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My Advice To New Celiacs


eeyor-fan

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eeyor-fan Contributor

I haven't been on the board much lately because I'm trying not to dwell too much on the bad parts of this disease and just focus on the ways I've been blessed in life instead. Anyways, I wish you all a lot of luck with your doctors and remember you are never alone because we are all one big family...Good and Bad. It can be very over whelming sometimes so always have faith and try to focus on the great things in life....I mean it sucks to have any disease but if I was meant to have one I thank God it was this one....I mean I'm alive, I may have other complications from this disease that hurt but....I have use of all my limbs, I can breath, talk, laugh and walk. I can see, I can smell and I can feel. I don't need things other illnesses do like radiation or dialisis. I won't need to spend the rest of my life being cared for, and I know as long as I stay gluten-free I have the potential for a long life. So looking at it that way; I know I can deal with all the complications, aches, pains, being glutened on occasion, etc. Giving up Gluten can really suck after loving it for most of your life but when I get on the pity pot I just remind myself....."I Eat To Live, I Don't Live To Eat" so just because I can't have some of the things I used to love, and that my friends still love, doesn't make me any less of a person or any less special! Food does not make me who I am in this world!

I have noticed some of us are very angry at being sick; and one of the reasons I stopped coming on was I was watching a lot of us attacking each other in our posts. We all need to remember that we are all facing this TOGETHER and by attacking each other we are getting no where in this fight. We must look at it as we are the ones who were chosen to educate this country on our disease, help others in that scary time after diagnoses and pave the way for gluten-free/Celiac being understood in our society. By fighting with each other, nitpicking or blaming we will not move ahead a single inch. I see public education on this topic a war I'm fighting...we are all on the same side in this war and by fighting each other it is like fighting inside your own army. We all have to remember that we are not fighting alone in this, but all on the same side. We cannot have change or understanding in this country about celiac if we don't all work together and if we do not all stand up and take accountability for ourselves. No one is going to do it for us!

That's just my thoughts, and bless you if you agree or disagree!

Hugs

Bridget B)

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Guest nini

I agree 100% with you and that is part of the reason I have backed off on my posting... I haven't been as active here because of the threads that disintigrated because of anger.

We do have to remember we are all in this together, and the purpose of this board is as a SUPPORT GROUP... many of us do not have a local network of support, so this internet community that Scott has created, is the closest thing we have. We get no where with fighting over semantics of issues, and we all have to remember that everyone comes here for support in one way or another, and we should be so thankful to have this community!

thanks Bridget for stating this so eloquently.

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jaten Enthusiast

Best of luck to you in your pursuits, Bridgit. Yes, we're all in this together. The only place my view differs from yours is that I haven't witnessed very many posts where one member attacked another. Occassionally, but it's been extremely rare. I find this a very supportive board and why I keep coming back. This board celebrates successes and surrounds during setbacks. Yes, there are some members who are bitter with their illness, but I haven't walked in their shoes. Hopefully, as time goes on, everyone will learn to celebrate that our illness is not a serious handicap, just an inconvenience. We're all at different places in this journey.

Again, best wishes.

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Canadian Karen Community Regular

Did you have to use the word "nitpicking"???????? <_<:blink:

(my 7 yr old dd Rhiannon came home from school last week with lice and that's all I have been doing all week - nitpicking!!!!!) :P

Agree with you also, by the way. I am one of the ones with "complications", but if I do happen to get down emotionally because of it, I always find that humour helps me find my way back to a positive attitude!

Hugs.

Karen

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eKatherine Rookie

Things happen on internet forums, unfortunately. I was once present on a professional cooking forum that went nuclear over the correct way to dice an onion. Go figure.

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Guest nini
Did you have to use the word "nitpicking"???????? <_<:blink:

I'm sorry, but I'm ROTFLMAO at this... I know it's not funny to you, but have you finally gotten all the "nits" out of your house??? I remember going through that when I was a kid and we were out at my Grandparents house in Texas... talk about a ruined vacation!

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Canadian Karen Community Regular
Things happen on internet forums, unfortunately. I was once present on a professional cooking forum that went nuclear over the correct way to dice an onion. Go figure.

OMG! That's hilarious! These people must have the Food Network on 24/7!!! :lol:

Hugs.

Karen

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TCA Contributor

Thanks for your positive attitude Bridgette. I told someone the other day that I think God allowed my kids this diesease because he knew I needed something that I could have some control over. I can't control my daughters open heart surgeries, but I can control what she eats. It gives me some comfort to know that I can make her healthier. I sooo need that. Not that I'm glad she's got Celiac, but if she has to have something, at least it's something I can help with.

I too stopped posting on threads when they got negative. I now try to stay on subject. I don't know what I would do without everyone here, though. You all have taught me so much.

And like eKatherine said..... If people will fight about onions, people will fight about ANYTHING!!!! :P

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Canadian Karen Community Regular
I'm sorry, but I'm ROTFLMAO at this... I know it's not funny to you, but have you finally gotten all the "nits" out of your house??? I remember going through that when I was a kid and we were out at my Grandparents house in Texas... talk about a ruined vacation!

Spent every day combing through strand by strand for 3 - 4 hours - yesterday there were only two little nits left that I found. Today is her second shampoo, so we should be in the clear after that (knocking vigorously on wood at that statement!!!) LOL! I stayed confined to Rhiannon. Checked everyone daily and they are in the clear, including Terry and myself.

I am going to be terrified to open up our bills coming in, with all the hot water washing and dryer use we have done this past week..... Oh, and vacuumed top to bottom, every day, carpets, mattresses, EVERYTHING!!!!

I was the "NIT" - inator!!!!

Hugs.

Karen

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mouse Enthusiast

I just recently read that you have a 50%-50% chance of your posting being read with the intention you intended. Did that make any sense at all :blink: . Anyway, a survey was done, and the tone we wanted to imply had a chance of being misread 50% of the time.

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Carriefaith Enthusiast

I also haven't been posting as much as I used to, I am just so busy right now trying to find a job and all. I enjoy coming here to help others and to get information. I'm always learning here on the boards.

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ms-sillyak-screwed Enthusiast
....I mean I'm alive, I may have other complications from this disease that hurt but....I have use of all my limbs, I can breath, talk, laugh and walk. I can see, I can smell and I can feel. I don't need things other illnesses do like radiation or dialisis. I won't need to spend the rest of my life being cared for, and I know as long as I stay gluten-free I have the potential for a long life. So looking at it that way; I know I can deal with all the complications, aches, pains, being glutened on occasion, etc. Giving up Gluten can really suck after loving it for most of your life but when I get on the pity pot I just remind myself....."I Eat To Live, I Don't Live To Eat" so just because I can't have some of the things I used to love, and that my friends still love, doesn't make me any less of a person or any less special! Food does not make me who I am in this world!....

Bridget -- GOD BLEASS YOU! I pray you stay healthy! You are very lucky you are one of the Celiac's that haven't developed the many secondary food intolerance/allergies that many of us have. Or you haven't developed them YET! Most of us do, it only time. No one tells us about it. I wish I knew early on...

I was in denial too, thinking I could just go gluten-free & DF and it be a cake-walk through this illness. It was 5 years later I ended up with radiation treatments, thryoid problems and a list too long to post. I wish I was as lucky as you. I am all alone suffer from celiac disease seizures and the seconadary food allergies. I am a happy loving person. It's not so simple. I have gone from 112 lbs down to 98lbs. I EAT to LIVE and it has forced me to LIVE to EAT. Celiac KILLS -- never forget that. I know this first hand for a fact. Open Original Shared Link I have has 2 family members die as a result... I pray to our dear God I don't end up on a feeding tube like Auntie...

Canadian Karen -- Are the "nits" gone yet? Sure way to add drama to a vacation.

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jenvan Collaborator

Hey Bridge! Good to see you on again... I going to send you an e-mail today. Am I still going to see you NYC? Maybe we could eat at Bistango's :)

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eeyor-fan Contributor
Bridget -- GOD BLEASS YOU! I pray you stay healthy! You are very lucky you are one of the Celiac's that haven't developed the many secondary food intolerance/allergies that many of us have. Or you haven't developed them YET! Most of us do, it only time. No one tells us about it. I wish I knew early on...

I was in denial too, thinking I could just go gluten-free & DF and it be a cake-walk through this illness. It was 5 years later I ended up with radiation treatments, thryoid problems and a list too long to post. I wish I was as lucky as you. I am all alone suffer from celiac disease seizures and the seconadary food allergies. I am a happy loving person. It's not so simple. I have gone from 112 lbs down to 98lbs. I EAT to LIVE and it has forced me to LIVE to EAT. Celiac KILLS -- never forget that. I know this first hand for a fact. Open Original Shared Link I have has 2 family members die as a result... I pray to our dear God I don't end up on a feeding tube like Auntie...

Canadian Karen -- Are the "nits" gone yet? Sure way to add drama to a vacation.

I'm not in denial and believe me I'm not symptom free. I also have RA, FM, I had a intestinal disfunction in January and need surgery for it soon....have a horid test to see how far up it goes next Friday because the surgeon thinks my whole GI tract is damaged. Have one of the worst cases of Acid Reflux my GI has ever seen....was rushed into hospital twice in January because of it giving me severe chest pains and esaphagus lesions. I've also found I cannot tolerate things like gluten-free pasta or bread which makes life even harder for me. Whole milk almost kills me. I've got worsoning vision and I'm currently in the process of massive dental work due to the acid problems coming to $8,000. I lost my mom 3 weeks after my 11th birthday to liver cancer which was later traced back to undiagnosed celiac, as well as losing an uncle to stomach cancer. Don't you think I'm scared of that future too? I just choose not to let the fear rule the good things life has. Anyone who knows me, knows how sick I've been with complications since Christmas...anything but a cake walk! My point is EVERYONE has similar horror stories and you can either dwell on how bad it is, or help others and make life all it can be in what ever time any of us have on this earth. My choice is to not to say "WHY ME" but to enjoy the moments I'm not in pain and to have faith that everything happens for a reason in this world and to have faith.

I used to be angry too and even questioned God on what I did to deserve this. Then I made a really good friend. He just turned 26 and was really starting to achieve his dreams. At the height of all his dreams becoming true and at an age where he should have his whole life to look forward to...well he has become a reality check for me. Matthew is fighting brain cancer. Rather than giving up, asking why or feeling sorry for himself he is doing anything he can to win this war he is fighting. The odds are really not that great for him to see 27 but he has not shown a moment of giving up or giving in. He hasn't gotten angry and through all the pain of chemo and radiation he has always stayed true that he will beat this..."NO DOUBT, because God is on his side!" He sees his illness as a test God has given him, and rather than just give up he is trying to help others; educating them, keeping a jounal so others can understand what he is going through, and even being there for other cancer sufferers. Sure sometimes I hurt so bad I cry from what I'm going through, but then I look at people like Matthew, or my mom, or people like my cousin Irene with ALS and it makes me see that we all could be a lot worse off and if these people are living life to the fullest...well what gives us the right to waste the time God has given us by dwelling in the bad. Sure I hurt , this illness sucks, and I'm scared of the future but TODAY, and helping others is all I chose to dwell on!

Hugs

Bridget

Hey Bridge! Good to see you on again... I going to send you an e-mail today. Am I still going to see you NYC? Maybe we could eat at Bistango's :)

Of course we will see each other, you were the one who helped me the most after diagnoses and your now one of my cherished friends.

I'll email ya!

Hugs

B

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Guest Pixi
Best of luck to you in your pursuits, Bridgit. Yes, we're all in this together. The only place my view differs from yours is that I haven't witnessed very many posts where one member attacked another. Occassionally, but it's been extremely rare. I find this a very supportive board and why I keep coming back. This board celebrates successes and surrounds during setbacks. Yes, there are some members who are bitter with their illness, but I haven't walked in their shoes. Hopefully, as time goes on, everyone will learn to celebrate that our illness is not a serious handicap, just an inconvenience. We're all at different places in this journey.

Again, best wishes.

I agree. I have only ever had positive responses and have read positive, supportive messages in thread after thread.

I see your point, Bridget, though. I just feel that I DO live to enjoy life -- which means food.. so, I do live to eat, lol. Food is very important to my daily routine.. whether that is good or bad is a personal opinion. Nourishment is life. And I feel that we should, in fact, focus on the good with the bad. I'm quite a Pollyana, but I don't ignore the negative or dangerous things that are part of life.. part of Celiac.. etc..

Discussions here will include both good and bad points of this dis-ease. There will be rants and upsetting posts to get things out of our system, too. I think it's all important, necessary, and productive -- therapeutic even.

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debmidge Rising Star

Bridget

I read the posts as I see them. If the person says that they are in a living hell with the disease, I do not try to analyze them or make them feel that they are wrong for feeling that way. If you can't vent and be negative about the disease or doctors on this forum, then where can you vent?

If the person says that celiac is not interferring with their lives I again try not to analyze them or make them feel that they are wrong for feelling that way. That person perhaps didn't get too far gone with celiac disease and has less complicated symptoms (or complicate their lives even further).

This disease hits some differently than others, I am sure all will attest to that. I wouldn't want to insult someone by insinuating their venting and depth of severe symptoms are wrong nor would I want to label someone as "Pollyanna". I try to take each person as an individual.

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carochip Newbie
I'm not in denial and believe me I'm not symptom free. I also have RA, FM, I had a intestinal disfunction in January and need surgery for it soon....have a horid test to see how far up it goes next Friday because the surgeon thinks my whole GI tract is damaged. Have one of the worst cases of Acid Reflux my GI has ever seen....was rushed into hospital twice in January because of it giving me severe chest pains and esaphagus lesions. I've also found I cannot tolerate things like gluten-free pasta or bread which makes life even harder for me. Whole milk almost kills me. I've got worsoning vision and I'm currently in the process of massive dental work due to the acid problems coming to $8,000. I lost my mom 3 weeks after my 11th birthday to liver cancer which was later traced back to undiagnosed celiac, as well as losing an uncle to stomach cancer. Don't you think I'm scared of that future too? I just choose not to let the fear rule the good things life has. Anyone who knows me, knows how sick I've been with complications since Christmas...anything but a cake walk! My point is EVERYONE has similar horror stories and you can either dwell on how bad it is, or help others and make life all it can be in what ever time any of us have on this earth. My choice is to not to say "WHY ME" but to enjoy the moments I'm not in pain and to have faith that everything happens for a reason in this world and to have faith.

I used to be angry too and even questioned God on what I did to deserve this. Then I made a really good friend. He just turned 26 and was really starting to achieve his dreams. At the height of all his dreams becoming true and at an age where he should have his whole life to look forward to...well he has become a reality check for me. Matthew is fighting brain cancer. Rather than giving up, asking why or feeling sorry for himself he is doing anything he can to win this war he is fighting. The odds are really not that great for him to see 27 but he has not shown a moment of giving up or giving in. He hasn't gotten angry and through all the pain of chemo and radiation he has always stayed true that he will beat this..."NO DOUBT, because God is on his side!" He sees his illness as a test God has given him, and rather than just give up he is trying to help others; educating them, keeping a jounal so others can understand what he is going through, and even being there for other cancer sufferers. Sure sometimes I hurt so bad I cry from what I'm going through, but then I look at people like Matthew, or my mom, or people like my cousin Irene with ALS and it makes me see that we all could be a lot worse off and if these people are living life to the fullest...well what gives us the right to waste the time God has given us by dwelling in the bad. Sure I hurt , this illness sucks, and I'm scared of the future but TODAY, and helping others is all I chose to dwell on!

Hugs

Bridget

Of course we will see each other, you were the one who helped me the most after diagnoses and your now one of my cherished friends.

I'll email ya!

Hugs

B

hEY i AM NEW TO THIS i JUST FOUND OUT THAT i HAVE celiac disease. MY GRANDMOTHR DIED OF LIVER COMPLICATIONS. SHE HAD TERRIBLE MEDICAL HELP. i AM BEGINNING TO WONDER IF MAYBE SHE HAD celiac disease ALSO THAT WAS UNTRACED. DOES celiac disease AFFECT THE LIVER? HOW CAN I GET MY MOM TESTED FOR IT THEN IF MAYBE HER MOTHER HAD IT? THANK YOU GUYS FOR YOUR QUICK RESPONSES I REALLY APPRECIATE HAVING THIS MESSAGE BOARD. AND MAYBE SOMETIMES PEOPLE NEED TO LET THEIR FRUSTRTAIONS OUT BECAUSE THEY DON'T KNOW WHERE ELSE TO GO! I AGREE WITH BRIDGETTE THOUGH, WE DO NEED TO LOOK AT THE POSITIVES. EVEN IF SOME OF OUR CASES MAY BE WORSE THAN OTHERS.

LOVE YA GUYS!

CAROLINE

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eeyor-fan Contributor
Bridget

I read the posts as I see them. If the person says that they are in a living hell with the disease, I do not try to analyze them or make them feel that they are wrong for feeling that way. If you can't vent and be negative about the disease or doctors on this forum, then where can you vent?

If the person says that celiac is not interferring with their lives I again try not to analyze them or make them feel that they are wrong for feelling that way. That person perhaps didn't get too far gone with celiac disease and has less complicated symptoms (or complicate their lives even further).

This disease hits some differently than others, I am sure all will attest to that. I wouldn't want to insult someone by insinuating their venting and depth of severe symptoms are wrong nor would I want to label someone as "Pollyanna". I try to take each person as an individual.

THIS IS WHAT I"M TALKING ABOUT!!!! I was not commenting on people venting, being in a living hell, or being angry at the disease. I was talking about when people attack each other on these posts! I'm not trying to analyze- just point out that we are all fighting the same battle. I GIVE UP! IT WILL NEVER CHANGE!

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eeyor-fan Contributor
THIS IS WHAT I"M TALKING ABOUT!!!! I was not commenting on people venting, being in a living hell, or being angry at the disease. I was talking about when people attack each other on these posts! I'm not trying to analyze- just point out that we are all fighting the same battle. I GIVE UP! IT WILL NEVER CHANGE!

YOU KNOW WHAT.... NO!!!!! YOU WANT TO BE NEGATIVE, YOU WANT TO TWIST EVERYTHING I SAY>>>>FINE! YOU WIN. ALL I'VE EVER DONE WAS TRY TO HELP PEOPLE AND I"M SICK OF EVERYTHING ALWAYS BEING TWISTED! YOU GUYS WANT TO TEAR EACH OTHER APART---CHEERS! MY FIGHT IS TO EDUCATE OTHERS SO CELIAC BECOMES MAIN STREAM AND UNDERSTOOD LIKE IT IS IN ENGLAND! I QUIT! LIFE IS WAY TOO SHORT FOR NEGATIVITY, PEOPLE TWISTING THINGS YOU SAY, OR MAKING EXCUSES WHY IT'S OK FOR SOME HERE TO ATTACK OTHERS----I WAS ANGRY TOO IN THE BEGINNING BUT THERE IS A TIME TO MOVE ON AND ACCEPT IT: WE ALL ARE FIGHTING THE SAME WAR SO GET OFF THE SOAP BOX ON WHY IT IS OK TO STAY ON THE PITY POT! IT'S OK TO ATTACK PEOPLE , HUH! It's ok to twist things, huh? WELL THERE YA GO! I QUIT! IF YA BOTHERED TO READ MY PAST POSTS BEFORE JUDGING YOU"D KNOW HOW HARD I WORKED CONTACTING COMPANIES AND SHARING INFO, TRYING TO HELP OTHERS< AND HOW SICK I"VE BEEN MYSELF. CALL ME A POLLYANNA BUT AT LEAST I"M TRYING TO MAKE THE MOST OF WHAT EVER ROAD GOD GAVE ME! GOODBYE!

YOU KNOW WHAT.... NO!!!!! YOU WANT TO BE NEGATIVE, YOU WANT TO TWIST EVERYTHING I SAY>>>>FINE! YOU WIN. ALL I'VE EVER DONE WAS TRY TO HELP PEOPLE AND I"M SICK OF EVERYTHING ALWAYS BEING TWISTED! YOU GUYS WANT TO TEAR EACH OTHER APART---CHEERS! MY FIGHT IS TO EDUCATE OTHERS SO CELIAC BECOMES MAIN STREAM AND UNDERSTOOD LIKE IT IS IN ENGLAND! I QUIT! LIFE IS WAY TOO SHORT FOR NEGATIVITY, PEOPLE TWISTING THINGS YOU SAY, OR MAKING EXCUSES WHY IT'S OK FOR SOME HERE TO ATTACK OTHERS----I WAS ANGRY TOO IN THE BEGINNING BUT THERE IS A TIME TO MOVE ON AND ACCEPT IT: WE ALL ARE FIGHTING THE SAME WAR SO GET OFF THE SOAP BOX ON WHY IT IS OK TO STAY ON THE PITY POT! IT'S OK TO ATTACK PEOPLE , HUH! It's ok to twist things, huh? WELL THERE YA GO! I QUIT! IF YA BOTHERED TO READ MY PAST POSTS BEFORE JUDGING YOU"D KNOW HOW HARD I WORKED CONTACTING COMPANIES AND SHARING INFO, TRYING TO HELP OTHERS< AND HOW SICK I"VE BEEN MYSELF. CALL ME A POLLYANNA BUT AT LEAST I"M TRYING TO MAKE THE MOST OF WHAT EVER ROAD GOD GAVE ME! GOODBYE!

I'm sorry for this ranting....I'm just tired of hearing how, because I'm trying to look on the bright side that I can't possably have had any complications. That I must have a "cake walk" with this disease. How I WILL get sick sooner or later! I'm judged and things are twisted before most of you who don't know me, even try to understand the things I've been through. I was just trying to show people that if you constantly dwell on the bad-life will be nothing but bad. God Bless!

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jaten Enthusiast

Hey Bridget, I don't want to stick my nose in where it doesn't belong....but sometimes I do *laughing at self*

When I read debmidge's post, I didn't see it as an attack on you. Really. I read it as someone saying, I read and hear your perspective. Here's mine.

Other's have said it before. Because we depend on text and an occasional emoticon, it's hard to read what someone's "really" saying sometimes. So I try to just depend on the text. I'm sure you do to, and we interpreted even that differently.

I don't know....sometimes I do see what you were talking about in your earlier post. But I think more often it's a case of mistaken intent. Like if someone has a differing view from someone else, is it an attack? or just a differing view?

I look at it as a differing view unless someone resorts to name-calling or other putdowns.

Just my 2 cents.

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eeyor-fan Contributor
Hey Bridget, I don't want to stick my nose in where it doesn't belong....but sometimes I do *laughing at self*

When I read debmidge's post, I didn't see it as an attack on you. Really. I read it as someone saying, I read and hear your perspective. Here's mine.

Other's have said it before. Because we depend on text and an occasional emoticon, it's hard to read what someone's "really" saying sometimes. So I try to just depend on the text. I'm sure you do to, and we interpreted even that differently.

I don't know....sometimes I do see what you were talking about in your earlier post. But I think more often it's a case of mistaken intent. Like if someone has a differing view from someone else, is it an attack? or just a differing view?

I look at it as a differing view unless someone resorts to name-calling or other putdowns.

Just my 2 cents.

Thanks for the advice. Those who know me know I’ll always come back. Actually the post I blew up about wasn't even the one that bothered me, it was the one posted a couple days before from Ms Sillyak Screwed that said “I was in denial too, thinking I could just go gluten-free & DF and it be a cake-walk through this illness. It was 5 years later I ended up with radiation treatments, thryoid problems and a list too long to post. I wish I was as lucky as you” that was the one that really upset me, honestly!

That weighed on me so heavy for a couple days before it just burst to the surface. I couldn't even sleep at night because I couldn't even grasp that someone would say something like that! There are a lot of good on the forum but something like that just shocked me so deeply! I'm sorry if I acted badly. God Bless You All For This Is Every Single One Of Our Fights. Anyone who knows me, knows it has not been a cake walk, and if she wishes she were me, well then on friday when I'm at the hospital with instruments up my rectum to measure how bad my prolapse is-well I'll happily let her take my place...LOL

As far as people attacking- I, like some others here, has seen it on occasion and that is what I was talking about (not harmless venting). I remember a couple times in November when Scott had to get involved because there were a few bad times with different people. Plus I remember once earlier this year one poster who had never posted or talked to another one before but left a message to the point that they hated the other person and would never read their posts again. That is the type of stuff I’m talking about.

Hugs

Bridge

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JodiC Apprentice

Everyone has to go through the 5 stages of grief. I think dealing with anything in life has to be done in stages. Some are new to this and some are not. The people here give advice and we have to make the choice to accept or deny it. I haven't seen any negative postings, but I'm new to the boards. Unfortunately, not new to the disease.

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debmidge Rising Star

Briget

sorry you interpreted my post as twisting .... not my intention. I was just stating how I try to let people be who/what they are without passing judgment (as that has been done to me on these boards in the past).

There's a place for everyone's opinion and no one's opinion is right or wrong but there's a contingent that will say "black" when you say "white."

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eeyor-fan Contributor
Briget

sorry you interpreted my post as twisting .... not my intention. I was just stating how I try to let people be who/what they are without passing judgment (as that has been done to me on these boards in the past).

There's a place for everyone's opinion and no one's opinion is right or wrong but there's a contingent that will say "black" when you say "white."

As I said, you were not even the one I was upset at, you just happened to be the one it came out at and again I'm sorry. I was just really hurt by what that other person posted and it's not the fist time she posted like that towards another celiac. I take responsability for lashing out and I'm so sorry. I was just so shocked, angry and hurt that someone would judge that way without even trying to understand the things I've been through...again I'm sorry! We all just have to remember that there are times that we are all angry about this disease but we are all in this together and by assuming others have it worse or better than us- assuming makes an ass out of U and Me! We are all fighting Celiac- maybe your path isn't the same as mine but that doesn't mean it is better or worse- just different! No matter how angry we get at this celiac we shouldn't judge each other because we are all each other has in this fight !

Hugs

Bridget

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Mabc Apprentice

Dearest Bridget,

Hi. I don't know you and I'm so new to this message board that I reeeeaally feel like I'm sticking my nose in, but I just wanted to add something from my experience on other types of boards.

I have been on other kinds of boards that had the attacking like you describe. I haven't been here enough to know how it goes on this board, but you seem so nice and I wanted to share something I've learned with you. It seems that some people kind of want to play "devil's advocate" and maybe they even get a kick out of pushing other people's buttons. I learned that when I wanted to say something that was important to me, to not even respond to people who seemed to me to have an attacking tone. That way, if they meant to "start a fight" you aren't drawn in, but if they didn't mean it and their tone was misunderstood, then there still isn't a problem. I found that if I ignored those posts that seemed to be attacking, either the person dropped it and went on to more fun people to fight with, or they kept writing and I found out they didn't mean it the way it sounded, or they get mad you won't *play* and they show their true colors and they get really mean. Either way you aren't manipulated and dragged into the game if you ignore the ones who seem to be negatively attacking even the simplest of things you say, like your original post which seemed so clear to me and honest and forthright and nonoffensive. You seem really sweet and caring and I know that I, for one, really need help with my disease from someone like you. So please don't give up.

Melodi

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    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
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      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
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