New & Glutened

[madsunny]

Hi, all-

I was diagnosed with Celiac Disease two years ago and went gluten-free; I was pretty sick, ended up in the hospital before I finally started getting better. Although I had some lingering symptoms, after about a year I was feeling pretty good in general. I've never intentionally eaten gluten and I'd only ever had some short-term D after the occasional dinner out as my only experience being glutened.

But, about a week and a half ago, I started to feel really sick again. D., gassy, nauseated, "urpiness" - and I kept thinking it would get better, but it's gotten worse. The D (excuse me) has gone from not bad to liquid & urgent. I can't figure what I ate, but leaving that aside, I can't figure out why I'm getting worse! Also, after having had my lactose intolerance disappear after about a year, it's back with a vengeance. Weirdly, I'm not have (touch wood) the neurological symptoms, fatigue, & especially migraines that were major symptoms for me before dx.

I don't know, I just found the boards & I'm kind of upset and scared, because I'm freaked out at being sick again. I don't have a gastro where I live (I moved fairly recently), nor do I know anyone here with celiac. I've read through all my books again & none of them seem to have anything about being glutened.

Sorry this is long. I guess I'm trying to figure out whether there's anything to do but wait and hope I feel better (and how long do I wait? when do I worry) and wishing I had someone to talk as I sit and clutch my poor aching belly. Thanks for reading.

[digmom1014]

I'm sorry this is happening to you. I have not been gluten-free as long as you-I'm at 1 1/2 yrs. but I too have recently had a similar experience. I was using my own stand-by's and not reading all of the labels yet again, and as luck would have it-some of the formula's had changed.

I also have found I need to do an elimination diet for nuts. I never had a problem before but peanuts bother me though, some nuts do not. Maybe it is just certain dairy that is bothering you? I would try it in fazes and maybe only some things need to be eliminated.

I think it is just so frustrating when you think you have it under control, something else pop's up.

[mattathayde]

i would say that you might have some "bug" in your system that most MDs will just say will run its course or what ever. some alternative medicine docs will pick these out really fast and give things like black walnut or goldenseal extract for you to take that usually gets rid of it.

you might be eating other stuff is giving you issues that you dont realize, im not a fan of elimination diets but you could simplify your diet to see if that helps.

you might be sensitive to soy since it is just as common as gluten in food if not more so

-matt

[madsunny]

Thanks for the responses!

Yes, definitely part of the problem is having felt like I had this thing under control. Also, that I could (mentally, at least) relax. Maybe I relaxed too much? I seriously hope it's just a bug ... I really don't know about giving up soy; I'm even finding myself resistant to going back to dairy-free.

Would it be weird for a new allergen to just pop up like that? To suddenly be sensitive to soy (or whatever)? I guess not. I find myself worried that it's a new condition, somehow, one of the celiac-linked things. Which is probably me being paranoid. I just wish my insides would calm down so I could go to the gym.

[ang1e0251]

I wouldn't rule out sneaky gluten before assuming it's a new sensitivity. Like the other poster said, you get comfortable and don't read labels as carefully as before. I've had it happen to me.

I would go through your kitchen and read every label; spices, teas, and even meats. Yes, meats. Some frozen chicken now comes coated with a broth. Some balsamic vinegar can have gluten. Sneaky gluten hides where you least expect it. If you really rule out gluten in all your meds and foods, then probably backing off to a very simple basic diet will help you pin point your problem along with a food journal.

Remember when you first started the gluten-free diet and how careful you were? Remember before you ate a lot of alternative grains? Go back to that and build on it until you find your culprit.

[madsunny]

Argh. Good point. I've gotten to the point where I'm not as careful with familiar brands; I'll have to recheck them all. Fun times with the phone! I eat mostly organic, local meat, I think I'd been assuming they wouldn't do any of those packaging tricks, but, you know what they say about "assume".

I'm going to be very sad, though, if it's my peanut butter or tylenol!

[Crayons574]

I would double-check to make sure you are not getting glutened from anything you are using--including products. Perhaps you have another food intolerance that you haven't figured out yet? Personally, after I went gluten free, it took me up to almost an entire year to quit having D. So, it could just take time for your gut to heal (that is, if nothing else is causing the problem). Good luck!