Ongoing battle with LC.

[tooolgrl]

Good morning everyone,

I have been battling CC and/or LC depending on which biopsy we are seeing at the time. I went GF about 8 years ago and while it has helped my pain symptoms my diarrhea never went away. I had a GI doc perforate my colon and send me home following a colonoscopy in 2013 and from that episode had a right sided hemicolectomy with temporary ileostomy which was taken down in early 2014. I have severe watery diarrhea up to and sometimes exceeding 20 times per day. Doesn't seem to matter what I eat. If I don't eat I feel great, once I even start chewing food I start with the diarrhea. I work 40+ hours a week as a Vet tech which can be quite difficult at times due to severity of symptoms, luckily I work with great people who understand and accommodate my illness and frequent bathroom visits. I take methylated B12 and methylfolate as well as D3 5000IU and magnesium glycinate 400mgs daily. I also take a multivitamin daily. All gluten free. I am on a strict gluten free diet. My GI wants me to take Entocort, which I had been on many years ago, and where it did help my symptoms I had horrible side effects from it. At this time to take this medication again would not only cost me $500 but I worry I would have the same effects from it again, which were bladder related and very uncomfortable. I asked my GI doc if there were other meds out there that may help but feel at this point I am on my own. I do not do well with steroids and they make me become a mean person. Anyone have any suggestions out there? I am at the point where nausea is an almost constant battle and I literally have to force myself to eat. If anyone has any food suggestions that may seem to entice my appetite I would be very appreciative to hear. I do drink a lot of water mixed with a bit of grapefruit juice. Cheers everyone and thanks in advance! Sandra

[tex]

Hi Sandra,

It's very distressing to read that as long as you've been a member here, you're still in a full flare. The disease is obviously not going to go into remission spontaneously, so it's time to get serious about controlling it. You say that you're on a strict GF diet and imply that you feel that gluten is your only food sensitivity. On what are you basing the assumption that gluten is your only sensitivity? As long as you have been reacting, it is almost certain that you have developed many other food sensitivities by now (if you didn't have them initially).

Your comment "Doesn't seem to matter what I eat." suggests to me that your diet is somehow being cross-contaminated with gluten. That was exactly my experience when I started recovering — until I had been totally GF for about 3 or 4 months, I seemed to react to anything and everything. I couldn't tell any difference. No matter what I cut out of my diet, I still reacted at random. And that was with a carefully maintained food/reaction journal. But after I avoided gluten for several months, my immune system began reacting to other foods, so I could tell what was making me react, and what wasn't.

Unless you have selective IgA deficiency, I would suggest that your first step should be to order the EnteroLab tests so that you can understand exactly what is causing you to react and what isn't. Then you can select a recovery diet that should work to stop the inflammation. Those tests will also tell you whether or not you are still reacting to gluten after all these years.

Also, most of us cannot tolerate citric acid while we're reacting. And I note that grapefruit juice is unique in that it is probably the only agent that should never be ingested while taking any medications. Grapefruit, or grapefruit juice will cause most medications to be much more potent than normal, and can cause unpredictable results.

Anyway, those are my suggestions, if you're serious about controlling the symptoms.

Tex

[Gabes-Apg]

maybe for you, GF is not enough, if you are still having other high inflammation triggers, like eggs, soy, dairy, etc this may explain ongoing inflammation

and as Tex has mentioned, you may still be getting low grade gluten contamination.

the other aspect is triggers other than food. bathroom products, makeup, lipbalms, have you checked these for gluten?