you. You also have a non-celiac gene predisposing to gluten

> sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by

> HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means

> that each of your parents, and all of your children (if you have them) will

> possess at least one copy of a gluten sensitive gene. Having two copies also

> means there is an even stronger predisposition to gluten sensitivity than

> having one gene and the resultant immunologic gluten sensitivity or celiac

> disease may be more severe. This test was developed and its performance

> characteristics determined by the American Red Cross - Northeast Division.

> It has not been cleared or approved by the U.S. Food and Drug

> Administration.

>

> For more information about result interpretation, please see

> http://www.enterolab.com/StaticPages/FaqResult.aspx

>

> Great!!!!!!

> I find this hard to believe as neither my mother nor my biological father

> have ever noticed any problems eating gluten containing foods.

> I guess I have two choices,.....ignore it, or try to go gluten free for a

> short period and see what happens.

>

> IF,....and I say IF this is correct, maybe this could be a source of

> inflammation that is causing my high ferritin levels.

> Also I had blood drawn today for the hemochromatosis testing.

>

> Anybody with input, post away!

>

[Guest guest]

Initially I thought the same about the ferritin, but upon further thought I came

to the conclusion that my high ferritin may be due to inflammation in my gut.

Guess I will find out as I intend to go gluten free for a couple of months

anyway. Not that big of a deal for me actually as I am not a big bread eater,

nor do I get into cakes and pies much.

Yea,.....I know you have to check EVERYTHING out that you use, and that will be

fun.

>

> Well a gene test is certainly more definitive than a biopsy, to me anyway. I

would say if you're celiac, and hypo, and were using antacids, well that would

explain a lot of your gut problems. BUT, the good news is that they can heal.

>

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

confusing.

>

> Barb

[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

Nigel,.....I did have an iron panel run previously. It was three tests total and

all were in range, albeit upper third of range.

I had blood drawn yesterday for some 'specialized' test concerning the

hemochromatosis possibility. I will see the results when I go back to my doc end

of next week.

He also tested me for disease, and I have no clue why.

[Guest guest]

I guess I mean I have never heard my mother complain of gastro issues per se.

As far as my father goes, I have no real clue other than the fact he is not on

any kind of a diet. They divorced when I was very young and we have not had much

contact until recently.

Myself though,.....I get all kinds of gastro symptoms.

Gastro doc told me I have IBS, as well as GERD and I have been on Nexium for

about 5 years on and off.

I bloat up after eating, and my gut makes all kinds of noises. Also my heart

really ramps up for an extended period of time after a meal.

I had the Metametrix fecal test done which showed conflicting info, at least to

me.

I am losing weight, but according to that test I do not have digestion or

absorption issues. Some of my nutrient levels are low as in vitamin D and B-12,

but I seem to have found other reasons for that. PPI usage is known for causing

low B-12, and as far as the vitamin D goes I basically cover myself up when

working outside.

I have spent way too much time in the sun over many years and I now wear long

jeans with a long sleeve t-shirt when working outside.

I even wear a hat with a neck and ear drapes on it as well if I am going to be

outside for any length of time. I think that explains my low D.

I have basically decided to go gluten free as soon as I can for 6 to 8 weeks and

see if anything improves. Really not that big of a deal for me as I am not a big

bread eater.

The only thing that will stink is pasta, and my occasional NY style pizza that I

pick up.

>

> When you mean your parents don't note problems with eating gluten, do you

> mean that they don't report gastrointestinal symptoms? Or that they don't

> seem to have a problem eating gluten?

>

> Some don't have gastrointestinal symptoms from eating gluten that they're

> aware of. Some just have silent gut damage that causes malabsorption, but

> nothing like either diarrhoea or constipation that many have.

>

> You aren't likely to get any benefits unless you eat 100% gluten-free for a

> few weeks (I've heard 6 weeks minimum as some finally come round near the

> end of the trial diet). If you continue to eat just a crumb of gluten

> occasionally your body may not start to recover and you may not notice a

> difference. Therefore, some will think they don't have a problem with gluten

> as going gluten-lite and then eating gluten-heavy make no difference in

> their symptoms. Unfortunately, to those with Celiac less gluten is no

> different than tons of gluten as it's still gluten and it perpetuates the

> autoimmune attack.

>

> I wish you all the best when you make this big decision!

>

> -Nigel

[Guest guest]

The rice pasta is pretty good. Some of the brands aren't as good, but

Tinkyada is a good one as they have rice bran in there and the texture works

as you can even cook it al dente.

Gluten-free isn't grain-free, so don't torture yourself over giving up

things like cookies or even ice cream as you can find ones that are safe.

The most important thing would be to make sure there's no gluten in your

kitchen from times past when you go to make your meals. This is a long page,

but it's got most of the stuff listed to do it right:

http://forums.realthyroidhelp.com/viewtopic.php?f=15 & t=12054

I don't know what other iron results you had done, but usually TIBC/UIBC is

low in iron overload with high serum iron and saturation.

As you've probably researched, the amount of vitamin D consumed through diet

(including fortified foods) is so minimal that people can easily have a

deficiency even if they absorb what little vitamin D they consume. It really

is a sunshine vitamin, but then some don't produce it easily that way

either.

Not everyone has severe malabsorption with a gluten problem and the main

complaints can be things like acid reflux or issues at the other end of

digestion. My reflux issues improved with a gluten-free diet and also

correcting hypothyroid.

-Nigel

On 22 January 2011 11:14, marc200134470 <cfs38@...> wrote:

>

>

> I guess I mean I have never heard my mother complain of gastro issues per

> se.

> As far as my father goes, I have no real clue other than the fact he is not

> on any kind of a diet. They divorced when I was very young and we have not

> had much contact until recently.

>

> Myself though,.....I get all kinds of gastro symptoms.

> Gastro doc told me I have IBS, as well as GERD and I have been on Nexium

> for about 5 years on and off.

>

> I bloat up after eating, and my gut makes all kinds of noises. Also my

> heart really ramps up for an extended period of time after a meal.

> I had the Metametrix fecal test done which showed conflicting info, at

> least to me.

>

> I am losing weight, but according to that test I do not have digestion or

> absorption issues. Some of my nutrient levels are low as in vitamin D and

> B-12, but I seem to have found other reasons for that. PPI usage is known

> for causing low B-12, and as far as the vitamin D goes I basically cover

> myself up when working outside.

> I have spent way too much time in the sun over many years and I now wear

> long jeans with a long sleeve t-shirt when working outside.

>

> I even wear a hat with a neck and ear drapes on it as well if I am going to

> be outside for any length of time. I think that explains my low D.

>

> I have basically decided to go gluten free as soon as I can for 6 to 8

> weeks and see if anything improves. Really not that big of a deal for me as

> I am not a big bread eater.

> The only thing that will stink is pasta, and my occasional NY style pizza

> that I pick up.

>

[Guest guest]

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.

>

> The rice pasta is pretty good. Some of the brands aren't as good, but

> Tinkyada is a good one as they have rice bran in there and the texture works

> as you can even cook it al dente.

>

> Gluten-free isn't grain-free, so don't torture yourself over giving up

> things like cookies or even ice cream as you can find ones that are safe.

>

> The most important thing would be to make sure there's no gluten in your

> kitchen from times past when you go to make your meals. This is a long page,

> but it's got most of the stuff listed to do it right:

>

> http://forums.realthyroidhelp.com/viewtopic.php?f=15 & t=12054

>

> I don't know what other iron results you had done, but usually TIBC/UIBC is

> low in iron overload with high serum iron and saturation.

>

> As you've probably researched, the amount of vitamin D consumed through diet

> (including fortified foods) is so minimal that people can easily have a

> deficiency even if they absorb what little vitamin D they consume. It really

> is a sunshine vitamin, but then some don't produce it easily that way

> either.

>

> Not everyone has severe malabsorption with a gluten problem and the main

> complaints can be things like acid reflux or issues at the other end of

> digestion. My reflux issues improved with a gluten-free diet and also

> correcting hypothyroid.

>

> -Nigel

[Guest guest]

Marc

I buy a rice flour pizza base from the health food store and it is very nice. I

am in Australia but I think it would be avavilable most places.

Happy Australia Day to any Aussies who might be here.

Kind regards

Wayne

> >

> > The rice pasta is pretty good. Some of the brands aren't as good, but

> > Tinkyada is a good one as they have rice bran in there and the texture works

> > as you can even cook it al dente.

> >

> > Gluten-free isn't grain-free, so don't torture yourself over giving up

> > things like cookies or even ice cream as you can find ones that are safe.

> >

> > The most important thing would be to make sure there's no gluten in your

> > kitchen from times past when you go to make your meals. This is a long page,

> > but it's got most of the stuff listed to do it right:

> >

> > http://forums.realthyroidhelp.com/viewtopic.php?f=15 & t=12054

> >

> > I don't know what other iron results you had done, but usually TIBC/UIBC is

> > low in iron overload with high serum iron and saturation.

> >

> > As you've probably researched, the amount of vitamin D consumed through diet

> > (including fortified foods) is so minimal that people can easily have a

> > deficiency even if they absorb what little vitamin D they consume. It really

> > is a sunshine vitamin, but then some don't produce it easily that way

> > either.

> >

> > Not everyone has severe malabsorption with a gluten problem and the main

> > complaints can be things like acid reflux or issues at the other end of

> > digestion. My reflux issues improved with a gluten-free diet and also

> > correcting hypothyroid.

> >

> > -Nigel

>

[Guest guest]

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]

>

> 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]

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]

Nigel,....thanks for your input.

I did find some GF pasta and the like finally at a store here I never go to. As

I said before, I intend to go GF for 6 to 8 weeks and see if anything improves.

Actually I will probably do 3 months to be sure.

If NOTHING changes, then I have to figure I carry the genes but I am not active.

At that point I will go back to eating like I always have.

It's really not that big of a deal to give it a go.

>

> 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

[Guest guest]

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]

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