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jcp added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI Think I Did A Foolish Thing, And Now I'm Having TroubleHi, everyone. I'm Julie and I'm hoping I can get some guidance.
I have had extremely bad IBS for about 7 years. I went from having some problems eating onions to having huge problems with essentially everything that wasn't meat, dairy, or simple carbohydrates.
I kept cutting things out of my diet, more and more all the time, and kept having trouble, but it would be better sometimes and worse sometimes.
Last year, I started going to a new doctor who asked if I'd ever been tested for celiac. I said no, I had a blood test, and it came back negative. Of course, I told her, it was going to be negative because I can eat those simple carbohydrates. It's veggies and fruits and fiber and all of that stuff that causes the trouble.
This year, it was worse than ever. She said, "Are you SURE you don't have celiac?" and I reminded her I'd been tested. She did other blood tests and I have a Vitamin D deficiency. She suggested I see a specialist, but honestly I just felt like I didn't have time. (I'm in law school.)
Still thinking she was crazy, I decided to show her! I'd try a gluten-free diet for a while and see, thinking that even if it helped, I would still be able to go back on gluten and then go forward with testing.
So, I went off gluten for about three months. The change was remarkable. Huge. The worst of the IBS symptoms basically went away in a few weeks. The rest faded over the months.
Still, I knew I had to go back on gluten at some point just to get definitive tests done. Blood work again, maybe a biopsy, seeing a specialist, etc.
So, I decided I'd try eating gluten again. I started on Thanksgiving. I had two meals on Thanksgiving that involved bread. By the end of the day, I just had a rather odd full feeling, like I'd been gorging all day, though I hadn't. Friday, more gluten. Really uncomfortable now, feeling like my stomach was stuffed full. Saturday, more gluten. Extreme pain by the end of the day. Couldn't take any more, stopped eating gluten, and am now back to feeling mostly normal on my fifth day back gluten free, though boy howdy were the days in between really incredibly rocky, with major digestive issues.
So, my questions:
1. If this is a gluten issue, why would I be suffering so much when before going gluten-free the symptoms were not so dramatic? Does this suggest it's more in my mind?
2. If this is a gluten issue, does this mean the weeks or months I'd have to stay on gluten to complete my testing would be THAT miserable?
I feel like an idiot for trying to go gluten-free without having a diagnosis, though I really thought it was not going to work. Now I feel a little trapped. Any help, advice, stories, or smacks upside the head would be welcome. Well, maybe not the smacks, but I probably deserve them!
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