My doctor has now ruled out pretty much everything else - the GI specialist has decreed it IBS. Which, I understand, doesn't mean that I don't have a problem with gluten. I was actually told that I had IBS a few years ago (after an insufficient celiac test and not being informed that not having celiac isn't assurance that you can eat gluten comfortably). In the past 2 years I have therefore tried cutting out pretty much everything BUT gluten to no avail. The only thing that I discovered that really bothered me was sugar alcohols, especially sorbitol.
So, I ate some bread (and a cookie) last night and had no immediate reaction. I actually feel pretty fine today too, but I did have a minor migraine this morning for the first time in weeks (lack of migraines has been one indication that has made me feel like the gluten free diet could be working) and while I haven't had major stomach problems, I've been feeling generally like I have mild menstrual cramps. Except, of course, I don't.
So I've decided to stay mostly gluten free, but to stress about it less. I don't mind doing it at home at ALL - the only thing has been ordering when we eat out (which my husband and I like to do a lot) and not being sure if something might have a slight gluten ingredient in it. So with such a mild result, and knowing that i don't have celiac or some other situation that would make eating small amounts of gluten hazardous to my overall health... when we go out, I'll order the most gluten-free item on the menu and not stress if there's something a LITTLE in it. This plan makes me feel MUCH better. I can live with this, even without the 100% certainty that I have a gluten intolerance (still wish I could have that certainty).
I'm also very pleased with myself for having found a bread pan that is long and narrow to hopefully create the perfect sandwich size bread. Feeling a lot calmer and less frustrated!
So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?
The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.
If I don't actually learn something from this, I am going to be seriously annoyed.
Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.
I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.
I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.
Thank you! I am definitely a bit nervous about the test... I've heard horror stories about the prep. I hope it tells me something, because I don't want to feel like I went through all that for nothing!
They're sending me for a colonoscopy on Monday. This is obviously because they're concerned about the fact that I've still been having issues despite being on the gluten-free diet for a month now. I'm wondering if I should go ahead and eat gluten so my diet will be close to what it usually is before they do the colonoscopy. or if I should wait since they want to see what's going on despite the gluten free diet? Thoughts?
So I'm having more diarrhea today - went home sick with it, in fact - and I am still absolutely baffled. Does this mean the diet isn't working? Or that I accidentally ate gluten? I don't see when or how that could have happened... I've been very careful. How on earth am I supposed to know? These episodes are very different from before - I'm sorry for the details here but hopefully if I spell it out, someone will have had a similar experience and can explain. Before, I would feel fine, but then suddenly and abruptly have to go. It would often be loose but not completely liquid, and dark in color, and always ended with mucus. It would be very painful, causing me to sweat all over. Then it would be over and I would feel fine again. Now, my stomach is cramping up in advance. The diarrhea is lighter in color and is completely liquid. There is no mucus and it doesn't hurt while it's happening, just before, and now I feel tired and queasy.
So is this the difference between eating gluten all the time before and now being gluten-free and just accidentally having eaten some? Or is it just not working? I really appreciate all of your help!!
I was just out shopping, and my stomach just exploded in the most embarrassing and horrible way I've experienced yet. The worst part was that there was blood involved, and that's never happened before. I'm freaking out a little extra now.
I guess I will just be patient, then. I just wanted to feel better NOW, or at least know that it was definitely coming. The biggest problem right now is the fatigue. I'm a music teacher and I keep getting home at the end of the day and being too tired to do anything else... and this is the EASY part of the year.
Anyway, I have been trying to be really good and not let any gluten slip in. I really don't mind the diet as much as I thought I would. I just want it to work!!! Incidentally, I am one of the people who was told I had IBS (after a negative blood test for celiac). My doctor just told me to "try to figure out what triggered it" and set me loose. It wasn't until I switched doctors very recently that I learned you can have a sensitivity without having celiac, and that I should have been tested again. I went straight for the biopsy this time to be sure. I'm frustrated that if this IS a gluten problem, I could have been feeling better for the last two years.
Thanks for the responses!
I just got my test results back from my celiac testing, and they're negative. My doctor started me immediately on a gluten free diet anyway, in case I have non-celiac gluten sensitivity. I am almost disappointed to not have the celiac diagnosis because I want to know for SURE if gluten is a problem or not. I hate that I am now going to have to figure it out on my own through trial and error. I've been gluten-free for a couple of weeks now, and my symptoms HAVE been better. But then, sometimes my symptoms just happen to be better. How do I know if it's just a coincidence? And I've still had occasional symptoms - like plenty of gas, and I had a diarrhea-related incident just today. How do I know if that means the gluten-free diet isn't working, or if I accidentally ate something gluten-y? Any words of wisdom? I'm feeling frustrated - I would love for gluten to be the problem because then I have a solution that will work, but I don't know if it is or if it's wishful thinking.
I just started a gluten free diet about two weeks ago. I have a few friends with celiac disease, and they all strongly recommended baking your own bread as opposed to buying store bought. I thought it sounded like a great idea, and happened to spot a breadmaker on Craigslist, so I went at it.
I used a recipe I found on a gluten-free blog, and while the taste is GREAT, it took me a few days to figure out why I was having trouble making sandwiches. It's too wide and short. I don't think this was a problem with the bread - I think it's the size of the breadpan itself.
Do people use bread machine bread for sandwiches? Or am I just weird for not liking bread that shape? Is there a way to fix this (different sized bread pans I could buy somewhere?) or should I just bake in the oven instead? Thoughts?