Confused W ?'s About Diet

[brice1401]

This is my first posting but I have been reading others all day. I've been trying to eat gluten free for over a year. I don't really know how successful I have been because my symptoms were so mild. The mouth sores were frequent but have been gone for many months. The skin sores were infrequent and have been gone for many months. The occasional cramps have become more infrequent. After reading many, many postings today, I realized that I have had loose stool for many years and they continue today.

I have learned to read labels but I'm chicken when dining out and too often make assumptions. One of my biggest fears is that all the time, money and anquish I have spent over the last year is for nothing because I was cross contaminated three times in twelve months. Cross contamination is hard for me to accept. Am I safe to assume I can order scrambled eggs at any restaurant or must I ALWAYS ask cross contamination questions?

Other questions . . .

Is the level of discomfort directly related to how much gluten is consumed?

If I can live with the mild discomforts that an occasional cross contamination might cause, am I still doomed to develop some terminal illness and shorten my life expectancy considerably?

Can someone show only mild symtoms but still be doing great damage to your GI system?

Thank you in advance for your support and your advice!

Brian

[ravenwoodglass]

  Am I safe to assume I can order scrambled eggs at any restaurant or must I ALWAYS ask cross contamination questions?

    No, always ask them to cook them in a seperate fry pan NOT on the griddle, I worked many years as a short order cook and as a head chef, contamination is a real issue with a griddle, french toast pancakes etc. The cook will scrape the grill but getting it absolutely clean is impossible in an open restaurant.

Other questions . . .

Is the level of discomfort directly related to how much gluten is consumed?

    Not for many. In my families experience we get an nasty reaction just from a crumb, do we dare to cheat with a 'real food' item like a doughnut, not for a million dollars.

If I can live with the mild discomforts that an occasional cross contamination might cause, am I still doomed to develop some terminal illness and shorten my life expectancy considerably?

    Good chance of it. Again, not worth the risk.

Can someone show only mild symtoms but still be doing great damage to your GI system?

    Someone can be showing NO symptoms and still do great damamge. Silent celiacs are sometimes diagnosed during autopsy for colon cancer.

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[cornbread]

Hi Brian,

Please, definitely ALWAYS ask questions when dining out - I get severe symptoms (so I know for sure when I've eated gluten), and when I used to dine out right after going gluten-free I would just pick what I thought to be 'safe' options on the menu, and about 50% of the time I would get contaminated, either through a hidden ingredient or just kitchen cross-contamination. If they don't know about your needs, they may well just pick the croutons off your salad when you ask for it without, or flour the grill to heat up your corn tortilla, etc.

So now when I eat out I am very thorough with the waitstaff / management about my needs, and if I'm not confident they are paying attention or fully understand how serious it is, I don't eat there. I know it's a pain to have to have The Talk every time before ordering, but after a while it becomes second nature and most of the time the staff are polite and attentive, and sometimes they actually have heard of Celiac / gluten intolerance and go the extra mile to make sure my food is safe and make me feel comfortable, ie: suggest alternative ways of cooking the food to make it safe, run to the kitchen to ask the chef about the ingredients in a sauce, etc. Sometimes of course they will say "You're what??", in which case I repeat myself, s-l-o-w-e-r , and if they seem to still be having trouble grasping it, we leave. I have now established a dependable shortlist of restaurants in my town that I can eat at. But even at these regulars, I still go through the gluten schpeal before I order. You can never be too careful.

Re: the occasional contamination... It happens to us all, unfortunately. I cut down my contamination episodes from about once every two weeks (when I was frequently eating out and still getting to grips with the diet) to only once in the last 2 months, since I started preparing all my meals at home. That one incident at home came from licking an envelope! D'oh! I knew that they sometimes make the glue from wheat, I just forgot until my tongue was already on the thing!

As for your question about how often can one be 'glutened' and be safe - I'm actually not sure. Maybe someone like KaitiUSA could answer this for us? I know that every little bit of gluten hurts, but I would assume that getting a microscopic dose every month or so is better than eating it for 3 meals a day. I think it would slow down the healing, but I think once the gut has healed, the occasional glutening would do a small amount of damage and hopefully there would be time for that damage to heal before the next gluten incident. Hopefully one of the wiser birds can fill us in.

Anyway, good luck with it all!

[Claire]

Hi Brian,

As for your question about how often can one be 'glutened' and be safe - I'm actually not sure.  Maybe someone like KaitiUSA could answer this for us?  I know that every little bit of gluten hurts, but I would assume that getting a microscopic dose every month or so is better than eating it for 3 meals a day.  I think it would slow down the healing, but I think once the gut has healed, the occasional glutening would do a small amount of damage and hopefully there would be time for that damage to heal before the next gluten incident.      Hopefully one of the wiser birds can fill us in. 

Anyway, good luck with it all!

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Oops. Here I am again to groan over any indication that a small amount of gluten may slow down progress but only do "a small amount of damage". The example a neurologist gave me will be offered here yet again. A grain of gluten put into a petri dish with a drop of blood from a celiac patient will initiate an almost immediate reaction that can be sustained in the sample for days - even weeks. You do not know what body cells are being affected when you ingest gluten - eyes, ears, muscle, brain - take you choice. The neurological damage done by gluten is proven and very scary. I went on a gluten restricted diet 15 years ago. I did not know that gluten was an issue. The issue was only identified as grains. So I stopped eating bread and flour saturated foods but that was the limit of restrictions. I eliminated enough to relieve the symptoms - not enough to eliminate the neuro damage that is now affecting my life. Gluten is neurotoxic. Accidents may happen but otherwise, in the interest of your future health, go gluten-free all the way. Claire

[Jnkmnky]

I ask them to prepare the scrambled eggs for my son in a separate frying pan. If that can't be done, I ask them for three hard boiled eggs. I ask them to microwave the bacon if it heated or warmed on the grill next to things like pancakes. Everyone is very understanding. I never have any trouble with any restaurant or wait person. Just be nice...not apologetic. No one should apologize for having a disease.

[cornbread]

Oops. Here I am again to groan over any indication that a small amount of gluten may slow down progress but only do "a small amount of damage". The example a neurologist gave me will be offered here yet again.  A grain of gluten put into a petri dish with a drop of blood from a celiac patient will initiate an almost immediate reaction that can be sustained in the sample for days - even weeks.  You do not know what body cells are being affected when you ingest gluten - eyes, ears, muscle, brain - take you choice.  The neurological damage done by gluten is proven and very scary. I went on a gluten restricted diet 15 years ago. I did not know that gluten was an issue. The issue was only identified as grains. So I stopped eating bread and flour saturated foods but that was the limit of restrictions. I eliminated enough to relieve the symptoms - not enough to eliminate the neuro damage that is now affecting my life.  Gluten is neurotoxic. Accidents may happen but otherwise, in the interest of your future health, go gluten-free all the way.  Claire

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Thanks Claire - this is the kind of info I was looking for. The theoretical question now is, if we can not guarantee that we will be 100% gluten free 365 days a year (I shoot for just that but with cross-contamination accidents will probably only manage maybe 360), should we just go ahead and eat it everyday anyway? (obviously not - it's a theoretical question!) I certinaly wouldn't want to as it makes me feel terrible, but for those who have only minor (or no) present symptoms, it must be difficult to stick to the diet if they're told that one tiny slip up renders the rest of their efforts useless. What should we do?

[Guest katzmeow21]

Thanks Claire - this is the kind of info I was looking for.  The theoretical question now is, if we can not guarantee that we will be 100% gluten free 365 days a year (I shoot for just that but with cross-contamination accidents will probably only manage maybe 360), should we just go ahead and eat it everyday anyway? (obviously not - it's a theoretical question!)  I certinaly wouldn't want to as it makes me feel terrible, but for those who have only minor (or no) present symptoms, it must be difficult to stick to the diet if they're told that one tiny slip up renders the rest of their efforts useless.  What should we do?

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Hi there.

Well just tonight I received in my email a newsletter from "Thompson Clan"

These are the people who put out celiac newsletter and guides for everything from restaurant choices in US to gluten free food lists etc.

Someone asked one of their doctors who is very knowledgable when it comes to celiac and she/he says.....

Dear Dr. Fasano, I want to thank you for your interest in celiac disease and for

your help to those of us who are trying to make this less of a "disease" and

more of a lifestyle choice. With so few physicians who are knowledgeable about

celiac, we really appreciate the ones who are. I am wondering, after a

diagnosed celiac has been on a gluten-free diet and their antibody levels have

returned to normal, what happens to their intestinal tract if they accidentally

consume gluten (contaminant or "hidden ingredient") compared to a situation

where they knowingly decide to "totally blow it" and eat one of their old

favorite gluten containing foods. I'm wondering about the extent of damage and

the difference between a small exposure and a large one. Does the entire small

intestine become involved or would it just affect a few areas? Thanks so much,

(Vicki)

Dear Vicky, There are not enough large controlled studies to properly answer

your question. However, the general wisdom is that accidental exposure to

traces of gluten does not translate to intestinal damage. Conversely, continuous

exposure to traces of gluten (as it occurs with cross contamination) will cause

an intestinal damage comparable to who decides to remain on an unrestricted

diet.

(hope this helps)

[aikiducky]

Maybe it might make sense to have a follow-up biopsy after a couple years to see if damage has healed, for someone with mild to no symptoms to go by.

Pauliina

[Rachel--24]

Even if trace amounts didn't cause significant damage seen in the biopsy....wouldn't the trace amounts still be triggering an immune response? Wouldnt that immune response be a strain on your immune system and as a result your body may not be as healthy as it could be?

[cornbread]

Katzmeow, thanks for that. Interesting read.

Even if trace amounts didn't cause significant damage seen in the biopsy....wouldn't the trace amounts still be triggering an immune response? Wouldnt that immune response be a strain on your immune system and as a result your body may not be as healthy as it could be?

<{POST_SNAPBACK}>

This makes sense. I know that even the tiniest amount of gluten (ie: licking an envelope) is too much for my body because it tells me so. However, it would be nice to think that after the immune response has died down (about 5 days later in my case), then I am pretty much back to how I was before the gluten accident. It's horrifying to think that each gluten accident could be damaging us for weeks or months after the fact, because chances are by that point we've probably been contaminated again, so in essence the damage would never stop.

Also, I'm not of the belief that intestinal damage is the be all and end all of celiac. We know that there is plenty of damage gluten can do that doesn't go anywhere near the intestines. Ok so we might not give ourselves stomach cancer, but what about all the non-GI gluten related diseases? I'm guessing every bit of gluten we consume goes towards making these things more likely, and it all adds up over time - the best thing we can do is avoid it as much as humanly possible and hope we beat the clock.

Goodness, I think I've terrified myself!

[brice1401]

Thanks so much to everyone that responded. It is comforting to know there is somewhere I can go for answers and support. My wife is very supportive but we are both so much in the dark.

Brian