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Weird Question Maybe, Has Anyone Been Undiagnosed For A Long Time?

coldnight

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coldnight Apprentice
coldnight
Posted

Ok, been here a few times, have been off gluten for a few months now and feeling really well. After many years of just being told I had IBS, i've been on a ton of motility medication. I'm stepping off it, but if I mess up and eat something bad, then I get sick, and take medicine for a few days, but then it's over, then it's too much medicine and it's quite painful.

So, what do you folks do when you mess up? I've found I can tolerate small amounts of gluten free corn chips and stuff like that now, but if I eat something I can't, I'll get sick for a day or two. Stepping off the medicine is just a nightmare. Sparing you the details, like I said, it's painful when the medicine is working and you don't need it (lomotil).

So, do you just ride out the illness if you get sick? Do you take a weaker medicine? I'm like in a 9 year habit of popping medicine like candy when I don't feel well, because it's been the only way, but now, it's not good if I mess up and take too little, and it is horrendously painful if I take too much. So, I'm just trying to understand how to function in this interim period, I think I am a lot better, I understand more and more what I can and cannot eat.

But today is misery, I took some herb called boswellia (stupid) just to try it since it's supposed to be good for stomach ailments and inflammation, and of course, it made me sick. So, I took medicine for several days, but the sickness from it did not last as long as I thought it would. Now I am regretting that quite a lot. I suppose I will feel better in a week or so, but maybe I should just ditch this medicine... I'm just curious how everyone deals with it when they get sick from eating the wrong thing?

(I do not have any positive celiac diagnosis, but going off wheat has made an unbelievable difference, so I'm going with that.)

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ang1e0251 Contributor
ang1e0251
Posted

Usually I just ride it out and try to eat very simply. The sublingual B-12 helps me tremendously to shorten the illness but I don't take anything else. I feel if I do, I'll go too much the "other way".

ravenwoodglass Mentor
ravenwoodglass
Posted

I know that many can't do it but when I get glutened I let my body purge. If I take something to stop the D I end up with more prolonged cramping and it seems to make the other issues just as bad as if I was continuing to gluten myself. The D day is rough but a warming pad helps the cramping a bit and I will usually have a migraine to so laying in bed is my best bet. When my system has cleared and I start to feel hungrey cream of buckwheat or cream of rice is soothing and quick.

coldnight Apprentice
coldnight
Posted
  • Author

That makes sense, what do you do about work?

I've been dependent on 9 lomotil and 120mg of codeine to make it to work every day for about 4 years. So, it's hard to give up that security blanket, even though I don't even need it when I avoid gluten, I take ~1/2 a lomotil now, and that is far less than when I started taking it 4 years ago. But yea.. I seem to be in a pattern, I eat something, I get sick, I take something, even a small dose, and go too far the other way and it sucks.

one more mile Contributor
one more mile
Posted

I use to be a hypochondriac but now find out that I am just a Celiac.

My new doctor laughed when I told her that. Then apologized for laughing.

Today when I gluten myself the last thing my body needs is for me to put more stuff in it for it to have to deal with.

I drink watered down juice ( 1/3 juice or less) and take the day off from expecting me to to anything.

One more mile.

coldnight Apprentice
coldnight
Posted
  • Author
I use to be a hypochondriac but now find out that I am just a Celiac.

My new doctor laughed when I told her that. Then apologized for laughing.

Today when I gluten myself the last thing my body needs is for me to put more stuff in it for it to have to deal with.

I drink watered down juice ( 1/3 juice or less) and take the day off from expecting me to to anything.

One more mile.

Heh, that's funny. I might have to steal it. How long have you been off of gluten?

I tried to go medicine free, but for some reason this last .5 of a pill kills me if I don't take it, tolerance maybe, the first 8.5 were fairly easy to get rid of though, so I'm not sure. I mean, the difference is immense, but maybe it will take time before I can completely drop it. I could probably do that, take the day off from doing anything, if it didn't happen frequently. I feel like I'm still in some kind of interim, where I've stopped gluten for a couple months, and had a few slips that made me sick, but much better for the most part, just not completely there yet. I hope it does get better, this is kind of miserable, it was almost better to eat what I wanted and take a load of medicine to keep from being sick. I never had constipation.

Oh well, I hope at the end of this there is a point where I can live without medicine, and not be in pain as long as I avoid the wheat.

I wonder if anyone else has been diagnosed with IBS for a long period, and treated it like you would IBS, and how they switched from treating it like IBS to treating it like celiac disease. Specifically someone who built up a good tolerance to anti-diarrhea medication then suddenly didn't need it anymore.

Thanks for your input, it is helpful, as long as I can get to a point where I can be off medicine and still feel ok.

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