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egs1707

Overwhelmed and unable to accept

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On 08/09/2017 at 5:44 PM, Gluten_free_01 said:

In my opinion, the villi are healing and repairing. However, it’s not possible to say how much they have healed and repaired based on blood test results alone. For example, if tTG is ‘X’ now, it’s impossible to say that the villi damage is equal to Marsh grade ‘Y’ now. The only way to know for sure would be a repeat biopsy, I think.

That tallies with something I read elsewhere the other day actually. No way I'm going through the biopsy again unless there's some serious concern driving it as I found the process very stressful. Even then there's not much I could do about it anyway as the AIP diet (last resort if healing isn't working) is pretty much incompatible with being vegetarian so in a way may be better off not knowing.

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12 hours ago, egs1707 said:

That tallies with something I read elsewhere the other day actually. No way I'm going through the biopsy again unless there's some serious concern driving it as I found the process very stressful. Even then there's not much I could do about it anyway as the AIP diet (last resort if healing isn't working) is pretty much incompatible with being vegetarian so in a way may be better off not knowing.

Exactly. Another biopsy would just mean additional stress and even if you found out the villi are healing more slowly than you expected, there wouldn’t be much you could do. You said you’re in your early 30s, right? Me too. I think I’ve read the younger a person is, the faster the healing. So I think you’ll be ok.

I haven’t had an endoscopy/biopsy myself because I don’t trust doctors anymore – there are risks involved such as intestinal perforation and they ask you to you sign an informed consent so it would never be their fault if something happened. So I don’t even know if I’m a ncgs or a seronegative celiac. My symptoms have improved so much on the gluten-free diet that I don’t care about a formal diagnosis anymore.

As you’ve probably noticed, I’m not a native English speaker. I’m glad that at least my English is good enough for me to be able read/understand everything I want to know about ncgs/celiac. You guys probably take this for granted :) If I were to rely on doctors and didn’t do my own research, I’d be screwed and still in pain 24/7.     

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On 12/09/2017 at 10:16 AM, Gluten_free_01 said:

I haven’t had an endoscopy/biopsy myself because I don’t trust doctors anymore – there are risks involved such as intestinal perforation and they ask you to you sign an informed consent so it would never be their fault if something happened. So I don’t even know if I’m a ncgs or a seronegative celiac. My symptoms have improved so much on the gluten-free diet that I don’t care about a formal diagnosis anymore.

As you’ve probably noticed, I’m not a native English speaker. I’m glad that at least my English is good enough for me to be able read/understand everything I want to know about ncgs/celiac. You guys probably take this for granted :) If I were to rely on doctors and didn’t do my own research, I’d be screwed and still in pain 24/7.   

Yup that form scared the **** out of me even though I had an experienced doctor performing it. Being in a hospital operating theatre is also an experience I don't want to revisit in a hurry. Tbh the formal diagnosis doesn't really change much, in the UK it used to be a way to get discounted food but that's all gone now so apart from confirming what you already suspect there's not much to be gained from my experience anyway.

Your English is fine, had you not mentioned it's not your native language I'd never have guessed B)

Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety :rolleyes:

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16 hours ago, egs1707 said:

Your English is fine, had you not mentioned it's not your native language I'd never have guessed B)

Thank you.

16 hours ago, egs1707 said:

Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety :rolleyes:

I agree. I’m glad we’ve been able to figure it out ourselves – I think we’re smart actually :) When I imagine that I would treat each of my symptoms separately with different kinds of medicine, it’s a scary idea. E.g.: chronic migraines – triptans for a lifetime, anxiety – antidepressants and benzodiazepines, thyroid issues – thyroid hormones, gyn. issues – hormones again, nausea – antacids daily or idk, GI issues – imodium all the time, pain in general – Brufen.. like every other day. That would be ‘fantastic’. Basically this is the reason I like the functional medicine approach more than the classical medicine one. Sorry for the rant - I guess I’m in the anger stage now. I have some problems in other areas of my life too.. I mean besides health.. as most people do. I wish I was able to solve these as well.

As for celiac/ncgs and the social aspect, I think this is a good approach:

'You owe nothing to anybody but your own health, your own family, your own major true contributions of what you are and what you want to give to the world.'

http://brendonburchard.tumblr.com/post/122104163528/how-to-prioritize

Note: This is not an ad. I just like this guy's attitude towards prioritization. 

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On 03/09/2017 at 2:35 PM, Gluten_free_01 said:

Ok, I see. But at least you’re strong enough to take celiac seriously and not live in denial. You said your antibodies went down significantly and that’s also a great sign and a proof that you’re responsible and self-disciplined. Look at it this way :)

No chance of denying it after I pretty much found it and the result was well beyond any doubt that's for sure. The tips from here and avoiding a few of the dubious ingredients like barley malt, oats etc. no doubt helped get the numbers down.

Trouble is I've got to a point where I'm contemplating an impossible choice...

  • stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms.
  • take a lot more risks, probably go down the "cheating" route from time to time as well to fit in socially knowing full well the implications. No need to lecture me about the consequences, I've read the full horrifying list but at least I get some short-term enjoyment as opposed to pretty much none on the gluten-free lifestyle.

Both pretty bad options, just haven't quite figured out which is worse yet.

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1 hour ago, egs1707 said:

No chance of denying it after I pretty much found it and the result was well beyond any doubt that's for sure. The tips from here and avoiding a few of the dubious ingredients like barley malt, oats etc. no doubt helped get the numbers down.

Trouble is I've got to a point where I'm contemplating an impossible choice...

  • stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms.
  • take a lot more risks, probably go down the "cheating" route from time to time as well to fit in socially knowing full well the implications. No need to lecture me about the consequences, I've read the full horrifying list but at least I get some short-term enjoyment as opposed to pretty much none on the gluten-free lifestyle.

Both pretty bad options, just haven't quite figured out which is worse yet.

.....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date?  Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it.

I swear I know your right now suffering from defenicey mental issues and anxiety, but the s$#& goes away after some healing......honestly people like and you instances like this are why I think a celiac halfway house needs to exist......rant over. Please just, step back look at our advice and change everything over to gluten-free, social isolation...gluten not so much try being allergic to corn and olives I get bloody reactions from shaking peoples hands, or putting my arm on a table to learn some kid spilled a soda with corn syrup on it that causes a rash sometimes if they have stuff I am allergic to on their hands, your damn lucky. SO fix it now or you will regret it when you get worse issues and allergies and truly have to live in a bubble or die in a bed withering in pain.

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1 hour ago, egs1707 said:

No chance of denying it after I pretty much found it and the result was well beyond any doubt that's for sure. The tips from here and avoiding a few of the dubious ingredients like barley malt, oats etc. no doubt helped get the numbers down.

Trouble is I've got to a point where I'm contemplating an impossible choice...

  • stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms.
  • take a lot more risks, probably go down the "cheating" route from time to time as well to fit in socially knowing full well the implications. No need to lecture me about the consequences, I've read the full horrifying list but at least I get some short-term enjoyment as opposed to pretty much none on the gluten-free lifestyle.

Both pretty bad options, just haven't quite figured out which is worse yet.

Option no. 1 is the better one. In my opinion, the gluten free diet is not miserable. That said I’m not a vegetarian so I do realize I have more options in restaurants etc. and can enjoy a greater variety of foods. Thankfully I like cooking – I think this has saved me lol.

Have you ever studied economics? I think this whole thing basically comes down to a cost/benefit analysis. Terrible symptoms on the gluten containing diet are the cost and living a relatively normal life free from pain and constant health issues is the benefit. For me, the outcome is clear – the benefits outweigh the costs. Have you ever had terrible chronic migraines?.. well, I did.. the pain was so bad I often thought I was slowly dying from a brain tumor. When I compare the restrictions of the diet to all of my symptoms, the result is obvious.      

As for the social isolation: as I said, I think this is about priorities. My approach is the following (that video in my previous post had inspired me): Health is no. 1 priority in my life and the attitudes of others are secondary to me. I’m not as selfish as it sounds now lol. Seriously, it’s your choice and pls don’t choose the second option because if you ruin your health you’ll ruin everything. I mean if you were able to figure this out by yourself in 9 months (facing incompetent doctors who tend to misdiagnose almost every celiac) and now you’re able to lead a normal life, go to work, be financially independent, have hobbies etc. despite the health issue, I think you’re a (mentally) strong guy. And as I said, don’t take the decrease in antibodies and the improvement of your physical symptoms for granted – it’s a success and a good sign. Don’t be so hard on yourself :)

 

 

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I read a study online that a lot of people with celiac disease have a really high level of anxiety when they first start a gluten free diet. According to the study a year later their anxiety levels about things are much more normal. 

Vitamin deficiencies might contribute to this. I take a gluten free complete vitamin/mineral tablet each day. 

I will be blunt also: Go gluten free or die.  :/  That is what it comes down to. It really isn't worth it to take chances with your health.

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4 minutes ago, ch88 said:

I read a study online that a lot of people with celiac disease have a really high level of anxiety when they first start a gluten free diet. According to the study a year later their anxiety levels about things are much more normal. 

 

I found this to be true.  I think as you go along, you get into a groove - things  become habit.  You think about it less because I think becomes second nature.

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21 minutes ago, kareng said:

I found this to be true.  I think as you go along, you get into a groove - things  become habit.  You think about it less because I think becomes second nature.

Exactly. A change in diet such as ours has a learning curve, and it makes people feel out of control. Which causes anxiety. Once people get some experience under their belts and, as you say, the diet becomes second nature, you feel more in control and suffer much less anxiety.

I personally was thrilled that my symptoms went away so easily with a simple change in diet. 

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egs1707: I was writing the previous post in a hurry and really simplified the paragraph about the costs and benefits. So, I’d like to specify it because maybe it didn’t make any sense. I hope there are no economists here :)

Alternative 1: Gluten-free diet

Benefits: health, no unpleasant symptoms, no pain

Costs: fewer meal/food options, social isolation in certain situations

Result: Benefits are greater than costs. (=my opinion)

Alternative 2: Gluten containing diet

Benefits: no diet limitations – greater variety of foods, no social isolation

Costs: serious health risks (those related to untreated celiac), putting your life at risk, living with the unpleasant symptoms every day

Result: Costs are greater than benefits. (=my opinion)

 

So, from my point of view, Alternative 1 is the right choice.

 

This is a rational/logical approach. Btw emotions are ok.. in real life I don’t really like guys who hide their feelings all the time tbh. But don’t let emotions control you - there has to be a balance.. :)

I hope you’ll make a good decision for yourself.

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On 9/17/2017 at 10:32 AM, Ennis_TX said:

.....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date?  Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it.

I swear I know your right now suffering from defenicey mental issues and anxiety, but the s$#& goes away after some healing......honestly people like and you instances like this are why I think a celiac halfway house needs to exist......rant over. Please just, step back look at our advice and change everything over to gluten-free, social isolation...gluten not so much try being allergic to corn and olives I get bloody reactions from shaking peoples hands, or putting my arm on a table to learn some kid spilled a soda with corn syrup on it that causes a rash sometimes if they have stuff I am allergic to on their hands, your damn lucky. SO fix it now or you will regret it when you get worse issues and allergies and truly have to live in a bubble or die in a bed withering in pain.

Way to go, Ennis!  You said what was rolling around in my head.  ;)

 

On 9/17/2017 at 10:32 AM, Ennis_TX said:

stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms.

This was the paragraph that did it for me.  This pity party has lasted way too long.......   :rolleyes:

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I agree! This pity party has lasted way too long!

It's sink or swim buddy boy. No one can save you except YOU. Just like with alcoholics......and drug addicts...... no one else can save you, you have to WANT to save YOURSELF. Only then will anyone be able to help but that doesn't mean you can give up & go back to your self pitying ways.

With that said, I'm done wasting my time on you. I wish you all the success in the world but I refuse to watch you wallow any longer.

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On 17/09/2017 at 3:32 PM, Ennis_TX said:

.....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date?  Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it.

Ennis your passion for leading the gluten-free lifestyle certainly shows through,and although I wouldn't necessarily advise following through the punching method I get what you're trying to say. On the flip side I could equally show you the shocked \ disgusted reactions people display when the celiac secret comes out... and trust me it always comes out one way or the other. As for bringing your own cup to a bar over here well... let's just say that wouldn't go well. Don't think I haven't tried the drink-only date, give me some credit lol but even if that goes well food is up on the next one and the reaction at that point is always the same.

A slight variation on your quote I find although you can exist and eat enough food to get through the day it's not living. The living part is being able to pop into any random restaurant with your friends \ date spontaneously without carrying out a plastic box of food or worrying if a jacket potato has been cut with the wrong knife. Not to mention having to admit to celiac in front of people and watching \ hearing the sarcastic reactions for the hundredth time.

On 17/09/2017 at 4:43 PM, Victoria1234 said:

Exactly. A change in diet such as ours has a learning curve, and it makes people feel out of control. Which causes anxiety. Once people get some experience under their belts and, as you say, the diet becomes second nature, you feel more in control and suffer much less anxiety.

I personally was thrilled that my symptoms went away so easily with a simple change in diet. 

It's not so much that, it's the change in attitude from people that's done for me. It's like celiac pretty much killed my old life socially and I'm left with this rather empty one instead where people back away because of all the lifestyle restrictions. 

The symptoms part is interesting too, I didn't have the serious ones that long relative to some on here and the side effects since have actually been as bad if not worse at times. Based on having done way too much research it appears they may well not improve that much further for me as if the gut healing \ inflammatory foods theories (lectins etc.) are correct I'm a bit stuck as AIP \ SCD with their heavy meat focus are non-starters.

The fact the levels have dropped so significantly with little improvement physically is a bit weird - although I'll wholeheartedly agree that the amount of uncertainty of what exactly is causing xyz pain and all the potential related autoimmune illnesses that can randomly activate themselves is a huge source of anxiety. The future scares me now frankly.

On 18/09/2017 at 7:50 PM, Gemini said:

This was the paragraph that did it for me.  This pity party has lasted way too long.......   :rolleyes:

Not quite sure how you misquoted that so it looked like it came from Ennis but it's a simple statement of fact, gluten-free diet has caused as many physical issues as it's solved and the social toll is real. Sorry it doesn't fit your timeline of how the body is meant to heal or how the patient is meant to recover. Looks like celiac didn't get the memo :rolleyes: 

On 18/09/2017 at 10:59 PM, squirmingitch said:

With that said, I'm done wasting my time on you. I wish you all the success in the world but I refuse to watch you wallow any longer.

And on that note perhaps time for mods to lock the thread, doesn't seem much more constructive discussion to add here.

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2 hours ago, egs1707 said:

On the flip side I could equally show you the shocked \ disgusted reactions people display when the celiac secret comes out... and trust me it always comes out one way or the other

LOL yep I think 5-7 times today for me, and 2 of them I laughed at the fat ass waddle by my booth in my head and go to the booth of gluten strudels at the farmers market. Yep I  inform them I sell gluten free baked goods, artisan almond butters and diary free icecream. I get that disgusted look, that laugh, that oh really?, that "I like my gluten" (literally say this) I inform them, I am direct "I medically have to be gluten free since I have celiac" Many scuff, many walk away, my celiac customers respect it, and 1 today heard this and came up to me saying they suspected they had gluten issues. Long talk ensued and they tell me the blood test came back negative but they did not know they needed to be eating gluten for the test and were gluten free when they did it. I informed them of this site, the 12 week daily requirement of at least a half slice of bread a day for testing, and told them to come check out this site and look into retesting then gave them my card.

Being open about it can lead to revelations and finding others who would otherwise be quiet about it. But I have been dealing with it for years so it might just take you some time to be open and even joke about it.

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Not to be rude, but I seriously don't get all the doom and gloom about a celiac diagnosis.  Maybe I live in a bubble, but I can't recall an instance where I felt put down, humiliated, was given disgusted looks, or felt I was being treated any differently than anyone else.  If it's happening, it must be that bubble thing or I'm just oblivious to it.  I can't think of anyone I know who cares about what I can or cannot eat.  Seriously!  I eat out, go to parties and picnics,  I travel, meet friends for coffee.  My life has not been that greatly impacted because of food!  It takes a little pre-planning of meals sometimes, but holy cow!  When I was diagnosed a couple (well...4) years ago, I wasn't sad or shocked, but HAPPY that it wasn't something worse.  I'l admit there's quite a learning curve to figuring it all out, and I had help from a dietician.  It wasn't easy - it took me 2 1/2 yrs. of doing everything right to turn it around, but I did.  And, I have never, ever cheated! It could always be worse! My nephew is diabetic, a good friend is in remission from breast cancer, another is going through screening for diabetes, my sister has lupus. There's more I could list, but I'm sure you get the point.  Me? I have celiac!  I can control it with food.  I feel lucky!

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"the shocked \ disgusted reactions people display when the celiac secret comes out..."

"Not to mention having to admit to celiac in front of people and watching \ hearing the sarcastic reactions for the hundredth time."

http://www.wavlist.com/movies/085/agd-horror.wav

"Embrace the Horror!"

People in general fear what they don't understand.  They have those reactions because they are ignorant of what "being Celiac" entails.  They fear what would happen to themselves if they got the same diagnosis.  And to make that fear go away, they ridicule and minimize, to make themselves feel better.  It's a reflection on them, their ignorance and fear.  NOT you.  Don't let their reactions stop you from doing what you want to do.

 

When I do get to feeling alienated, I watch or remember this movie...

https://m.youtube.com/watch?v=d4aGxG-SBSE

It's about an alien race that tries to blend into human society.  There's some dietary differences that are really interesting.  I don't want to spoil the movie for you.

Some days I feel like an alien trying to avoid certain dangers on Earth, and some days I'm the only human surrounded by aliens... (They eat what???!!!???!!!)

It's not you, it's them.  Like Enis said, let the fat alien waddle off to the gluten strudels.... You're going to be a much healthier human in the long run. 

You are in a much better situation because you've educated yourself and you know what needs to be done.  Do it well, do it bravely.  

And do it with your lunch box in tow.  The more you do something, the better you get at it, like Victoria said.  Practice, practice, practice.  Decorate your lunch box with Celiac slogans and the gluten free symbol. It can be a conversation starter similar to Enis' gluten free food booth or my knitting bag.

When people get that digusted/shocked look on their faces, break the ice, say "I don't think I'm contagious anymore.  Do you see any green spots?"  And wink.  And smile.  And go on your way.  Once they see you're okay with it, they will be, too.  

But you have to be okay with it.  That's why I say "embrace the horror".   You have celiac disease, don't let celiac disease have you.  Celiac Disease is worrisome and a bother and different from what was previously and different from others.  But it's yours.  Do it well. Do it bravely.  

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On 10/7/2017 at 7:56 PM, gilligan said:

Not to be rude, but I seriously don't get all the doom and gloom about a celiac diagnosis.  Maybe I live in a bubble, but I can't recall an instance where I felt put down, humiliated, was given disgusted looks, or felt I was being treated any differently than anyone else.  If it's happening, it must be that bubble thing or I'm just oblivious to it.  I can't think of anyone I know who cares about what I can or cannot eat.  Seriously!  I eat out, go to parties and picnics,  I travel, meet friends for coffee.  My life has not been that greatly impacted because of food!  It takes a little pre-planning of meals sometimes, but holy cow!  When I was diagnosed a couple (well...4) years ago, I wasn't sad or shocked, but HAPPY that it wasn't something worse.  I'l admit there's quite a learning curve to figuring it all out, and I had help from a dietician.  It wasn't easy - it took me 2 1/2 yrs. of doing everything right to turn it around, but I did.  And, I have never, ever cheated! It could always be worse! My nephew is diabetic, a good friend is in remission from breast cancer, another is going through screening for diabetes, my sister has lupus. There's more I could list, but I'm sure you get the point.  Me? I have celiac!  I can control it with food.  I feel lucky!

I feel the same.  Every so often, someone will roll their eyes.  I try not to discuss it unless I have to,  only because I don't love having the topic of conversation become me, but others seem genuinely curious.  Every so often I have a pity party over not being able to just pick up a sandwich at the deli when I'm rushed, or having to pass up all the good desserts on the cart, but mostly it's no big deal.  Maybe, like you, I know how lucky I am that I have something that can actually control and solve - without medications, chemo, surgery, etc.  

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On 1/23/2018 at 5:43 PM, Nikki2777 said:

I feel the same.  Every so often, someone will roll their eyes.  I try not to discuss it unless I have to,  only because I don't love having the topic of conversation become me, but others seem genuinely curious.  Every so often I have a pity party over not being able to just pick up a sandwich at the deli when I'm rushed, or having to pass up all the good desserts on the cart, but mostly it's no big deal.  Maybe, like you, I know how lucky I am that I have something that can actually control and solve - without medications, chemo, surgery, etc.  

Exactly this!  My pity party happens very infrequently but it always involves my inability to eat at a food festival and the food is cooking and smells so good!  Those are the few things that make Celiac hard but it's only hard for a nano second and I move on. I have been doing this for 13 years now so for me, it feels completely normal.  The gluten-free food world has drastically changed for the better in 13 years so it's easier than ever to make the transition.  There was a guy here at work who was diagnosed as a child in the early 60's and he said there was nothing carby you could eat back then.  No bread, no nothing.  That would be cause for a pity party.  :o

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This thread is everything I have gone through, wow! I can write a book on my journey with celiac as well; from my fears of potentially having lymphoma cause of my symptoms (nights sweats, itchy skin at night, rashes) to actually diagnosing myself with Celiac Disease accurately thanks to accidentally trying Nestle's Cheerios for the first time last December that helped me get to the bottom of my symptoms.

It was when my symptoms started to worsen in December, so I was reading random articles about how to detox your body, because I thought that was one of the reasons for my symptoms too (I was trying to stop thinking about the fact I might have blood cancer). Some article stated that we need more fiber and that fiber can be found in Cheerios. So I found a shop that sold them and bought a box. Upon eating it, I felt the nagging pain under my right ribcage/upper abdomen, which was usual for me so I didn't think much of it. It wasn't until I started to get a painful joint in my elbow as well as a stubborn itch that would occur every 5 mins as soon as I'd fall asleep. My neck, arms, legs, stomach.. it was everywhere and I couldn't fall asleep because it'd come back as soon as I'd fallen asleep.

Three doctors, two female and one male, brushed my symptoms off completely. One of them told me that I was looking too much into it and prescribed me anti-anxiety pills (which I didn't take of course), although it felt quite reassuring to have a doctor telling you that you're alright, although deep down you know you're not alright but just decide to go with it. It's a bit like how overly religious people find solace in what their leaders preach, except in my case, despite what my doctor was telling me, I knew that her reassurance meant nothing and that I was having a serious problem here. 
Oh,  and not to mention that another one told me that I should spend more time going out and stop worrying. :) 

The following days, I checked the Cheerios box and one of the ingredients said 'gluten' with bold letters. At that point, I must say I had only heard about gluten two-three times, and I thought that it was just a fad among people from the United States that has recently spread even in third world countries. But when I googled 'gluten' and where it can be found, it dawned on me and I connected everything! I cut white bread out of my diet replacing it with whole grain bread and my itching miraculously disappeared after two days! 

From the start of 2018, up until April I kept educating myself and keeping myself on a low-gluten diet because now I started getting stomach cramps from being glutened, as well as pain in my elbow joints.

Long story short, I decided to get tested on my own and paid for it with my money. The test showed not only wheat intolerance but also milk, yeast, soy, peanuts, sunflower and veal intolerance. I thought of going with my blood results to these doctors' offices and rub it in their face, but the real loser, ultimately, is ME in this case. 

I am grateful to have been able to correctly diagnose myself (I took a year off college to get to the bottom of my health issues cause I thought I was going to get diagnosed with lymphoma any minute) but it's so defeating knowing that in the long run it doesn't look good even if you DO adhere to the gluten-free diet. I thought 'hey, gluten intolerance is not that bad compared to lymphoma' but when I read that article about how it increases the risk of that disease, I felt as if I had sold my soul to the devil, unaware of the small print and the consequences that come with it. The worst thing of all is that you can't escape from it and be the person you once used to be.

Of course I have accepted this, but it's just so unusual to wake up every day knowing you will never get better. Even when your symptoms do subside, you will never get rid of that lurking feeling about potential cancer or thinking about secretly getting glutened due to cross-contamination, or just leaky gut in general.

I can say that I could see this coming because in the summer of 2016 I was diagnosed with Mitral Valve Prolapse. Because of that I decided to join their facebook group, and many of the people who had it were saying how they eventually contracted other autoimmune diseases. I never even knew what an autoimmune disease was?
From an English language student, I became a medical student overnight, literally a doctor without a coat who has saved his own life on time. 

Thanks to this site and forum, I was able to diagnose myself correctly when doctors and everyone around me thought I was being paranoid and didn't take me seriously one bit. People live with this notion that just because it's someone they know, it's impossible for something bad to happen, kind of like being certain that the main character will never get majorly wounded because THEY ARE the main character after all. But life's a different story and I believe that people who think like that either have a big ego and think they're invincible or simply refuse to accept the reality that something like that is possible to happen to each and everyone of us.

Whoever runs this site, thank you so much!

 

Edited by Martin Shipinkoski

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
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    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
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    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
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    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
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    Source:
    Alimentary Pharmacology & Therapeutics