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Hi all,

So I am new here -- just recently started eating gluten-free after years of undiagnosed stomach issues. I've been tested for celiac (while eating wheat) and it came up negative, but I recently got some family history news that leads me to believe gluten might be the issue causing my problems.

So I cut out gluten a few weeks ago, and I've noticed now that even when I have the slightest amount of gluten, I have terrible stomach issues. It is quite dramatic and happens quickly -- and is much worse than the stomach issues I had a month ago.

Any thoughts on why gluten is so much worse now when I get even a little bit, as compared to a month ago when I was eating bread and pasta on a regular basis and only having stomach issues sporadically?

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It happens. It's common to have a stronger reaction after going gluten-free than you had before going gluten-free. That's why so many refuse & simply can not tolerate glutening themselves for testing after they had already gone gluten-free.

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It happens. It's common to have a stronger reaction after going gluten-free than you had before going gluten-free. That's why so many refuse & simply can not tolerate glutening themselves for testing after they had already gone gluten-free.

Thanks for the reply. I had been holding out hope that I wasn't gluten intolerant, but my reaction lately has me thinking I need to start coming to terms with it.

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Your tests may not have consisted of the complete celiac panel & that's why you came up negative. Most docs don't know what the full panel consists of. Then there are also false negatives --- close to or 30%.

At any rate you have discovered your problem as well as the answer to the problem. Good for you!

What I said before about stronger reactions also applies to those of us with dh (dermatitis herpetiformis) the celiac rash. And there's NO WAY I'm going back on gluten to prove to some doc something that I already have proof of. It's going to take long enough for the antibodies to get out of my skin so I don't get this anymore --- I will not do anything to knowingly prolong that process.

And welcome to the board!

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Welcome :)

Your observation is a good one. And a big clue.

And I always say to people who ask about it: if you did NOT have a gluten problem, you could take it out for months or years, eat it and be perfectly fine.

If you do not feel fine, that's your answer.

You say it only happened sporadically, but your system was so flooded with gluten back then (eating it on a regular basis) and so it is very difficult to tell when exactly you were sick from it. We get used to feeling crappy. We adapt.

Taken out entirely, you felt better and one small amount will give you a reaction and get your attention more quickly.

You should see what happens to me from trace gluten cross contamination....It's not pretty. :blink:

To echo SQUIRMY's thought here, I agree that just because the celiac panel was NEG, it does not necessarily mean you are not gluten sensitive (or a celiac- to- be or an actual celiac ) My blood tests were negative.

If gluten makes you feel bad, don't eat it.

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I was only gluten free by accident before testing. I was doing an Adkins type diet with my mom. I got SOOOO much better in 2 weeks but my doc wanted to test for Celiac. So he said I needed to be eating Gluten and I had a big bowl of pasta the night before. OMG I had the worst night and last 3 weeks. I have continued to eat gluten in prep for a biopsy but then the blood work came back negative. He told me he believed since I had even by accident been gluten free that is was a false negative and to continue to eat gluten to retest. I have to tell you I am the sickest I have ever been in my life with a week to go. I am calling him in the morning and telling him I am done! I can't do it. I can barely stand up, GI problems are awful! I am so swollen I can't bend my legs. I didn't have a reaction this strong till after being Gluten free and that was only for 2 weeks! Obviously my body is telling me something.

I guess I am just saying yes you can get that much worse after restarting gluten even after a short period of time off it. ;)

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
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    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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