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Lisa

Healed And Never Get Sick

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I think the bottom line is that even if it takes repeated glutenings to get as bad as it was it took most of us over a year of pain to get to this stage.

If you don't get an immediate strong response then keep going the point at which you do is going to be when you have done enough damage.

Even worse, that damage isn't always reversible and the process is a bit of a cascade effect. We get glutened and damage our ability to adsorb nutrients and put a huge stress on our immune system, various organs (like the thyroid) etc. and all of this means it is harder to get back. We basically wear the bodies ability to heal down ...

The idea of a gluten challenge is to me anathema. It is by design to damage the body to a point it can be observed by a fairly chance based procedure (in terms of sampling) .. if we get a negative what to do? Do we keep going and see if we can damage it enough the next endoscopy finds damage?

Also it is worth remembering many 'symptoms' are easily masked. We can put the odd D down to something dodgy, we can explain dark moods or stomach pain various ways and if it is passing dismiss the gluten but it doesn't mean it wasn't gluten. Remember its easy to believe what you WANT to believe.

Just so no-one misunderstands me, (and I'm not trying to be argumentative here) I don't eat gluten on purpose and if I get any accidentally, it's because I refuse to quit my job, stay home and never eat anywhere but home- like at my in-law's house (they're saints) or at a business lunch or dinner. I have an executive level job- eating out is required. I usually go through MAJOR efforts to get a gluten-free meal at business dinners and I even run the risk of insulting my host or my business clients. The President of my company knows how to order for me! She instructs her secretary, who also knows how to order for me!

And I don't eat at the homes of casual acquaintances, I don't eat fast food and I don't eat out very often just for the fun of it. Just in the past week, I have had NOTHING to eat at two potlucks I attended for my volunteer activities. I just had water. At my sister-in-law's wedding, I ate nothing and only drank the champagne! Even if the item appears gluten-free, the risk of CC is too high.

So, given these parameters, yes, I may be getting some gluten and that's why I say I hope there is no damage. And while I don't expect a cure, I would welcome a pill (like the one that is in Phase II clinical trials now) to take on those occasions that I HAVE to eat out and am worried that there might be an accident or CC. But don't think that I have my head in the sand.

~Laura

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I don't think that gfp's response was directed to anyone in particular.

Anytime that anyone of us eats out, we are exposed to potential cross contamination. That's a risk either by choice or necessity. As Laura pointed out, it's always important to minimize your risk as much as possible.

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Just so no-one misunderstands me, (and I'm not trying to be argumentative here) I don't eat gluten on purpose and if I get any accidentally, it's because I refuse to quit my job, stay home and never eat anywhere but home- like at my in-law's house (they're saints) or at a business lunch or dinner. I have an executive level job- eating out is required. I usually go through MAJOR efforts to get a gluten-free meal at business dinners and I even run the risk of insulting my host or my business clients. The President of my company knows how to order for me! She instructs her secretary, who also knows how to order for me!

And I don't eat at the homes of casual acquaintances, I don't eat fast food and I don't eat out very often just for the fun of it. Just in the past week, I have had NOTHING to eat at two potlucks I attended for my volunteer activities. I just had water. At my sister-in-law's wedding, I ate nothing and only drank the champagne! Even if the item appears gluten-free, the risk of CC is too high.

So, given these parameters, yes, I may be getting some gluten and that's why I say I hope there is no damage. And while I don't expect a cure, I would welcome a pill (like the one that is in Phase II clinical trials now) to take on those occasions that I HAVE to eat out and am worried that there might be an accident or CC. But don't think that I have my head in the sand.

~Laura

I think we are saying the same thing....

I have the same problem eating out with work b.t.w.

The reality is unless we put ourselves in a bubble we will get some CC and some accidental glutening, its just a reality of the world we live in.

As others have noted, the damage seems to some extent to be cumulative. This makes sense, I don't think all our villi disappear on a single glutening etc. and we are always going to be exposed to background glutening however hard we try. So I think for me that means trying not to take risks unless I have to.

Business dinners are one of those realities. I am presently doing a lot of work in Hotels behind the scenes. I get to meet the Chefs and talk to them and wander through the kitchens. Its really quite frightening the level of knowledge or lack of knowledge to be more accurate. Only the other night I was offered steak and chips and I know that the chips are cooked in the same oil as breaded or battered things. When I mentioned this to chef he just said, "oh you're that sensitive?" I'm in a pretty lucky position in being behind the scenes, I dread to think what it would be like passing the order via the waiting staff. Its not that they not trying or accommodating, they just don't get it.

Just seen Momma Goose's post and my post certainly wasn't directed at anyone particular....

Indeed if the line about believing what we want to believe seemed so... see my signature which has been like this for years.

If you can't figure out the latin it says Man will willingly believe what he wishes to believe.

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By then, I did not have many questions, but wanted to share what I knew so I could help others. That is still the main reason that I am here. I have many friends on this board, and am happy to be part of the community here.

Peter, the board is very lucky to have you as part of the group!

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Wow, Lisa.....I had added a topic tonight that covered my recent repeat scopes.......so my answer would be I still feel the bloat,abd cramps,diarrhea,mouth ulcers,muscle cramps IF I get an inadvertent glutening. I haven't felt a symptom free known accident ...ever. I am partially encouraged that my gut is less damaged than 4 1/2 years ago, but discouraged at the same time. I want 100% !!!!!!!!!! I doubt my GI will redo the EGD unless I start failing to thrive. The colon.........well, it bears a 3 year repeat.

Happiness to all who are doing well!

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:blink: I have been gluten free since my diagnosis August 2005.

Although I cook most of my meals and I order well when I eat out, I NEVER get sick. That sounds like a good thing, but I do wonder. Surely, in the past year, I have been exposed to some sort of goof or cross contamination. I don't even feel bad.

I was fortunate never to have had the severe stomach pain that many of you have when glutened. At my worst, I had fatigue, malnutrition, vitamin deficiencies, ataxia and the worst was unannounced acid bathroom runs that kept me house bound for two months.

My guess is that at this point my system is healed and it would take repetitive glutenings for me to have the obvious bathroom issues. I also am aware of the silent damage, but am almost tempted to do a challenge.

I am curious what others, who are healed, experience in this new stage for me.

If you have a diagnosis and know for sure that you have celiac disease, why would you do a gluten challenge?

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If you have a diagnosis and know for sure that you have celiac disease, why would you do a gluten challenge?

"...almost tempted" is not the same as DOING a challenge. Thank you for your imput.

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I don't think that gfp's response was directed to anyone in particular.

Anytime that anyone of us eats out, we are exposed to potential cross contamination. That's a risk either by choice or necessity. As Laura pointed out, it's always important to minimize your risk as much as possible.

Thanks Momma!

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I think we are saying the same thing....

I have the same problem eating out with work b.t.w.

The reality is unless we put ourselves in a bubble we will get some CC and some accidental glutening, its just a reality of the world we live in.

As others have noted, the damage seems to some extent to be cumulative. This makes sense, I don't think all our villi disappear on a single glutening etc. and we are always going to be exposed to background glutening however hard we try. So I think for me that means trying not to take risks unless I have to.

Business dinners are one of those realities. I am presently doing a lot of work in Hotels behind the scenes. I get to meet the Chefs and talk to them and wander through the kitchens. Its really quite frightening the level of knowledge or lack of knowledge to be more accurate. Only the other night I was offered steak and chips and I know that the chips are cooked in the same oil as breaded or battered things. When I mentioned this to chef he just said, "oh you're that sensitive?" I'm in a pretty lucky position in being behind the scenes, I dread to think what it would be like passing the order via the waiting staff. Its not that they not trying or accommodating, they just don't get it.

Just seen Momma Goose's post and my post certainly wasn't directed at anyone particular....

Indeed if the line about believing what we want to believe seemed so... see my signature which has been like this for years.

If you can't figure out the latin it says Man will willingly believe what he wishes to believe.

Thanks gfp... that backroom restaurant experience is scary. And thanks for the translation- very little Latin language ability here.

~Laura

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Please don't misunderstand my post. It certainly is not about bragging rights, far from it. It's more of a curiosity for me. When people who frequented this site feel better and confident in the diet they move on and no longer need the information and support found here. It isn't often that we hear from people who have successfully eliminated their symptoms by diet controll after several years and have no celiac issues.

I was terribly sick for the most of my first year after being diagnosed. I never thought that I would regain the mental agility that I had lost. It left me with severe muscle atrophy which I am working on now. I have jeans ranging from size 2 - 14 :o (5'8")

I know that over these years I have eaten unsuspected gluten and certainly some cross contamination and yet, I don't react. Would it take repetitive exposure to react? This I assume to be true and would like to talk to others like me. - if they are still around.

As I find myself in new uncharted ground, if it serves as an inspiration for those struggling now, I hope so. I am fully aware that Celiac can "morph" into something more serious in the years to come. That is something that I rather expect. Guess, I'll take one day at a time.

I have been gluten-free since April of 2005 and have had complete resolution of ALL Celiac symptoms. I have never felt better and I'm 48 years old. I think it was a combination of things that made my outcome so good, such as eating healthy before I was diagnosed. Little did I realize it was those 12 grain loaves of fresh bread from Whole Foods that were doing me in, though! I never ate fast food or much processed food because it set off an attack of gastric distress so bad, I couldn't get out of bed. But I think the fact that I ate lots of fruits and veggies also made my recovery faster.

I also knew about nutrition and food content on a deeper level because I almost went to school for it and read many books on the subject. I knew where gluten was so my learning curve was shorter. I eat out infrequently but when I do, go to higher end restaurants and talk to the chef or head waitstaff to ensure a safe meal. If the food arrives and I have any doubts, it gets wrapped and my husband has lunch the next day. I am disciplined about the diet because being that sick again is not an option. If you stick to the diet and be patient, total healing can occur and glutenings will be rare. I do doubt that anyone can totally avoid being glutened for the rest of their lives but when it does happen, be patient and go from there. I also do not have any other food issues, except watching the amount of dairy I have on a daily basis.

I can have all the rest, as long as they are gluten-free. Folks with multiple food sensitivities are going to have a harder time of it but I still think it can be done, with time.

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Momma Goose. I was a lot like you, I felt overhwelmed and sick the first nine months after going gluten free. Even things that didn't have gluten in them made me sick. I was constantly having diarrhoea, and that horrid stomach. I think I was sicker than what I was prior to diagnosis. I guess this was the healing process. Then I did a couple of things took a two week course of metamucil (it can aid in constipation or diarrhoea) and I was more careful with the dishwasher at work, and things turned up rosy. The disrrhoea all but dissappeared, but I still on occassions get the funny tummy. I can't be 100% sure if it was those couple of things that helped or not, or just that I got better.

I thought I had lost that mental agility too, and I wasn't too worried about my physical health, it seemed fine, but now I see it wasn't that fine, and I was pretty tired a lot of the time, even though I exercised a lot, as in walking everywhere.

So now that I am what I call "better" I have sometimes wondered whether gluten is that baddy that it is meant to be, and at times I do wonder whether I should challenge it. I did once, and I knew I had eaten gluten, it was only a crumb, but I knew. It was different to the other 99 times when I felt I had been cc'd. Then that makes me wonder if it was cc that was a problem for me or if it was something else I had eaten that made me think I had eaten gluten. It is quite confusing at times, but by doing that crumb challenge I believe it is not worth doing again.

I guess I am okay 80 percent of the time, and then I do something like eat something a bit suspect, but not suspect enough to say, oh yeah that was gluten, and I am crook for a day or so. I can handle that, but I have learnt to take more care of myself then, and just eat plain wholesome food for a few days.

I know I find it hard to believe that someone on a gluten-free diet can get it totally right from the first day, maybe they can, and if they can they must have an awesome knowledge about food.

As for expecting things to go from one disease to another, (not saying coeliac can disspappear) I guess I am still on the lookout for whatever else might manifest itself in me. I feel I have got off lightly with coeliac, especially considering I was 48 when I was diagnosed. You get to that age thinking it is all downhill from 50, but I can tell you I have more energy than what I had in my 20's.

Gosh it sounds like a mini rant.

Cathy

Please don't misunderstand my post. It certainly is not about bragging rights, far from it. It's more of a curiosity for me. When people who frequented this site feel better and confident in the diet they move on and no longer need the information and support found here. It isn't often that we hear from people who have successfully eliminated their symptoms by diet controll after several years and have no celiac issues.

I was terribly sick for the most of my first year after being diagnosed. I never thought that I would regain the mental agility that I had lost. It left me with severe muscle atrophy which I am working on now. I have jeans ranging from size 2 - 14 :o (5'8")

I know that over these years I have eaten unsuspected gluten and certainly some cross contamination and yet, I don't react. Would it take repetitive exposure to react? This I assume to be true and would like to talk to others like me. - if they are still around.

As I find myself in new uncharted ground, if it serves as an inspiration for those struggling now, I hope so. I am fully aware that Celiac can "morph" into something more serious in the years to come. That is something that I rather expect. Guess, I'll take one day at a time.

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