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Lisa

So Many Newbies Have Joined Us

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I could not find what I was looking for on OMG either. I read the first ten pages and took a break. If I find it I'll refer you. If you do please tell me.

I think iodine was mentioned sometime in the first 100 pages. You don't have to read all of it, just jump in and ask a question. The girls in the know are on at various times through the day so you may not get an answer right away. I don't know about iodine so I won't be answering.....but I always say "HI".

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budew,

I just want to add to the list of people who want you, and others, to continue to post. we honestly want to help and offer any insight that we have. searching is a great tool but asking is just is important. this thread is more for us old people who have lost sight of the mission of this board and was a gentle kick to us to remember where we were when we first started. Many of us have continuing health problems (some related, many unrelated to Celiac) and we become focused on trying to figure out what is going on with us, and often do not make the time to help the newbies. On the other hand, to me, it is unbelievable that there are people who are struggling to get by everyday and yet take the time to welcome a newly diagnosed Celiac....I stand amazed at the goodness of so many of these people who have yet to gain their health back (again, some celiac related, some not).

I hope you stay and you find information and comfort in these pages and knowledge (and this goes to all of the other great people who have responded to this thread). Please let me know if there is ever anything I can do...PM anytime.

Laura

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Hey Guys:

Mind if I butt in here a minute while good work is going on :)

I have been computer less since I posted the initial post here. I just got home this evening and I could not believe in the six pages of awesomeness and to be honest I am so wonderfully surprised. WOW.

Every post that I have read (for the most part, and even then an expression of opinion is ok, as it appeared to be honest) has been positive, informative and helpful. I think that all of you have opened a new approach, with open-mindedness: and, have created a wonderful soft place to fall, when a newbies world has been turned up-side-down. Three cheers to all of you.

So many great ideas can be implemented to make the source of information flow better. It seems that the welcoming crew is in place and the more medical and detail team is ready to follow. HOW COOL IS THAT :D

All of you... this is a prime example of what good people do to make some one's life a better one.

Lisa

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budew,

I just want to add to the list of people who want you, and others, to continue to post. we honestly want to help and offer any insight that we have. searching is a great tool but asking is just is important. this thread is more for us old people who have lost sight of the mission of this board and was a gentle kick to us to remember where we were when we first started. Many of us have continuing health problems (some related, many unrelated to Celiac) and we become focused on trying to figure out what is going on with us, and often do not make the time to help the newbies. On the other hand, to me, it is unbelievable that there are people who are struggling to get by everyday and yet take the time to welcome a newly diagnosed Celiac....I stand amazed at the goodness of so many of these people who have yet to gain their health back (again, some celiac related, some not).

I hope you stay and you find information and comfort in these pages and knowledge (and this goes to all of the other great people who have responded to this thread). Please let me know if there is ever anything I can do...PM anytime.

Laura

Thanks this forum has been great for me. Personally being sick cut me off from other people. I cherish these connections. Before illness I got my satifaction from helping others. I taught for 22 years. Every year I adopted a family to help. Without the job I just couldn't find a way to help others. I felt like no one needed me. Right now I feel like I'm on the right track. I actually get more out of trying to help others than myself. The forum gives me the mental stimulation I crave. It is so satisfying to feel like I am contributing to the welfare of others once again. Losing my job and friends was way harder to deal with than being sick. I feel like a new woman. Productive. It feels good to be wanted and needed. You guys are filling a void no place else has. I feel much better about the forum now and have spent much of the day trying to help others. The only reason I reacted so strongly was because I care so much about people and did not want to give up the best thing that has happened to me in a very long time. :)

Thank you all.

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Budew,

With young children, this forum is my "friend". I have made some good friends here and I'll always cherish that. It is a good place to come and help and learn and ?????.

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bud,

happy to read your response. sad, obviously, that you have gone through SO much. this is a forum whose members have very similar...and yet different....stories. the thread that weaves us together is that we understand and symphathize. i'm happy you have found this resource and hope to get to know you better!

Laura

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Andrea-

I really admire people with the courage to raise children. It must be really hard to deal with the isolation child rearing can cause for some folks. As a teacher I know what it is like not to have another adult to talk to. One year we made an area in my 5th grade classroom for the children of a stay at home mom (former teacher) who was having a hard time with the isolation. It turned out great. A win, win, win. I love to make dreams come true for people. I sat by her at a school board meeting. She told me her situation. I got her phone number, permission from the principal and the rest is history.

Glad you find comfort in the forum too!

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I was wondering if you could clarify some of this for us, except the sunshine enema- that was pretty clear. No one was looking for that when this thread began.

It was a call to VETERAN CELIACS not just veteran board members to help people who are newly diagnosed. therefore, I would say you are a veteran. not a newbie in the sense of being diagnosed.

What do you mean you've been paid for research? Are you a researcher or are you involved in testing? Clinical trials? Are you a doctor?

What do you mean you got paid to "quackbust"?

This is uncalled for on many counts. there ARE people who do have MANY problems- all of them valid (thyroid, depression, gluten ataxia, other food intolerances). I'm not interested in "crucifying" anyone. I actually believe in science as well; however, no one said you had to read the signatures, as others have pointed out.

It's good for us to get feedback and I am sorry you feel so put off, but there is a way to be CONSTRUCTIVE when criticizing. It's one of the first things I teach my students.

I mean, that I research. It's called patient education research. Essentially, I read the medical literature, and the pseudoscience, and the stuff trying to pass off as one or the other. Then I translate it for people who haven't read medical dictionaries for fun (leave it laying around, I'll read it), write articles, et cetera. Help people understand the doctorese.

And help them understand WHY things are utter hooey at best, and downright dangerous at worst. As for getting paid, I write articles. People buy them. I get a commission if they're on a website, or they buy them outright. I've written for a couple books too, but that has to do with a total other subject (autism. I am autistic, the kind with the speech delay and that isn't high functioning even if they do type well).

My manner is very direct. If you don't like it there really isn't a whole lot I can do about it. Call it traumatized child syndrome if you will; I learned a long time ago that no matter how hard I work to please people it ain't gunna work so I may as well be me and at least know who I am at the end of the day.

Kassiane

who wasn't trying to start a fight, isn't good at being subversive like that.

inverted autist

Who said anything about 'sleepy' adrenals? You better believe there is such a thing as adrenal fatigue, adrenal burnout or even adrenal failure (which will happen if you ignore the first two, and can be deadly). Just because your average MD is absolutely clueless about this problem doesn't mean it doesn't exist. Just as most MDs know nothing about celiac disease and the gluten-free diet. Are you now going to suggest those don't exist, either?

I HAVE adrenal failure. I had an adrenal crisis last MONTH when I got attacked at a university. Injectable dexamethasone (that I carry) saved my life. 5mg prednisone/day gave me my life BACK.

It did not start with adrenal fatigue or adrenal burnout. It started when my pituitary crapped out. I also have diabetes insipidus. Because my pituitary crapped out.

If you're on your way to Addison's, I suggest a good endocrinologist. And to suggest that I don' believe in two conditons that I have is

a) utterly ridiculous

B) FAR more insulting than anything I said.

Do I need a signablog too for people to believe that I've got medical conditions? I've mentioned this one three or four times. I believe in the "Offensive" (Hey admin, this one offended me AND was a personal attack) post I SAID I HAVE ADRENAL FAILURE.

Cripes. Now I want crepes. And baklava. I shouldn't have to defend myself against a clique. It's like high school all over again.

Kassiane

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I mean, that I research. It's called patient education research. Essentially, I read the medical literature, and the pseudoscience, and the stuff trying to pass off as one or the other. Then I translate it for people who haven't read medical dictionaries for fun (leave it laying around, I'll read it), write articles, et cetera. Help people understand the doctorese.

And help them understand WHY things are utter hooey at best, and downright dangerous at worst. As for getting paid, I write articles. People buy them. I get a commission if they're on a website, or they buy them outright. I've written for a couple books too, but that has to do with a total other subject (autism. I am autistic, the kind with the speech delay and that isn't high functioning even if they do type well).

My manner is very direct. If you don't like it there really isn't a whole lot I can do about it. Call it traumatized child syndrome if you will; I learned a long time ago that no matter how hard I work to please people it ain't gunna work so I may as well be me and at least know who I am at the end of the day.

Kassiane

who wasn't trying to start a fight, isn't good at being subversive like that.

inverted autist

Kassianne- Thanks for clarifying. I was jsut wondering what you meant by you get paid to quackbust.

Like you said, at least you know who you are at the end of the day. I'm glad you weren't trying to start a fight but I'm sure you realize, as you have been misunderstood by others, that your post was pretty off-putting. But everyone deserves a second chance.

And you also must realize that even science and research have their limits and biases. Some people don't get all the answrs they need through "conventional" American medicine and there are plenty of other types of medicine (Chinese, Ayurvedic) that have been around a LOT longer and have their benefits too.

The most important thing, even if you disagree with someone's claims, is to understand that that is what they are experiencing and experience is valid too.

Be well.

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I've started this post several times and deleted it thinking that as a new person here maybe I should keep my thoughts to myself. I said in a previous post this board has been a real source of support and hope. I was disappointed that one negative post from Kassianne was able to change the original helpful and optimistic mood of this Newbie thread. I have also noticed that Kassianne has not posted here again to explain, answer questions that were asked or defend her post

I need to read truth, feel support and acceptance and learn of reliable sources here, I hate that negativity has crept in. Sissy

Well duh. Everyone jumps on me so I really want to come back.

No wonder newbies don't speak up, if you treat everyone with an opinion like this.

Kassiane

google me.

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Well duh. Everyone jumps on me so I really want to come back.

No wonder newbies don't speak up, if you treat everyone with an opinion like this.

Kassiane

google me.

I'll save them the trouble.

First: www.rettdevil.com

www.crazymeds.org (which is one of, if not THE best, consumer driven pharmaceutical sites on the net.)

And if you actually GOOGLE Kassiane, all but two of the FIRST PAGE are her.

http://www.google.com/search?sourceid=navc...&q=kassiane

Kassi is good people.

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Kassiane:

What came before in your life often makes up who you are. You don't have to justify that. If someone, or something put you off on this forum, I am sorry. I am sure that you are aware that, often blunt words can be construed as being rude, as there is no inflection on the written word as we chat with each other. Many times a good thought, sentence or opinion is often misinterpreted. That is why we often use those smiley things at the left side of you scream........so we can show emotion. It does help quite a bit. :)

I must add, thought. We are often asked questions that are crucial to others health and well being. It is very important that when we post information to others here on the forum, that we be as accurate at a rate of 100%. If there is any doubt or question about a product or a related health issue, it would be wise not to endanger any one's health. Opinions may be expressed, as long as they are labeled as such.

Regarding your research: I have never heard of Celiac/Sprue before being dx'd and that lead to a lot of personal research on my part and eventually, it lead me here. This forum has been my lifeline for almost a year and a half. I cannot tell you the amount of forum member that have been self taught and have learned such a vast amount of information on this disease and the implications with total doctoral research.

Without the medical degree, many forum member have exceeded the general medical field in research and exploration, than ANY MD that I have ever met.

And, the best thing about this is.........there are available upon request and they don't BILL. :)

Aren't we the lucky ones.

I hope that you will feel better about joining us. It may be a lot of wonderful information lost if you choose otherwise. But we hope you do.

Lisa

PS: I am not good with long post, so you got me on a good night. :)

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Guest nini

Kassianne, I just wanted to say that I too am very opinionated about my take on things and I'm admitedly coming from the "alternative" healthcare side of things. I've been accused of Dr. bashing and of judging people, all of which I don't think are true. I don't have a high opinion of MOST medical Dr.s but there are a few great ones out there, and I would never ever stoop to judge someone else, lest I open myself up to being judged! There's a place for all of us. There have been a few times (not just on this forum) where I've been forced to "eat crow" and apologize for having an opinion that differs from the norm. I will not apologize for who I am at the end of the day, so Kudo's to you for being you!

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Just to clarify:

I am not anti alt-med. I am anti alt-med abuse. Kinda like I am anti med-abuse (like docs who give everyone who's got the sniffles antibiotics to shut them up, UGH I HATE THAT. Or who hand out STRONG antidepressants like they're candy). I take a snotload of supplements for seizure control (add on to meds), mitochondrial support, and because I just don't absorb food real well. Thåt's all altmed land. So is the energy healing I have done and had done.

But there are some things that I want an MD, preferably specialist's, opinion on first. Or a lot of things. But usually that means I did the research and know what SYSTEM, at least, is offline. I don't trust the GPs around here to diagnose a cold.

Kassiane

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Just to clarify:

I am not anti alt-med. I am anti alt-med abuse. Kinda like I am anti med-abuse (like docs who give everyone who's got the sniffles antibiotics to shut them up, UGH I HATE THAT. Or who hand out STRONG antidepressants like they're candy). I take a snotload of supplements for seizure control (add on to meds), mitochondrial support, and because I just don't absorb food real well. Thåt's all altmed land. So is the energy healing I have done and had done.

But there are some things that I want an MD, preferably specialist's, opinion on first. Or a lot of things. But usually that means I did the research and know what SYSTEM, at least, is offline. I don't trust the GPs around here to diagnose a cold.

Kassiane

I am with you on every point. I was one of those folks on heavy meds needlessly, by will call it a mistake. I warn people. hen I resisted they even threatened to put me in an institution against my will, "not taking them would be a danger to my life" Scared me.

I have been resisting medical advice for years. I'm curious if you have any comments on contrast die. I have never allowed it, I know I am allergic to iodine. It just doesn't seem worth the risk.

I've had the same family doctor for 12 years. He was basically a great guy who had know idea what celiac disease was. I am happy to say, it took a long time, but he has come around. I have a team of specialsts working together accepting my input.

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Okay, did a google search. According to google, iodine is mentioned in the OMG thread on pages, 37, 56, 57, 94, 99, 120, 123 and 187.

Happy reading!

Hugs.

Karen

Thank you Karen that was so nice,...I didn't know you could do that with google.

Gail

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Newbie here....after 2+years of knowing i had to do something about my gluten intake, i finally decided it was time. i googled gluten intolerance and after visiting many sites decided to get involved here because of the well thought out forum.

anyway - my mother died with islet cell cancer, which was directly related to her gluten intolerance

she told me about 6 months before she died about her problem with gluten

i was 57 years old

i stopped taking medication prescribed for LBS

i have an appointment on 1 Nov at 0925 to go over family history, etc with my doctor

i have not eaten anything that contains gluten (i hope so) for 3 days now (just rice, eggs, and veggies)

i have talked with my three grown (35, 33, and 20) children and let them know they should see their doctor and get checked

i am investigating various stores, local and on-line, regarding gluten free products

i will become gluten free

i will ask a lot of questions and not accept a reply that takes the path of least resistance

i will not become complacent

i . . . . . . . . . . . . . . . . . . . . .

seems like the older one gets the harder the learning curve becomes, but i relish this one. i am going to regain my health and enjoy the "twilight years"

thanks for listening

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Welcome:

It is NEVER too late to regain your health.

Please take some time to read as much as you are able on this site. I am sure you will find a wealth of infomation here.

I would just like to add that if your intent is to be tested for celiac, continue to eat gluten. Otherwise, your testing will not be accurate. If you choose not to be tested, continue to eat gluten free.

You have a home here :)

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Hi Raymond,

I'm glad you decided to join us! I'm even happier that you are dedicating to the gluten-free lifestyle. It's never too late--I was sick and misdiagnosed for over 20 years.

I was not diagnosed with Celiac until last year, at age 49.

I hope your children get tested as well. Let us know how we can help you--there's a lot more you can eat beside eggs, fruit and veggies!

I'm not clear on if you have actually been tested yourself--if not, you need to keep on eating a regular gluten containing diet until the testing is over--you could skew the results by going gluten-free beforehand. :)

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Just saying Hi and welcome to Raymond!

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Just wanted to say welcome Raymond. This is a place to find answers to any questions you might have. And we never consider a question stupid. Like Lisa said if you are going to be tested then you have to keeping ingesting gluten.

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Hi Raymond! Welcome!

My mom had it all my life. Did you know that the genetic link was not discovered until 1970. Your mom may have been like mine, had know idea it was so prevelant.

Best of luck!

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