Overwhelmed and unable to accept

[Ennis-TX]

Interesting topic that might give you some food ideas to balance stuff out and supplements, even listed my shake brands I have had good luck with (all are oat free and vegan) https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/  

I mostly just stick to my safe house for most my life and have found wearing gloves outside my house helps a lot with fears. I also take my own meals packed everywhere I go even to other restaurant.

Example today I am running errands and packed up a meal,  I made a vegan chili and rice meal flavored bowl, and side pumpkin seeds and carrots. I made a tomato based salsa with a blend of chili powder, cumin, onion powder, garlic powder, tomato powder, and nutritional yeast (this seasoning taste like frito chili cheese powder I can message you the blend if you want stuff great on everything). Poured this over sauteed bell peppers and miracle rice. Stirred in some shredded jack fruit (meat sub, and topped it with toasted cashews and shredded lettuce.

Life gets depressing has its up and downs, I find myself talking to a friend or my father a lot just complaining about my issues like a counselor session. I find this to work great and allows me to voice my concerns and work stuff out. As of late I get really depressed about heading out and doing stuff, like "Am I worth even going out" without having a outside motivation or ulterior motive I can not seem to motivate myself to even treat my self on bad days. Be nice if I did not live in a small town and have no one else near by who can sympathize or hang out with me to do stuff. Still I am striving to do my best, I notice it is no where near as bad as it was months ago and thinking back to a year ago the depression is much less significant. I think this is a sign I am healing and absorbing nutrients better, I mean my lifestyle has otherwise not change nor has my situation of being broke and hardly able to afford food at the end of every month (gotten a tad worse in this respect).

[GFinDC]

@egs1707

Getting better from celiac damage isn't as simple as taking a bunch of pills (drugs) and following the latest exercise craze, whatever that might be.  To recover from celiac you actually have to expend some personal effort and make some changes to your diet that many people may not even consider under usual circumstances.  Yeah, lots of people have it easier.  Lots of people won't have to make the sacrifices you'll have to make.  Lot's of people aren't you though.  You are part of the 1% of society that is different, that has a life-long condition called celiac disease.

You can't change that, and nobody else can either.  The thing you can do, is learn to live with celiac disease successfully, like many people on this forum have done.  You can learn to eat healthy and treat your body with respect.  You can get better because you accept your limitations and don't let them stop you from living.  You can adapt because you are not unable to learn and grow.  If that wasn't true you wouldn't have got to this point.

It took me 5 years to get reasonably healthy feeling.  It was sure a lot of fun along the way.  But I feel pretty good now and I probably have a lot more food intolerances than you do.  You aren't an expert in living with celiac disease right now, you are a beginner.  Living with it does teach you exactly that, how to live with it.  I know being diagnosed with a life-long condition can be overwhelming and a bit depressing.  But this is the best life-long condition I can think of to be diagnosed with too.  Really we should shoot up rockets and release balloons when we are diagnosed.   Well. maybe not.

I have 1 brother who is slowly going blind from diabetes complications, and another who is half blind from retina problems.  I have a thyroid cyst that makes it hard to swallow so I always carry a bottle of water with me to wash food down.  And other assorted pains and problems that aren't worth mentioning.  Plus we have 20 or more cang dats , now that's a real problem!

Whine all you want, then look in the mirror and decide you are going to  live with this condition like all of us older wimps do.  No, it may not be easy street every day.  But life isn't always about coasting and cruising and having a good time.  Sometimes its about perseverance, struggle, determination, and pluck.

[egs1707]

23 hours ago, Jmg said:

Against my better judgement I'll reply  To be honest I wish I could speak to you in person because there's a limit to how effective communication over a forum can be and from what I've read you are almost exactly where I was not so long ago.

Let me say that I think you're clearly extremely bright and have amassed knowledge on this. I also think however that your thinking at present is clouded by your mental state and unless and until you can acknowledge that you'll struggle to move forward, IRRESPECTIVE of your current physical condition. 

At present your intellect is pointed in one direction, you take a post like mine above and focus and fixate on the beginning, the negative. You then avoid the actual point I was making, the positive. Just look at the passage you chose to quote and then look at my post in it's entirety.  You're trapped in negative, circular reasoning and any information which comes in which doesn't support or conform to that world view is ignored, downgraded or discarded. 

The same thought processes are apparent throughout your posts here. If I had time I'd trawl through them and provide examples but in want of that I'll simply ask you to trust me that they're there. I'm sure others will have seen them as well. 

Just think for a second about this forum. There are people on here in far worse situations than you or me, with more restrictions on their diet, with family members dependent on them for support, with additional physical symptoms or actual auto immune diseases. They are living their lives, having children, enjoying their working and home lives, some of them will tell you that celiac is the least of their worries compared to other issues. What's the difference between them and you (and me to be honest?).

Please look again at the entirety of my last post and ask yourself why you seized upon the negative? I think you're depressed, your viewing everything through a negative prism and although it's mostly unlikely that a strangers words on the web will pierce through that, unless and until you address this aspect of your healing I think your struggles will continue. 

Again, sincerest best wishes and please don't take offence. My words, whether accurate or not, are offered in friendship and a recognition that we're on a similar journey.

There's a simpler explanation to the quoting stuff you mentioned... it's actually the forum software drives me nuts trying to cut a quote into multiple parts especially when posting from a mobile. No offence taken at all from any of your replies, there's only been one nasty post in the entire 6 pages of thread and I shot that troll poster down double quick!

Yup I've read and read and read to try figure this out, trouble is the more you read the worse the picture gets. As Gluten Dude posts on his blog "with celiac there is no good news". A few examples of where I started and where I'm at now having scratched below the surface...

• "avoid foods with gluten" > eat gluten-free alternative > don't eat any gluten-free alternatives > cook everything from scratch > avoid nearly everything as they're all threats (dairy, soy, corn, nightshades etc.)
• body will heal after removing gluten > leaky gut can persist afterwards > nutrient deficiencies > additional autoimmune disorders > 33% don't ever heal > cancer
• look for gluten-free option in restaurant > only eat at solely gluten-free restaurant > don't go out out to restaurants full stop
• dating is OK > don't kiss anyone without brushing teeth > don't kiss anyone full stop as makeup contains gluten

I see people saying they've healed sure, but I see plenty more that haven't and it seems even the ones that do gain some health back have had to sacrifice so much to get to that point it doesn't seem much of a life at the end. 

One thing that I do feel different with (and I really hope this doesn't offend anyone) is that I seem to be in a very different stage of life to many of the posters on here. Perhaps that's because I managed to get the (self) diagnosis so quickly (4 months compared to the 4 years average) so it's hit me right at the stage where I should be enjoying life, socialising, finding a partner etc. Part of me wonders if I'd be better off not knowing for another 10 years and at least having something nice to look back on rather than missing out and potentially still not healing anyway.

With this condition most of that goes out the window, seems to be backed up by the research that shows many young people with celiac end up feeling isolated and all the bad stuff that comes as a result. Experiences trying to continue to fit in with the normal world so far haven't been good and although there's the "positive" view of saying those people aren't worth it the reality is that being alone is far, far worse. Maybe others aren't so fussed about that social element but for me it's vital.

Another good Gluten Dude quote that really resonated me was about the celiac "plastic bubble" where you end up afraid of everyone and everything to the point there's no life left for fear of gluten creeping in. That's what I call a living hell...

[egs1707]

5 hours ago, GFinDC said:

@egs1707

Getting better from celiac damage isn't as simple as taking a bunch of pills (drugs) and following the latest exercise craze, whatever that might be.  To recover from celiac you actually have to expend some personal effort and make some changes to your diet that many people may not even consider under usual circumstances.  Yeah, lots of people have it easier.  Lots of people won't have to make the sacrifices you'll have to make.  Lot's of people aren't you though.  You are part of the 1% of society that is different, that has a life-long condition called celiac disease.

You can't change that, and nobody else can either.  The thing you can do, is learn to live with celiac disease successfully, like many people on this forum have done.  You can learn to eat healthy and treat your body with respect.  You can get better because you accept your limitations and don't let them stop you from living.  You can adapt because you are not unable to learn and grow.  If that wasn't true you wouldn't have got to this point.

It took me 5 years to get reasonably healthy feeling.  It was sure a lot of fun along the way.  But I feel pretty good now and I probably have a lot more food intolerances than you do.  You aren't an expert in living with celiac disease right now, you are a beginner.  Living with it does teach you exactly that, how to live with it.  I know being diagnosed with a life-long condition can be overwhelming and a bit depressing.  But this is the best life-long condition I can think of to be diagnosed with too.  Really we should shoot up rockets and release balloons when we are diagnosed.   Well. maybe not.

I have 1 brother who is slowly going blind from diabetes complications, and another who is half blind from retina problems.  I have a thyroid cyst that makes it hard to swallow so I always carry a bottle of water with me to wash food down.  And other assorted pains and problems that aren't worth mentioning.  Plus we have 20 or more cang dats , now that's a real problem!

Whine all you want, then look in the mirror and decide you are going to  live with this condition like all of us older wimps do.  No, it may not be easy street every day.  But life isn't always about coasting and cruising and having a good time.  Sometimes its about perseverance, struggle, determination, and pluck.

Nothing wrong with cats, the more the merrier

The 1% thing I why I'm so down on hopes of recovery. If I'm unlucky enough to be in that percentile then 33% chance of never healing doesn't sound good odds to me. 

In a world where I just want to fit in I now feel like in order to live I'm going to end up an outcast, defined and isolated by the celiac label. It's mortality put right in front of your face and it's, frankly, terrifying.

[Ennis-TX]

I feel on this quite alot, I live the bubble life, up and down days, very limited. Been like this for years,  I still have hope, I am trying to run my own gluten free allergen friendly baking, and snack business. Bit of a issue getting money with my health, situation but I started a fundraiser that is slow, and hoping I run into a philanthropist to jump start the food trailer idea, lol. I live each day with set goals, Work out, Create something new in the kitchen, clean the house, run a errand and do something productive, each day. I post my successful recipes online on blogs/forums. I enjoy and make myself useful by sharing my experience with this disease online with the community hoping my fails, and success might make it less trouble for someone else with similar issues (really helps to know the stuff I go through might benefit someone else).

As to dating, I wish I was allowed to show you but I can not link personal stuff per rules. But I have profiles on a few dating sites, where I first state I have celiac disease and would require that anyone else I intend to date also avoid gluten either for medical or personal reasons or be willing to change to this.  I have had 3 girls I have met and dated in the past 2 years, our personalities were the issues, and one of them is still a good friend. Its not impossible just harder, to find a good match.

As to healing, I have been able to introduce some foods back in, and have more up days as of late. Started hitting the weights just this week again in a attempt to bulk up. It happens just really slow and you have to stick to a gluten-free diet.

UGG I am starting to sound like a broken record lol, just realized I posted on this topic just the other day.

 

[egs1707]

1 minute ago, Ennis_TX said:

I feel on this quite alot, I live the bubble life, up and down days, very limited. Been like this for years,  I still have hope, I am trying to run my own gluten free allergen friendly baking, and snack business. Bit of a issue getting money with my health, situation but I started a fundraiser that is slow, and hoping I run into a philanthropist to jump start the food trailer idea, lol. I live each day with set goals, Work out, Create something new in the kitchen, clean the house, run a errand and do something productive, each day. I post my successful recipes online on blogs/forums. I enjoy and make myself useful by sharing my experience with this disease online with the community hoping my fails, and success might make it less trouble for someone else with similar issues (really helps to know the stuff I go through might benefit someone else).

As to dating, I wish I was allowed to show you but I can not link personal stuff per rules. But I have profiles on a few dating sites, where I first state I have celiac disease and would require that anyone else I intend to date also avoid gluten either for medical or personal reasons or be willing to change to this.  I have had 3 girls I have met and dated in the past 2 years, our personalities were the issues, and one of them is still a good friend. Its not impossible just harder, to find a good match.

As to healing, I have been able to introduce some foods back in, and have more up days as of late. Started hitting the weights just this week again in a attempt to bulk up. It happens just really slow and you have to stick to a gluten-free diet.

 

Interesting, I won't even say the "c word" as it's just got such a horrible ring to it and the word disease is even worse. I stick to some wooly phrasing around gluten when I have to explain to people as that's not quite as threatening. 

[Jmg]

When on desktop highlight the text and within a second or so the quote this button above, lot easier.

21 minutes ago, egs1707 said:

forum software drives me nuts trying to cut a quote into multiple parts especially when posting from a mobile. 

Mobile is a bit fiddlier granted. However your point is moot, it's the choice of passage I was referring to and maybe it was subconscious but my point remains. You didn't address the positive in your own comments afterwards either.

Ok:

30 minutes ago, egs1707 said:

trouble is the more you read the worse the picture gets

As I said above your research can become your enemy:

'After some time I realised it wasn't helping me any more, just feeding my anxiety and sense of gloom. You don't need to know everything about this straight away, you have plenty of time. You know enough now to get on and heal. 

20 minutes ago, egs1707 said:

As Gluten Dude posts on his blog

Stop reading his stuff, it's doing you no good. He's writing according to a business model and you should avoid any such blogs. Fear drives clicks. Limit your exposure to anecdotal accounts and draw your data from established scientists wherever possible. There is a lot of 'woo' out there and is does none of us any favours.

 

33 minutes ago, egs1707 said:

I see people saying they've healed sure, but I see plenty more that haven't

Confirmation bias! You are hanging around on sites where people are suffering. Those that healed aren't posting on gluten sites, they're off enjoying themselves! 

35 minutes ago, egs1707 said:

A few examples of where I started and where I'm at now having scratched below the surface..

All of which could be condensed as 'different strokes for different folks'. Most benefit from 6 months clean eating at the outset as healing is taking place but then many are able to add gluten-free processed foods, gluten-free oats, Corn etc that others struggle with. Some are super sensitive, others aren't. Some are willing to take a caculated risk, others don't. We each have to find our happy medium. I have my personal red lines but if Kate Beckinsdale leaps upon me in her leather vamp suit I'm not going to demand she flosses before we get it on. If I win a ticket to go round the world I'll do my research, pack some snacks and go.

40 minutes ago, egs1707 said:

Part of me wonders if I'd be better off not knowing for another 10 years

Trust me you wouldn't. I didn't and having multiple symptoms that I couldn't put down to anything was a living hell. I never thought I'd make 40 but I didn't know why. I envy you to be honest.

42 minutes ago, egs1707 said:

Another good Gluten Dude quote that really resonated me was about the celiac "plastic bubble" where you end up afraid of everyone and everything to the point there's no life left for fear of gluten creeping in. That's what I call a living hell..

To be fair to him he's probably outlining that as a state not to get into! The way to get there is to continue on the path you're currently treading. Stop going to those sites. You've had a traumatic event. Get some counselling or cognitive behavioral therapy to help you adjust. It will get better in time. 

 

[notme]

gluten dude is a major whiner, in my opinion.  (and shouldn't it be 'gluten free dude' ?)  i believe he makes his living off of the website, so why wouldn't he continue to cry about it?  after all, he's been gluten-free since 2007 - you would think he would have a handle on this disease by now, especially since he's THE gluten dude.  we all mess up now and again, we take our lumps and we carry on.  for me, it's 2 weeks feeling crappy <literally lolz) then i'm back to good.  better than ALWAYS feeling terrible, which was the norm for me pre-dx.  

and, the first year or so after i went gluten-free, i skipped the church potluck (nothing i could eat) and events that were centered around eating/food.  i USED to go to the fundraiser at the zoo which was a local restaurant tasting - basically walking around the zoo and eating.  you know, can't eat, what's the point of going?  so, i get where you're coming from.  but, once i got my 'rhythm' going, got in the gluten-free 'groove' <haha you can tell i'm old!!)  i started socializing again and i was surprised at how many people i know who have to eat gluten-free!!  but if i never went to these events, i would never know.  so, when i make something to bring that is gluten free, i'm making some other people happy, too!  just last night, one of my friends who has a gluten-free daughter and knows that she has to be very careful (she knows the 'rules' lolz) made a chocolate cake that i could eat   small victories, but victories all the same!!  you'll get there

[cstark]

On ‎1‎/‎15‎/‎2017 at 6:51 AM, egs1707 said:

Nothing wrong with cats, the more the merrier

The 1% thing I why I'm so down on hopes of recovery. If I'm unlucky enough to be in that percentile then 33% chance of never healing doesn't sound good odds to me. 

In a world where I just want to fit in I now feel like in order to live I'm going to end up an outcast, defined and isolated by the celiac label. It's mortality put right in front of your face and it's, frankly, terrifying.

So you have Celiac.  Ok.  But you can still live a relatively "normal" life, even with its ups and downs.  We live with this disease knowing the cure is right there, staying away from gluten.  Others are not so lucky with their diagnoses that have no absolute cure: diabetes, ALS, congestive heart failure, cancer, just to name a few.   

Don't get me wrong, it does get hard when you are the odd ball out asking about every little ingredient that goes into a recipe or having to say "no thanks" when a co-worker offers you something they cooked.  I get it, and sometimes the gluten free life can get down right depressing.  I want to challenge you (and me ) not to let it.  Find the recipes that work your diet (you can do it on a vegan or vegetarian diet).  If co-workers get curious as to why you don't eat their food when offered to you, explain to them.  If they don't accept it, then it's their problem.  You did the best you can to help them understand.  It all matters on how you respond to situations in life.

Hang in there.  

[egs1707]

Really need these blood test results to come through now as these latest symptoms aren't good at all.

Seems any minimal exertion (not talking sports, more like moving stuff around etc.) makes my muscles feel weak and start shaking inside (can't seem to visibly see it but certainly feel it) then get a feeling of unease \ dread in my stomach, followed by tight head and soreness in my back near the shoulders.

It's come on in the last few weeks so seems to be directly linked to the gluten-free change. I can only point at B12 as it matches so many of the symptoms but anyone else identify with this \ suggestions?

On 15/01/2017 at 1:20 PM, Jmg said:

There is a lot of 'woo' out there and is does none of us any favours.

That is definitely true, seems to go from one extreme to the other. Maybe there's a gap in the market for some straight talking (certainly many doctors could do with a checklist for how to diagnose the damn thing in the first place!)

After some time I realised it wasn't helping me any more, just feeding my anxiety and sense of gloom. You don't need to know everything about this straight away, you have plenty of time. You know enough now to get on and heal. 

Think I might be able to scale it back a bit if I felt like the changes were helping produce an improvement. Apart from a small spell for a week or so at end of December gluten-free seems to be producing the opposite effect and making me worse. Need to crack what else is going on so I don't keep feeling like I'm on a constant physical decline that even eating gluten never caused.

[Gemini]

On 1/16/2017 at 3:32 PM, notme! said:

gluten dude is a major whiner, in my opinion.  (and shouldn't it be 'gluten free dude' ?)  i believe he makes his living off of the website, so why wouldn't he continue to cry about it?  after all, he's been gluten-free since 2007 - you would think he would have a handle on this disease by now, especially since he's THE gluten dude.  we all mess up now and again, we take our lumps and we carry on.  for me, it's 2 weeks feeling crappy <literally lolz) then i'm back to good.  better than ALWAYS feeling terrible, which was the norm for me pre-dx.  

 

I couldn't agree with this more, Arlene!  He's a major whiner who doesn't seem to get it even after all this time gluten-free.  Thanks for posting this!  

[Gemini]

On 1/15/2017 at 7:35 AM, egs1707 said:

There's a simpler explanation to the quoting stuff you mentioned... it's actually the forum software drives me nuts trying to cut a quote into multiple parts especially when posting from a mobile. No offence taken at all from any of your replies, there's only been one nasty post in the entire 6 pages of thread and I shot that troll poster down double quick!

Yup I've read and read and read to try figure this out, trouble is the more you read the worse the picture gets. As Gluten Dude posts on his blog "with celiac there is no good news". A few examples of where I started and where I'm at now having scratched below the surface...

• "avoid foods with gluten" > eat gluten-free alternative > don't eat any gluten-free alternatives > cook everything from scratch > avoid nearly everything as they're all threats (dairy, soy, corn, nightshades etc.)
• body will heal after removing gluten > leaky gut can persist afterwards > nutrient deficiencies > additional autoimmune disorders > 33% don't ever heal > cancer
• look for gluten-free option in restaurant > only eat at solely gluten-free restaurant > don't go out out to restaurants full stop
• dating is OK > don't kiss anyone without brushing teeth > don't kiss anyone full stop as makeup contains gluten

I see people saying they've healed sure, but I see plenty more that haven't and it seems even the ones that do gain some health back have had to sacrifice so much to get to that point it doesn't seem much of a life at the end. 

One thing that I do feel different with (and I really hope this doesn't offend anyone) is that I seem to be in a very different stage of life to many of the posters on here. Perhaps that's because I managed to get the (self) diagnosis so quickly (4 months compared to the 4 years average) so it's hit me right at the stage where I should be enjoying life, socialising, finding a partner etc. Part of me wonders if I'd be better off not knowing for another 10 years and at least having something nice to look back on rather than missing out and potentially still not healing anyway.

With this condition most of that goes out the window, seems to be backed up by the research that shows many young people with celiac end up feeling isolated and all the bad stuff that comes as a result. Experiences trying to continue to fit in with the normal world so far haven't been good and although there's the "positive" view of saying those people aren't worth it the reality is that being alone is far, far worse. Maybe others aren't so fussed about that social element but for me it's vital.

Another good Gluten Dude quote that really resonated me was about the celiac "plastic bubble" where you end up afraid of everyone and everything to the point there's no life left for fear of gluten creeping in. That's what I call a living hell...

If you are having this much trouble with just being gluten free, then the aging process will push you over the edge.  Sorry to be so harsh but you are still complaining about the same things, even after people have gone out of their way to give you stellar advice and positive feed back. You are right....you probably won't heal because you are beyond negative.  There is no reason you cannot live a totally normal life, including social normal. It's your mindset that is holding you back.  I wish you luck with your mental state regarding Celiac Disease but you have a lot of work to do if you want things to get better.

[kareng]

5 minutes ago, Gemini said:

If you are having this much trouble with just being gluten free, then the aging process will push you over the edge.  Sorry to be so harsh but you are still complaining about the same things, even after people have gone out of their way to give you stellar advice and positive feed back. You are right....you probably won't heal because you are beyond negative.  There is no reason you cannot live a totally normal life, including social normal. It's your mindset that is holding you back.  I wish you luck with your mental state regarding Celiac Disease but you have a lot of work to do if you want things to get better.

I have to say I agree with this.  I think this poster might have  a lot of other problems and Celiac is just the one he or she is  focusing on.

[squirmingitch]

Dear egs1707,

Please read this with an open mind. My intent, truly, is to try to help you. Until now, I have pretty much stayed out of the fray here on this thread although I admit to having been tempted many, many times to say my 2 cents worth.

I will preface my remarks by admitting that I am not good at diplomacy. I tend to be blunt but please believe me when I say that I am not trying to hurt you in any way. Here goes......

I have rarely "seen" anyone as consistently negative as you. You take every single thing in the most extreme negative possible. Over the course of reading your posts I have gotten the feeling that you have always been this negative. If not always, then for many, many, many years. You talk of how quickly your friends dropped you when you said you have a problem with gluten and how they made fun of you & made you the butt of jokes. We all said those kind of people are no friends at all & you are well rid of them. Now I rethink that and have to think your negativity for so many years is the true reason these people have turned on you. Perhaps it really isn't about your food intolerances at all but that just provided the final excuse for them to "get rid of you" & kick you to the curb for once & for all. I still don't agree that being so mean & nasty is a good way to treat anyone but they may feel they have been driven to it by the way you are such a major downer 24 hours a day, 7 days a week, 365 days a year.

Ones mental state affects their physical state in a huge way. If you continue to look at everything through a black cloud then I fear you will never be healthy physically. You need to try very hard to turn your outlook around. Can you try to say ONE good thing each day? Start with just ONE thing. Then make it 2 positive things each day. Then 3 and so forth. Then also begin to NOT make a negative statement that you were going to make. Just keep that comment to yourself & don't voice it. Then try to keep 2 negative comments from being voiced, then 3 & so forth. You see, we get into habits and it seems your habit for negativity is deeply ingrained at this point. IMHO, I believe you can wean yourself off if you try hard.

[manasota]

Dear egs1707,

You will not like what I have to say.  But, like Squirmingitch (whose entire post I agree with), I am only trying to help you.

1.  You have already been given all the best advice possible by the nicest people.

2.  You seem unable to accept this advice; so I won't focus on being nice.

3.  I believe you are clinically depressed.  No, I'm not a doctor; but I have friends who have been seriously depressed.

4 You would be best served if you could try some antidepressants--if only temporarily!  This is no crime, no sin.  It is merely human.  Give yourself a break.  Plenty of people take them.  I'm a pharmacist and used to dispense PLENTY of them.  Nothing wrong with them.--especially temporarily--or permanently, if needed.

5. Until you can improve your attitude, it's unlikely you will recover.

6. Once your mental state feels better, you might give a look at Mast Cell Disorders.  Good info on this site by neonatologist who has Celiac Disease and Mast Cell Disease.  This could be your answer.  It has helped other Celiacs who could not get well only by eliminating gluten.

Please know I only wish you the very best of health!

p.s. Please go easy on me.  I wasn't diagnosed till 60 years old.  Gluten free 7 years and still working day-to-day to be healthy.  For me, continually trying to make each day the best, trying new things, and checking out mast cell info continues to help me.  I get better each day.  You can too.

[Rowan13]

I was not planning on posting on this forum anymore, but still read here occasionally. I've been following this thread somewhat and have been really feeling for this guy and hoping very much that he will find some answers and feel better very soon. I am just a little startled at these last comments however and feel they are a bit much and really too harsh. Someone who just found out he may have this condition (I'm sorry, not totally clear at the moment if he has been diagnosed or is certain for himself, but I believe he is) who feels very vulnerable, scared, frightened,  and is writing on a support section seems completely understandable to me. Sorry, I'm in pain at the moment with a food reaction myself so I hope this comes out coherently. It's a bit much to say to someone that the people around him are dumping him because they are all fed up for years and use the excuse of an illness to get rid of him. I'm putting it nicer than the person who posted it. I mean, seriously, we have no clue about such things and it seems a pretty horrid thing to say to someone who's feeling awful. I guess I'll get attacked now too but so be it. There is no time limit on how long it takes to understand something that is affecting your health and how you react to it. I can also understand about having to fight with blase medical people when it should be them fighting for your health. I can understand being scared, upset, worried. The op hasn't given up and are in fact actively taking steps to find solutions. So they are sharing their fears, well this should be the place you can feel safe doing that. Yes, people have given very good and positive advice and yes it is very kind of people but it doesn't mean that the op must stop feeling his feelings. In my opinion you give support in the hopes that it will help but you don't assume it will. Also, it may help overall, and it may help in the long run but the person may still be in the thick of dealing with a lot. I'm pretty sure the op has been polite and has often thanked people or said they appreciate the advice given. I really don't feel like typing today as I said I'm in physical pain and fighting my own demons at the moment but it hurt me to read some of these comments and they are not even directed at me. Even if well intentioned please give the op whatever time they need to try to come to grips with things. I'm just a little shocked to be honest. Also this argument about other people have it worse is a given to anyone anywhere on the earth and it shouldn't invalidate what this particular person is suffering. If I'm misunderstanding things I am sorry but at least some of what is written here does seem a bit harsh. Anyway, I wish everyone well on this forum. I truly do. I guess this is the last you'll hear from me probably. Take care.

[Rowan13]

I wanted to add that I don't mean all of the last posts or every part of them, just some parts of some of them- to me- seem a bit harsh and possibly inappropriate. Thanks.

[egs1707]

22 hours ago, kareng said:

I have to say I agree with this.  I think this poster might have  a lot of other problems and Celiac is just the one he or she is  focusing on.

Celiac is the only problem that's single handedly destroying my life right now so would respectfully disagree with you there, sorry. Was actually reasonably looking forward to 2016 at the time before all this started, never saw it coming that's for sure.

6 hours ago, squirmingitch said:

Please read this with an open mind. My intent, truly, is to try to help you.

Sure, I can safely say that's been the aim of everyone on this thread.

6 hours ago, squirmingitch said:

You talk of how quickly your friends dropped you when you said you have a problem with gluten and how they made fun of you & made you the butt of jokes. We all said those kind of people are no friends at all & you are well rid of them. Now I rethink that and have to think your negativity for so many years is the true reason these people have turned on you.

Nope, they're just the kind of people who make themselves feel better by belittling others. Took me a long time to see that but it's pretty clear to me now looking back. 

6 hours ago, squirmingitch said:

I have rarely "seen" anyone as consistently negative as you. You take every single thing in the most extreme negative possible.

Guilty as charged, doubly so at the moment as this illness has been nothing but one massive bundle of negative for the past year or so now. Had a bit of hope around 10th December that things were improving (see my post at the time that was a bit more optimistic sounding) but it's hit me for six since with the new symptoms despite doing the same things that seemed to be working before.

23 hours ago, Gemini said:

If you are having this much trouble with just being gluten free, then the aging process will push you over the edge

Part of the reason I'm so down about celiac likely taking away the best years of my life through illness. Already instead of planning holidays, dates etc. life is revolving around doctors, hospitals and blood tests. 

6 hours ago, squirmingitch said:

Can you try to say ONE good thing each day?

I can and do, just not about the celiac situation

5 hours ago, manasota said:

4 You would be best served if you could try some antidepressants--if only temporarily!  This is no crime, no sin.  It is merely human.  Give yourself a break.  Plenty of people take them.  I'm a pharmacist and used to dispense PLENTY of them.  Nothing wrong with them.--especially temporarily--or permanently, if needed.

Probably not far off with the depression theory but I wouldn't go near those medications if you paid me, seen enough people with horrible side effects from them who have got off them and now say stay well away. Relaxation and breathing techniques however I do believe can help and are much more natural.

5 hours ago, manasota said:

6. Once your mental state feels better, you might give a look at Mast Cell Disorders.  Good info on this site by neonatologist who has Celiac Disease and Mast Cell Disease.  This could be your answer.  It has helped other Celiacs who could not get well only by eliminating gluten.

Just had a quick Google and interesting to note the DEXA scan can help with diagnosis. One more thing to use to prove to the doctors why it needs to be done regardless of my age (that's their current excuse for not running it).

Actually have had an ultrasound on the abdominal area back when it was uncertain what was causing the pain, came back normal so hopefully that's a good sign.

5 hours ago, manasota said:

p.s. Please go easy on me.  I wasn't diagnosed till 60 years old.  Gluten free 7 years and still working day-to-day to be healthy.

For sure, your post is thoughtful and well written, the input is appreciated  

[egs1707]

17 minutes ago, Rowan13 said:

I've been following this thread somewhat and have been really feeling for this guy and hoping very much that he will find some answers and feel better very soon.

Thanks, me too, with enough information I'm hoping to piece the puzzle together in a way doctors seem unwilling to put the effort into doing (something that really has surprised me during this process)

19 minutes ago, Rowan13 said:

Someone who just found out he may have this condition (I'm sorry, not totally clear at the moment if he has been diagnosed or is certain for himself, but I believe he is)

Definitely got it unfortunately, blood test, two gluten challenges and biopsy doesn't leave much doubt

20 minutes ago, Rowan13 said:

I can also understand about having to fight with blase medical people when it should be them fighting for your health. I can understand being scared, upset, worried.

Couldn't put it better myself!

20 minutes ago, Rowan13 said:

The op hasn't given up and are in fact actively taking steps to find solutions.

Won't stop until I figure it out as I'm sure there's more than just gluten issues going on, even if it is as simple as a vitamin shot (fingers crossed that theory proves correct next week)

12 minutes ago, Rowan13 said:

I wanted to add that I don't mean all of the last posts or every part of them, just some parts of some of them- to me- seem a bit harsh and possibly inappropriate. Thanks.

Without putting words in anyone's mouth I'd say it's more a case of "tough love"? As above only one troll tried it on with a nasty comment and I sent them packing. 

24 minutes ago, Rowan13 said:

I'm pretty sure the op has been polite and has often thanked people or said they appreciate the advice given

Hope that has come across (and seems to based on your post) If anyone thinks otherwise that was never the intention.

25 minutes ago, Rowan13 said:

Anyway, I wish everyone well on this forum. I truly do. I guess this is the last you'll hear from me probably. Take care.

Hope you stick around Rowan and that things pick up for us both soon, quote this back at me if you're reading it  

[GFinDC]

On 1/15/2017 at 7:51 AM, egs1707 said:

Nothing wrong with cats, the more the merrier

The 1% thing I why I'm so down on hopes of recovery. If I'm unlucky enough to be in that percentile then 33% chance of never healing doesn't sound good odds to me. 

In a world where I just want to fit in I now feel like in order to live I'm going to end up an outcast, defined and isolated by the celiac label. It's mortality put right in front of your face and it's, frankly, terrifying.

Ack, I think we may have a cat lover on the forum!   I can definitely help you out with that though.  Just pm me your address and I can shoot a box of 20 or so cats at you to enjoy! Yay!

1% of the population is still a pretty big number out of over 300 million.  So there are quite of few of us around.  More than 20, that's for sure.

It's normal to feel a bit depressed, sick, and however else you want to feel about learning about your condition.  I know I wasn't supper thrilled by the new myself, especially when I started really learning about the changes I'd have to make.   No more Friday nights with Marie Calendar's turkey pot pies and a 6 pack of good beer for one thing.  Ahh well, there is reasonably ok gluten-free beer available now.  And it turns out there are plenty of other foods to eat besides frozen pot pies in a box.

There are some social type things I quit doing because they were focused on food and cost money, so that was kind of pointless for me since I couldn't eat the food anyway.  But often enough if it was something not primarily focused on food, I could bring my own food with me or find something simple to eat like fruit and nuts at shop.  None of my friends seemed to mind this although they sometimes would ask about it.  Which made for a great opportunity to educate them about celiac.

Getting better is not always real quick, and may take a year or more for big changes.  Anytime we are glutened it sets the recovery clock back some because the immune reaction is kicked off again.  So it seems to me it is more important to be extremely gluten-free at the beginning of the diet (first 6 months or more), because we are still trying to get initial recovery under our belt and our guts settled down.

There is a possibility of additional food intolerances developing also.  That can make things confusing if you know you are definitely gluten-free but are still getting sick.  The thing we use to find additional food intolerances is an elimination diet.

All this stuff is new and maybe seems strange now, but after a year or 2 you will probably be an old pro and have it down pat.  When you get used to eating different, then it just the normal way you eat, not a burden.

Plus you can always have the fun of logging into the forum so we can all talk abut how you eat!

@Rowan, Please do stick around the forum.   None of us are perfect and sometimes we just don't know how to say things the perfect way.  But I doubt there is a better place to get information on celiac and find real life celiac experience than here.

[egs1707]

45 minutes ago, GFinDC said:

Ahh well, there is reasonably ok gluten-free beer available now

Cider seems to be where it's at now, doesn't seem to affect me anywhere near as much as beer did (kinda makes sense now I guess, pint of gluten please?)

47 minutes ago, GFinDC said:

There is a possibility of additional food intolerances developing also.  That can make things confusing if you know you are definitely gluten-free but are still getting sick.  The thing we use to find additional food intolerances is an elimination diet.

Yeah that's the thing I'm hyper-vigilant watching out for at the moment, perhaps too much so. Being vegetarian complicates it further as I'm looking at the calories for the gluten-free replacement meals and while they're healthy I'm struggling to hit the 2400+ I need to maintain \ gain weight from 3 meals (well 2 really as lunch isn't really a full one)

49 minutes ago, GFinDC said:

Just pm me your address and I can shoot a box of 20 or so cats at you to enjoy! Yay!

You'll have to send them via airmail, or for 20 I think we're talking private jet territory (!)

[egs1707]

Had some blood test results back today, B12 level is normal but low in vitamin D.

Been given some 20000IU supplements to get it boosted up, according to the doctor can be a source of the muscle soreness so fingers crossed it'll help.

Also been sent for a repeat TSH test but told the labs will never run the T3 / T4 tests when TSH is normal. That seems to go against a lot of the experiences I've read where one can be off but TSH returns normal, thoughts?

[Jmg]

On 1/19/2017 at 11:28 PM, egs1707 said:

Cider seems to be where it's at now, doesn't seem to affect me anywhere near as much as beer did (kinda makes sense now I guess, pint of gluten please?)

One of the strangest things I found after going gluten free was that hangovers were a breeze! I used to have horrendous hangovers but could pour cider down all night and the next day was a walk in the park!

1 hour ago, egs1707 said:

Also been sent for a repeat TSH test but told the labs will never run the T3 / T4 tests when TSH is normal. That seems to go against a lot of the experiences I've read where one can be off but TSH returns normal, thoughts?

Cyrex labs in the States were offering testing, you may be able to get a referral if you're willing to pay? It was something I considered when the NHS tests weren't as broad as the US labs were offering. 

[egs1707]

On ‎24‎/‎01‎/‎2017 at 7:24 PM, Jmg said:

One of the strangest things I found after going gluten free was that hangovers were a breeze! I used to have horrendous hangovers but could pour cider down all night and the next day was a walk in the park!

Cyrex labs in the States were offering testing, you may be able to get a referral if you're willing to pay? It was something I considered when the NHS tests weren't as broad as the US labs were offering. 

Yeah I think there's a company over here that does Cyrex tests on demand so does sound like an option. Again quite a bit of Internet self-diagnosis going on to be asking for the tests but thyroid does seem an overlooked possible side-effect so may be worth it for peace of mind.

Keep being tempted by the food allergy Array 4 (think that's what it's called) but I waver between wondering if it's a test based on cutting edge research or pseudoscience that I could get similar results by closing my eyes and ticking random boxes instead

[kareng]

On 1/24/2017 at 11:48 AM, egs1707 said:

Had some blood test results back today, B12 level is normal but low in vitamin D.

Been given some 20000IU supplements to get it boosted up, according to the doctor can be a source of the muscle soreness so fingers crossed it'll help.

Also been sent for a repeat TSH test but told the labs will never run the T3 / T4 tests when TSH is normal. That seems to go against a lot of the experiences I've read where one can be off but TSH returns normal, thoughts?

IN the US, the labs will run whatever the doctor orders.  So the doctor won't order The T3/4 tests unless he or she doesn't like the TSH results.