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Ugh, Glutened And Sick Sick Sick

anerissara

By anerissara
in Coping with Celiac Disease

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anerissara Enthusiast
anerissara
Posted

Argh, I can't seem to keep myself from getting glutened for long enough to really get better! I'll be feeling better and then wham, glutened again. This time, I really did it...I was cooking pasta for relatives right before Thanksgiving, and for the first time in nearly a year I bought regular pasta and gluten-free pasta and cooked both (in seperate pans, of course!). I forgot and ate a noodle from the regular pot! Argh! This was weeks ago, and still I feel so crummy. On top of that, I discovered I was eating mustard for several days before the noodle that had wheat flour in it. ARgh!

Is there anyone else who still hasn't gotten it right? It's been nearly a year now, and although I feel better than I did a year ago I am still nowhere near back to normal (not that I can even *remember* how it felt to be normal...this has been going on for 1/2 my life!)

I'm starting to think maybe something else is wrong, too...obviously I get worse when I eat anything with any amount of gluten in it, but even when I've been totally gluten-free for weeks my bm's have only been *almost* normal at best. Ugh.

How totally obsessive about getting rid of the gluten in your life do you have to be to really feel better? I thought I was being careful (well, the noodle incident was certainly an exception) but I still am not back to healthy. Can it really take over a year before you're better, and if so have I set myself back for months and months because of that noodle? Usually my gluten episodes only last about a week, but that would be for trace amounts in something, not for mustard w/ wheat for 3 days followed by a totally wheat noodle.

Also, I noticed that this time around my right side is hurting low down, right by my hip almost. And my skin is breaking out on my hands again, blisters and dry skin. Ouch!

Sorry to sound so whiney, I just feel so crummy and want to be better! When I've felt bad for several weeks on end, it's hard to remember what it was like to feel OK.

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Felidae Enthusiast
Felidae
Posted

I had to eliminate all dairy and for the first time I have had normal bm's for the past four days. It's amazing. You could try eliminating dairy. Some people have issues with soy too.

anerissara Enthusiast
anerissara
Posted
  • Author

Hhhmmm, dairy...I did try eleminating dairy before I went gluten-free, thinking maybe that was the problem. I felt considerably better, but not as good as I did once the wheat was gone. After I had been gluten-free for awhile, dairy quit bothering me unless I drank plain milk. Maybe I should cut out the dairy again, at least for awhile until I get better from the last round of glutening.

Oh man! I need to do a complete overhaul on my diet. I just checked and the cereal I've been eating for breakfast now has gluten in it, too.

Maybe I'm not nearly as gluten-free as I thought I was.

Ugh.

:blink:

pixiegirl Enthusiast
pixiegirl
Posted

I'm pretty obsessive about staying gluten-free, I'd never, for example eat something without knowing whether its gluten-free or not. I've always had a mostly healthy diet , I don't eat many processed foods so its fairly easy for me to be gluten-free. I don't often eat things like cereal and when I do want something like that its usually LifeStream waffles and they clearly say gluten free on them.

I get so sick when I get glutened and I stay sick for a good few weeks that I just won't risk it anymore, I can't deal with being that sick all the time. So being really careful has just sort of evolved over the past 15 months.

However that being said I didn't get all better so I continued seeing my GI and I did find out there is something else wrong with me so don't discount that either, but I'd go totally gluten-free first and see how you feel after 6 weeks or so.

good luck, Susan

aikiducky Apprentice
aikiducky
Posted
I'm starting to think maybe something else is wrong, too...obviously I get worse when I eat anything with any amount of gluten in it, but even when I've been totally gluten-free for weeks my bm's have only been *almost* normal at best. Ugh.
You know, I doubt if there's anything else wrong. You might only notice symptoms for a few days, but it can take up to three-four weeks before ALL the damage has completely healed. So if you have been having little accidents all the time, you haven't had a normal bm becuse, well, your bowel hasn't had a chance to get to normal yet. :( Sorry.

How totally obsessive about getting rid of the gluten in your life do you have to be to really feel better?
Totally. Obsessive. Check everything you put in your mouth. If you're not sure, don't put it in your mouth. If you can avoid it, don't cook gluten foods for other people!

Can it really take over a year before you're better, and if so have I set myself back for months and months because of that noodle?
Yes, and maybe. What I'd do now, is mark a date in your calender in about six weeks. Don't start to panic about other possible food problems or health problems until that time has passed. Most likely you'll be feeling the after-effects of the glutening until then.

Hope you will start feeling a bit better soon!

Pauliina

Matilda Enthusiast
Matilda
Posted

..

tarnalberry Community Regular
tarnalberry
Posted
How totally obsessive about getting rid of the gluten in your life do you have to be to really feel better?

How obsessive?

*__________________________ this obsessive __________________________*

:-P

Seriously, if you aren't sure it's gluten free, don't risk it.

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Merika Contributor
Merika
Posted

100% totally and completely obsessive about getting rid of gluten!

Your health problems will not go away most likely for *months* after being 100% gluten-free. I have been gluten-free for almost 2 years, accidentally glutened 2 weeks ago, and also the first few months after going gluten-free, as I got the hang of it. I was super sick before gluten-free, and in general I do not eat out or at anyone else's house, etc etc. I am still not completely better.

Just to give you a timeline.... :)

Merika

anerissara Enthusiast
anerissara
Posted
  • Author

Thanks for the encouragement, I have been much more careful the last few days with what I've eaten and I do seem to be getting better. I am going over everything I eat with a fine-toothed comb and trying to make sure everything is safe, hopefully I will see enough of an improvement in the next week or two that it will set my mind to rest about something else being wrong. It did help to find several things that probably glutened me in the last month...it makes more sense when I realize how many times I've still gotten gluten. No wonder I was sick :o(

RiceGuy Collaborator
RiceGuy
Posted

For me it's been about a year gluten-free and still a long way to go from what I can tell. I don't think I'm getting glutened since I generally feel about the same each day, accept for minor improvement as I think back a few weeks or so. This to me indicates progress in the right direction, only very slow. So, I'm always on the lookout for anything that might help speed it up.

One thing I know I have to do is make certain to chew every bite of food REALLY well. That's because of the intestinal damage. I find things work better in the gut. It might seem rediculous to pulverize every bite into a "baby food" type of thing, but it makes a big difference. Getting enough fiber is important too. And of course, maximizing and balancing the nutritional content.

I hope all of us get better soon!

frustratedneicey Apprentice
frustratedneicey
Posted

Another tip for you of a lesson I have learned the hard way:

No matter how many times you have bought something gluten free, keep checking the label everytime you buy it. I was eating a cereal for months because the dietician I saw said it was on the list, this site said it was on the list. But about 2 months ago, when i was sick and didn't know what in the world was making me sick, I turned the bag over and BAM! There it was, ingredients changed to wheat starch.

I thought it was safe to buy what I already knew was gluten-free, seems that you can't trust these companies to print a warning label for us!!! ; )

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