A Farewell... Beating My Symptoms

[josh052980]

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.

[kareng]

I'm glad you feel better. I'm also glad that you have come to realize that every twinge is not gluten and someone's personal experience is not necessarily a fact.

[Lisa]

So glad that you're feeling better Josh, but hate to see you leave us!

Many people on this Board have multiple sensitivities and often times they feel that gluten is the source of all their ills.

We do try to maintain a level of reason and practicality, especially in the direction of the newbies.

Hope you'll stick around...you opinion and experience is valuable, too.

[navigator]

Glad that you're feeling better and took the time to say goodbye and give your reasons rather than disappearing. It's now eight and a half months since my diagnosis and I've improved significantly. I think I'm maybe about 80% there and I'm hoping that if I continue to improve the way I have been that it won't be too long before that's 100%.

I found it difficult at the start to distinguish between being glutened and having something else wrong. I've not been well this week - fatigue, hot/cold sweats and joint/muscle ache. My husband questioned if I'd been glutened as fatigue and joint aches are my classic symptons. However, eight months on I felt confident that this was some kind of a virus rather than a glutening. The hot/cold sweats and muscle ache were the give away for me. However, this is the first time when I've felt unwell and i didn't consider glutening. I think it's about getting to know your body better. That takes time and I wouldn't describe it as hypochondria.

I've found this site to be a great help and a source of advice and knowledge. However, I've still got personal responsibilty to do what I can to check out the reliabilty of this advice.

Wishing you well for the future.

[josh052980]

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.

I want my goodbye post here to be more of a sign there is light at the end of the tunnel for the newly diagnosed. I beat my symptoms with no medical treatment at all and no diagnosis. That makes me one of a lucky few, but if I can do it, anyone can!

[kwylee]

I totally understand what you are saying but certainly sorry to see you go. I think the board could benefit from a member and poster who is not Henny Penny, not assuming the sky to be falling with each off moment. Because there are so many people out there, intolerant to gluten, on this board and yet-to-be on this board, who could use a level head in times of crisis.

But if you are incapable or weary of sifting through the ideas presented because you run the risk of taking bad advice, then I agree you should depart in your own best interest. To my way of thinking, I let my own psyche decide what feels right for me, and in the same vein of taking responsibility for what happens to me, I agree with your decision.

All the best to you.

[IrishHeart]

Hi Josh!

This will be long, so please bear with me!

I am so happy to see that you are doing well! I do not think you were a hypochondriac, per se, hon-- I think you were understandably worried when you did not get well IMMEDIATELY.

That is one of the first things I say to people. Do not be alarmed when the magic doesn't happen in a few months. In fact, the best advice I got when I first came on and wondered if every damn food was making me ill was similar to what I now say to newbies: "It just is what it is, until it isn't."

It just takes time. The GI tract is long and needs to heal. And yes, every twinge, tummy rumble and ache is NOT always gluten-related. I think most people do not know enough about the digestive system and how many body systems celiac disease affects (creating various perplexing symptoms) and so, they become frightened by what is happening in their bodies. I know I was and so, I learned all I could about celiac disease so I could knock down the fear about it and understand what had gone so wrong inside me.

About 3 months in, I started questioning posts that made claims that started with "people say" or "I read somewhere" or "you COULD have--- (name a disorder here)--like I do".....

When I asked "Really? I would love to read where you saw that!", I noticed no one came back to show me the proof.

I am a year into healing myself and still have some symptoms, but I realize it's NOT a new disease and it's NOT the gluten monster getting me in my sleep. I am just STILL HEALING. I am one of the slow healers because of my age and late diagnosis and I accept that fact. I am in rehab to regain my muscles and I still have a few symptoms that make me crazy, but I keep my eyes on the prize: FULL REMISSION! The veterans on here are the ones who instilled a sense of calm inside me--reassuring me that in time, I would feel better, too. I have thanked those people repeatedly for their encouragement.

I am so sorry to hear you will no longer be visiting the site because there is so much to be gained from shared experiences AND you are the perfect person to help dispel some of the paranoia that evolves--because You GET IT!!

In fact, your common sense approach to living a gluten-free life is greatly needed.

I, personally, have spent most of my time as a member trying to temper some of the random postings that provoke a sort of "gluten paranoia" from those who claim everything has minute traces of gluten in it (envelope glue and fresh vegetables and fruits, really?) or various theories about "cross reactivity" (I am still waiting for the poster to come back and show me the evidence. She says I was "unfriendly" because I asked for PROOF of these claims. On the contrary, I'm a very friendly person --in fact, I'm a big ole sweetheart -- but I am not one to accept things just because someone says "this is so" on the internet nor do I wish for any new people reading the forum to start worrying as I once did.

I have always tried to be a "myth-buster" and there are MANY of us on here--too numerous to list all those members I know who are trusted posters--- but you probably already know from reading enough posts. We aim to calm the newbies down and get them to see that gluten is not lurking behind every corner.

Do many foods contain gluten derivatives? YES! But as I jokingly say: "Life may be a gluten-filled landmine, but being wise about Cross contamination is your Kevlar vest!" Learn to read labels.

Being newly-Dxed is difficult enough. Having to negotiate the nuances of the gluten-free diet is tricky but getting side-tracked by unreliable information is just an added stressor.

I want you to know that the "voices of reason" on here try very hard to stop that kind of fear-inducing speculation that tends to crop up on the forum. (I guess it happens on any forum, so I am told---- as I do not "forum-hop" myself.) I visited one site ONCE and saw such raging paranoia about perfectly safe gluten-free foods that I have never returned. The last thing I needed as a newbie was to be any more afraid of food than I already was (having been sick for so long).

It's not easy to keep dispelling myths, but as long as I have breath, I will do my part. Living with Celiac Disease does not have to be that difficult. Living with unnecessary fear just makes it harder.

I would like say THANK YOU you for your post for two reasons:

(1) that you say you were helped by the members of the site because that is always good to know!

and

(2) that you reported back to us that negotiating a gluten-free life can be achieved successfully and that COMMON SENSE is key to healing just as much as dietary compliance.

Many blessings to you, Josh! I do hope you'll reconsider sticking around and being another one of the "voices of reason" we need!

Cheers and continued good health,

IH

[josh052980]

Hi Josh!

This will be long, so please bear with me!

I am so happy to see that you are doing well! I do not think you were a hypochondriac, per se, hon-- I think you were understandably worried when you did not get well IMMEDIATELY.

That is one of the first things I say to people. Do not be alarmed when the magic doesn't happen in a few months. In fact, the best advice I got when I first came on and wondered if every damn food was making me ill was similar to what I now say to newbies: "It just is what it is, until it isn't."

It just takes time. The GI tract is long and needs to heal. And yes, every twinge, tummy rumble and ache is NOT always gluten-related. I think most people do not know enough about the digestive system and how many body systems celiac disease affects (creating various perplexing symptoms) and so, they become frightened by what is happening in their bodies. I know I was and so, I learned all I could about celiac disease so I could knock down the fear about it and understand what had gone so wrong inside me.

About 3 months in, I started questioning posts that made claims that started with "people say" or "I read somewhere" or "you COULD have--- (name a disorder here)--like I do".....

When I asked "Really? I would love to read where you saw that!", I noticed no one came back to show me the proof.

I am a year into healing myself and still have some symptoms, but I realize it's NOT a new disease and it's NOT the gluten monster getting me in my sleep. I am just STILL HEALING. I am one of the slow healers because of my age and late diagnosis and I accept that fact. I am in rehab to regain my muscles and I still have a few symptoms that make me crazy, but I keep my eyes on the prize: FULL REMISSION! The veterans on here are the ones who instilled a sense of calm inside me--reassuring me that in time, I would feel better, too. I have thanked those people repeatedly for their encouragement.

I am so sorry to hear you will no longer be visiting the site because there is so much to be gained from shared experiences AND you are the perfect person to help dispel some of the paranoia that evolves--because You GET IT!!

In fact, your common sense approach to living a gluten-free life is greatly needed.

I, personally, have spent most of my time as a member trying to temper some of the random postings that provoke a sort of "gluten paranoia" from those who claim everything has minute traces of gluten in it (envelope glue and fresh vegetables and fruits, really?) or various theories about "cross reactivity" (I am still waiting for the poster to come back and show me the evidence. She says I was "unfriendly" because I asked for PROOF of these claims. On the contrary, I'm a very friendly person --in fact, I'm a big ole sweetheart -- but I am not one to accept things just because someone says "this is so" on the internet nor do I wish for any new people reading the forum to start worrying as I once did.

I have always tried to be a "myth-buster" and there are MANY of us on here--too numerous to list all those members I know who are trusted posters--- but you probably already know from reading enough posts. We aim to calm the newbies down and get them to see that gluten is not lurking behind every corner.

Do many foods contain gluten derivatives? YES! But as I jokingly say: "Life may be a gluten-filled landmine, but being wise about Cross contamination is your Kevlar vest!" Learn to read labels.

Being newly-Dxed is difficult enough. Having to negotiate the nuances of the gluten-free diet if tricky but getting side-tracked by unreliable information is just an added stressor.

I want you to know that the voices of reason on here try very hard to stop that kind of fear-inducing speculation that tends to crop up on the forum. (I guess it happens on any forum, so I am told---- as I do not "forum-hop" myself.) I visited one site ONCE and saw such raging paranoia about perfectly safe gluten-free foods that I have never returned. The last thing I needed as a newbie was to be any more afraid of food than I already was (having been sick for so long).

It's not easy to keep dispelling myths, but as long as I have breath, I will do my part. Living with Celiac Disease does not have to be that difficult. Living with unnecessary fear just makes it harder.

I would like say THANK YOU you for your post for two reasons:

(1) that you say you were helped by the members of the site because that is always good to know!

and

(2) that you reported back to us that negotiating a gluten-free life can be achieved successfully and that COMMON SENSE is key to healing just as much as dietary compliance.

Many blessings to you, Josh! I do hope you'll reconsider sticking around and being one of the "voices of reason" we need!

Cheers and continued good health,

IH

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!

[Lisa]

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!

[kwylee]

So glad to hear that!!!!!! Thanks!

[kareng]

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!

Great!

It always surprises me how many people don't realize all the things they normally eat that are gluten-free. When I first told my parents, my dad got up and spent 15 minutes in the kitchen happily pulling things out to see if it had gluten ( just curious). He found lots of it, including my Mom's beloved hot dogs were gluten-free. Since they love the hot dogs in some sort of potatoe casserole, no gluten!

[josh052980]

I seem to be getting a lot of smiles for a post that I thought was going to get me quite the opposite

[navigator]

Glad you're staying. Another smile for you!

[Skylark]

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!

Ah, now you've got it. I'm glad to hear you are feeling better too.

I agree 100% with you that some people are freaked out, seeing gluten in everything, and their anxiety makes them even sicker. Anxiety is part of this disease, much more so than doctors and researchers realize. "Mind over matter" is trivially easy when your mind is functioning properly; it's impossible when your thinking is clouded by malnutrition, inflammation, and autoimmunity. I'd be willing to bet that your sudden realization that you were making your symptoms worse with negative thinking came about because you recovered your full mental health.

I'm glad you're going to stick around. We can absolutely be of help to other struggling celiacs, plus there is great advice to be had when you run across a new health problem or a situation that you're not sure how to handle. I never would have found the GAPS diet that seems to be helping me without the board.

[Gemini]

Thank God Josh is staying!!!!!!! The last thing we need is to lose the ones with enough common sense to fill a stadium. I am so impressed by your attitude and especially since you are a guy, and guys sometimes really freak out about dietary changes. I agree with your annoyance over those who think the gluten-free diet is something to kill yourself over...it most certainly is not. I love my mother-in-law dearly.....she's a smart and educated woman BUT if she says one more time that my diet is sooooooooooooooo restricted, I'm gonna scream! I eat more variety than most people do and I have been almost 100% successful in duplicating the old gluten filled stuff into gluten-free delight. Mind over matter......

Keep posting, Josh.....you are one smart dude!

[love2travel]

How awesome, Josh, that you are staying but that your attitude towards celiac has changed. You should be highly commended for overcoming fears. It is such a difficult thing but I am happy that you have come to that place. Your posts are thought-provoking and it is great that you chose to continue to post here.

I completely understand what you mean about leaving, though. I used to be on several health forums (i.e. fibromyalgia, herniated disc, chronic pain) but I quit them ALL except for this one. I found that my focus was my health and that was really preventing me from doing other things and seeing my pain for what it was. After that things began to change in a positive way. This happened a few months ago and now although my pain has not become much better I think about it less. I no longer dwell on it. I no longer google medications and symptoms. Now I get up in the morning and am so excited to see what my day has for me. (Not that I did not used to be excited, it was initially, "I wonder how bad my pain will be today".) It is a joy to do different things I did not do before. I used to plan everything around my pain and what COULD happen if I sit too long. Talk about F R E E D O M ! ! !

My pain no longer controls me. I can honestly say I control it. Same with celiac. Celiac is so part of my daily routine it is second nature and does not bother me until I go out. My house is 100% safe. Life is exciting and interesting in a completely different way for me. Sure, there are days I overdo things, but I no longer panic and live in fear of how bad the pain will get. That is totally behind me. Now I just go and do things.

When I participate on this forum it is different. Sure, the focus is celiac, but I am in a different place. You are, too.

So, thank you for sharing and being a source of encouragement.

[mushroom]

Glad to hear how good you're feeling, Josh, and that you will stick around and share it - we need all the help we can get. I think that one of the important things for any newbie to realize is that eating gluten free and healing your gut does not guarantee that you willl have "perfect" digestion - heck, even the people with nothing wrong have occasional digestive problems

[ravenwoodglass]

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!

Glad to hear your sticking around and that you are feeling better.

Once we get used to the diet there is such a world of great food around it is hardly a plain chicken and rice every day existance. Although as a coincidence that is what I am having for dinner tonight. Of course I also made broccoli and a yummy pumpkin pie to go with it.

[IrishHeart]

I'm going to stay, because you're right;

O M G --would you say that again LOUDER so my family can hear it???!!

YAAAAAY! I am so glad I wrote that long message then. whew! A part of me thought: he's not going to read all this blathering (stop talking too much, Irish!) and my pleas will go unheard...

We need you to stay and "pay it forward"

It's really the only way. Learning from others who have been/done that. There are no handbooks. .... yet.

Glad you're sticking around, kiddo!

[kareng]

O M G --would you say that again LOUDER so my family can hear it???!!

YAAAAAY! I am so glad I wrote that long message then. whew! A part of me thought: he's not going to read all this blathering (stop talking too much, Irish!) and my pleas will go unheard...

We need you to stay and "pay it forward"

It's really the only way. Learning from others who have been/done that. There are no handbooks. .... yet.

Glad you're sticking around, kiddo!

Oh no! She's going to be insufferable now!

[IrishHeart]

Oh no! She's going to be insufferable now!

"going to be"??.... :lol: :lol:

[Katrala]

I liked your post - I have many of the same feelings sometimes while browsing the forum.

You mentioned you had a stomach bug. Sometimes a stomach bug is just a stomach bug. I'm always a little frustrated when I see every thing being tied to gluten. Many things certainly could be, but it may not be as well.

Celiac isn't the end of the world by any means.

[IrishHeart]

Celiac isn't the end of the world by any means.

True, true.

In fact, a Celiac DX is sometimes a new beginning and a welcome relief.

For me --and for so many others who had been living in gluten-induced hell for YEARS-- it was an answer to many puzzling and debilitating symptoms.

Gluten free living is a breeze compared to that horror.

PS.. And that piece of cake looks awesome, Katrala!!!

[BrittLoves2Run]

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.

I want my goodbye post here to be more of a sign there is light at the end of the tunnel for the newly diagnosed. I beat my symptoms with no medical treatment at all and no diagnosis. That makes me one of a lucky few, but if I can do it, anyone can!

I would defintley read that blog!

[granolagal]

I would defintley read that blog!

(a.) I would definitely read that blog too

(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.