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Is It Cheating If You've Already Been Glutened?

Silliest of Yaks

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Silliest of Yaks Rookie
Silliest of Yaks
Posted

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
ShayFL
Posted

Yes.

YoloGx Rookie
YoloGx
Posted
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
roxie
Posted

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
sansglutengrl
Posted

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
HAK1031
Posted

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
psawyer
Posted

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
Jestgar
Posted
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
RiceGuy
Posted

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
wckdsxyceliac
Posted

(Greens and Redbridge as I recall),

Don't forget Bard

wckdsxyceliac Newbie
wckdsxyceliac
Posted
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
ShayFL
Posted

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
Silliest of Yaks
Posted
  • Author

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
Green Eyes
Posted

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
luciddream928
Posted
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
luciddream928
Posted
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
happygirl
Posted
Open Original Shared Link
luciddream928 Explorer
luciddream928
Posted
Open Original Shared Link

Thank you, this is a great resource!

YoloGx Rookie
YoloGx
Posted
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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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