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#1 Eclara

 
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Posted 21 March 2014 - 03:52 AM

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.
 


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Low IGA, tests not viable- no other blood tests performed

Negative biopsy 12/12/12

Gluten-free 12/13/12

 

Currently unable to tolerate: gluten, grains, dairy, soy, nightshades, all sweeteners except for liquid stevia and coconut nectar, cruciferous vegetables, all fruit except for bananas and berries, eggs, beans, chocolate (noooo).

 


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#2 GFinDC

 
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Posted 21 March 2014 - 05:30 AM

Hi Eclara,

 

You may have screwed up, but that puts you right in the midst of a goodly number of us who screwed up before you!  Treating our condition seems to involve quite a bit of trial and error at times.  My understanding is the rifaximin is an antibiotic.  That you improved when you started it seems to mean you did have a problem with your gut flora.  The refaximin started correcting the problem, you ate some carbs, and the gut bacteria started thriving again.  I think you are right go back to your previous low carb diet.  A couple other things you could try are garlic (for bacteria control) and mastic gum.  You  might want to start taking some pro-biotics once a day also.  Although the pro-biotics should be taken separately from the refaximin by several hours at least.  Another natural thing that might help is caprylic acid.  Caprylic acid is found in coconut  and can help get rid of yeast.

 

If you can vary your diet by trying different meats and veggies it could also help.  You may need to take digestive enzymes while you are on the refaximin also.  I didn't notice if you are still on dairy and soy protein but I am thinking you aren't.  Those would be good things to avoid for a while.

 

http://en.wikipedia.org/wiki/Rifaximin


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#3 IrishHeart

 
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Posted 21 March 2014 - 10:12 AM

Anytime anyone takes a course of antibiotics, they should take probiotics to correct the gut flora balance.

 

Very rarely will a GI doctor tell you this. (Mine is one of the more enlightened ones)

 

(A good one is Florajen3). This advice is IMHO, but I have seen probiotics work wonders for many people, myself included. MY GI tract was a mess for many years--almost my entire life-- and now, I can honestly say I'm "normal". 

 

(well, in reference to my GI tract anyway).  -_-

 

GIs offer SSRIs for IBS because they believe it helps with seratonin production (which occurs in the gut) and relaxes the muscles. I know, they put me on them for years before my C D DX and they did squat for me except promote weight gain.

I think there are better ways to treat "IBS" than to take prescription meds. But again, IMHO.

 

Check out Danielle Walker's website Against All Grains for some good recipes and her inspiring story of recovery. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#4 w8in4dave

 
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Posted 21 March 2014 - 10:42 AM

I LOVE LOVE LOVE the probiotics! Great advise up there! Nuff said from me! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#5 Eclara

 
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Posted 21 March 2014 - 02:00 PM

Thank you for the kind replies!

 

I don't really tolerate many other meats or vegetables right now, which is why my diet is so limited. It's part of what I was hoping would improve- I'm dying to get sweet potatoes and cauliflower back especially! I also avoid dairy and soy. The only dairy I tolerate is lactose free kefir which I haven't been drinking the last few days because I wasn't sure if the probiotics in it would interfere with the antibiotic. Will a probiotic really do me any good while I'm taking something that kills everything? Won't all the good bacteria just be continually wiped away with the bad?

 

I don't tolerate garlic but I will look into the mastic gum and caprylic acid, thanks!


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Low IGA, tests not viable- no other blood tests performed

Negative biopsy 12/12/12

Gluten-free 12/13/12

 

Currently unable to tolerate: gluten, grains, dairy, soy, nightshades, all sweeteners except for liquid stevia and coconut nectar, cruciferous vegetables, all fruit except for bananas and berries, eggs, beans, chocolate (noooo).

 


#6 IrishHeart

 
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Posted 21 March 2014 - 03:40 PM

. Will a probiotic really do me any good while I'm taking something that kills everything? Won't all the good bacteria just be continually wiped away with the bad?

 

 

 

No, hon that's not how this works.

Your GI tract has so many bacteria in it. The "antibiotics" are working to kill an infection.

So, now, you need more of the "good guys"--the PRObiotics to replenish.

If you do not take any of the "good guys"to replenish....imagine what will happen.

Total mess down there. Trust me on this one. This was my gut upon diagnosis NO detectable

beneficial gut bacteria = sickness. 

Probiotics = a healthy body. 

 

 

.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif






Also tagged with one or more of these keywords: rifaximin, grain intolerance, binge eating, xifaxan, bacterial overgrowth, multiple intolerances

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