Lisa

Either my case is the exception, or that is not how spamming is defined for these boards.

My case: I've made more than 1-2 posts and none of them were "promoting" anything. I've been here for a few months now too. It's good to check those posts before assuming a new member is a spammer.

Back to my case: I made 1 (relevant) post w/ one link and a paragraph description.

I did not spam this post anywhere else. Yet my post was considered spam and deleted. Scott's board, Scott's rules. Fair enough - but spam is not limited to multiple irrelevant posts made by new members. It applies to all of us:) .. or does it?

I did a few searches and came up with a bunch of links, some below:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There seems to be a fine line. Some links had other people recommending certain sites and some had website owners recommending ("promoting") their own sites.

I hope I am not accused of 'spamming'/ "promoting" those websites in those links - I've no affiliation

Cindy,

Since you have brought up the subject.....You were notified through a PM, that the Board Rules state that personal website and blogs are not to be placed on the post page, but, may be displayed on your Personal Profile Page. Your post was set on invisible pending administrative review.

No one, to my knowledge suggested that you were a spammer.

I looked at your website (on your Personal Profile Page) and you have listed several recipes that I would love to try and the presentation is wonderful.

I hope that you will continue to join us. And, a belated birthday to you.

I am hoping some of you that are on Lame Advertisement can give me a hand here. I started taking it 6 days ago...and I am supposed to quit tomorrow, even though I have essentially quit already. I called the drug company, and did a ton of research about this med and if it contained gluten or not. So far I have only experienced one of the side effects (crazy dreams) but no nausea or anything....until today. I believe I have a break out of DH starting on my elbow....haven't had any of those in well over a year and I am terrified that it is from the medicine. This is the first thing that has ever actually worked for me and I feel like I can actually quit this time. Has anyone else had any gluten related problems with Lame Advertisement? Oh and congratulations to all of you new non-smokers out there, I hope I can join you soon!

Hey Amy.

I started my third week on Lame Advertisement. The only side effect that I have noticed is restless sleep with some very odd dreams and an occassional dull headache. I have no gluten issues at all, but I don't have DH.

You might want to call Pfzier and talk to a Lame Advertisement representative. I did and she was very helpful and informative.

I think that lack of sleep for a while is well worth it for the rewards of becoming a non-smoker.

DAY NINE SMOKELESS!!!

Good luck to you.

I am new here and I have tons of questions as you can see from ny introduction post

Long story short it looks like my DD's endoscopy might have to be postponed because of insurance reasons.

The more i reasearch this the more I wonder how truely important is an endoscopy to get a true diagnosis of Celiac. my DD's dr said her blood tests show she has it about 90% sure but since it is such a life altering change she feels that the endoscopy is very important and so does my husband.

In some of te research I have done it looks like the scope is only to tell how much damage has been done to the villi?

Any help answering this question is very appreciated and if any one has links to studies that show it is or isn't neccesary would be wonderful!

Hey Nikki's mom,

I am glad that you are finding alot of good information here.

There are three ways to diagnose Celiac.

1. Positive Blood Work - which you have

2. Positive Endoscopy/Biopsy

3. Positive Dietary Response

If you daughters blood work is 90% positive, the remaining 10% is denial. . With a diagnosis of Celiac, even a slight positive is still considered positive.

An endoscopy can be hit or miss and can rule Celiac in, but it cannot rule it out. It will not be a guarantee.

Good luck in your decision.

Pixie,

Thank you for posting this. Green it is.

Perhaps you could order a salad and bring your own dressing.

Here are the next good news. This morning at 3am I went to bed and (sorry, TMI again) after I went to the bathroom and wiped off I had dark brown stuff in there. It was so little, that I almost didn't notice it. After seeing it I put a thin liner in and went to bed and now this morning there are dark brown spots all over. This is the bloody show. Yipieee! I've been waiting for this like forever. In the Bradley method, they teach you, after you had the bloody show, you can give birth within 1 to 3 days, very seldom it will take up to another 2 weeks.

Tomorrow is my aunt-in-laws 40th birthday and I don't have a birthday present for her yet. It would be awesome, if Lukas would come then. Wednesday wouldn't be bad either, cause that's the exact due date. Didn't somebody mention on here, that he will come on his due date, cause he's half German?

How exciting for you Stef. Yes, he will be on time. My parents were Austrian and never late for anything. Lucas, half German, I expect he will be the same.

I have enjoyed sharing your experience.

I was reading the Pam spray label again, and I got to wondering about the grain alcohol. Is it safe?? I wound up getting the Mazola cooking spray that was more "natural" and pure.

Thanks!

ptkds

Pam is gluten free. To my knowledge it is corn derived. Anything that is more natural and pure will always be my first choice also.

If a product lists grain alcohol, you should always call the manufacturer to identify the source.

Stef hasn't been online for over 24 hours now... Anyone know if anything's happening? I know it's the weekend and things are slow on weekends, but her due date is only 3 days away. And she sounded like she was getting closer and closer as the days flew by.

Angie,

I was thinking the same thing. Perhaps she is getting the nursery finished with the things that were at her mother-in-law. Maybe she will log on tonight.

Does anyone know if she is going to call anyone or a contact person here?

She is suppose to deliver on 22nd (Wed.) according to my guess

It's frustrating!!!!

There is another thread going on right now about this too!!!!

As for resturants.....call ahead and see if they can accomodate you...maybe you and your hubby could compramise!!! NOTE: As far as I know panera has a gluten-free menu!!!!! Look online! Noodles and Co has one too! And many of these places are aware of CC....just be proactive and call ahead!

Good Luck!

I just want to add Panara Bread has a gluten free menu or they will bring the ingredience list to you to look over. Gluten free does not mean that you will be house bound for meals. Although, there is a risk at eating out, it has it's benefits too.

oops...Jess covered this.

Alex,

I can't comment on the Coconut, but perhaps the salad and vegtables were just too much. Salads are hard for me to digest sometimes.

Hope you find your answer. You have come a great way. Keep up the good work.

I've been doing some research into this and so far I've found that commercially produced glucose is derived from various plant starches, often including wheat.

Skooter,

Would you kindly post a link to your research. I would like to see the research that indicates that glucose is often derived from wheat.

Should glucose be derived from wheat, it is required by law that it be listed as an ingredient, as 2boys4me indicated.

Fiddle-Faddle,

Every sport has it's risks. You have the weight the benefits from the risks. Horses, in my case, taught my children how to care through the good and the bad, responsibility, self reliance, poise and most of all, how to win and how to loose.

Wouldn't have traded it for the world.

Looks like we have the same bday!!! Happy bday to you!

ptkds

Happy Birthday to you too, ptkds! Have a great one.

Happy Birthday Angie!!! May all your wishes come true.

Angie and Steff too,

Don't mean to interupt an ongoing discussion, but..

You two need to let someone on this site know about your delieveries. We are way too impatient to wait until you and Lucas and Annika get home.

Maye someone can call someone.

We are anxiously awaiting.

CORRECT!!

dad,

Here is an example of labeling from Newman's. Newman's is a very well respected company who will always list the 8 allergens.

Newman Family Italian Salad Dressing, lists barley malt in the main contents of the ingredients. It is not highlighted nor listed as one of the eight allergens, as it is not required by law.

Gluten consists of wheat, barley, malt and rye. Only wheat is required by law to list if it is an ingredient.

Wheat free does not mean gluten free.

This is a very important issue. For the l5,000 people that have logged onto this site, it is imperative that they know that if a product says "wheat free", it is not necessarily safe to consume.

That sounds like a wonderful opportunity to get some authentic words out there. But, don't presume that they are offering an "olive branch".

I have had my share of the media. They set their stance and then edit in support of their point of view. I am only familiar with what was talked about her regarding the Whatever Show. This one is live.

Remember....Keep your friends close. Keep your enemies closer.

Hope it works out. Good luck.

How wonderful for your children! Horses and girls have a magical bond. We have had several horses when my girls were growing up. They eventually competed in Combined Training. I have never been so proud!

Encourage horses in any manner you can. It's benefits far out weigh the risks. Barb has seemed to come up with a very workable solution.

Then you should have better luck with the GI.

Enterolab can indeed give you a diagnosis... that's their specialty. Check out their Web site for more info, if you haven't already.

Open Original Shared Link

Enterolabs cannot diagnose Celiac Disease. They can, identify a gluten sensitivity. They do not claim to diagnose.

Karen,

I clearly remember in middle school being doubled over the bed in so much gas pain that I could hardly breath. The doctor told my "step-mother" (grrr) to give me lots and lots of fiber. So I drank Metamucil until I threw it up. These symptoms have followed me through life.

I most likely had IBS in the form of a gluten intolerance. In the 1960's there was no gene testing. Although I may have been predisposed to Celiac, I believe that I did not have it at that point.

My Celiac announced itself in June of 2004. I was house bound for two months with the malabsorption, fatigue, sudden diarrhea, memory issues and weight loss. When I was able to leave the house, my PCD was not able to help me and recommended at GI. Through the endoscopy and biopsy I was diagnosed with Celiac. My Celiac trigger was immediate.

So with that said, my poll may be a little off. I, in reality have been diagnosed two years ago and undiagnosed for two months. I have had symptoms all my life, but I don't attribute that to Celiac (perhaps pre-Celiac).

Neuropath is showing it's nasty little head.

Celina

Try Children's Mylanta

I know I KNOW..I PROMISED I WOULDN'T COMMENT BUT............................

CHRIS....You took the words out of my mouth...

I was going to say...."Well, let's hear it for a gentleman taking the HIGHER ROAD!

CHRIS..I'M SO impressed with you. I knew you were a wonderful person from your posts...

Maybe you can make a differnece..

Thanks for 'taking the higher road'. You have a 'clean slate' as my shrink would say.

Hugs and Love

Judy in Philly

AND Cheers to you Judy, for bringing this to everyone's attention. I am sure it will make a difference.

Thank you Judy!

Thanks for the link, Patti--that makes everything much clearer. Not being a Martha Stewart fan, I had no idea she even had a daughter, let alone one with a radio show.

Also, thanks to all who posted clarifying info. Ravenwoodglass's point (that it's the years of damage caused by years of misdiagnosis that can turn this into something deadly) especially puts it all in perspective.

Judy, I think your friend's letter was marvelous--concise, to the point, and yet still polite and respectful. I'm very curious--did Alexis respond, and if so, what was her response?

Broncobux, I understand all your points, and I don't disagree with those points, just the manner in which you presented them. If you think someone is ignorant, by all means, educate them, but you can't educate with rage. And if you have someone you think is arrogant, simply giving them links to look up is probably not going to be effective. Look how many here have had difficulty getting family and friends to understand--and family and friends are supposed to care! (And yes, I do agree with her point that your friends SHOULD be accomodating to your illness!)

We certainly can't expect someone who has never been touched by severe, undiagnosed celiac to understand where we are coming from unless we educate. And lashing out with all the anger and frustration you've built up after umpteen years of suffering--that doesn't educate.

I think it would be better to put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma.

My take on Alexis after reading the links (I did not hear the show and have never heard her before) is that, as you said, she is woefully ignorant. But what kind of response do you expect when you tell someone that they are woefully ignorant? Do you think they are going to want to run right out and do research? Or are they going to get defensive?

I am disturbed that she only sees the loss-of-convenience component of celiac, and is apparently oblivious to the life-threatening situations so many of you have endured. I suppose it 's possible that she has only had contact with celiacs who were caught early, and doesn't know about the effects of long-term gluten poisoning. But that is where we can do something positive. And lashing out at her is not doing something positive.

Is she correct that, in the scheme of things, there are worse things? Of course. Anyone who has ever lost a child could tell you that. I do see why you don't think she "gets it," though, especially where she says that she has "read plenty." Again, though--most of us didn't have a clue what it's really like until we went through it ourselves.

I think we should try to get a dialog going with Alexis about celiac disease in general. This is a great opportunity to get her on our side and maybe help educate others. Maybe we could put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma. I know it's tempting to scream about what we've been through (and I really shouldn't include myself in that "we", as my symptoms, distressing as they were to me, just don't compare with most of yours), but I have found that people who haven't been touched by something similar just shut down when you start talking. I nearly lost my oldest child before he was born, and he had open-heart surgery at 2, and was diagnosed as autistic at 3, but when I have tried to explain that to people, their eyes just glaze over, and they change the subject as soon as possible. But when I have talked about studies related to autism, they are interested. I suppose they just don't want to know too many personal details; perhaps it sort of gives them the responsibility to care--and they don't want to.

So let's collect some concise information about celiac and send it to Alexis along with an invitation

to join us on a new thread discussing what it's REALLY like to have celiac, and how those who suffered for years before diagnosis have a very different take on it than those who were caught relatively early. And we can educate her about how Europe handles gluten issues. I bet she doesn't know that Italy and Sweden routinely screen all toddlers for celiac, for example. We could invite her to ask questions, and maybe we can change some of her misconceptions if we approach her with the same politeness and respect as Judy's friend did.

Broncobux, I think you do have a lot of important things to say--but you always come across to me as being so full of rage, my impression is sometimes that you are totally unbalanced. And you are probably not unbalanced! But your words paint a picture, and probably not the one you intend. I know you probably had to scream for years to get the doctors to listen to you (and they probably didn't anyway), but I get the impression that you are now in the habit of screaming whenever you disagree with someone or whenever you think that they have done you wrong. And that is probably cathartic for you, but not the best way to deal with others, no matter how ignorant or arrogant you think they are.

Does anybody know what the current proportion is of celiacs who were caught early (Group #1)compared with celiacs who were misdiagnosed for enough years to have severe, permanent, debilitating damage (Group #2)? Hopefully, the first group will someday be the only group, and I assume the first group is increasing quickly, but I'm curious what the proportion is.

I know I owe a lot to Canadian Karen, Lynne, Ursa Major, Judy, and others who were posting their experiences a year and a half ago. Without you guys, I would have been in the second group, as I would not have known enough to stop eating gluten. I've noticed that, without exception, all my acquaintances who hear I am gluten-free are far more appalled by the lack of convenience than they are by the risks I would face in continuing to eat gluten, so perhaps Alexis' attitude is merely a reflection (and a sad one) of our society in general.

I would think it wise to discuss content and not profile a personality. On a public forum, I would find that extremely inappropriate.

What we've done for my DD in the past when she gets glutened is follow it up with a good gluten-free food. Seems to provide her some relief and her digestive system something else to do besides process the gluten.

Yes. The BRAT Diet is often recommended for glutenings.... Banana, Rice, Apple Sauce, and Tea.