Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Archived

This topic is now archived and is closed to further replies.

josh052980

A Farewell... Beating My Symptoms

Recommended Posts

(a.) I would definitely read that blog too :D

(b.) I can't tell you how much, as a newbie, this thread has been so inspiring and uplifting. Sound minds and positivity. I just can't thank you all enough. I'm still in the "overwhelmed" stage so reading this post brought be back.

Sound minds? Us?! :lol:

Hang in there, hon!! We were ALL newbies once! :)

Any help you need, we are here!

Share this post


Link to post
Share on other sites

Well, I don't even know you, being a "newbie" myself, and I'm glad your here. Level-headedness is exactly what I need right now. I don't really feel too terribly freaked out about the diet since I've looked around the gluten-free mall and there are tons of stuff on there. One thing I do worry about is that I have been so afraid to eat that I often restrict myself. Now that I won't be sick all the time AND there are lots of yummy things I can make/buy to eat, I'm afraid I will, and gain a bunch of weight. So I have to keep myself from getting too excited and trying everything! It's a good problem to have!!

Glad you're here, I hope you stick around! :D

Share this post


Link to post
Share on other sites

Josh, I am 9 months into the gluten-free diet and like you it is amazing the difference that it has made in my life too. I ahve not been on here as much and then at times I realize there are epople out there suffering like you and I were in the beginning. Each one of us has issues/symptoms slightly differnt from the next person but what we can offer is our own expreiences to help someone else. So I do hope you check in and share your expereinces as you can very well help another person in need of your advise.

Share this post


Link to post
Share on other sites

I have to remind myself all the time that it is normal to sometimes have gas, diarrhea, bloating, fatigue, stomach pain, brain fog, etc.. My non-celiac partner experiences several of these symptoms a week. Because these symptoms brought me so much difficulty and impacted my life so profoundly before my diagnosis I spent a long time being hyper aware of my bodily functions and feelings and attributing anything that seemed off to having accidentally consumed gluten. The funny thing is that the few times where I've realized after the fact that I really did consume something that for sure had gluten in it, I didn't notice any particular reaction. Yet when I'm laid up with the stomach flu, I'm convinced I've been "glutened" even though I've been cooking only with known gluten free foods in my gluten free kitchen. I know that many people do suffer from severe reactions to accidental gluten consumption, but for myself it has been very enlightening to realize that most of what I have attributed to glutening, is just normal (and probably a reflection of tending to overeat at times, not eating the most healthy diet, eating fast, stress, getting to bed late, etc.).

Share this post


Link to post
Share on other sites

I understand that some members here have multiple intolerances. And they get very legitimately ill, when exposed.

I don't understand when people have "reactions" (not sure what a reaction is) to whole foods?

Additionally, I assume that "a reaction" may not necessarily be a GLUTEN reaction. That's pretty important to clarify on this Board. And that's an important issue a member should clarify. It's not always done, and for some members it's never done.

Beginning a gluten free diet is daunting enough. One step at a time is a step forward to good health.

I react to documented gluten free chocolate and within a few minutes, I get reflux. That's my reaction.

<sigh and shrugging shoulders> But then, it would be very boring if we were all the same. :P

Share this post


Link to post
Share on other sites

We have a whole school district taking Monday off for a " mass glutening"! On Friday, kids and staff were vomiting and leaving the schools in droves. They disinfected today and will again on Monday ( if enough custodial staff is well). :lol:

But really....gas is normal! It's normal to have an upset stomach after eating spicy stuff ( for some). It's normal for your stomach to hurt if you drink a gallon of lemonade with no food.

Bananas make me burp. Gluten makes me burp. Despite what I saw claimed once, bananas don't have gluten.

Disclaimer for newbies: the school has a nasty stomach virus going around. Bananas do not contain gluten

Share this post


Link to post
Share on other sites

We have a whole school district taking Monday off for a " mass glutening"! On Friday, kids and staff were vomiting and leaving the schools in droves. They disinfected today and will again on Monday ( if enough custodial staff is well). :lol:

But really....gas is normal! It's normal to have an upset stomach after eating spicy stuff ( for some). It's normal for your stomach to hurt if you drink a gallon of lemonade with no food.

Bananas make me burp. Gluten makes me burp. Despite what I saw claimed once, bananas don't have gluten.

Disclaimer for newbies: the school has a nasty stomach virus going around. Bananas do not contain gluten

Got it, robots have gluten but bananas are safe. Just need a reference now...probably one in Time Bandits or Hitchhikers Gide to the Galaxy somewhere.

How could anyone get mis-information on a great site like this? :D

Good to hear you are sticking around Josh. The perspective of newer members is sometimes different and can be very helpful to keep us on track. Now I am off to search Star Wars for the robot gluten connection thing...Gotta be there somewhere...

Share this post


Link to post
Share on other sites

Got it, robots have gluten but bananas are safe. Just need a reference now...probably one in Time Bandits or Hitchhikers Gide to the Galaxy somewhere.

How could anyone get mis-information on a great site like this? :D

Good to hear you are sticking around Josh. The perspective of newer members is sometimes different and can be very helpful to keep us on track. Now I am off to search Star Wars for the robot gluten connection thing...Gotta be there somewhere...

The robots are gluten-free but subject to cc from cookies eaten while working on them. However, the sticky properties of Wonderbread might be helpful at times. A robot held together by zip ties, duct tape, chewing gum and gluteny bread!

Share this post


Link to post
Share on other sites

(a.) I would definitely read that blog too :D

(b.) I can't tell you how much, as a newbie, this thread has been so inspiring and uplifting. Sound minds and positivity. I just can't thank you all enough. I'm still in the "overwhelmed" stage so reading this post brought be back.

This is why I'm not going to leave this board. If even one person gets something out of me getting sick of the people who are scared of their own shadows, I'm doing something right. The newbie's here don't need fear mongering and negativity, they need positivity and to know they aren't alone.

As for that blog, I've already got a Wordpress.com spot reserved for it, it's just a matter of sending some emails to some manufacturers/restaurant chains to get things rolling a little bit. I'll have more details down the line if you guys want to read it and keep up. If you have any suggestions for content, or things you'd like to know, drop me a private message, I'd love to hear from you all!

Share this post


Link to post
Share on other sites

After almost a year gluten free now, I've been through what most of us here have, and some things special to me, as we all personalize this a little bit. Over the course of that time, the one thing that really hit me, and got me to view myself, and this disease in a new way was something my brother said to me in passing. After weeks of having symptoms that were gluten like, despite having been strictly gluten free for months prior, I was in the kitchen and complaining about how I felt, and rattling off lists of what could be wrong, when he looked at me and said, "The only thing wrong with you is that you've become a hypochondriac."

That did it for me, and I realized something then and there; he was right.

Like so many of us, every time I got even the slightest twinge of something being wrong, I'd get on here, or any other site out there and find things that would match the symptoms I was having and make myself think that I was in fact getting worse, when the opposite was true, I was only getting better. The proof of that is in the last 2 weeks for me, I've felt 100% myself, with the exception of a stomach flu I caught last week.

Celiac really is mind over matter. We've all had those nights where you sit up awake, feeling miserable and wondering; was it something I ate? This is where things finally snapped for me. I'd gotten myself thinking that cashews I was eating were making me sick, and I went searching for others who were like minded. I found an old thread which talked about someone having read or heard somewhere that Planter's cashews were coated with flour before being sold. There was no citation for this information, they just randomly threw it out there. And people were eating it up, save for one person, who was the voice of reason and called for the source of the information. The person who originally posted, didn't have this information, stating they'd seen it on a television show.

This is the kind of madness that is, as of today, driving me away from this board. Granted, for every one of the people like above, there's 10 on here who genuinely have done the research and can back it up, but it only takes a few bad apples to ruin the barrel. For a site like this to do what it needs, each and every poster on here needs to be able to back up their claims, either with an email, or phone call to a manufacturer, information given by an MD, or other credible source. There can't be any more of what I described a moment ago, or we'll all become hypochondriac's, afraid of our own shadows.

So how did I beat my symptoms finally? Positive thinking, getting plenty of sleep (I bought a new bed and everything), and knowing that even if I get sick once from gluten, the world hasn't ended, it's just a process that I'm going to have to deal with being Celiac. After all, I'd adjusted my diet once, doing it again to get rid of an offending food isn't a big deal.

And so, I wish you all the best, I've hit a point where I'm finally better, and even if I wasn't, the chances of finding a post which is without citation is too high, so I will not be returning.

The best to you all, and thank you to each one of you who has given me advice over this past year, you've helped me in ways I cannot express. May each of you find this feeling, and I hope you all do.

I also belong to the Celiac Support Group over at Dailystrength.org. I wrote a post there, which was verbatim what I did here, and got one response I'd like to share with you all, as it hurt very deeply to think that someone out there, would think I was making this up, or saying that I'm the only one who knows what i'm talking about. If this person happens to be on here too, I hope you read this, as this is the worst thing anyone could say to another Celiac... I've copied her response for you below. Feel free to leave your thoughts. My response to her follows as well

+++++++++++++++++++++++++++++++++++

Response to my post from a user at www.DailyStrength.org:

"Perhaps it is better if you leave so no other Celiacs are exposed to this sort of poor judgement.

Gluten causes damage it is not mind over matter.

There are people who are so sensitive that wait staff touching bread and then handling gluten-free bread makes us sick. It is the worst case but it is real.

A whole year gluten free and you think that you are an expert to tell us "Celiac really is mind over matter." That just proves that you have no idea what you are talking about.

I think you are in denial. And trying to get others to jump on board. Some people can tolerate a tiny amount. That does not mean all of us can."

My Response to her:

First off, way to take my words out of context. I have the condition so why in the @#$% would I say what you're implying I said? I am all too aware that gluten causes damage to those of us who are intolerant/Celiac because I'VE BEEN THAT WAY ALL MY LIFE. This isn't just some condition I dreamed up for myself, you know? THERE ARE PLENTY OF PEOPLE WHO ARE LIKE ME, WHO ARE UNDIAGNOSED, AND STAY GLUTEN FREE ANYWAYS, ELIZABETH HASSELBECK IS ONE WHO COMES TO MIND IMMEDIATELY.

Second, I'm in no way, shape or form saying that a year gluten free makes me an expert. Apparently the only expert is YOU. I've been in a situation, many in fact, where someone handling a bit of food that had gluten in it, got mixed in with mine and I got sick. It's called cross contamination and it happens to us all.

Third, I'm well aware the gluten causes damage, THAT'S WHAT CELIAC IS. And yes, it is mind over matter. If I live in fear of my shadow, as you, the expert, seem to, I will NEVER get better. Whereas if I realize that gluten free is a process which is going to have its ups and downs, and know that I'm not going to just magically get better, it's helping me be a realist. That is mind over matter. Too many people go gluten free and expect to be better the very next day. This simply is not the case. But since they believe it, they get discouraged, which in many cases, drags their illness out, WHICH IS MIND OVER MATTER.

Lastly, and most importantly, HOW DARE YOU suggest that I am in denial with this? Yes, I'm a year gluten free and just now starting to feel myself again AFTER SUFFERING WITH THIS, NOT KNOWING WHAT IT WAS FOR MOST OF MY LIFE. I'm 31 years old, that's a long time to feel like crap and not know why. And now, after year of busting my butt to stay gluten free and make an honest attempt to feel better, YOU, in your infinite wisdom, and lack of comprehension to what I was saying, went off half cocked and spit in the face at being ill for 20+ years.

You're exactly the kind of fear monger who makes these newly diagnosed people think there is no hope, and there isn't a way to get through this. Maybe you've had a hard time with this yourself, harder than most I would guess as it seems like you're one of the super sensitive Celiacs, like a good friend of mine is. I'm sorry for the hard times you've had to endure, and the way you've undoubtedly felt. I may not be a super sensitive, but I do have reactions obviously to gluten, otherwise I wouldn't be here. After being sick this long, anyone would be as thrilled as I am to feel this well, even for a day. That said, your suffering and your experiences give you absolutely no right to talk down at my personal experience, and the experience of those like me. Some people need to know that there's a light at the end of the tunnel, and that gluten free is common sense, as well as knowing your limitations. If there's something wrong with me pointing that out, then I'll continue to be wrong in that way, if it helps even one person feel better about themselves and the situation that they're in, it's worth dealing with people like you.

Share this post


Link to post
Share on other sites

You used this sentence in your post: "Celiac is mind over matter."

Now, I KNOW you meant: "(living successfully with) celiac is mind over matter" because you explained your ability to overcome the fear in your mind.

Reading your whole post makes it self-explanatory.

So those of us who responded to your post here took it as meaning the way you intended.

Obviously, she saw that one sentence, focused on it and ran with it.

She did not read very carefully (or who knows? maybe she is gluten-headed and unable to comprehend it fully--it happened to me, so it's possible) or there is some other explanation for her misunderstanding of your post's intention?

Highly defensive response and inappropriate to what you had said. It happens when trying to interpret the written word and being unable to clarify statements and intentions.

Blow it off, kiddo. ;) Don't let it bother you.

Share this post


Link to post
Share on other sites

You used this sentence in your post: "Celiac is mind over matter."

Now, I KNOW you meant: "(living successfully with) celiac is mind over matter" because you explained your ability to overcome the fear in your mind.

Reading your whole post makes it self-explanatory.

So those of us who responded to your post here took it as meaning the way you intended.

Obviously, she saw that one sentence, focused on it and ran with it.

She did not read very carefully (or she is gluten-headed and unable to comprehend fully) or there is some other explanation for her misunderstanding of your post's intention.

Highly defensive response and inappropriate to what you had said. I've seen it before.

Blow it off, kiddo. ;) Don't let it bother you.

You're right, I need to just blow it off, and she probably is just all gluten headed and acting weird from it. But at the same time, I took it personally, like a spit in the face for everything I, and everyone like us all, has dealt with.

Share this post


Link to post
Share on other sites

You're right, I need to just blow it off, and she probably is just all gluten headed and acting weird from it. But at the same time, I took it personally, like a spit in the face for everything I, and everyone like us all, has dealt with.

Personally, I liked your response. It clarifies your position . . . and hers . . . for anyone that will come along and read that thread. However, at this point, if you get another response/attack, I would probably ignore it. I doubt there would be anything to gain from engaging her further.

My two cents on THIS thread . . . Josh, glad to hear you are staying. It's always great when people stay to share their experiences and to advise and encourage the newbies.

I think that often once people get a handle on the diet and feel better, they don't need us (the board) anymore. They're the ones that don't have additional intolerances, have no problems eating off of shared lines, have family members that jumped right on board with them to learn about gluten-free (or live far enough away from them that it doesn't matter). They can eat (somewhat?) safely at restaraunts. They take adequate precautions with cc and that is enough for them. Quite frankly, my daughter is in this category. At this point, I don't need this forum to help her navigate the gluten-free diet.

Actually (IMHO) I think most GI's/Celiacs fit in that catagory. Then when there is a thread . . . "Random Product" Glutened Me . . . the majority of the people safely eating that product are no longer here to chime in. At times, these threads can become a bandwagon of naysayers for a product that would be fine for most Celiacs.

Glad you're staying . . . please chime in. :D

Share this post


Link to post
Share on other sites

I think, Darn210, that you made a very valid point when you said-

'I think that often once people get a handle on the diet and feel better, they don't need us (the board) anymore. They're the ones that don't have additional intolerances, have no problems eating off of shared lines, have family members that jumped right on board with them to learn about gluten-free (or live far enough away from them that it doesn't matter). They can eat (somewhat?) safely at restaraunts. They take adequate precautions with cc and that is enough for them. Quite frankly, my daughter is in this category. At this point, I don't need this forum to help her navigate the gluten-free diet. '

Although I was 53 before I was diagnosed, almost 9 months strictly gluten free and there is a huge difference to my health and life. Yes, if I'd been diagnosed sooner my life would have been so much easier. Yes, in the beginning I was so overwhelmed that I did live in fear. However, 9 months on, with a husband who immediately went gluten free at home, with a favourite local restaurant who have ensured that my diagnosis has not prevented me having wonderful meals out with no fear of contamination, and getting my head round it - I am at ease with being coeliac and, although I'm strict about diet, cosmetics, cc etc, it doesn't prevent me getting on with my life. I take great care but I don't live in fear and I don't define myself by my disease.

I know that I'm lucky not to have the additional intolerances that many on this site do and I'm not in any way making light of their additional suffering. I do think however that it would be helpful to newbies that those of us who are lucky to be in this position, stay on and continue posting.

Well done, Josh, for instigating this discussion with your 'farewell post'. Glad you stayed with us.

Share this post


Link to post
Share on other sites

Although I was 53 before I was diagnosed, almost 9 months strictly gluten free and there is a huge difference to my health and life. Yes, if I'd been diagnosed sooner my life would have been so much easier. Yes, in the beginning I was so overwhelmed that I did live in fear. However, 9 months on, with a husband who immediately went gluten free at home, with a favourite local restaurant who have ensured that my diagnosis has not prevented me having wonderful meals out with no fear of contamination, and getting my head round it - I am at ease with being coeliac and, although I'm strict about diet, cosmetics, cc etc, it doesn't prevent me getting on with my life. I take great care but I don't live in fear and I don't define myself by my disease.

You sound familiar! :lol: I am in a similar position, 53 at DX, a year gluten-free now, a devoted gluten-free hubs and a gluten-free home-- and a gluten-free cafe for me to eat freely a few times a week and not stress over CC issues. I was understandably anxious and fearful at the beginning, having been seriously ill for so long and in horrible burning joint/bone/muscle pain. I did not even START to feel better until 10 months in. I had to keep telling myself, it will come, stay the course. Over and over again. I have major health issues as a result of celiac but it does not make me afraid to LIVE.

I still have some concerns about a full recovery, but it does not make me FEARFUL. Living in fear is no way to live.

Do I still have "bad days"? Sadly, yes. But I accept that it will take YEARS for me to get to optimal health. Do I have additional food intolerances? Sadly, yes on that one, too. But I believe they will resolve in time. It's not denial; it's life- affirming.

For me, living with celiac is a lot of "mind over matter" thinking because if I do not believe I will get well and be more functional, then I might as well give up, lie down and die right now. I did not do it the years I was slowly dying and I will not do it now. And I certainly will not let people who are alarmist and ill-informed sway me from my purpose.

Maybe I do not "need" the Board to negotiate the gluten-free diet anymore--but I THRIVE by helping newbies as I was helped by so many veterans on here and by enjoying the many awesome members who offer so much more than just dietary advice. They offer hope, laughter, encouragement and a comraderie I simply cannot get from those who do not have celiac disease.

:)

Share this post


Link to post
Share on other sites

I agree with "She didn't really read it" crowd. I interpret your post as saying something more along the lines of "celiac disease controls my diet, not my life". Maybe the person who responded to you still needs to feel like her life is under the control of something/someone other than herself,

Share this post


Link to post
Share on other sites

I'm going to keep my account active, there's a lot of good info here, but now that I have my feet back under me and have the upper hand on my symptoms, it's time for me to fly on my own. I'll keep posting information as I find it, from manufacturers and such. I've even toyed with the idea of creating a blog where I post nothing but responses to gluten inquiries to manufacturers, restaurant chains and such, but not sure if anyone would read it or find it useful.

Heck yeah, people would find that useful!

Share this post


Link to post
Share on other sites

I'm going to stay, because you're right; someone who's newly diagnosed, doesn't need to live in fear that if they eat an apple, there's going to be gluten in it for some reason. If I can help even one person feel empowered, or realize that if they lick an envelope, they'll feel fine afterward, then I've contributed something positive.

I'm just at this point where I'm sick of hearing "Oh, gluten free huh? You're going to be living on plain chicken and white rice for the rest of your life." It's preposterous! Gluten free doesn't have to be all doom and gloom, it's about navigating around limitations and finding ways to spice it up, not resigning to an untruth.

As long as I can spread that message, count me in!

I am VERY new to this, but find it interesting that everyone thinks gluten free is so difficult. I have always eaten healthy meats, fruits and veggies, and only ditched all my crackers and sauces today...I love Trader Joes gluten free bread, so I'm cool with this diet. This is the first day that I am going to bed without my stomach rumbling and being very, very noisy...and I can't wait to loose that 'pregnant' looking belly and stop the all day gas production! Looking forward to get help here!

Share this post


Link to post
Share on other sites

When I first read "mind over matter" I took it mean that those with celiac and/or NCGI can't live their lives in fear that there is a gluten-laden conspiracy out there trying to throw crumbs at as us we go about our business.

Personally, I'd rather take normal precautions and accept the fact that there will be slip ups here and there than spend my time worrying about every little bit of cross contamination that could be possible with anything I eat.

The stress that comes with dwelling on such things just isn't worth it to me. I do believe the constant mental anxiety of all that worrying can be more harmful than accidently getting glutened.

Share this post


Link to post
Share on other sites

Personally, I'd rather take normal precautions and accept the fact that there will be slip ups here and there than spend my time worrying about every little bit of cross contamination that could be possible with anything I eat.

The stress that comes with dwelling on such things just isn't worth it to me. I do believe the constant mental anxiety of all that worrying can be more harmful than accidently getting glutened.

Pretty much what my daughter's GI told me when she was diagnosed.

He was an advocate of taking the diet seriously, but don't make it the focus of your life.

Share this post


Link to post
Share on other sites

This poster makes me feel better. I complained for a long time until I started seeing that I actually loved the taste of fresh fruit, veggies, etc and most importantly: they make me feel great! Until I understood that this is a lifestyle change, and that I'm not doomed because I can't eat cake, is when I actually felt lucky that my disease is very easy to cure, if you think about it. Btw I'm writing this while being sick after eating buckwheat, doesn't sit well with me, but hey, I'll be fine in a couple of days. It's not the end of the world.

Share this post


Link to post
Share on other sites

A lot of what has been said on this thread is echoing what I have been feeling lately too.

I am at 10 months gluten free now and just last week I had a light bulb moment. The reality is, I am going to get glutened. It might happen when I am out for a romantic dinner with my husband, it might happen on vacation, it might happen because I didn't wash my hands well enough after packing a gluteny lunch for one of my kiddos... but I am not going to stop doing any of those things out of fear.

I also am slowly becoming okay with not always being able to participate in social events that are completely food based such as cookie swaps, potlucks, dinners at certain restaurants. It's okay, I don't have to do everthing and eat everything that my friends do to be happy. I can actually sit at a table with someone who is eating a croissant and drinking a coffee (my 2 favourite things that I can no longer tolerate) and be okay. I can also take an awesome gluten-free meal with me and enjoy it while I visit.

DH and I have had to let go of our dream of travelling throughout Asia for now unless we wind up being able to do it on a cruise where I can get safe food. The type of travelling we wanted to do in Asia just won't be safe for me. But that's okay, we've decided to travel in Europe instead and have recently started learning Italian.

Life is amazing and not living in fear makes it even better.

Share this post


Link to post
Share on other sites

A lot of what has been said on this thread is echoing what I have been feeling lately too.

I am at 10 months gluten free now and just last week I had a light bulb moment. The reality is, I am going to get glutened. It might happen when I am out for a romantic dinner with my husband, it might happen on vacation, it might happen because I didn't wash my hands well enough after packing a gluteny lunch for one of my kiddos... but I am not going to stop doing any of those things out of fear.

I also am slowly becoming okay with not always being able to participate in social events that are completely food based such as cookie swaps, potlucks, dinners at certain restaurants. It's okay, I don't have to do everthing and eat everything that my friends do to be happy. I can actually sit at a table with someone who is eating a croissant and drinking a coffee (my 2 favourite things that I can no longer tolerate) and be okay. I can also take an awesome gluten-free meal with me and enjoy it while I visit.

DH and I have had to let go of our dream of travelling throughout Asia for now unless we wind up being able to do it on a cruise where I can get safe food. The type of travelling we wanted to do in Asia just won't be safe for me. But that's okay, we've decided to travel in Europe instead and have recently started learning Italian.

Life is amazing and not living in fear makes it even better.

It must be hard to give up your dream of Asian travel (and eating street food) but I am glad that you are planning a trip to Europe! That is awesome. I am unsure whether you have been to Italy or not but it is a great place for those with celiac. Good for you for still traveling. It is so important to do things that we love. :)

Share this post


Link to post
Share on other sites

×
×
  • Create New...