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Ate Gluten Just To See!


LoriG

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LoriG Contributor

Ok, I've been gluten-free 7-1/2 months, but haven't gotten better. My main complaint is chronic fatigue. I also have Hashimoto's. So I decided to try some gluten because I really don't have an obvious symptom when I eat it. Last night we went to Pizza Hut and I ate pizza/breadsticks. I was expecting something awful to happen, but honestly no reaction!! After avoiding it for this long, something is wrong! I am meticulous about where it is in my food, don't eat at restaurants, careful in the kitchen..... I am so paranoid that I must be getting it in, but cannot figure this out at all. Why wouldn't I feel terrible from eating all of that? I was diagnosed by enterolab. Maybe they mixed me up with someone else? How can I continue this process when this happened? Any thoughts?


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Ursa Major Collaborator

After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

JNBunnie1 Community Regular
After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

Ditto. For me it's 48 to 72 hours.

AliB Enthusiast

The fact that you haven't really recovered after going gluten-free may suggest that some other food or foods could also be preventing your recovery. Those who are gluten-intolerant often also have problems with other things like dairy, corn, soy, etc. If the other foods are preventing recovery and still making you feel ill they could also be masking any reaction from the gluten. Because there is no noticeable improvement, you can't assume that your problem is not gluten.

There is also the possibility that you are getting a continuous 'supply' of hidden gluten without being aware of it, which would also restrict recovery. The stuff is so insidiously ingratiated into so many seemingly innocuous products that it is very difficult to avoid it at times.

You might get a better response by doing an elimination diet. Eating simply will help your body start to heal. It can take a while but is worth the effort. Try and restrict your diet to plain unprocessed and unadulterated meat, fish and poultry, fresh fruit and vegetables, some tolerated nuts and a little honey if you want something sweet.

It's annoying when you have gone through all this and don't seem to be getting anywhere, but there is likely to be a reason behind it somewhere!

kbtoyssni Contributor

It could also be that you get very mild reactions. I also had mostly chronic fatigue and joint/muscle pain as symptoms. My joints have been really painful recently, and I finally discovered I was eating some packaged Indian food with CC issues. It took a few weeks of eating the stuff for my joints to get really bad. But that doesn't mean it wasn't doing damage! It seems like non-GI symptoms take longer to show up.

Annaem Enthusiast

I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

LoriG Contributor
I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)


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MELINE Enthusiast
Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)

hello LoriG

Just want to say that for me too the reaction can take up to 2 days and has to be more than one gluten accident to realy feel it......

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      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
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