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Is It Cheating If You've Already Been Glutened?


Silliest of Yaks

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Silliest of Yaks Rookie

Hi everyone! I'm on my 4th month of Celiac Dx and gluten-free, and new to the boards.

I'm writing because I had my first obvious gluten "accident" about a month ago - I found cruton crumbs in my salad at a pizza place, and it really got me thinking. The thing is, I felt HORRID the next day (digestive issues, killer headache, and really agitated), every bit as bad as when I had eaten pizza and/or beer before my diagnosis. The next day I grumbled, "I may as well have eaten the pizza." But then I started to wonder about that... and I've been craving Guinness for 4 months...

Once the immune system is fired up, does quantity make much difference? I ate much more gluteny things on a regular basis before my diagnosis, and didn't always feel as bad as that day! No matter how hard I try, I'm bound to have another gluten accident at some point in my life, and I'm tempted to treat it as an opportunity.

I'm guessing there are probably good reasons not to do this, but the temptation is there. Veterans, please help me learn from your wisdom!


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ShayFL Enthusiast

Yes.

YoloGx Rookie
Hi everyone! I'm on my 4th month of Celiac Dx and gluten-free, and had my first obvious gluten "accident" about a month ago - I found cruton crumbs in my salad at a pizza place. The thing is, I felt HORRID the next day (digestive issues, killer headache, and really agitated), every bit as bad as when I had eaten pizza and/or beer before my diagnosis! The next day I grumbled, "I may as well have eaten the pizza." But then I started to wonder about that... and I've been craving Guinness for 4 months...

Once the immune system is fired up, does quantity make much difference? I ate much more gluteny things on a regular basis before my diagnosis, and didn't always feel as bad as that day! No matter how hard I try, I'm bound to have another gluten accident at some point in my life, and I'm tempted to treat it as an opportunity.

I'm guessing there are probably good reasons not to do this, but the temptation is there. Veterans, please help me learn from your wisdom!

You are right, there are several good reasons to stick with your diet. It is not only likely if you go off of your diet not only will you overall feel worse (achy body, easily get ill, possible D or C more frequently etc.) -- but then you can also greatly increase your chances of getting cancer, cataracts, dementia, nerve problems and other degenerative illnesses not to speak of other auto immune problems like RA, Lupus etc.

So, if you truly have celiac (which your response to such a very small amount of gluten indicates you really do) do yourself a favor and stick with your diet and avoid trace glutens as well (like in shampoo, lotions, vitamins etc.). It takes a while but you can adjust. Plus there are beers out there that are gluten free (Greens and Redbridge as I recall), ditto with pizza etc. and more places you can safely go out and dine that have gluten-free menus like Outback and PF Chang's.

Bea

roxie Contributor

I think about this all the time as well. I read that your body has the same reaction to gluten if you eat just one crumb of bread, or a whole piece of bread. Can this be true??

sansglutengrl Explorer

This is a really good question....

I know when I get glutened the thing I crave the most is like really starchy things (I assume to soak up the stomach acid or something).... So if I get glutened at a restaurant one night, and I already know I'm going to be sick - can I eat a croissant the next day?? :)

Would you really absorb any of the gluten if you're having the big D non-stop??

HAK1031 Enthusiast

um, i don't know about you guys, but when I'm curled up on the bathroom floor, the last thing I want is more wheat... that's the one moment when it's LEAST tempting for me. And what I remember if I'm ever a teeny bit tempted...

It's a bad idea. There is absolutely no need to further trigger your immune system. It will prolong your reaction, and take much longer for your body to get back to normal.

psawyer Proficient

I believe that the magnitude of the immune response is proportional to the amount of gluten ingested. So, no, I would definitely not consider any extra gluten to be "free." It seems that there is a minimal level below which the autoimmune response is not triggered, but once the trigger level has been hit, additional gluten magnifies the response. I have no scientific research to back this up, only my own anecdotal evidence, so take it with a grain of salt.


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Jestgar Rising Star
I think about this all the time as well. I read that your body has the same reaction to gluten if you eat just one crumb of bread, or a whole piece of bread. Can this be true??

Does a sip of coke taste the same as a liter of coke? Does your body have the same reaction to a sip vs a liter? Yes, but the degree to which it affects you is very different.

RiceGuy Collaborator

As was already stated, it's not just how you feel after getting glutened. There is the damage it causes. And the more gluten you ingest, the more damage is done, irregardless of how you feel.

wckdsxyceliac Newbie

(Greens and Redbridge as I recall),

Don't forget Bard

wckdsxyceliac Newbie
I think about this all the time as well. I read that your body has the same reaction to gluten if you eat just one crumb of bread, or a whole piece of bread. Can this be true??

This is what the GI Dr told me too.

I asked the Dr if I was good for say 2months and got one meal that was really glutenized would that be OK. He freakin flipped out on me and proceeded to give me the lecture of the 80% increase chance of cancer..... yadah, yadah, yadah.

OK so we won't do that. Could've just told me a stirn NO.

LOL

Wckdsxyceliac

ShayFL Enthusiast

And dont forget the "addictive" properties of gluten. It's metabolites fit nicely into our opiate receptors in our brains. Eat a ton of it and there will be a price to pay. You will want more even though it kills you. Just like I here talking.....If I already got a bread crumb....might as well eat a croissant. That is just your addictive brain talking there.

Next thing you know, you will be frequenting restaurants where you know there is a good chance of CC just so you can have a donut for breakfast. Im not making fun in here. This is how addictive chemicals work. It is science.

I myself have an addictive brain chemistry. I can thank my Dad for that (alcoholic). My drug of choice was food. I am a recovered bulimic. The VERY conversations I see in here are EXACTLY the kind of conversations I had in my own head when I was actively binging. It is a dangerous thing to entertain.......if you are Celiac. My favorite binge foods were pizza and donuts. Both VERY HIGH in GLUTEN!! And sugar. Both addictive chemicals.

Best to nip it in the bud and recognize it for what it is. If you accidentally (and I mean really accidentally) get some gluten, call your sponsor.........DONT go on a gluten binge!

Silliest of Yaks Rookie

Thanks so much for all the feedback so far!!

Just to clarify, I'm talking strictly about immediately afterward, not the next day or going on a short streak of old eating habits. When you have a rare "oh crap this thing I'm eating RIGHT NOW wasn't safe" moment. Is it any better to stop at that very moment, or is it just too late and quantity won't make much difference? As Roxie said, and I seem to have experienced, the body seems to have the same reaction when I have a bread crumb or whole slice of bread.

And it just seems so unfair that I did damage and didn't even enjoy my food :(

All the same, I got my blood levels checked about 2.5 weeks after this incident, and my antibodies were down to normal non-celiac range, indicating that I'd been doing well with the diet despite my blip. If I had had more gluten that night, would there have been a longer term effect - could those numbers be different? Does anyone know?

Green Eyes Rookie

The answer to your question: Yes, the more gluten you ingest the more damage you are doing to your insides. You may feel the same (with a little gluten vs a lot of gluten) but the damage can be much more extensive.

Threat yourself like an alcoholic!!! You are celiac - any amount of gluten you have is to much. If you accidentially get a "trace" of gluten - be thankful that was all you got and leave the rest alone.

I am right there with you - I have been tempted. But my "right" thoughts "have" to win out. Find a food that is a prize for you. When you have done well over a period of time - then that is your treat. The only rule - it has to be gluten free!!!!

Outback has this awesome gluten free brownie dessert with vanilla ice cream and chocolate sauce!!! It is to die for!!! Since I don't eat out much, when I do - that is my treat!!!

Jennifer

luciddream928 Explorer
The answer to your question: Yes, the more gluten you ingest the more damage you are doing to your insides. You may feel the same (with a little gluten vs a lot of gluten) but the damage can be much more extensive.

Threat yourself like an alcoholic!!! You are celiac - any amount of gluten you have is to much.

Jennifer

This is such a great thread, all questions I've been asking myself. I'm not celiac but I have double DQ1 genes, DQ5 and DQ7 which I've been told make up one celiac gene. For all us "non-celiac" but gluten sensitive people, does this information still apply? Does gluten still do damage to our insides and put us at risk for other illnesses even without the DQ2 genes?

Despite my reading and posting, I'm still unclear where NCGS ends and celiac disease begins....

luciddream928 Explorer
The answer to your question: Yes, the more gluten you ingest the more damage you are doing to your insides. You may feel the same (with a little gluten vs a lot of gluten) but the damage can be much more extensive.

Threat yourself like an alcoholic!!! You are celiac - any amount of gluten you have is to much.

Jennifer

This is such a great thread, all questions I've been asking myself. I'm not celiac but I have double DQ1 genes, DQ5 and DQ7 which I've been told make up one celiac gene. For all us "non-celiac" but gluten sensitive people, does this information still apply? Does gluten still do damage to our insides and put us at risk for other illnesses even without the DQ2 genes?

Despite my reading and posting, I'm still unclear where NCGS ends and celiac disease begins....

happygirl Collaborator
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luciddream928 Explorer
Open Original Shared Link

Thank you, this is a great resource!

YoloGx Rookie
This is such a great thread, all questions I've been asking myself. I'm not celiac but I have double DQ1 genes, DQ5 and DQ7 which I've been told make up one celiac gene. For all us "non-celiac" but gluten sensitive people, does this information still apply? Does gluten still do damage to our insides and put us at risk for other illnesses even without the DQ2 genes?

Despite my reading and posting, I'm still unclear where NCGS ends and celiac disease begins....

That's a good question. My belief however is that you have more lattitude and don't have to avoid CC so much for instance and could possibly cheat once in a blue moon and be OK since for you its not an auto immune problem. However, there is also the question of whether or not you truly have celiac or not since tests aren't always accurate. If perchance you have avoided all gluten and then get a crumb and have a huge reaction its very likely you do have celiac.

Bea

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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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