new member

[Guest guest]

Liz -

Welcome to the website. I am sorry to hear about your losses, most of

us here understand the pain you are going through.

A couple of things struck me about your posting. The first thing was

that your symptoms are actually positive, despite your not having a

monthly flow. Monthly pain and a thick endometrium are very positive

signs (one thing many members here struggle with is a thin lining,

caused by previous scarring). Having said that, it sounds like your

cervix may be scarred shut. Three months of birth control pills will

do nothing to help that, so I would avoid going that route.

I agree with the ladies who previously replied to your post in that

you should seek a doctor experienced in treating AS. You need an HSG

(which will most likely be unsuccessful if your cervix is scarred

shut) or a hysteroscopy. Unfortunately, it sounds like you have a

battle on your hands with your current doctor.

The other thing that struck me is you have had 3 m/c's in a

relatively short period of time - are your doctors doing anything to

investigate the causes? I would push for that, as well. That's jsut

my two cents :-).

Best of luck to you, Liz, and please feel free to ask all the

questions you want!

Bethany

[Guest guest]

Terry M,

In the files section under "our stories", many members have added their story to save repeating it to others if others are interested in reading up on them. I thought it was nice of you to write your story to Hope and brief her but I also thought that it is long for you to be repeating it everytime a member requests your story. Why don't you add your story on the site too so that you can always refer members to it?? If that sounds ok for you, then save it as a word document on your computer and you can add it yourself.

Of course, this applies to any other interested member if they wish to add their story. Let me know if you have any problems adding it.

Poly

[Guest guest]

,

I'm just catching up on posts and I just wanted to welcome you. I'm

sorry for the circumstances that got you here but I hope you will

find all the info and support you need...

I think you are doing the right thing in considering going to a

doctor that you might know more than your RE or OB. I think you will

find it worthwhile in the end.

I wish you lots of luck...

Liz S.

[Guest guest]

Dear e,

I know it is extremely frustrating!! Please call Dr. Dunn's office: . Get an appointment with him!

<HUGS>

D.

[Guest guest]

,

I realize that I am a complete and total stranger giving you an

opinion on the internet not knowing any more about you than what

you've already told me, so if I'm off-base, please forgive me.

I really think you need to discuss these issues with your family if

there is any way they can help you get treatment. You are so young,

but if this is Asherman's and you have scarring, leaving it there for

years can affect your future fertility. You do not want to be 10

years later wishing you had told them so you could get help, or worse

yet, having them wish you had told them so they could help you.

The surgical treatment for Asherman's can be expensive, but the

diagnostic testing does not have to be. I had an SHG to check for

scarring at a cost of @ $500.

Please find a way to check and see what is wrong with you (if your

family can't help you, do you have a church that can??). Hopefully

it's something that a bottle of estrogen can take care of, but you do

not want to jeapordize your reproductive future now!!!

Sorry if I sound too preachy. I just know the hard way how it feels

to want a family.

[Guest guest]

Dear Ginger,

I am so sorry for your losses and your dx of AS. It sounds as if you have found

a good doctor to treat you. Please let us know the follow-up and what your

doctor says about your current status? your lining sounds great. Did he say you

can TTC??

Good Luck.

<HUGS>

LAura D

[Guest guest]

Ginger,

I didn't get a chance to welcome you to our group. I see that a few members are helping you out with your questions.

I tried to email you privately but your email keeps coming back, so I will send this through the group:

Ginger,

As I do with all new members, I remind them to delete the email they are responding to when you reply to emails. This is so that those receiving daily digests don't have to scroll down to find the next email and also to save valuable space on the site which we are limited to.

Also, I was wondering about a pending member with the same email address as yourself. Did you try to join twice?? I am confused about this pending member and don't know if it the same person. Can you shed some light?

Poly

[Guest guest]

Ginger- A sad welcome to you- I certainly hope things work out well for you after your surgery- this is an amazing group of women- I hope they can help you find the answers you need

, Mike, Brenna Jordan Ross-born 9/26/97(VSD, PS- open heart surgery 1/29/98), and Jaden Kalyan Ross-born in Cambodia July 15, 2001 home with us forever May 3, 2002, Colin Spencer Ross- born July 27, 2002, Baby Angel born still 11/7/00, and Riley and Snoozer the dogs

Join us again next year in remembering the millions of people affected by CHD on 2/14/2003:  "A Day for Hearts: Congenital Heart Defects Awareness Day!"

[Guest guest]

-

I am so sorry for what you've been through- and for the fact that you're facing this alone and without insurance. I wish I knew a good answer for you- but I think for the time being the best thing you can do is to arm yourself with information- so when you can deal with this you are prepared- when you get a job with insurance chose a policy most likely to cover this type of problem. If you can avoid seeking help until yyou have insurance because without prior insurance I believe in FL they CAN exempt pre-existing conditions from treatment for up to a year- with out a medical record it's not pre-existing (Insurance portability only requires them to cover if you have a pre-e condiiotn IF you had insurance before the new insurance)

Also you might want to be prepared to complain of pain and light periods over fear of infertility when you see a Dr- so you don't have to deal with tis being seen as an infertility issue- and finally when you can get insurance you might want to check if you have a choice in policies for one that covers an A-list Dr.

I wish you the very best in your journey!!!

, Mike, Brenna Jordan Ross-born 9/26/97(VSD, PS- open heart surgery 1/29/98), and Jaden Kalyan Ross-born in Cambodia July 15, 2001 home with us forever May 3, 2002, Colin Spencer Ross- born July 27, 2002, Baby Angel born still 11/7/00, and Riley and Snoozer the dogs

Join us again next year in remembering the millions of people affected by CHD on 2/14/2003:  "A Day for Hearts: Congenital Heart Defects Awareness Day!"

[Guest guest]

Dear Tina,

I live in London and have had excellent, successful surgery for severe

AS with Mr.Lower in Harley Street (also Consultant Gynae at Barts)

Although my cavity was clear after surgery in UK I also followed up with

surgery with an A list doc. in Germany - Dr.Gallinat, just to make sure

things were o.k. Dr.Gallinat confirmed that Mr.Lower had done a very

good job so I could certainly recommend him if you want to pursue

treatment in UK. Otherwise Dr.Gallinat in Germany has helped a number of

UK patients, including one who has just had a baby. In my case my lining

is very patchy now so I don't know if I will be able to have more

children (I already have a daughter) - but I have just finished my

hormone treatment and will be ttc this month.

We have a UK group here which is also great for info. Lesia can add you

on the group if you contact her.

Please feel free to ask any questions you need to. I found very little

info. in UK until I found this group but hopefully now you can get all

the support and help you need. Good luck with your AS journey.

a UK

[Guest guest]

Dear a,

Thank you for your reply, could you tell me how i would get in contact with

Mr. Lower, do I have to be refered by my own g.p. or can we contact him

direct, via email or phone and the same with Dr Gallinat.

I wish you all the luck with your treatment please keep me updated on your

progress. Thank you again

Tina U.K.

>

>Reply-To: Ashermans

>To: <Ashermans >

>Subject: RE: new member

>Date: Wed, 16 Jul 2003 11:50:04 +0100

>

>Dear Tina,

>

>I live in London and have had excellent, successful surgery for severe

>AS with Mr.Lower in Harley Street (also Consultant Gynae at Barts)

>Although my cavity was clear after surgery in UK I also followed up with

>surgery with an A list doc. in Germany - Dr.Gallinat, just to make sure

>things were o.k. Dr.Gallinat confirmed that Mr.Lower had done a very

>good job so I could certainly recommend him if you want to pursue

>treatment in UK. Otherwise Dr.Gallinat in Germany has helped a number of

>UK patients, including one who has just had a baby. In my case my lining

>is very patchy now so I don't know if I will be able to have more

>children (I already have a daughter) - but I have just finished my

>hormone treatment and will be ttc this month.

>

>We have a UK group here which is also great for info. Lesia can add you

>on the group if you contact her.

>

>Please feel free to ask any questions you need to. I found very little

>info. in UK until I found this group but hopefully now you can get all

>the support and help you need. Good luck with your AS journey.

>

>a UK

>

>

_________________________________________________________________

On the move? Get Hotmail on your mobile phone http://www.msn.co.uk/msnmobile

[Guest guest]

Hello Tina,

You will probably need to get a referral from your G.P. (or any

consultant you have seen so far) if you want to see Mr. Lower in 136

Harley Street privately and have medical insurance. If you want to see

him and are willing to pay without insurance then I think you can just

approach the clinic directly. (the tel no. for the Harley clinic is 020

7486 2440)

You can also see Mr.Lower at Barts on the NHS but I think this could

take a very long time and you would definitely need a referral.

Corrina is a member of the group from Germany and she has helped all the

UK ladies with arranging their appointments with Dr.Gallinat. She has

been incredibly kind in speaking to the clinic on our behalf and I had a

lovely time meeting her when I went for surgery in April. I also have

details of the clinic if you wanted to make contact with them yourself

but personally I found having Corinna's support very valuable. Of course

I had to pay for the surgery myself as my insurance wouldn't cover

treatment outside UK and the cost was around £1200 but I think it was

worth it to know I have done everything I can to get the best treatment

for my AS.

Please come back with any other questions. I know making the decision

about staying in UK for treatment or going to Germany can be a very

difficult one to make but at least you now have two names of surgeons

who know what they are doing with AS.

Keep in touch,

All the best,

a UK

[Guest guest]

Hi Priscilla,

It sounds like you have not read the book. My stock answer to everyone is

" read the book " and then read it again if you still don't grasp the

concepts.

You will find that this way of eating will be much easier if you first

understand the basic principles on which it is based.

Also, you would be wise to ignore any of the prepared " South Beach " food

that you may find on your grocer's shelves. But that's another story.

Chuck

on the beach over 2 years

New Member

> Hi Everyone,

> I'm new to the group and I am going to try my best to

> start the south beach diet, I am curious about portion sizes like they

> say to eat all the protein u want, what does that mean, do u have to

> limt sizes and when it comes to eggs is it ok to eat just the egg

> white? I have high cholesterol so i am just curious, thanks for

> allowing me to join the group and If anyone has any information for me

> that will be great, thanks!

>

>

[Guest guest]

I'll have to echo Chuck on this one -- it REALLY sounds like you haven't

read the book yet and if that's the case, you REALLY need to give it a read

or two.

> I'm new to the group and I am going to try my

> best to start the south beach diet, I am curious about

> portion sizes like they say to eat all the protein u want,

> what does that mean, do u have to limt sizes and when it

> comes to eggs is it ok to eat just the egg white?

The book goes into significant detail about portions and servings. The long

made short -- you eat the servings as portioned by the book. If you're

still hungry, then you eat more. The key is to stick with foods on the

approved foods list (an up to date copy of which you will find in the file

area of this group).

As for eggs, you can eat just the egg white if you prefer.

> I have high cholesterol so i am just curious,

Several studies have shown there is no link between dietary intake of

cholesterol and cholesterol levels. However, work with your doctor and

follow his/her instructions on this matter.

[Guest guest]

there really aren't portions on the diet; and you can eat all the eggPriscilla wrote:

Hi Everyone, I'm new to the group and I am going to try my best to start the south beach diet, I am curious about portion sizes like they say to eat all the protein u want, what does that mean, do u have to limt sizes and when it comes to eggs is it ok to eat just the egg white? I have high cholesterol so i am just curious, thanks for allowing me to join the group and If anyone has any information for me that will be great, thanks!

Yahoo! for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Hello Priscilla and welcome to the group!

The SBD does not limit foods. There are some things for (nuts for

example) where you should not exceed a certain servings per day... I've

pasted the from the group's files... it should help

http://f6.grp.yahoofs.com/v1/ME0_Q_nYl8uGKlAjdlJvAP6qJKjxdoJYE_jMl_QsYd7iNuqko5S\

gH7FpjM-oxONpjG40FRQzTBMLF92Ra0Lcmit7kKFP_n48nmWk/Phase%20One/Phase%201%20Foods%\

20to%20Enjoy

Just make sure you're feel full and satisfied after every meal and that

you include plenty of vegetables.

Hope this helps!

Paola

--- Priscilla wrote:

> Hi Everyone,

> I'm new to the group and I am going to try my best to

> start the south beach diet, I am curious about portion sizes like

> they

> say to eat all the protein u want, what does that mean, do u have to

> limt sizes and when it comes to eggs is it ok to eat just the egg

> white? I have high cholesterol so i am just curious, thanks for

> allowing me to join the group and If anyone has any information for

> me

> that will be great, thanks!

>

>

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

Hi everyone, I'm a newly diagnosed woman with CD. I have the DH form of the

illness and in truth, I'm really PO'd. I've known for years (since I did the

induction phase of dr Atkins many years ago) that my skin is great if I don't

eat wheat. I tried rye and barley as cereal for breakfast and had instant

breakouts - ugly, ugly zits which were very painful.

Then late last year, I had a horrible symmetrical set of hives on my forearms.

they looked like cold sores at one point and burned and itched and nearly drove

me crazy. Nothing touched the pain/itch until I found a cream at the health

food store which finally soothed it and allowed it to heal. Needless to say, I

have ugly scars from them, since I scratched in my sleep and if I wasn't

conscious of it. Ironically, no one has ever suggested a test for Celiac!

Sheesh, how dumb are these doctors? I went to a walk in clinic with a boil.

When I took off my jacket the doc asked how long I'd had Celiac's. when I asked

for clarification, she pointed to the scars on my arms. When I said I didn't

know, she immediately ordered a bunch of tests, which have come back positive.

Duhhhh

the good news is I haven't eaten wheat, rye or barley for some years, so I feel

like I'm starting from a good place but I'm confused by a couple of things. Is

vinegar (white vinegar made from malt) okay? Some books say it's not and others

say it is. When I look at real mayo, vinegar is the only thing which seems to

be a problem, but i thought I'd make my own for awhile and see how I feel (I'm

exhausted all the time). What's the consensus about mayo, since it contains

vinegar? Ditto for mustard?

I'm going to study the files, but eating out seems to be a big problem. I

travel to the US many times each year, on business, and am not certain if I

should bring food, where I can, or take a chance. Any thoughts?

I am really looking forward to getting over this fatigue. and the Osteopenia.

So I'm willing to do whatever it takes to feel better.

thanks

Louise

[Guest guest]

Whole Foods has a GF mayonnaise that I have grown to enjoy (it is made from canola oil). I can't remember the name of it at the moment, but I am sure someone else will come along and help out. It is labeled GF on the label, so you can't really miss it.

French's mustard is GF - I eat it all the time and have no issues with it.

--E new memberHi everyone, I'm a newly diagnosed woman with CD. I have the DH form of the illness and in truth, I'm really PO'd. I've known for years (since I did the induction phase of dr Atkins many years ago) that my skin is great if I don't eat wheat. I tried rye and barley as cereal for breakfast and had instant breakouts - ugly, ugly zits which were very painful.Then late last year, I had a horrible symmetrical set of hives on my forearms. they looked like cold sores at one point and burned and itched and nearly drove me crazy. Nothing touched the pain/itch until I found a cream at the health food store which finally soothed it and allowed it to heal. Needless to say, I have ugly scars from them, since I scratched in my

sleep and if I wasn't conscious of it. Ironically, no one has ever suggested a test for Celiac! Sheesh, how dumb are these doctors? I went to a walk in clinic with a boil. When I took off my jacket the doc asked how long I'd had Celiac's. when I asked for clarification, she pointed to the scars on my arms. When I said I didn't know, she immediately ordered a bunch of tests, which have come back positive. Duhhhhthe good news is I haven't eaten wheat, rye or barley for some years, so I feel like I'm starting from a good place but I'm confused by a couple of things. Is vinegar (white vinegar made from malt) okay? Some books say it's not and others say it is. When I look at real mayo, vinegar is the only thing which seems to be a problem, but i thought I'd make my own for awhile and see how I feel (I'm exhausted all the time). What's the consensus about mayo, since it contains vinegar? Ditto for

mustard?I'm going to study the files, but eating out seems to be a big problem. I travel to the US many times each year, on business, and am not certain if I should bring food, where I can, or take a chance. Any thoughts?I am really looking forward to getting over this fatigue. and the Osteopenia. So I'm willing to do whatever it takes to feel better.thanksLouise

[Guest guest]

I've never had any problem with mayonnaise. I use Best Foods. All kinds

of vinegar are fine, including white vinegar, except for Malt vinegar

(which i have never seen in mayonnaise?). These are two different

things. (white vinegar vs. malt vinegar). It used to be thought that

the gluten protein could survive the disillation of vinegar, but this

has been disproven in recent years. Many of us who were diagnosed years

ago were laboring under false information, so this explains why some

books may say it is not true. For mustard, you just want to make sure

you read the ingredients, but most mustard is fine.

When travelling you may want to scope out the options ahead of time. In

general you can usually at least have a baked potato, and maybe even

plain seafood, chicken, or meat. (Just watch for soy sauce based

marinades). Mexican restaurants can be useful, if they have corn

tortilla options. Be careful with enchiladas, as enchilada sauce (green

chili sauce etc) often contains wheat as thickener. Ask your server!

Thai restaurants are also often good options, but make sure they aren't

a fusion place with soy sauce.. It doesn't hurt to bring snacks, but

you don't necessarily need to go crazy with it.. it's up to you. As a

last resort you can always go to a grocery store and get a hard boiled

egg, one of the prepared salads in the deli section (check for

croutons!!!), fruit, cheese, rice crackers (or cakes if you must, but i

don't like them myself)... whole roasted chickens or lunchmeat... candy

and/ or potato chips for a less healthy option.

> the good news is I haven't eaten wheat, rye or barley for some years,

so I feel like I'm starting from a good place but I'm confused by a

couple of things. Is vinegar (white vinegar made from malt) okay?

Some books say it's not and others say it is. When I look at real

mayo, vinegar is the only thing which seems to be a problem, but i

thought I'd make my own for awhile and see how I feel (I'm exhausted

all the time). What's the consensus about mayo, since it contains

vinegar? Ditto for mustard?

>

> I'm going to study the files, but eating out seems to be a big

problem. I travel to the US many times each year, on business, and am

not certain if I should bring food, where I can, or take a chance. Any

thoughts?

[Guest guest]

Hi Louise,

Welcome! Where do you live? The need to bring food to the US probably depends on where you travel to. Most urban and suburban areas will probably have a health food store that will stock gluten free foods. Some rural areas will not. Many grocery stores have begun stocking gluten free cereals, crackers, and cookies, however, you are less likely to find gluten free bread. The restaurant files could be quite helpful in determining restaurants with gluten free options. If you need to travel to a particular city, I would suggest asking for recommendations on this board. There may be someone who has experience with the area.

Jupiter, Florida

new member

Hi everyone, I'm a newly diagnosed woman with CD. I have the DH form of the illness and in truth, I'm really PO'd. I've known for years (since I did the induction phase of dr Atkins many years ago) that my skin is great if I don't eat wheat. I tried rye and barley as cereal for breakfast and had instant breakouts - ugly, ugly zits which were very painful.Then late last year, I had a horrible symmetrical set of hives on my forearms. they looked like cold sores at one point and burned and itched and nearly drove me crazy. Nothing touched the pain/itch until I found a cream at the health food store which finally soothed it and allowed it to heal. Needless to say, I have ugly scars from them, since I scratched in my sleep and if I wasn't conscious of it. Ironically, no one has ever suggested a test for Celiac! Sheesh, how dumb are these doctors? I went to a walk in clinic with a boil. When I took off my jacket the doc asked how long I'd had Celiac's. when I asked for clarification, she pointed to the scars on my arms. When I said I didn't know, she immediately ordered a bunch of tests, which have come back positive. Duhhhhthe good news is I haven't eaten wheat, rye or barley for some years, so I feel like I'm starting from a good place but I'm confused by a couple of things. Is vinegar (white vinegar made from malt) okay? Some books say it's not and others say it is. When I look at real mayo, vinegar is the only thing which seems to be a problem, but i thought I'd make my own for awhile and see how I feel (I'm exhausted all the time). What's the consensus about mayo, since it contains vinegar? Ditto for mustard?I'm going to study the files, but eating out seems to be a big problem. I travel to the US many times each year, on business, and am not certain if I should bring food, where I can, or take a chance. Any thoughts?I am really looking forward to getting over this fatigue. and the Osteopenia. So I'm willing to do whatever it takes to feel better.thanksLouise