I'm So Confused

[JustMe75]

Ok, I know I shouldn't have done it but I have not cheated once in 6 months and I really really wanted real pizza. Its been 2 hours and I am not sick. I always got sick in around 30 minutes before the diet and in the first few months of trying the diet when I accidentaly ate something I shouldn't have. Was I wrong? Pizza was the one thing that always made me sick before. I was not diagnosed celiac. My blood tests were negative and the dr refused to do a biopsy but I have not had D (except for those mistakes) since October. Between that and I have double DQ2 I figured I probably had it or would get it so I quit eating gluten.

So what gives? Could it be a coincidence that I felt better all those months? I have read that after some time goes by and the stomach is healed it takes time to have symptoms again but isn't that like after years??

[itchygirl]

When I did the gluten death match, I mean gluten challenge (yep, I've been through the whole wringer of diagnostics ) it took me three weeks to get really sick again after being off the crap for months.

Man I wish I had not done that. I don't think that did my health any good.

[Ursa Major]

I've done the same thing, didn't get sick and doubted. But boy, two days later the D hit with a vengeance, and lasted for days, along with feeling out of sorts for two weeks.

After your villi heal the reaction can take a while, or might not even happen the first time you cheat. But make no mistake about it, the damage will be done, reaction or not.

It depends on what I get glutened with, my reactions can take from 20 minutes to nearly a week to hit me. But it always comes sooner or later.

Please don't do it again, even if this time you don't even get a delayed reaction (which might still hit you). It will catch up with you eventually. You don't want to undo all the good you have done with being on the gluten-free diet all these months!

[MELINE]

same with me...I kept eating bread (i thought it was a gluten-free one) for 3 days and then on the 4 day i started feeling seek and headache and eczema and exhausted....but I know it doesn't matter if you have a reaction or not. the damage is done. pizza......? Oh my god!!! I hope at least you enjoyed it!

[JustMe75]

Well thank you for your replies. I kinda figured I just got lucky, but it sure made me doubt the necessity of the diet. My stomach did start to hurt, but barely.

Yes.... pizza I LOVE pizza! And it was good. But I won't do it again. Although it will be harder for me now since the thing that made sticking to the diet easy was the fear of getting sick. I know this sounds dumb but I think I would cheat more if the only thing that would happen was silent damage without feeling sick. I don't know how those people without symptoms but with a celiac diagnosis do it. I have no willpower!

[VioletBlue]

Most likely those people without symptoms manage to do it because they want to live to see their children grow up, grow old with their spouses or simple live to see sixty without facing a debilitating cancer diagnosis. That would be my guess.

Well thank you for your replies. I kinda figured I just got lucky, but it sure made me doubt the necessity of the diet. My stomach did start to hurt, but barely.

Yes.... pizza I LOVE pizza! And it was good. But I won't do it again. Although it will be harder for me now since the thing that made sticking to the diet easy was the fear of getting sick. I know this sounds dumb but I think I would cheat more if the only thing that would happen was silent damage without feeling sick. I don't know how those people without symptoms but with a celiac diagnosis do it. I have no willpower!

[itchygirl]

Or, in my case, suffer the agony of acute pancreatitis yet again. My friend Terry recently died of acute pancreatitis, went in the hospital just after midnight and was dead before noon.

Chronic pancreatitis can develop silently, then one acute attack and you're gone. Not that I'm trying to scare you or anything

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[gfp]

OK, we had scare tactics, sarcasm and more ... so I'll roll it all into one (no malice meant)

If you cross the road without looking one time does that make it OK?

However mainly, as Ursa said ... these reactions can take time from a hour to a week ...

I personally find no correlation with what I get glutened or nor how much ...

One thing I wil say though is I haven't seen any evidence that a whole pizza does more damage than some CC (perhaps it does, I just can't find it)

As for eating the Pizza ?

Well many people here take risks ... the pizza is a sure thing but plenty of people eat out or buy pre-prepared food. Any-time you eat out is a risk, obviously some pleaces more than others. So if someone eats out once a month and gets glutened say 10% of the time then is this worse than eating a pizza once a year?

Some will argue that deliberatly doing it isn't the same as taking a risk but really it is. If the chance is 1:10 and you do it once a month for a year then its pretty much as certainty as eating the pizza.

Plenty will preach about not deliberatly eating gluten then eat McDo's fries which categorically contain gluten ... not to mention a huge risk of CC.

Eitherway, I hope it was worth it

[JustMe75]

Thank you for understanding gfp. Like I said I don't have a diagnosis so I don't know that eating the pizza did any damage to me. I am choosing to be on the diet against what doctors and tests are tellng me. I guess I shouldn't have said I would cheat if I had a diagnosis but no symptoms because I don't think I would. Of course I would want to be around for my kids and my husband. What I really meant was it is easier not to eat something when there is an obvious adverse reaction.

[Ursa Major]

Thank you for understanding gfp. Like I said I don't have a diagnosis so I don't know that eating the pizza did any damage to me. I am choosing to be on the diet against what doctors and tests are tellng me. I guess I shouldn't have said I would cheat if I had a diagnosis but no symptoms because I don't think I would. Of course I would want to be around for my kids and my husband. What I really meant was it is easier not to eat something when there is an obvious adverse reaction.

I do understand what you are saying. I know that I will end up with severe stomach and bowel cramps and D either within minutes, hours and sometimes days. I never know when it will come, but it always does.

When I remember the last time I sat on the toilet for hours, moaning in pain, that sure stops me when I get tempted! It is so bad I want to die. It is totally NEVER worth it to be glutening myself on purpose, ever.

I am not absolutely sure I wouldn't be tempted to cheat once in a while if I had no reaction. Especially because I am self diagnosed and have never had absolute proof of damage (even though I know I must have had severe malabsorption, because of vitamin deficiencies).

Still, I am positive that my mother must have had celiac disease, and she died of liver cancer when she was 66, and her mother died of stomach cancer when my mother was 20. I'd rather not share their fate!

So, knowing that I would likely end up like my mother (who had all the same symptoms as me, plus getting more insane all the time) is a deterrent as well.

[gfp]

Thank you for understanding gfp. Like I said I don't have a diagnosis so I don't know that eating the pizza did any damage to me. I am choosing to be on the diet against what doctors and tests are tellng me. I guess I shouldn't have said I would cheat if I had a diagnosis but no symptoms because I don't think I would. Of course I would want to be around for my kids and my husband. What I really meant was it is easier not to eat something when there is an obvious adverse reaction.

It might be easier with an obvious reaction but like Ursa say's it comes eventually ..

The big reason for me is that when I was diagnosed I had done somuch damage it took a long time to even feel half normal (and I'd half forgotten what half normal was)

The odd mistake and you take a step back but keep going anf you end up taking 2 steps back for every 3 steps forwards as the damage is worse..(and the body can't repair because its not getting the nutrients). not only that you face doing irrepairable damage.

I always got sick in around 30 minutes before the diet and in the first few months of trying the diet when I accidentaly ate something I shouldn't have. Was I wrong? Pizza was the one thing that always made me sick before.

This is where you stand to put yourself back to ...

Try thinking how far you have come... instead of thinking about the one off think about how you were as a whole..

[ellen123]

OK, we had scare tactics, sarcasm and more ... so I'll roll it all into one (no malice meant)

If you cross the road without looking one time does that make it OK?

However mainly, as Ursa said ... these reactions can take time from a hour to a week ...

I personally find no correlation with what I get glutened or nor how much ...

One thing I wil say though is I haven't seen any evidence that a whole pizza does more damage than some CC (perhaps it does, I just can't find it)

As for eating the Pizza ?

Well many people here take risks ... the pizza is a sure thing but plenty of people eat out or buy pre-prepared food. Any-time you eat out is a risk, obviously some pleaces more than others. So if someone eats out once a month and gets glutened say 10% of the time then is this worse than eating a pizza once a year?

Some will argue that deliberatly doing it isn't the same as taking a risk but really it is. If the chance is 1:10 and you do it once a month for a year then its pretty much as certainty as eating the pizza.

Plenty will preach about not deliberatly eating gluten then eat McDo's fries which categorically contain gluten ... not to mention a huge risk of CC.

Eitherway, I hope it was worth it

This comment really encapsulated what I've been thinking this week, and it's brought me full circle: GFP, you've made me realize I've been way to cocky about this issue of risk-taking. I'm relatively new to this and was so happy with my initial improvement, I think I just got over-confident. I've been doing great, gotten my family on board, etc.--but also, for the last week, I've been taking more risks, grabbing a Starbucks latte one afternoon, going out to eat twice later in the week, etc. I've even gone so far as to preach to other newbies that this isn't so hard, that it's not as bad as they think, that this is easy to do if you know what you're doing, etc. But now reality is setting in. After the latte, my neck and head started hurting; after the 2 meals out, my neck and head are feeling worse, and it's been a few days now. Even though I was "so careful" about what I ate, the simple act of getting food out was risky, you're right.

So to those of you to whom I've preached: I'm sorry, I was too proud! In my own defense, my motives were good. I wanted to encourage you to stick with this and not give up. But the comments of GFP and the others here are wiser than anything I've said elsewhere -- it does take constant attention and care not to get accidentally sickened, and risky behavior is just as bad as intentionally eating gluten (even pizza!)

Ellen

[Wonka]

Still, I am positive that my mother must have had celiac disease, and she died of liver cancer when she was 66, and her mother died of stomach cancer when my mother was 20. I'd rather not share their fate!

So, knowing that I would likely end up like my mother (who had all the same symptoms as me, plus getting more insane all the time) is a deterrent as well.

I have not been officially diagnosed either. My mother and grandmother always had GI issues (constipation rather than diarrhea - just like me). My mom has osteoporosis (she was diagnosed years ago and is only 67 - I'm 50) and her mother died at 53 of colon cancer. I'm just not willing to take the chance. I know that I react to gluten and there are so many wonderful foods out there that I'm happy to eliminate it from my diet if it means being around to watch my children grow up.

[gfp]

This comment really encapsulated what I've been thinking this week, and it's brought me full circle: GFP, you've made me realize I've been way to cocky about this issue of risk-taking. I'm relatively new to this and was so happy with my initial improvement, I think I just got over-confident. I've been doing great, gotten my family on board, etc.--but also, for the last week, I've been taking more risks, grabbing a Starbucks latte one afternoon, going out to eat twice later in the week, etc. I've even gone so far as to preach to other newbies that this isn't so hard, that it's not as bad as they think, that this is easy to do if you know what you're doing, etc. But now reality is setting in. After the latte, my neck and head started hurting; after the 2 meals out, my neck and head are feeling worse, and it's been a few days now. Even though I was "so careful" about what I ate, the simple act of getting food out was risky, you're right.

So to those of you to whom I've preached: I'm sorry, I was too proud! In my own defense, my motives were good. I wanted to encourage you to stick with this and not give up. But the comments of GFP and the others here are wiser than anything I've said elsewhere -- it does take constant attention and care not to get accidentally sickened, and risky behavior is just as bad as intentionally eating gluten (even pizza!)

Ellen

Ellen, a little pride is not such a bad thing, specially if it helps us to keep focused ... however when it gets to the point you get coky with yourself then its lost that value (in my humble opinion)

Its all to easy to con ourselves and .... well I found out like you... I'm flattered by your comment but it wouldn't be honest of me not to point out I did just as you have done

This is why my sig is what it is ... mankind will willingly believe what mankind wishes to believe ...

So my view now is quite simple, its just stats... and yep stats can suck but they can also be objective ...

Unfortunately the gluten damage equation has too many unknowns to be easily solved but it raises a lot of questions...

My personal belief (backed up by plenty of fact but also conjecture) is that frequent glutening is worse than occaisional...

What we know is it causes an immune response .. our body works overtime stressing the thyroid and gut... (even if you have no symptoms outwards) we also know anti-body production carries on for quite a while after the gluten is expelled and that it can take a day or soto get expelled...

Equally our villi become incrementally damaged ... if we then eat more gluten before they are repaired they just do the 3 steps forwards and 2 back ... worse as they become damaged our ability to absorb nutrients becomes worse and worse and hence our bodies resources to self-repair become worse.

The way I see it if I gluten myself once a week I'm continually stressing my body. Villi are damaged and don't get the chance to heal... and the very process of healing is what causes cancer (again stats, every tome a cell divides we risk it niot doing so correctly and this carries the risk of cancer)

How about once a month ?? I honestly don't know .... I can say from exprience once a week and you're on a downwards spiral... once a month??? and once a year... well I think this is plently of time to recover...

However I don't KNOW... and it might be once in 2 months does no real damage or once in 6 months...

On another side I don't find the amount of gluten makes any difference ... or if it does its minor and masked by other factors... One huge factor is ... already being glutened... and general health, sleep.. you name it...

So sometimes (and I mean sometimes like once or twice a year max) if I get accidentally glutened I might go the rest of the day glutened .. I can't say its not bad BUT I suspect its no worse and probably not so harmful as getting glutened once or twice a month... I usually only do this on vacation when I'm forced to eat out....

So what works for me is minimising risk.... fast food is way at the top ... its the way its prepared and the fact its usually done 'fast' ... if I'm doing really well I might risk a meal with friends where I know the chef or owner... even this can cause slips... if that happens I get super strict... like no coffee's out etc. because I know if I get glutened again it will knock me harder ...