Re: (unknown)

[Guest guest]

Good luck .

Sally UK

(unknown)

Thanks so much for writing me. I didn't think anyone would,and for the

first time since I was 14 I'm facing something life threatening and it

scares me to death. Just being a kid then, I never gave any thought to

really how serious that surgery was, so until this last week (leaving the

hospital), I've lived a dangerous life with my kidney condition. I've drank

alcohol regularly since age 16, smoked cigarettes,went through the pot and

drug phase uncountable times, drink and eat everything that I want, and no I

didn't know about the over the counter pain medicine of which I've used for

the last 17 yrs. also whenever needed. Now it's almost impossible to sit

here and write this letter because of the flank pain and fatigue..I haven't

seen a urologist in 17 yrs. since the surgery..This Thursday is my first

appointment, and I think that the damage is already done..I'll let you know

how it goes! Thanks soooo much for the support, it really helps to know your

not alone..

[Guest guest]

Hi Kathy.

Well, I hope this isn't the case, but you never know when a patient like

your husband could be in advanced kidney failure. It can creep up on people

without too many symptoms sometimes. With a history of kidney disease, and

severe nausea, he should certainly get checked out. It doesn't matter if

it's a urologist or a GP - it's all the same blood work.

Good luck. Let's hope it's not too serious.

Pierre

(unknown)

> Hello everyone, I have been a member before but unsubscribed but I am

back. My husband is the one that has IGA. He was diagnosed 7 years ago

after 2 hospitals stays and both kidneys being blocked by blood clots. He

has not been to a Dr. since he was diagnosed with it. He was not told to

follow up. He has been experiencing severe nausea and sweats. He has

continued to have obvious blood in his urine through the years and flank

pain. I was wondering if the nausea is part of the disease. I am also

thinking it is time to get a check-up. We don't have insurance so most

likely we will only be able to go to a urologist and I am not sure they can

help him. Anyone got any ideas, or does any of this sound familiar?

> Thanks,

> Kathy

>

[Guest guest]

Hi Mark,

I am so sorry you are having so much trouble with nausea. Not eating just

kinds of makes matters even worse as you get weaker from lack of nutrition.

Have you mentioned this to your doctor? If not, since it seems to be a

consistent problem, I would say something to him.

Hope you are feeling better soon!

[Guest guest]

Cy,

Thank you for your post. Even though I am the one with IgA instead of my

children I just really enjoyed reading your post. I think all of us with

children can get something out of it and apply it to our lives.

Thank you again,

Dana

In a message dated 6/3/03 4:30:50 PM Central Daylight Time,

csink@... writes:

<< Re: (unknown)

Hi ,

I am so sorry to hear about your son. It's been just about 9 months since

my 12 yr old son was diagnosed with MPGN (rather like IgAN, but faster time

to renal failure). I think in the past nine months I've learned more about

renal stuff than I ever expected to know. Having your kid diagnosed with

any chronic disease rather shakes one's foundations. Those first few months

post-diagnosis were really hard - as I assume they are for you too. I hope

you find this group as helpful as I have.

I've copied a few bits from a letter that a friend who's pursueing her

doctorate in renal stuff just wrote to the mum of a kid who was recently

diagnosed with FSGS (another renal nasty that hits kids). I found it so

incredibly moving that I ended up printing it out and hanging it over my

desk. My friend (who received her new kidney some time ago) leaves most of

us in the dust....

" ....As for your second question: no easy answer, but a few things. First,

it's

important to remember that chronic renal failure comes on very gradually,

and

can be managed quite well, both before and after ESRD. So it's not like

having

a failing heart or something (one of my doctors says that " the kidneys are

smarter than that! " ). A young person dying with chronic renal failure is

extraordinarily rare. So hopefully remembering that will take away any

bone-chilling fear.

Third would be educating yourself. Obviously you've taken the first steps

in

this already, but continue to do so. The truth is, there are really a

finite

number of typical problems. There are a number of good resources out there

(not the least of which is this list) but I do believe that the more you

know,

the more you can anticipate and plan for the future. Ask ANY questions you

want of your doctor or on this list (both of which should provide an answer

within 24-48 hours).

Fourth, most people need to broaden their definition of words like " fixed "

" cured " " help " and " all right " among others. It's not that you shouldn't

expect

a lot (you should!) but a little mental flexibility is good. I've had

doctors who think they " helped " or " cured " by performing a surgical

procedure, and

decide that gives them license to skip follow-up care and/or behave like a

two-year-old. Others have " wished they could help more " or though that

" things

may not be all right " after being up all night thwarting one problem after

another, and answering any questions I could think to ask. If you fall into

the

mindset that chronic renal diseases must be " fixed " like other, more

short-term

conditions, you're setting yourself up for unnecessary disappointment (in my

humble opinion!).

Lastly, the thing that's helped me most (more with the inevitable slumps

than

with worry) is a good vision of the future. Whatever you wanted for your

daughter before, you're still free to want; whatever you planned, you're

still

free to plan. Even though recitations like this are tiresome, I'm gonna

make

one anyway :-): people with ESRD have become professional athletes,

successful

business people, engineers, lawyers, and even nephrologists. Many have

married

and had children. Most, despite their problems, are fairly happy with their

lives. A few " wouldn't change a thing " but most would like to change things

yet are OK with the way things turned out. "

Being almost a year from the time my son was diagnosed, it seems that most

of the above is true.

Cy >>

[Guest guest]

Hi Ljrosario,

First of all, a very warm welcome to the group! I am glad you found us and I

hope you find a great deal of encouragement as well as support here. I am

very sorry to hear about Zach's diagnosis though. I certainly understand you

feeling both scared and lost. I hope as you navigate through the messages and

our sister site, I hope your fear is somewhat alleviated.

I am another one with IgAN 25+ years and still not on dialysis yet either, so

please take heart with all the success stories.

Know that we are here to answer any questions and help you while you are

feeling so lost. You may want to check out <A

HREF= " www.igan.ca " >www.igan.ca</A> if you have not already.

There is lots of good information there from a patients perspective.

Welcome again.

In a message dated 6/3/2003 7:28:36 AM Pacific Daylight Time,

ljrosario@... writes:

> ello everyone, Well all this is new to me. I was just told last week that

> my 11 year old son Zach has iga. We have a appointment with the neph on

> Thursday to find out everything they learned from the biopsy.I took it upon

myself

> to search online for any info I could find. Reading some of the groups past

> stories has helped me. I'm just scared and lost. I have much to learn.

[Guest guest]

Wow Cy,

That was a great letter! What an encouragement. Thanks so much for sharing

it with the group.

In a message dated 6/3/2003 11:37:29 AM Pacific Daylight Time,

cyashleywebb@... writes:

>

> " ....As for your second question: no easy answer, but a few things. First,

> it's

> important to remember that chronic renal failure comes on very gradually,

> and

> can be managed quite well, both before and after ESRD. So it's not like

> having

> a failing heart or something (one of my doctors says that " the kidneys are

> smarter than that! " ). A young person dying with chronic renal failure is

> extraordinarily rare. So hopefully remembering that will take away any

> bone-chilling fear.

>

> Third would be educating yourself. Obviously you've taken the first steps

> in

> this already, but continue to do so. The truth is, there are really a

> finite

> number of typical problems. There are a number of good resources out there

> (not the least of which is this list) but I do believe that the more you

> know,

> the more you can anticipate and plan for the future. Ask ANY questions you

> want of your doctor or on this list (both of which should provide an answer

> within 24-48 hours).

>

> Fourth, most people need to broaden their definition of words like " fixed "

> " cured " " help " and " all right " among others. It's not that you shouldn't

> expect

> a lot (you should!) but a little mental flexibility is good. I've had

> doctors who think they " helped " or " cured " by performing a surgical

> procedure, and

> decide that gives them license to skip follow-up care and/or behave like a

> two-year-old. Others have " wished they could help more " or though that

> " things

> may not be all right " after being up all night thwarting one problem after

> another, and answering any questions I could think to ask. If you fall into

> the

> mindset that chronic renal diseases must be " fixed " like other, more

> short-term

> conditions, you're setting yourself up for unnecessary disappointment (in my

> humble opinion!).

>

> Lastly, the thing that's helped me most (more with the inevitable slumps

> than

> with worry) is a good vision of the future. Whatever you wanted for your

> daughter before, you're still free to want; whatever you planned, you're

> still

> free to plan. Even though recitations like this are tiresome, I'm gonna

> make

> one anyway :-): people with ESRD have become professional athletes,

> successful

> business people, engineers, lawyers, and even nephrologists. Many have

> married

> and had children. Most, despite their problems, are fairly happy with their

> lives. A few " wouldn't change a thing " but most would like to change things

> yet are OK with the way things turned out. "

>

> Being almost a year from the time my son was diagnosed, it seems that most

> of the above is true.

>

> Cy

>

>

>

>

>

[Guest guest]

Cy,

She must be!

Dana

In a message dated 6/3/03 7:34:00 PM Central Daylight Time,

cyashleywebb@... writes:

<< Thanks Dana! The woman who originally wrote it is a real gem.

Cy >>

[Guest guest]

Thanks Dana! The woman who originally wrote it is a real gem.

Cy

Re: (unknown)

Hi ,

I am so sorry to hear about your son. It's been just about 9 months since

my 12 yr old son was diagnosed with MPGN (rather like IgAN, but faster time

to renal failure). I think in the past nine months I've learned more about

renal stuff than I ever expected to know. Having your kid diagnosed with

any chronic disease rather shakes one's foundations. Those first few months

post-diagnosis were really hard - as I assume they are for you too. I hope

you find this group as helpful as I have.

I've copied a few bits from a letter that a friend who's pursueing her

doctorate in renal stuff just wrote to the mum of a kid who was recently

diagnosed with FSGS (another renal nasty that hits kids). I found it so

incredibly moving that I ended up printing it out and hanging it over my

desk. My friend (who received her new kidney some time ago) leaves most of

us in the dust....

" ....As for your second question: no easy answer, but a few things. First,

it's

important to remember that chronic renal failure comes on very gradually,

and

can be managed quite well, both before and after ESRD. So it's not like

having

a failing heart or something (one of my doctors says that " the kidneys are

smarter than that! " ). A young person dying with chronic renal failure is

extraordinarily rare. So hopefully remembering that will take away any

bone-chilling fear.

Third would be educating yourself. Obviously you've taken the first steps

in

this already, but continue to do so. The truth is, there are really a

finite

number of typical problems. There are a number of good resources out there

(not the least of which is this list) but I do believe that the more you

know,

the more you can anticipate and plan for the future. Ask ANY questions you

want of your doctor or on this list (both of which should provide an answer

within 24-48 hours).

Fourth, most people need to broaden their definition of words like " fixed "

" cured " " help " and " all right " among others. It's not that you shouldn't

expect

a lot (you should!) but a little mental flexibility is good. I've had

doctors who think they " helped " or " cured " by performing a surgical

procedure, and

decide that gives them license to skip follow-up care and/or behave like a

two-year-old. Others have " wished they could help more " or though that

" things

may not be all right " after being up all night thwarting one problem after

another, and answering any questions I could think to ask. If you fall into

the

mindset that chronic renal diseases must be " fixed " like other, more

short-term

conditions, you're setting yourself up for unnecessary disappointment (in my

humble opinion!).

Lastly, the thing that's helped me most (more with the inevitable slumps

than

with worry) is a good vision of the future. Whatever you wanted for your

daughter before, you're still free to want; whatever you planned, you're

still

free to plan. Even though recitations like this are tiresome, I'm gonna

make

one anyway :-): people with ESRD have become professional athletes,

successful

business people, engineers, lawyers, and even nephrologists. Many have

married

and had children. Most, despite their problems, are fairly happy with their

lives. A few " wouldn't change a thing " but most would like to change things

yet are OK with the way things turned out. "

Being almost a year from the time my son was diagnosed, it seems that most

of the above is true.

Cy >>

[Guest guest]

I researched it a bit after the first Nefecon post, and I couldn't find a

thing. Usually, by the time something gets to clinical trials, it will

already have been tested extensively, and there would be something published

somewhere.

Pierre

Re: (unknown)

> Lori,

> Unfortunately I don't recall reading that particular

> post...I'll have to look back in the archives.

>

>

> --- Lori Danuloff wrote:

> > Hi Everyone, A few weeks ago one member of this

> > group

> > posted about a company called Pharmalink who had

> > developed a drug called Nefecon. This drug was to

> > halt the progression of IgA. I then got to the

> > website and it had indeed claimed to have a drug

> > called Nefecon that was waiting formation to tablet

> > form to ready it for clinical trials. This site

> > also

> > mentioned it needed money to get to this phase.

> > Today, I had my appt. with my Neph at the Cleveland

> > Clinic and asked him about this drug. He assured me

> > that if there was anything in trial form, he would

> > be

> > aware of it and had not heard of anything called

> > Nefecon. I was just curious if anyone else checked

> > with their Neph. to see whether or not this drug

> > really is on the horizon. Best to all of you, Lori

> >

[Guest guest]

http://www.pharmalink.se/

It took me a while to track them down, there is also a company in

japan (Takara) doing research on 'monoclonal antibodies' :-? it's

mentioned on their report I got to it via google, the cached version,

" Takara, in conjunction with Tanox Biosystems, Inc. (Houston, Texas),

has also made great strides in its efforts to find an effective

treatment for a kidney ailment known as IgA Nephropathy. IgA

Nephropathy is an illness that is caused by malfunctioning of the

body's immune system. Numerous sufferers of this disease can be found

in Japan and throughout Asia. Takara is currently striving to develop

a viable cure for IgA Nephropathy by using monoclonal antibodies. "

I've been looking for stuff from tanox, but keep hitting japanese

webpages

> > > Hi Everyone, A few weeks ago one member of this

> > > group

> > > posted about a company called Pharmalink who had

> > > developed a drug called Nefecon. This drug was to

> > > halt the progression of IgA. I then got to the

> > > website and it had indeed claimed to have a drug

> > > called Nefecon that was waiting formation to tablet

> > > form to ready it for clinical trials. This site

> > > also

> > > mentioned it needed money to get to this phase.

> > > Today, I had my appt. with my Neph at the Cleveland

> > > Clinic and asked him about this drug. He assured me

> > > that if there was anything in trial form, he would

> > > be

> > > aware of it and had not heard of anything called

> > > Nefecon. I was just curious if anyone else checked

> > > with their Neph. to see whether or not this drug

> > > really is on the horizon. Best to all of you, Lori

> > >

[Guest guest]

Hi Tonya,

I don't take fish oil, so I can't help you there, but I do have problems with

my potassium going too high. The low potassium diet takes away many of my

favorite foods too. In June, I switched from Lisinopril to Cozaar, and it has

helped to lower my potassium. It was always over 6, but now it is in the

normal range so I get to indulge in some of my favorite summer fruits.

As kidney function declines, it often becomes more difficult to control your

blood pressure. I am sorry you are having such a swing in your BP.

Blood pressure can also increase with pregnancy due to the increase in the

blood volume, and as well, that extra filtering does put added stress on your

kidneys during pregnancy. It is best to consult your Nephrologist about

pregnancy. Some blood pressure medications can be harmful for the baby, so make

sure

you get all bases covered there.

I do want to encourage you though that by far, the majority of people with

IgAN never do reach end stage renal disease, and hopefully you are in that

group.

[Guest guest]

Hi Tonya

How the kidneys handle potassium as IgAN advances into chronic renal failure

varies a lot from one person to the next. In some, potassium function is

barely affected, and in other it is affected early on.

I had lot of problems controlling my BP with various combinations of meds,

before I started dialysis. This is another very variable thing. You're lucky

yours goes down too much, because it's much easier to adjust dosage for that

than if it was the other way around.

Fish oil is pretty much in the " well, it can't hurt " category. I personally

don't think it really makes much difference in the longer run, but that's

just my opinion. I doubt that any nephrologist who " prescribes " it expects

to see any obvious results from its use.

Pierre

(unknown)

> Hello everyone, I was just going through my emails and

> read them all, I am so sorry for the ones who are

> going throgh so much, I just wanted to let ya'll know

> that my thoughts and prayers are with you. I hope

> tomorrow brings better news to all of you. How was the

> 4th for all? Mine was great and my family all had a

> good time. I have a question about fish oil can anyone

> tell me if this really helped them? I quit taking

> mine, it had such a bad smell, that I could not

> stomach it. I have read several studies on it and they

> are really inconclusive it seems, one study says it

> works and another says that it does't. So does anyone

> have an opinion on it? And does anyone else have high

> potassium with this dz? I do and am on a low potassium

> diet, which cuts out a lot of foods that I love to

> eat. Does anyone have b/p problems with their med? If

> I take both the verapamil and the lisinopril my b/p

> bottoms out to 80/40 and if I don't sometimes if goes

> to 130/116. Plus the lasix helps control the b/p too.

> And also with me having the pih while pregnant and the

> glomerularnephritis have a significant effect on the

> kidneys to advance this dz? Any answer would be well

> appreciated. My doctor only tells me that he has

> another pt with the same dz, who has been alright for

> twenty years. This isn't much comfort to me, as I am

> not the same person as he/she is. Anyway some help

> with these questions would be truly appreciated. Hope

> everyone is doing well. I hope to get to know you all

> more. Bye,for now. Tonya

>

> __________________________________

[Guest guest]

Pete:

You mentioned that you were coughing with 1/2 tablet of Avapro. I

take 3 tablets/day for a total of 450 mg, and I don't have any of

those side effects. In fact, the only time I ever got the ACE

Inhibitor Cough was when I was taking Zestril. They moved me to

Cozaar and I had no problems. Since Avapro was preferred by my

health plan because of cost issues, I moved to that, and I have

never had any problems with it. In fact, I consider it one of the

best medicines that I have taken -- I am convinced that it has

provided me a level of health that I would not have had otherwise.

As for herbal medicines -- I have to admit I don't know anything

about them. All things considered, I would rather go with a

medicine that has been proven in clinical trials to have a specific

effect, than a group of herbal medicines that are purported to have

effects, and from which a series of side effects are not known.

Walt

[Guest guest]

Tonya,

I did take the fish oil for a while but quit after reading the research on

it. My dr. had the attitude that it couldn't hurt so give it a try.

I hope your doc is aggresively pursuing control of your medical problems. My

first Doc told me that once the gross hematuria went away I would not have

any symptoms of the disease. This has not been the case with me but I think he

firmly believed it would go that way.

It is important to find a doctor who has stayed current on the research of

IGA or atleast is open to reading what you offer.

[Guest guest]

Welcome to the group Pete.

I don't think there's any need to stop drinking coffee, unless it makes your

blood pressure too high. I'm sure your doctor would say the same. Of course,

I wouldn't drink 5 cups a day either

For people who have more advanced kidney failure and who need to restrict

their potassium intake, renal diets usually say to limit coffee to one a

day. The potassium is one cup isn't too bad, but it all adds up if you have

more. I doubt that you need to worry about that at this point.

Pierre

(unknown)

> Hi everyone as a newcomer i am finding this site both informative and

> therapeutic. At this moment in time my kidney function is good and my

> creatine level is within the normal range,i was given a kidney biopsy as a

> last resort after two years of tests to find out why there was protein and

> traces of blood in my urine. The abnormal protein was picked up at a

routine

> medical, this was not the first time protein was found in my urine but

> previously it seemed to go away naturally and was not taken very seriously

> by my doctor.My heart goes out to every one who is suffering and i will

> remember you in my prayers.

> Pete N

> ps should i be avoiding coffee.

>

[Guest guest]

Hi Elvira,

What is LOL? Nadia

ODP: (unknown)

Hi Pete:)

Welcome to the group. I am not very sure about drinking coffe ...but I think

that moderate attitude to this is the best. I drink 2 -3 cups every day but

my BP is well controlled and serum creatine nearly the normal range...

My neph forbbides me to eat a lot of things LOL but has never said anything

about drinking coffee. You could ask your neph about that....but maybe the

other group members have more knowlege about that topic.

All the best,

Elvira

> ----------

> Od: pete neve[sMTP:nevepete@...]

> Odpowiedz do: iga-nephropathy

> Wys³ano: 9 lipca 2003 10:56

> Do: iga-nephropathy

> Temat: (unknown)

>

> Hi everyone as a newcomer i am finding this site both informative and

> therapeutic. At this moment in time my kidney function is good and my

> creatine level is within the normal range,i was given a kidney biopsy as a

>

> last resort after two years of tests to find out why there was protein and

>

> traces of blood in my urine. The abnormal protein was picked up at a

> routine

> medical, this was not the first time protein was found in my urine but

> previously it seemed to go away naturally and was not taken very seriously

> by my doctor.My heart goes out to every one who is suffering and i will

> remember you in my prayers.

> Pete N

> ps should i be avoiding coffee.

>

> _________________________________________________________________

> Find a cheaper internet access deal - choose one to suit you.

> http://www.msn.co.uk/internetaccess

>

>

>

>

> 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 Pam,

I was offline yesterday, and I wanted to check and see if you found the 5

stages email in the archives or not. Let me know if you are still looking for

the information.

In a message dated 9/1/2003 10:38:16 AM Pacific Daylight Time,

scoobydoo924@... writes:

> Good Afternoon,

>

> I was looking at the various comments on the 5 stages of

> acceptance, I think thats was what it was called? I was looking

> everywhere to find that, since so many people could relate to the

> information. Could someone point me in the direction of where I could

> find it or send it to me?

>

>

>

> Thanks,

>

> Pam

[Guest guest]

In a message dated 9/27/2003 8:07:59 AM Central Daylight Time,

lena0173@... writes:

> My other question is whether anyone has gotten pregnant while

> having IGAN? Is it difficult? My kidney function is normal.

I've been pregnant, but only post-transplant. There's a thread on it in the

archives for the group - you can go onto the group's Yahoogroups site to find

the thread if you're willing to dig in the archives.

Robin s

http://www.bloggingnetwork.com/Blogs/Affil/?587

[Guest guest]

Hi Lena,

To the best of my memory, I've never heard of an association, between lupus

and IgAN. I'd push your doc a little harder on this to figure out what he's

referring to. Do any of your close relatives have lupus or anything else

that places you at risk?

There is a very loose associate between other kidney diseases and other

autoimmune diseases (for instance MPGN and celiac disease are commonly found

together), but I've never heard of lupus and IgAN. There is a strong

association between lupus and kidney disease: severe lupus does cause

nephritis, but this is different from IgAN. A friend recently attended a

conference on lupus nephritis and she reported that lupus is associated with

both proliferative (IgAN is proliferative) and non proliferative kidney

disease. Hopefully someone here can provide more information because I've

just about exhausted what I know about lupus. .

IgAN does not necessarily rule out pregnancy. However, you will probably

want to see someone who specializes in high risk pregnancies. There are

many women at this site who have successfully carried healthy babies to

term. Hopefully, one of them will chime in to provide further information.

Good luck! Please keep all of us in the loop.

Cy

(unknown)

> Hi Everyone!

> My name is Lena and I was diagnosed with IGAN about 2 years ago. I

> was also told it was a kidney infection at first and have taken Cipro

> about a gazillion times. Anyway, I have 2 questions that maybe

> someone could answer for me. My doctor, who I really appreciate, has

> told me that my IGAN could possibly trigger Lupus as well. I have

> tired to research this and am not coming up with anything. Has

> anyone else been told this?

>

> My other question is whether anyone has gotten pregnant while

> having IGAN? Is it difficult? My kidney function is normal. I have

> taken Prednisone in the past but have not had any flare ups lately.

> My protein is good-My doctor says its okay, but my husband is a bit

> worried. I feel like I need to hurry before my kidneys may (or may

> not) fail. I am 30 and I've also got that darn biological clock

> against me.

>

> Thanks.

>

> -Lena

>

>

>

>

>

>

> 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 Lena,

Welcome to the group! I'm am sorry you have IgAN, but hopefully you will be

encouraged here.

On your lupus question, I have never heard of IgAN triggering Lupus, however,

some Lupus patients also have trouble with their kidneys. I am not a doctor,

but in all the years I have had IgAN, I have never heard of IgAN causing a

secondary disease such as Lupus.

On you pregnancy question, I had two successful pregnancies after I had IgAN,

but with both I had problems with spilling more protein and I struggled more

with my blood pressure. I have two wonderful daughters though and I would not

trade them for the world.

I think pregnancy has to be a very individual decision based on how your

individual kidney function is. I think most IgAN patients who conceive are

followed by a high risk OB-Gyn just to make sure they get careful monitoring.

We certainly have a number of emails in the archives on pregnancy. You can

go to messages, and type in pregnancy, and read until your heart's content!

Welcome again,

PASSION

There are many things in life that catch your eye,

but few will capture your heart...

Pursue Those.

[Guest guest]

Hi , Have you had your daughter " scoped " . They can take a biopsy

(tissue sample) and then you'll know for sure about the celiac. Also you

will know if she has colitis, ulcers, etc. I recommend Arthur Krigsman from

Long Island, NY. My daughter is autistic and 9 yrs. old and has had stomach

issues since she was a newborn. After finally finding the right doctor to

scope her we now know she has ulcerative colitis and inflammation of the

esophagus that probably comes from her damaged immune system (she is vaccine

damaged). Anyway, you will know for sure if you have it done. Good

luck..........

Kathy

Abby and Hannah's mom

Abby-9 ASD and UC

SCD for 6 days

(unknown)

> Hi there,

>

> I am a mother of a 5 year old child, Jeneah, whom is experiencing a

> range of medical issues. After 5 years of bi-weekly,useless trips to

> the doctor we have finally been able to open a few eyes. My guess,

> which is self-educated guess, is that my daughter has Celiac disease.

> We spent some time a few years ago under the care of a Naturopath, in

> hopes to find answers, and at that time it was suggested that we

> follow a CF/GF/SF/YF diet. Which we did, but not successfully. We

> eventually came to a decision to abandon the diet, not sure that we

> were getting the results we were hoping for. My fault-not clear why

> we were doing it, was not informed that there was a possibility of

> severe /long term health concerns, did not have the faintest idea how

> many hidden avenues there were (therefore not following strictly

> enough)...I could go on and on. Needless to say I am sure, we did not

> follow the diet, as it was intended. Eventually my daughters symptoms

> came to a head and we landed in EMERG. We are now working with a

> number of specialists in a Childrens Hospital-still hitting road

> blocks, since we continuously face the fact that the docs, simply

> would rather follow there medical expertise and training, rather than

> listen to an overly paranoid mother (in their eyes). Many docs

> believe that she does not have classic symptoms of Celiac and there

> has not been a diagnosed case of celiac in the family (history of GI

> symptoms though)all the b/w has come back normal or negative- so

> rightfully so...but she displays a number of symptoms that I strongly

> believe are gluten/casein related. Ie. Severe constipation, bloating,

> tooth enamel defect, recurring yeast infection (which I believe to be

> yeast albicans)and UTIs, gas, severe behaviour issues (light-switch

> effect), night time vomiting, no food allergies to speak of...blah,

> blah, blah. We have gone fora number of tests, such as ultrasounds, x-

> rays (abdomen, lumbar, bowel area), cystoscopies, blood work, sweat

> chloride, urine and culture tests etc-NOTHING.

> So, I have resorted to spending all of my free time-online-searching

> endlessly. I have come accross tons of excellent information,

> research and support. I have pretty well heard it all... from the

> docs (some of which I believe are quacks) and have had a really rough

> go with all of this. My daughter is suffering, and if this isnt

> difficult enough, she must continue to ingest gluten, until the light

> goes on and someone realizes that she must be biopsied. Sad really...

> so here I am, trying with all my might to gather as much info. as

> possible, to better cope with this once the diagnosis is made. So,

> for the most part, I will be a silent member of this group, as I am

> sure I do not have a wealth of information to share, but I will

> appreciate all of your info.sharing and feedback.

>

> Be well,

>

> Cheers,

>

> (mother of 5 year old Jeneah, possible Celiac)

>

> P.S. Just a thought...but I wonder if we can begin a recipe database,

> perhaps the moderator can figure out the table sections and people

> can begin to add recipes that have made a difference in there lives...

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>