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Magnus

What Are The True Risks Of Eating Gluten?

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I emailed this to: mmmm gluten and now I want the rest of you to see what I told him:

Sometimes I dont understand we celiacs--we are a very sensitive bunch--some of us have been sick for so long and we get defensive when we feel we are being attacked--as I read some of your posts, I wonder if you just have a dry sense of humor that the others didnt get---I will tell you this--Kaiti and celiac3270 are very good kids--both of them and celiac3270 has been very sick as was Kaiti----I was sick for years and years--all through the years my kids were growing up--celiac3270 miss spoke when he said 7 yrs--the average diagnosis time in the USA is 11 yrs and that sucks--by the time I found out it was celiacs--I had suffered years of panic attacks, because of the vitamin deficiencies--i developed neuropathy and now have so many problems because of it---be thankful you havent been as sick as some and please, do stick to the gluten free lifestyle---Deb

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i'd like to go back to the original topic for a sec...

i asked this question in another thread a while back and never got an answer: if every crumb does damage, etc. does that mean if you're young and have celiac you will ultimately suffer the consequences as though had eaten gluten ? inevitably we all accidentally consume gluten. i eat out on average once a month (unless i'm on vacation!) so that's always a risk (even with explaining etc. i've still gotten sick a few times)

and just on your average day, who knows how many little crumbs you get off a desk at school or the workplace etc. or you use a soap in a pub bathroom that has gluten etc.

inevitably over time these little things will add up .. and the younger you are, the more time that is for them to add up.

i used to think that occassionally getting gluten in me (through cross-contamination or mislabeling of food etc.) was no big deal until i read this board ! any help with this question would be great!

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In response to mmmm gluten... I know how you feel. I don't experience too many symptoms myself except for an occasional upset which could be from anything. I think in our position it is hard to relate to those who experience serious symptoms. I think you do what makes you feel comfortable. For example, I think not using gluten shampoos, conditioners etc is a bit extreme for me. I am not on kiss patrol either. I do watch what I eat and realize that occasionally I am going to slip up and that is ok. I can understand that they take this much more seriously than I do because they suffer greatly if they don't. Its like when you eat McDonald's all the time and you know it is bad for you but you still do until something happens like a heart attack or high blood pressure. Everybody is their own person and will do what is right for their bodies.

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In response to mmmm gluten... I know how you feel.  I don't experience too many symptoms myself except for an occasional upset which could be from anything.  I think in our position it is hard to relate to those who experience serious symptoms.  I think you do what makes you feel comfortable.  For example, I think not using gluten shampoos, conditioners etc is a bit extreme for me.  I am not on kiss patrol either.  I do watch what I eat and realize that occasionally I am going to slip up and that is ok.  I can understand that they take this much more seriously than I do because they suffer greatly if they don't.  Its like when you eat McDonald's all the time and you know it is bad for you but you still do until something happens like a heart attack or high blood pressure.    Everybody is their own person and will do what is right for their bodies.

Yeah, I really feel bad for the extremely symptomatic people. When I screw up and eat gluten, it's not that big of a deal in the near term. I don't notice a change or may take an unexpected extra trip to the restroom that day - whoop de doo. However, I will undoubtedly pay for it on the tail end when the damage catches up to me. However, the really symptomatic people pay twice. Once when they get "glutened" and feel like crud for a few days and again on the tail end from the cumulative damage.

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mmm..gluten,

That was a very insightful response :) Nice summary of how those of us without the immediate symptoms feel ;)

Thanks,

- Michelle :wub:

p.s. Please check out the post "Anyone Know Statistics?" (from the "Coping With - " Forum)

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Hmm.. I would love to see some of the statistics from the book itself, specifically sources and peer reviewed journal data. As anyone who deals with statistics regularly will tell you - "there are lies, damn lies, and statistics!" :)

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That's true. However, there are 27 pages of "Sources" which are all from medical journals. So I don't think he made too much of it up ;)

- Michelle :wub:

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That's true. However, there are 27 pages of "Sources" which are all from medical journals. So I don't think he made too much of it up ;)

- Michelle :wub:

But you know me...I have to be difficult. :)

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Guest BellyTimber

:)

For Marcus

Your (I think) questions were about 'gluten holidays' and eating out.

Yes it's an almost universal phenomenon to feel shy about eating out, for years and years. It varies with time though - at first I felt it would be simple, then I found it never worked right for me, now I suppose there must be some happy medium but I know I'll have to work at it.

'Gluten holidays' ... hmm ... just for me, I don't use the word cheating and prefer infringement or at a pinch non-compliance as they are more neutral and matter of fact. I posted in more depth about this last night (yesterday afternoon US time) on a different topic but within this section of the forum I think.

I think human beings are so amazingly varied. And words convey an amazing variation in degree and type of meaning. Motivation and consciousness vary immensely. Time awareness varies immensely.

Some people can translate head learning into action straight away. Others like me have to mess about for ages knowing we're not getting it right, and persevere somehow (however it doesn't look like it) till the two things coincide more and more.

There's the question of asymptomaticity - it may be with hindsight that there are things that weren't even thought to be symptoms.

I had tooth problems as a child, was emaciated and weak up to age 25 or 30 (at 50, am now flabby and weak!), have always had motor, communicating and sensory problems. I had mumps twice, and my appendix out.

I have less colds and they cure quicker, since going gluten-free.

Doctors have lost the entire records repeatedly, about every five years so they don't see any connection (doctors are behind generally, with immune, endocrine, digestion and nerve issues in the UK).

I think the progressive element in this condition can carry on even when the ill effects are in remission, hence in 10 years time hypothetically if we eat gluten the effect will be worse than if we ate it a few weeks in to gluten-free living.

As to the logistics of gluten-free living - I had a head start because several other illnesses in my 30s got my attention to nerve and digestion issues so I became aware of foods, labels and shops, that gave me several years to do my homework and research before the intestinal pain got acute. But I still bungle it! However, I know that I'm on the way and I have got lots of the pieces at my finger tips now, not least through this board and one other board.

I noticed an uncanny phenomenon personally - there was a lot of talk about wheat and gluten intolerances before my symptoms came to a head, I really think my innards heard it and said to themselves, "the cat's out of the bag now" and decided their symptoms could become frank.

I have greatly benefitted from the experience shared by people on this board mostly more forthright than I am and always with different views.

I'm glad you joined us, please keep coming back, we mostly have calmer days ;)

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Guest BellyTimber

B)

For mmm..gluten,

(good user name by the way, in my opinion, especially at the beginning stage you're at)

Funnily enough I now find wheat products incredibly sour tasting when I come across them - you called it "screw up" ! - lots call it cheating - I call it "bungling" or a word I got from a book by a young person who describes how he and his younger brothers tried to adopt the gluten-free diet, "infringement", or a word I heard at a conference, "non-compliance", I think these are all more neutral and matter of fact words than cheating but that's just my view.

I think you and I are very much alike. The main difference is that I am like a slow motion version of you.

Coming from a background of insufficient information we are both overwhelmed by the logistics and the future prospects. Is there a celiac support group near you?

I have a nice one but it only meets four times a year.

I was angry when I first came to this board about the disconnect between the blase attitudes I had come across from doctors and my national support group and the firmness I found both in a book by Karen Brody and on this forum here, but the regulars patiently talked me through many many issues.

We have to take the issues apart, and not have to be on the defensive, this is a safe place to do that. If you were tempted to think it was hypochondria but stopped short of actually thinking that, why "admit" it in those terms exactly? (wait till we knew you better?)

I read somewhere only yesterday there is a refugee camp where someone has arranged for gluten-free supplies to be given to those refugees that are remaining in poor health on the standard wheat supplies. That's only one camp though. Apparently in Western Sahara six per cent of the people is known to have celiac disease. In the UK a very up to date figure is 1 person in 80 but that has got to be multiplied several times for equivalent conditions all told, because there is an immense underground of people who get nowhere with doctors. Drug firms aren't in on this because there's nothing to be in on. Special foods get marketted as being "only for sorry people that aren't like the rest of us" more often than as foods with interestingly different ingredients e.g a "rice, linseed, buckwheat and chestnut loaf" hence the demand is forecast on the low side.

I'm glad you're still coming back. There is a button here for a new topic as well as a reply. Sometimes it's very nice to add a new angle to someone's topic and other times it's nice to start a new one even if it's very similar to someone else's. I'm always getting this wrong.

Human beings are so amazingly varied. Words carry an amazing variation in degree and type of meaning. Motivation and consciousness vary immensely, as does sense of time.

I sense you are a go ahead and get on with it type of person (as am I, but in slow motion) - well there are many sections to the forum chock full of practical information gathered by our friends over the years, some of it with hyperlinks, even the signatures make excellent reading (except mine - due to hardware problems I can't update it). I sense you have been more overawed by the practicalities than you have been able to say, even if it was only for a fleeting moment ...

Firms launch gluten-free loaves, pies or whatever. They may or may not taste good.

There are ready mixed flours. There are flours you mix yourself. There is home baking in tins with kneading, or machines. There are foods we knew that were always gluten-free. There are foods we never knew that are gluten-free. There are things we need more of (like green veg for the minerals - especially if organic). There are ready made or catering meals which ought to be gluten-free (e.g rice dishes) and aren't - then occasionally one stumbles across one that has been kept gluten-free :P ! There are restaurants that understand and restaurants that don't. There are restaurants I'm not sure about and hope for the best, sometimes it works out, sometimes it doesn't. The last weeks I just force myself to cook, freeze, thaw. Sometimes the results turn out bad but I'm proud of myself for trying.

Like somebody else here (sorry I can't do search at the moment) I get complemented on the depth and breadth of the variety in my diet nowadays compared to before. I had a few months feeling fighting fit and am back to off-colour again.

The moral of the tale - mix and match. Explore, research. Get it right and get it wrong. Some of us found it becomes our sole preoccupation. But it's the way to get through, each in our own way.

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Guest nini

I just wanted to add my .02 cents...

after being sick all of my life and watching my daughter's health rapidly deteriorate, I am so thankful that 2 years ago I finally found a Dr. that knew what was wrong with me. And I was consequently able to help my daughter get healthy.

Living the gluten free lifestyle is not a choice. It is mandatory for those of us with Celiac. There is NO room for intentional cheating, but accidents do and WILL happen even with the best of intentions. We pick up and we move on.

I have made it a mission to find the best tasting foods and if I can't find a reasonable substitute, I find a way to make it myself. The people on this board have done a tremendous amount of research into finding the best foods so that we are not ever deprived of our favorites.

I know I get very defensive whenever I hear (or read) the word hypochondriac, because for years that is what the Dr's all told my mom what I was. I was labeled as psychologically unstable, a hypochondriac, and then as a teenager, severely depressed. As a new mother I was labeled with an anxiety disorder. Since I have been gluten free all of those labels no longer apply. I am not, nor ever was, any of those things. What I was, was that I was in pain, I was very sick, and no one believed me.

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Guest BellyTimber

:)

To Astyanax,

I think your question has been sort-of answered and I suppose it boils down to, if the quantities at a time are geuinely minute, the damage in the end may be little, but am prepared for anyone to correct me on that.

If you do your bit to go gluten-free as far as you are able, you are going gluten-free. Some people feel the slightest contamination acutely, some not at all, some a little or sometimes.

To Nini and Sue, well said. "Slip-ups", "accidents" ...

To mmm..gluten, take the issues one at a time ...

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I intentionally cheated yesterday and am paying for it today. I went to a wedding that had superb food, and I caved. The food was soooo amazing, but right after I ate I had diarrhea!!! This morning I woke up with swollen feet, lips, hands and belly. Not a good sign. :(

I had been gluten-free for 2 weeks....almost forgot how bad I felt before. I feel like a loser today and am wondering why I did this to myself.

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You're not a loser!!! You are just at the beginning stages and learning a valuable lesson......

That's the wonderful thing about human beings, we learn from our mistakes.... (usually, hopefully! :lol: )

Hope you feel better soon.

Karen

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Your not a loser. I had the same problem of caving into gluten containing foods at the beginning to. You will get better with it and as Karen said hopefully we learn from our mistakes.

Feel better soon :D

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Yes...many make mistakes or cheat in the beginning--cheating usually because they momentarily forget how bad it was before or because they're in denial. You cheated for the better reason; better because next time you want to, you'll remember this, whereas those who don't believe it will never accept that it's celiac. Don't be too hard on yourself--two weeks in you haven't healed too much yet--two years in it would have a stronger effect on your body.

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It is funny how quickly we forget. It is true what you are saying though....I'll definitely remember this episode! Does anyone else swell up when they are gluttoned? Even my lips are swollen!

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That almost sounds like an allergic reaction. Swelling usually happens with allergic reactions.

I can't say I've ever had swelling with gluten reactions. If I did it was not noticeable.

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Hmm...that is interesting...the allergic reaction. I think it may be the dairy. I had some icecream and I know that I am allergic to all dairy (scratch test). Maybe in addition to being celiac, I am also allergic to wheat. I know that my stomach is as big as a house when I eat gluten.

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Wow, I don't post for a couple of days and all heck breaks loose here!

Magnus and mmm...gluten you just have to realize a few things which I'm sure by now you have: some of the people here have been so sick for so long that so hear you trivialize their disease is troubling. That's all there is to it. If you want to be in denial over your celiac disease; I don't really care; people like you come and go from the board all of the time and always will. But be respectful of our positions. That's all we ask. Because there are people here who do care and it's sad to see good people get insulted just for caring.

I don't know what everyone is making such a fuss over, however. If you want to eat gluten, go for it. It's your life and your body and you can do what you please with it.

I was like you at first, too. I could eat gluten after being gluten-free for a month and just noticed some sensitivities, but nothing major. I have news for you, though, it gets worse. Now if I am accidentally glutened I am sick as a dog. It does get worse the longer you are gluten-free.

I personally don't cheat on this diet because I want to live a very long life . I have a lot to live for and if you've read the compliacations of celiac disease, it's pretty scary.

I had mainly stomach issues before going gluten-free, now I am getting neurological symptoms and I'm hoping and praying I can make it go away! I am 29 years old and was only diagnosed 6 months ago.

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Yeah, I really feel bad for the extremely symptomatic people.  When I screw up and eat gluten, it's not that big of a deal in the near term.  I don't notice a change or may take an unexpected extra trip to the restroom that day - whoop de doo.  However, I will undoubtedly pay for it on the tail end when the damage catches up to me.  However, the really symptomatic people pay twice.  Once when they get "glutened" and feel like crud for a few days and again on the tail end from the cumulative damage.

As jknnej mentioned, you really should keep in mind: You *will* become more sensitive as your gut heals. If you look at the mechanics of the condition, a Celiac who consumes gluten regularly has suffered extensive damage to the absorptive layer of the small intestine. The surface area drops by over a factor of 100. So, consequently, you absorb less gluten if you continue on an untreated track, and you have less of a response. Also, the destruction to the absorptive surface occurs MUCH more rapidly than the healing process. If you Glutenate yourself once a month, you are actually moving backward, not forward.

Now, when your gut starts healing, your absorptive area increases exponentially. So, you have a much easier time absorbing the poison. Hence, your reactions become quite pronoounced. I'd give yourself a few months of being totally gluten-free before writing yourself off as a "mild" celiac. You might be surprised.

Personally, when I was diagnosed 25 years ago, the ONLY symptom I expressed was a slow growth rate (and asthma, which we now know is linked, as are many other autoimmune disorders.) The testing protocol for the time was to do an inital biopsy, then go gluten-free for 1 month, have a second biopsy, then go back onto gluten for 2 weeks, followed by a third biopsy. Needless to say, after the first biopsy, we went to IHOP for breakfast; I had NO reaction, even after being gluten-free for a month.

Fast-forward 20 years, when I accidentally got a dose of gluten from a contaminated grill (so we're talking micrograms here,) I was so sick for the first two days, I had to go on a liquid diet, and felt like crap for the rest of the week.

-P

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