I have been as gluten-free as possible (living in a mixed household, have my own cookware) since my negative biopsy 16 months ago. Ever since the gluten trial I did beforehand I am intolerant of almost everything but especially grains. I eat about as well as can be expected. I'm on a kind of paleo I guess, all meat and vegetables and small servings of fruit, except with my food problems my meal plan tends to be breakfast: chicken with spinach, lunch: chicken with kale, dinner: chicken with carrots, heavily supplemented with bananas throughout the day. Shampoo, rinse, repeat. Sometimes I sneak some egg whites into the mix, sometimes I can't stomach the thought of more chicken so I just have the vegetables. Sometimes I just don't bother to eat at all. Things are definitely better than they were when I was eating gluten, but still bad. I keep losing foods, I'm bloated and nauseous, I have extremely bad gas and unpredictable, foul BMs that lean more towards constipated. I just feel generally unwell and I'm not sure why I'm not getting better. The last gastro I saw put me on rifaximin to see if it was some kind of bacterial overgrowth.
I'm on day 9 (of 14) of the rifaximin, and it has worked in unexpected ways. I have less gas, and when I do have it it no longer smells like it could kill a man. Same with BMs. It also put an end to the maddening throat pressure I was having that I assumed was some kind of reflux. While my rosacea is still pink and flushy, the skin puffiness has reduced so much I look like a different person, and my skin has lost the orange peel texture. My ocular rosacea is no longer permanent, it shows up sporadically and generally goes away with eye drops. The skin on my body is less dry, bumpy and blotchy. My feet and hands no longer constantly glow bright red. The hollow, severely purple undereye circles I've sported for years have also started to improve drastically and my hair and nails are stronger and shinier. It took about three days of feeling weird and adjusting, but I noticed for a few days that my stomach felt a lot better, less 'full' feeling, especially just after I'd taken the pill. Not miraculously so, but I had really high hopes.
Unfortunately, I made the horrible decision to try out (gluten-free) grains again a few days ago after reading on a forum that the rifaximin needed higher carbs and sugar to draw out the bacteria. And after all, if I wanted to permanently incorporate them into my diet, why shouldn't I get started while my system had a boost? It was a bad call and I knew it, I was just so desperate for real food that I threw caution to the wind. It immediately triggered my binge eating (which I haven't struggled with at all since going grain free) so I went into grain overload. I felt the way I did when I was doing the gluten trial- extremely foggy, confused, lethargic, achy, and bloated to the point I was in so much discomfort I thought I could die. At least I didn't throw up this time. It was the worst I'd felt in ages and it took me 3 days to get off of them again. I'm horrified with myself and I think I've caused some damage. Worst of all, I think what I've done has set me back too far for the rifaximin to handle. I'm back to eating my usual but I keep feeling really ill, like it's undoing everything that's improved since I started taking it. I'm so scared. I know that if this course ends and I'm not cured, my gastro will immediately move on to "see, you have IBS! let's get you on some antidepressants". She said as much last time we met, the rifaximin was a last ditch effort.
I just feel so lost.
EclaraMember Since 02 Sep 2012
Offline Last Active Aug 13 2014 06:11 PM
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