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Have You Ever Not Gotten Sick When You Know For Sure You've Been Glutened?


emcmaster

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emcmaster Collaborator

Is it possible?


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Lisa Mentor

Yup, I think that can happen. The longer you go gluten free, the more extensive the healing. In SOME people I think that the gluten needs to build up for a major reaction. In OTHERS, one crumb will do it.

Every one is different.

Ann1231 Enthusiast
Is it possible?

absolutely. I have to be extremely careful because I can eat gluten and not feel sick or anything. Other times I eat it and I have a really hard set-back. I know I was glutened last week when I ate out at one meal. I felt fine. Then this week I had gluten and have been suffering since. I sometimes have a hard time staying on my diet because I often don't get symptoms.

emcmaster Collaborator

What if you usually react to hidden gluten, like cc? It seems odd that I could react to a crumb or particle and not react when it was a major ingredient...

blueeyedmanda Community Regular

Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

Kassie Apprentice
Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

same here

rez Apprentice

Everyone is so different, I couldn't agree more. I've heard of a lot of people thinking they outgrew Celiac because they had no symptoms. My 8 year old was soooooooo sick and then we put him back on gluten for a challenge (after his tTG came back slightly positive after being gluten free for three months), and nothing happened. It took about a month to the day to start getting the reactions. Now he gets the tummy aches again and he has a mouth FULL of canker sores. It's still nothing like they used to be, although we found out he's lactose intolerant from a breath test. We're keeping him away from dairy or using Lactaid. It seems one of his most outward symptoms was a lactose intolerance. We are having him biopsied next week. This is one important reason I want to find out for sure, because sometimes there are no evident reactions. They say most of the people right now are asymptomatic.


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Guhlia Rising Star

Actually, I get MUCH sicker from CC than I do if I accidentally eat a gluten ingredient. For example, I get sick from just a crumb if I'm eating out, but if I sat down and ate a piece of pizza I probably wouldn't get sick at all. When I did my gluten challenge a year and a half ago I made it just over a month eating gluten every single day at every meal and snack before i started to get sick. When I started to get sick I only ever got really fatigued and slept a lot. I never did get the major gastro symptoms. I just couldn't deal with being so foggy and tired. If I get CC'd I generally end up with stomach cramps and diarrhea. Luckily, I don't stay sick for very long, generally not more than 24 hours. I get mouth sores too when I get glutened, but I didn't get any when I did my gluten challenge.

I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

emcmaster Collaborator
I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

This makes A LOT of sense to me. Thanks for taking the time to explain it!

CMCM Rising Star

In one of my celiac books I remember reading about a similar subject....it said the body actually has an adaptation ability....that when you eat gluten the body can over adapt to the "poison" gluten, hence you may not react, but over time you get overloaded and the adaptation ability breaks down. Something like that, it made some sense to me when I read it. I had always been puzzled by never quite knowing when I'd be affected. Sometimes seemingly not at all, other times quite severely.

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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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