New to group

[Guest guest]

Hi ,

That is great news that your protein level is down and your creatinine is

holding steady! YEAH!!

I have never heard of Norvasc increasing the blood pressure like that, but

then again that is Pierre's area of expertise! That would have scared me to

death I think. I know those high BP headaches are supposed to be incredibly

painful. I am glad they kept you and observed you until your BP came back

down.

Take care of yourself!

[Guest guest]

After diagnosis of IGAN, I was immediately put on Norvasc to try to

eliminate my slightly elevated BP. It ended up having the opposite effect,

and I had severe swelling in the feet and lower legs to boot. My wife drove

me to the neph's office when it was at its worst, where they found my blood

pressure had skyrocketed, somewhere in the neighborhood of 220/130; they

were afraid I would go into seizure if I did not get the BP down in just a

few minutes, and considered sending me to the emergency room. I had the most

severe headache I can remember and was vomiting and blacking out. They kept

me there, though, giving me .2 mg Clonodine every 10 minutes until the BP

came back to normal.

Since that time, I still take Norvasc, but only half the original dose. Am

also taking Monopril, Furosemide and Allopurinol. I've just gotten over 2

solid weeks of gout, hence the Allopurinol.

Got some good news at my last checkup a couple of weeks ago. Bloodwork shows

that serum creatnine is holding steady at 3.3, and proteinuria is down from

11 mg a year ago to .5 mg.

Re: NEW TO GROUP

Hi ,

I'm sorry you are having heart problems on top of the IgAN. It is no wonder

you had such a severe headache when your BP was so high.

I have not had heart problems like you are asking about. Perhaps someone

else in the group may be able to comment on that.

Could I please very respectfully ask that you consider typing without the

caps lock on? It makes the emails much easier to read when they are not all

in caps, and I just want to make sure I don't miss anything in your emails.

I would really appreciate it! Thanks so much.

[Guest guest]

Hi ,

I had hypertensive emergencies like that several times over the years. A

couple of them put me in the hospital for a while. I've never had much

success with Norvasc.

Pierre

RE: NEW TO GROUP

> After diagnosis of IGAN, I was immediately put on Norvasc to try to

> eliminate my slightly elevated BP. It ended up having the opposite effect,

> and I had severe swelling in the feet and lower legs to boot. My wife

drove

> me to the neph's office when it was at its worst, where they found my

blood

> pressure had skyrocketed, somewhere in the neighborhood of 220/130; they

> were afraid I would go into seizure if I did not get the BP down in just a

> few minutes, and considered sending me to the emergency room. I had the

most

> severe headache I can remember and was vomiting and blacking out. They

kept

> me there, though, giving me .2 mg Clonodine every 10 minutes until the BP

> came back to normal.

>

> Since that time, I still take Norvasc, but only half the original dose. Am

> also taking Monopril, Furosemide and Allopurinol. I've just gotten over 2

> solid weeks of gout, hence the Allopurinol.

>

> Got some good news at my last checkup a couple of weeks ago. Bloodwork

shows

> that serum creatnine is holding steady at 3.3, and proteinuria is down

from

> 11 mg a year ago to .5 mg.

>

>

>

[Guest guest]

Hi ,

Welcome! We are so glad you found us, and I certainly hope you will find

here a family of people who support you and that you might also feel very

encouraged by your participation here.

I am sorry you have been diagnosed at such young age, but you are not alone.

I have been symptomatic since I was a teenager and now in my 40s I have still

not reached dialysis, and really have not experienced any severe problems

until the past few years. We also have a number of teens and 20s in this group.

Welcome again!

[Guest guest]

,

Welcome to the group. I'm sorry that you have had to endure acute

renal failure but glad to hear that things are stable. Keep us

updated and take care!

> Hi all, been looking for some time for somewhere to talk about

this

> disease. So glad I've finally found an outlet. A little about

me...

> I'm 22 years old and was diagnosed with IgAN last year. In fact,

> the disease made itself known on my 21st birthday when I woke up

with

> blood in my urine. After being told by a Urologist I was fine, I

> decided he was a " quack " and saw a Nephrologist. He diagnosed it

as

> IgAN shortly thereafter. I've had a few battles with Acute Renal

> Failure, but at the present everything is stable. I look forward

to

> hearing from you all.

[Guest guest]

Welcome .

When it all started for me in my mid-20's, I first saw a urologist just like

you. This isn't unusual, as it's a good step to rule out other places the

blood might be coming from. I only saw a nephrologist later on.

Pierre

New to group

> Hi all, been looking for some time for somewhere to talk about this

> disease. So glad I've finally found an outlet. A little about me...

> I'm 22 years old and was diagnosed with IgAN last year. In fact,

> the disease made itself known on my 21st birthday when I woke up with

> blood in my urine. After being told by a Urologist I was fine, I

> decided he was a " quack " and saw a Nephrologist. He diagnosed it as

> IgAN shortly thereafter. I've had a few battles with Acute Renal

> Failure, but at the present everything is stable. I look forward to

> hearing from you all.

>

>

[Guest guest]

Interesting. The same thing happened to me last year. I found

blood in my urine randomly, went to a urologist, he did an IVP, and

said everything looked fine, the lining of the kidneys looked good.

And then he checked my serum creatinine and it came back 2.3, so

that's when he referred me to a nephrologist...but i'd probably seen

3 different ones until I finally got to the one I am currently with.

Hope you are all doing well....it's raining like crazy here!

Take care,

> Welcome .

>

> When it all started for me in my mid-20's, I first saw a urologist

just like

> you. This isn't unusual, as it's a good step to rule out other

places the

> blood might be coming from. I only saw a nephrologist later on.

>

> Pierre

>

> New to group

>

>

> > Hi all, been looking for some time for somewhere to talk about

this

> > disease. So glad I've finally found an outlet. A little about

me...

> > I'm 22 years old and was diagnosed with IgAN last year. In fact,

> > the disease made itself known on my 21st birthday when I woke up

with

> > blood in my urine. After being told by a Urologist I was fine, I

> > decided he was a " quack " and saw a Nephrologist. He diagnosed

it as

> > IgAN shortly thereafter. I've had a few battles with Acute Renal

> > Failure, but at the present everything is stable. I look

forward to

> > hearing from you all.

> >

> >

[Guest guest]

Hi Helen,

Welcome to our group. Although I am so sorry you have been diagnosed with

IgAN, it is good news that right now your kidneys look good. Do you know what

your creatinine level is?

I am sorry that I don't have any knowledge about C3 and ANA. Those are tests

I believe for lupus or autoimmune disorders, not for IgAN. We are normally

monitored with Serum creatinine, creatinine clearance, urine protein. As kidney

function declines, we are also checked for anemia, potassium, and phosphorus

levels.

Welcome again, and if you have not yet had the chance, you might want to look

at our sister site <A HREF= " www.igan.ca " >www.igan.ca</A> where you will find an

excellent compilation

of information from a patient's perspective which our founder Pierre put up for

us all.

[Guest guest]

Hi Helen,

I'm sorry you have reason to join us, but am glad you found your way here.

I hope you find this group as helpful as I have.

How were you diagnosed? Was this based upon a biopsy? I agree that low C3

is a bit of an odd thing for an IgAN patient - however 83 isn't too low

(please don't trust me completely here, as I don't have my lab book open).

I am not a doc, but low complement seems more associated with post strep

glomerular nephritis, MPGN,or lupus (which at first blush is ruled out by

that ANA).

I'm glad your kidneys look good. It's also fantastic your BP is OK (I think

you may be the only kidney patient I know who says that!). This group has

been incredibly supportive and a great source of information. Sometimes, it

can be difficult in the beginning when it seems that you are getting tons of

email from people you don't know, who all know each other and seem to be

sharing jokes that you may or may not get. The best thing is to jump in!

Cy

New to group

> Hi my name is Helen and I was diagnosed 3 weeks ago. I had blood

> in my urine and protein. My doctor says ight now my kidneys look

> good. So he has me on fish oil,vit e & A. My blood presure is ok. I

> thought he would be more concerned that he is my C3 was low (86), and

> my ANA was 320 he doesn't seem to worried...I hope he is right ...Any

> suggestions? oh by the way I wil be 47 on August 6th...

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

[Guest guest]

Hi Helen. Sorry to hear about your diagnosis, but am glad things are

looking good right now. I pray they stay that way.

New to group

Hi my name is Helen and I was diagnosed 3 weeks ago. I had blood

in my urine and protein. My doctor says ight now my kidneys look

good. So he has me on fish oil,vit e & A. My blood presure is ok. I

thought he would be more concerned that he is my C3 was low (86), and

my ANA was 320 he doesn't seem to worried...I hope he is right ...Any

suggestions? oh by the way I wil be 47 on August 6th...

[Guest guest]

Hi,

I am new to this group. I just recently found Elaine's book and would

like to try the diet on my daughter. She has PDD-NOS and doesn't

appear to have any outward signs of bowel problems, although once in

awhile her stools are not normal, depending on what she eats. She

does not seem able to digest oatmeal well. I was wondering if anyone

tried the diet for their child for behavior/learning delays only, and

found improvement in behavior and/or learning delays.

Thanks,

Ann

[Guest guest]

Stormy,

I am certainly no expert, but this is how I understand it:

CD is passed on through the genes of the parents, but they don't

necessarily have to have CD. Your sons can be fine and never get it,

but their children may. There are two primary genes responsible for

CD but a very few people have a third, different gene and neither of

the two primary ones. As you have learned by having a diagnosis

later in life, even if your sons appear to not have triggered CD by

the time they have kids, it could happen later.

I wouldn't worry a lot about your sons. Since they know you have it,

they should have blood tests annually now to make sure they don't

have the antibodies, as should any children they have. (I assume

they were tested after your diagnosis? If not, they should be.)

Or, they could just go on a strict gluten free diet and if they don't

already have CD, they'll never develop it. That's a big comittment

to make, though, when you're not sure, especially for a teenager!

Celeste

>

> Just wanted to introduce myself since I am new to group. I was

> diagnosed w/DH about 10 mos ago. I'm doing pretty well on GF diet,

> still learning about what's OK and what's not. It's a struggle at

> times, isn't it? If anyone had told me (prediagnosis) that I would

> not eat a " Big Mac " for 10 months I would have laughed so hard I

> would probably have passed out. Now it's amazing what you'll do

> without to avoid breaking out, or for those w/CD, having (as we

call

> it at home) the 'terrible tummies', which I get occasionally.

>

> As an adopted child, I have no idea where this came from, and no

one

> in my family to commiserate with. I do have 2 sons (21 and 15) who

> appear to be fine, although since I was diagnosed at age 49, I know

> they aren't 'out of the woods'.

>

> For those of you who have looked into this issue, here's my

> question: I understand that this is genetic, but how is it passed

> on? If my sons do not develop CD/DH, are their descendants 'free'

> from getting it? Is is something that jumps around from generation

> to generation? Is is a 2-parent genetic thing (both parents must

> carry the gene)? Can one carry the gene w/out developing CD/DH?

> Most of the info I've read on this is so techinical that I really

> can't fully grasp it. Please use 'plain english' in replies

because

> my high-school genetics was 30 years ago and I don't remember

much!

>

> Hoping you all have joyful holidays.

>

> Stormy

[Guest guest]

> For those of you who have looked into this issue, here's my

> question: I understand that this is genetic, but how is it passed

> on?

http://health.groups.yahoo.com/group/GliadinScience/

See photos section.

CD is a polygenic disease. This means that the risk is coded by

multiple genes. 2 " genes " that cause susceptibility are actually gene

pairs HLA DQ haplotypes which represent the Serotypes DQ2(Dw3) and DQ8

This serotype represents almost always by the molecular phenotypes.

HLA DQA1*0501:DQB1*0201 (short hand HLA DQ2.3)

HLA DQA1*0301:DQB1*0302 (Short hand HLA DQ8)

These two alone do not cause CD, as >20% of the worlds population

have either one or the other of these haplotypes. There are both

environmental and genetic factors that also cause CD.

The problem with the other genetic factors is that they tend

to be very subregional in nature and different groups have different

factors or the studies are so focused on single families that factors

tend to be 'artifactual' in nature.

What you need to know is that a person can have an 'allergy' to wheat

and not have CD, and excellent example of this is Baker's Asthma.

Only if you have these 2 haplotypes or haplotypes via the 'trans'

configuration that mimic these can you have CD. Therefore with HLA

DQB1 typing alone it is possible to determine whether your children

can or cannot get CD and whether they should avoid wheat. The risk

for family members with the DQ type is relatively high.

> If my sons do not develop CD/DH, are their descendants 'free'

> from getting it?

No, it can skip generations.

> Is is something that jumps around from generation

> to generation?

It can but generally doesn't. What it is likely to do is present as

clinical one generation and subclinical the next.

> Is is a 2-parent genetic thing (both parents must

> carry the gene)?

Except in the case of the trans-haplotype protein isoform

configuration (see photo again) one person can pass the known

haplotype from parent to child indefinitely. DQ8 appears by global

HLA analysis to be one of the oldest HLA haplotypes, it is at least

130,000 years in age, possibly much older. DQ2.3 appears to be more

recent, the earliest signs of this appear to have branched (undergone

interloci recombination or interallelic recombination) from north

africa >40 kya. There has tended to be more apparent branching in

DQ2.3 than in DQ8 (with the exception of south americans who have

extensive branching at all HLA loci).

However, while all the factors can be passed from one parent to

child, it is likely that the other parent will contribute factors

that either suppress this disease or increase the risk. Those

specific factors and how to test for them are largely controversial

at this point.

> Can one carry the gene w/out developing CD/DH?

HLA DQ 2.3 or DQ8, certainly. Particularly if there are no

diagnosed families members.

There is a population of Gauyaki indians in south american that have

a DQ8 bearers frequency 90%, they don't get CD, however when the

french tried to 'colonize' they ran back into the jungles. Since they

don't eat wheat, they cannot get CD.

There are aggrevating genes in this multigenic disease there are

suppressive genes. DQA1*0103 appears to suppress autoimmune diseases.

But if your a family member of someone who has CD and you have DQ2.3

or DQ8 your lifelong risk of having CD is relatively high. Therefore

I recommend that family members be tested for HLA DQ and maybe once

every few years get a anti-tTG test done.

> Most of the info I've read on this is so techinical that I really

> can't fully grasp it. Please use 'plain english' in replies

because

> my high-school genetics was 30 years ago and I don't remember

much!

What is tTG?

tTG = _t_issue _T_rans_G_lutaminase.

tTG is the autoantigen in CD. Antibodies to self antigens are the

cause of autoimmune diseases. In CD, patients produce antibodies

to tTG. This causes a whole lot of problems, so many that as

scientist we barely know a fraction of the problems at the

molecular level

tTG is not only the autoantigen, but it is the enzyme in the stomach

that cause all the allergies and autoimmune diseases.

tTG autoimmunity is the most peculiar autoimmune disease in humans,

it is literally the mother of all autoimmune diseases. And while

it not responsible for all incidences of autoimmuned diseases,

there are incidences in each disease that are attributed as

secondary to tTG autoimmunity

One of the most famous secondary autoimmunities is a disease

known as Dermatitis Herpetiformis (DH) ;^). The autoantigen

in DH is eTG, you might guess this one, if not

_e_pidermal _T_rans_G_lutaminase,

One of the eTG genes is very similar to tTG it has a similar amino

acid structure. Antibodies to tTG find these similar structures

in eTG can react with eTG causing DH.

Here is the deal.

CD causes both secondary food allergies and secondary autoimmune

diseases.

(the primary food allergy is to alpha-gliadin, a gluten)

(the primary autoimmune disease is to tTG)

In any given patient it _will_ cause different food allergies or

autoimmnune diseases, even if the patient is a family member.

Therefore you cannot really predict based on the presence or absence

of a secondary disease whether the family member has CD. The presence

of CD is primarily diagnoses by duodenal biopsy or

genetic/serological testing.

The only known genetic test that can improve the prediction of CD

is the HLA DQ typing. The only known serological testing is for anti-

human tTG antibodies. Now it appear that that quatity of IEL cells in

the GI, if elevated even slightly over normal, may be predictive of

CD, but this requires biopsy.

Thus the best advice I can give to a family member of a CD patient

who is worried about getting CD is to get DQ typed. If the type shows

up non DQ2.3, DQ8, or non(DQ2.7/DQ7) then they need not worry about

CD even though they could have a bothersome wheat allergy and need to

cut back on wheat consumption.

For family members with these types, they need to keep an eye out

on early signs of CD, and be aware of the symptoms.

1. Increasing dietary allergies

2. Delayed Gastric emptying, Irresponsive reflux disease, sudden and

late appearance of asthma.

3. Irritable bowel, extreme irregularity in bowel movements.

4. Late onset Lactose intolerance.

5. Neuropathies. Senility, Epilepsy, Hydrocephaly, peripheral

nerve inflamation, depression (see 6).

6. An autoimmune disease of anykind.

7. Appearance of ascites fluid around the upper GI by MRI or CT scan.

The inability to maintain proper fluid balance, cyclical

hypertension followed by low blood pressure, dizzyness, etc.

8. Unusual levels of hepatic factors in the blood (mild or

subclinical hepatitis)

To be clear, a person can have CD without any noticible syptoms at all

this person can develope lymphomas or other cancers of the GI tract

without any warning, however the risk is not great, the people who

are lucky are the ones that identify they have a problem by

recognizing a symptom, getting tested, identifying CD in the early

stages and beginning treatment. Some of the Neuropathies are

irreversible.

A final note, while a family member without DQ types listed above

cannot get CD, if that individual marries someone with a DQ type,

that individual can confer the 'unknown' genes to his/her offspring

and the grandchildren of the CD can get CD. Therefore I would not

rule out testing even in the 2nd generation of offspring. The risk

however should be reduced for every generation that passes.