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How Long Did It Take Before You Started Reacting To Being Glutened

zus888

By zus888
in Coping with Celiac Disease

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zus888 Contributor
zus888
Posted

I'm just wondering. How long did it take (after starting the diet) for you to start noticing when you were glutened? Also did you have symptoms prior to going on the diet?

I'm asymptomatic (though I'm always fatigued and people do make comments regularly about my inability to remember anything), and am wondering if there will be a point where I start reacting to gluten and when that typically is? I know everyone's reaction is different, but I'm wondering if there's an average timeframe.

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SGWhiskers Collaborator
SGWhiskers
Posted

I had neuro symptoms and felt more awake after several weeks and was functional again by 3 months. My memory improved some around 18 months, but it is still weaker than it was. I discovered that almost immediately after going gluten free, my neuro symptoms showed little bits of improvement, but that when I made mistakes I had more pain and fatigue again.

I'm not sure if this helps, since I wasn't asymptomatic, but it sounds like you are not entirely asymptomatic either. Unlike many posters here, my cross contamination reactions did not bring on symptoms that were worse than prior to diagnosis. My reactions have continued to get milder and milder since diagnosis. Although comparing those days to normal days, it feels like someone shot me in the head whereas I was used to that feeling before.

eatmeat4good Enthusiast
eatmeat4good
Posted

I know within 24 hours of being accidentally glutened. I get depressed, spacey, foggy, angry, tired, headache, strangely no stomach problems, but terrible mood problems and a migraine headache that lasts about 3 days. Some people don't have symptoms or can't tell that they do. My son was only gluten free for 4 days and then challenged it and he immediately got sharp stomach pains and described it as shards of glass or a knofe stabbing him in the belly. Now when glutened accidentally that is what he gets, plus a 24 hour nap. He is absolutely fatigued and cannot be woken. It is an absolute stupor. I am always shocked to hear that people can be without symptoms when glutened, because our symptoms are really loud and clear. Well, loud and clear ONLY now that we know what is causing it. We both went years with these symptoms wondering what the heck was wrong with us.

If you are asymptomatic, or you just have and memory problems, you may only notice that these get better slowly over time. You might begin to connect bouts of fatigue or spaciness with being glutened, but that is not always the case.

zus888 Contributor
zus888
Posted
  • Author

Yeah, I'm only at the beginning of my diet and am not sure when I'll start noticing if I've been glutened. I have heard of people who seem to not have symptoms to suddenly start having them after being on the diet, but I'm not sure how far along in the diet they were before they started being able to tell.

love2travel Mentor
love2travel
Posted

I've been gluten-free for just over a month EXCEPT just found out that a product that was gluten-free online (and via phone call) was NOT gluten-free after all (received an email from the company apologizing). They are corn tortilla chips and I ate them three times in the last month and had zero reaction to them. Zip. Zilch. So I THOUGHT I was totally gluten-free but I had those dumb chips. Still have had no reaction to anything else. On my gluten challenge for three months after being totally gluten-free five months same thing - not one single reaction. It's a weird thing, alright. :huh:

zus888 Contributor
zus888
Posted
  • Author

I'm bumping this up to see if there's anyone else who has anything to add. I'll soon be 2 weeks gluten-free, and I have had no signs of being glutened. That could be because it's too soon to tell, I haven't been glutened yet, or I have silent celiac. I'm wondering if there's a point at which I should be able to know if I am a silent celiac or not. Surely, I'm going to get glutened. I'm just wondering how long most people are gluten-free before they start reacting to being glutened.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I don't know! I'm on week 3/4 and I still don't know what my symptoms are. I'm still having near-constant gas, headaches, and some other things, but, idk... I had a bite of bread yesterday on accident and I haven't really suffered anything unusual from it so far... and I've been so paranoid from CC, but I don't guess CC is hurting me yet?

I too am wondering how long it will take me to start getting really sensitive to the CC I am being paranoid about already!

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love2travel Mentor
love2travel
Posted

I'm wondering the same thing as I've been gluten-free for six weeks. I know I was accidentally glutened twice (was informed by a company that their gluten-free product was no longer gluten-free after I ingested it) but nothing happened. No symptoms at all. It's nerve wracking as I cannot tell whether I have been glutened besides those two times. :huh:

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