Glutened Questions...

[Philippa]

I am fairly new to this whole celiac thing...was diagnosed in March and been gluten-free since. It didn't take long after I stopped eating gluten before I started feeling much, much better...I started feeling better within 2 weeks and felt vastly different by 3-4 weeks gluten-free. There have been some minor blips along the way (Bob's Red Mill gluten-free flour does not sit well with my stomach!) but overall I've had a pretty smooth road, until 2 weeks ago. I guess I must have eaten some gluten, I have no idea what or how. All my old symptoms came back, but even worse.

I am still feeling bad two weeks later and starting to wonder, could it really have been gluten, or is something else wrong now? Can the gluten after-effects really last this long? I am still having nausea and diarrhea, although it is intermittent now. I felt fine on Wed and was thrilled that the whloe episode seemed to be over, and then felt terrible yesterday and this morning.

This whole episode caused me to lose 4 lbs...I never lost weight from my problems before I was diagnosed. I was a bit underweight to begin with so I can't really afford to lose much more.

Does this sound like what it's like to be glutened? Or should I be looking for other causes?

[gary'sgirl]

I feel like I don't quite have the knowledge that many on this board have, but just from reading other posts I have heard of several people having gluten reactions for 2-3 weeks and even a bit longer sometimes. It just depends on the person. Also, it seems that for many people the reactions get worse after going off of gluten.

I think it sounds like you had some gluten creep in and now that your body is healing you are having a stronger reaction when you do accidentally get glutened.

Welcome to the forum, and I hope you feel better soon.

[Skylark]

I have a really tough time telling stomach viruses apart from gluten reactions. Could you just be sick?

[conniebky]

I have a really tough time telling stomach viruses apart from gluten reactions. Could you just be sick?

That's what I was thinking...........

[GlutenFreeManna]

You could have a stomach bug or you could be getting glutened in some new way. I had one time when I knew I had a 24 hour stomach bug because my husband had it first. He brought it home from his work place where almost everyone was sick with it. Without thinking I took some OTC meds to try to counter-act the symptoms of the bug. A week later I was still sick and trying to figure out what was going on. It turns out I glutened myself three days in a row with the meds. They were NOT gluten free! It took me two weeks to get over that "24-hour" bug because of the glutening. Anyway the point of my story is gluten could be hiding anywhere. Think back to every product you use, every pan, plate, surface and utensil you prepare food with. Have you been exposed to any construction dust or new chemicals in the work place or at home? It could be something as simple as the place you work changing the type of hand soap they use. You wash your hands at work, then eat something with your hands and you get glutened. I know it sounds really far fetched, but you can't be too careful. I also think that some people can start becoming more sensitive to smaller amounts of gluten as their body heals. I had some lotion I had been using off and on for years and it didn't bother me until I was gluten free for two months. I put some lotion on and immediately my skin began to burn. When I checked the bottle it had wheat germ in it. I washed it off as much as possible, but I still broke out in hives from it. I had never reacted to it before...

[Philippa]

Thanks for all the replies. I don't really know if it is a virus...I thought about that, but it's been almost 2 weeks now. One thing that started to occur to me over the weekend is my birth control pill. I started it just when this started happening. I take it in the evening and I do usually feel worst in the mornings, and better in the afternoons. So I am calling the company tomorrow. The pharmacist said it doesn't actually contain gluten, but it could be cross-contaminated.

[Korwyn]

I am fairly new to this whole celiac thing...was diagnosed in March and been gluten-free since. It didn't take long after I stopped eating gluten before I started feeling much, much better...I started feeling better within 2 weeks and felt vastly different by 3-4 weeks gluten-free. There have been some minor blips along the way (Bob's Red Mill gluten-free flour does not sit well with my stomach!) but overall I've had a pretty smooth road, until 2 weeks ago. I guess I must have eaten some gluten, I have no idea what or how. All my old symptoms came back, but even worse.

I am still feeling bad two weeks later and starting to wonder, could it really have been gluten, or is something else wrong now? Can the gluten after-effects really last this long? I am still having nausea and diarrhea, although it is intermittent now. I felt fine on Wed and was thrilled that the whloe episode seemed to be over, and then felt terrible yesterday and this morning.

This whole episode caused me to lose 4 lbs...I never lost weight from my problems before I was diagnosed. I was a bit underweight to begin with so I can't really afford to lose much more.

Does this sound like what it's like to be glutened? Or should I be looking for other causes?

Hi Phillipa,

One of the things to consider, as a number of people here will attest, the gluten/celiac disease can mask other things which, once the gluten is removed for a period of time you can begin to see what appears to be a 'return' of the gluten symptoms. I'm not saying this is what is going on with you, but it is something to consider. My experience is as follows:

When I went gluten-free I didn't play around. I dumped everything we could find, got the Living Gluten-Free for Dummies, found this forum, spent about three days on the internet, and then started going through meds, vitamins, etc. If I didn't know what was in it, I hit google, the manufacturer's website or phone, or just dumped it. So within about a week our kitchen was virtually gluten-free. Since I'm a super-sensitive it has been relatively easy for me to find missed gluten.

About 3 days after going gluten-free, I started feeling tons better. Better than I had in weeks. Within a couple weeks I felt like I was high. I felt so good I was even acting high (probably the gluten withdrawal was part of that). Better than I had in years. Then about a week or so later I came down from my high, so this was about a total of four weeks after going GR. Some symptoms started to come back. And they started getting worse that before. To make a long story short, it turned out that I'm highly reactive to soy (it triggers severe neurologic and psych issues), and also tested positive for casein, which produces (for me) similar GI issues as if I get glutened. Later I also discovered that I was just pretty much intolerant of refined sugars in any form which also produced GI issues.

Much of this, while probably a result of living with untreated celiac disease for 20 years (leaky gut, etc) was also masked by the gluten related symptoms.

[sb2178]

You might also check the possible side effects of your BC. Sometimes they can cause enough of a hormonal shift that it upsets your GI tract too...

[sa1937]

About 3 days after going gluten-free, I started feeling tons better. Better than I had in weeks. Then about a week or so later I came down from my high, so this was about a total of four weeks after going GR. Some symptoms started to come back. And they started getting worse that before.

I felt the same way, incredibly well without symptoms (the Big D) within a few days of going totally gluten free following an EGD on April 9, which turned out to be positive for celiac. It almost seemed like it was too good to be true to see such positive effects so quickly. Then WHAM, symptoms started coming back and I still experiencing them even though I've gotten rid of every gluteny thing in my kitchen (as much as that's possible). I live alone so no little gluteny hands to muck things up.

I think I am also lactose intolerant in spite of buying Lactaid milk and Lactaid tablets to take with foods containing dairy. I decided to test that Fri. night with Ben & Jerry's Cherry Garcia. Big mistake that I paid for yesterday; today's not so bad. I plan to check other milks next time I go to the store (rice milk, almond milk or whatever). Since I'm still pretty new to this, I don't know if I have other intolerances that haven't come to light yet. Right now I'm trying to eat pretty plain foods...fresh fruits, veggies and meats. I haven't eaten out at all.

On Weds. I had a CT scan (CT Enterogram) so don't know if that will reveal anything or not but I sure paid for the effects of the VoLumen barium sulfate contrast solution on Weds. afternoon and was totally miserable until about 8 p.m. (worse than I felt prior to going gluten free).