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meirocco
11-01-2011, 10:38 AM
I have had ibs-d for some years now. last 7 months been horrible, everything that touched my tongue i would get sick on top of the diareah. after 7 months of noone listening, losing tons of weight, and anxiety to the moon. i called my gi doc. told him i CAN NOT eat anything. set me up the next day for a breath test. come to find out i had MAJOR small intestine bacterial overgrowth. was put on an antibiotic strictly for small intestines and i am able to eat to a point. since it has gone on for soooo long, i cut out about all food, anxious, and majorly depressed. (anyone would be when tied to a toilet for that long). it can (doesnt mean it will) cause some serious illnesses when not caught fast enough. i suggest anyone that feels worse than usual with the ibs to get the breath test done. its very simple and noninvasive. takes time tho. it is a 3.5 hour test, although if you test positive, you may not be there that whole time. you drink 8 oz of water with undigestible sugar in it, then every 20 minutes breath into a bag. if you have it (sibo) then you will breath a gas out your lungs showing that, you are not digesting. i was there an hour and they found it (again mine was bad). My other symptoms where: very bad odor coming from my skin (armpits mainly), malabsorbtion, poo that would knock you out (the smell), lose of alot of weight, extreme anxiety, and very very fatigued, noises in my stomach nonstop (not hunger ones). it is like toxin overload. you can search the internet to see if you have signs of it. its called small intestine bacterial overgrowth, and to learn more about the breath test. hope this helps someone, anyone, before it gets as far as mine is. just a thought. ive been on the antibiotic for a week and a half now, although i can eat, im still very weak, anxious, depressed, but i dont smell like i did, my poo is still wierd but not anywheres near as funky smelling. yet some reason im still loosing weight.

Twinkie50
12-07-2011, 12:38 PM
Hi My name is MaryAnn ... Have had diagnosis of IBS for 25 plus years, but last 3 years stomach issues have gotten way worse. Severe gas pains; especially after eating with unreal passing of gas ... without being gross - the gas I pass IS SO LOUD its unreal. I have gained weight, not lost - constantly hungry and craving sugar and in June I noticed my stools were constantly floating. I went to my regular doc who did not make a big deal of it and just blamed my IBS. Floating stools continued along with worsening stomach problems; paleness; fatigue; not sleeping well. He then tested my stool for bacteria, parasites, etc. NEGATIVE... then tested my stool a few weeks later for fat and came back positive. Malabsorption .... sent me to gastro. He did breath test and I came up positive. Also did bloodwork for celiac and an upper endoscopy for celiac and h-pylori. I strongly suggest you get tested for celiac as it can cause all these type of symptoms. I was negative for celiac and h-pylori and took 2 weeks of an antibiotic called Xifantin or something - cannot remember now. 550mg twice daily for a full 2 weeks. Within 3 days, the gas was GONE and I was able to eat without stomach pains... However, the floating stools continued. Once off the antibiotics, all symptoms came back immediately so now he says he thinks my symptoms were not from bacterial overgrowth ??????? Why then did I feel better on them? Now he wants my stool tested again for fat. I had seen another gastro doctor a few years back that I liked more than this one, so I made an appt to see him in 3 weeks. I am at a loss - worried about the malabsorption though.

meirocco
12-27-2011, 09:06 AM
Yeah i am back on the xifaxan. my sibo has gotten better then worse when off antibiotic. this time around its like its not helping. i have been biopsy and tested for ceiliac, and h-plori. im at a rough spot now. i dont know what to do, very depressed, back to vomiting in am and diarea, not to sound gross but with me the smell is very distinguishable doesnt smell like anything ive pooed before, thats how i know its the sibo. there has to be an easier way. i talked to a nutritionist says she can get it out of me. its getting the 300.00 to pay for for the first visit and 500.00 for the next i just dont have the money. ive also just came off of a potent med ive been on for 10 years AND i dont know if that is playing a role or not, im sure it is at least a little, and the holidays are stressful. Very frustrating isnt it? gut issues suck!! i hope they figure yours out , do you stress alot?

hopefloats36
03-12-2012, 12:57 PM
Hi to meirocco and Twinkie50,
I can relate to your diagnosis and treatment of SIBO and the symptoms you've endured. I endured these symptoms for over ten years. You are not alone. In my humble opinion, many other people who have been told they have IBS, irritable bowel syndrome actually have SIBO, small intestinal bacterial overgrowth and/or Fructose Malabsorption...like me. Just my opinion now...I think what is called IBS is actually just a cluster of symptoms. not a condition.

But, BIG question...what causes the symptoms? You have discovered that you have a condition called SIBO. I have this too. I have Fructose Malabsorption as well...also diagnosed with a breath test...same routine as the one for SIBO. With both conditions, I had the double whammy of horrific symptoms. I am feeling much better at this point. I was first diagnosed with FM and put on the low FODMAP diet. After 6 weeks of feeling better, but not quite there yet, I was tested for SIBO, tested positive and began the treatment of Xifaxin (Rafaximin) 550mg, 3 x's daily for 2 weeks. I went through another round of this antibiotic treatment about 3 months later and am feeling significantly better. I adhere to the low FODMAP diet (and if I cheat...I pay for it immediately)

As a result of all the malabsorption issues that went on I was Vit D, B-12, Calcium, protein, Iron, etc deficient for many years. My levels have come back up and I feel so much healthier. I gained back the weight I lost. (For years, I didn't loose weight...I gained. Eventually I became so tremendously ill with symptoms, I couldn't eat and lost a ton of weight).

I'd be curious to know how those of you with SIBO are doing now. Best wishes!

Twinkie50
03-12-2012, 03:57 PM
Hi to meirocco and Twinkie50,
I can relate to your diagnosis and treatment of SIBO and the symptoms you've endured. I endured these symptoms for over ten years. You are not alone. In my humble opinion, many other people who have been told they have IBS, irritable bowel syndrome actually have SIBO, small intestinal bacterial overgrowth and/or Fructose Malabsorption...like me. Just my opinion now...I think what is called IBS is actually just a cluster of symptoms. not a condition.

But, BIG question...what causes the symptoms? You have discovered that you have a condition called SIBO. I have this too. I have Fructose Malabsorption as well...also diagnosed with a breath test...same routine as the one for SIBO. With both conditions, I had the double whammy of horrific symptoms. I am feeling much better at this point. I was first diagnosed with FM and put on the low FODMAP diet. After 6 weeks of feeling better, but not quite there yet, I was tested for SIBO, tested positive and began the treatment of Xifaxin (Rafaximin) 550mg, 3 x's daily for 2 weeks. I went through another round of this antibiotic treatment about 3 months later and am feeling significantly better. I adhere to the low FODMAP diet (and if I cheat...I pay for it immediately)

As a result of all the malabsorption issues that went on I was Vit D, B-12, Calcium, protein, Iron, etc deficient for many years. My levels have come back up and I feel so much healthier. I gained back the weight I lost. (For years, I didn't loose weight...I gained. Eventually I became so tremendously ill with symptoms, I couldn't eat and lost a ton of weight).

I'd be curious to know how those of you with SIBO are doing now. Best wishes!

Hi - I too have gained weight. I have had "IBS" for a very long time, but something changed with the symptoms 2 years ago when my menopause started - horrific gas and bloating and what sent me to the doctor was my stools started floating - not just occasionally - all the time for 3 mths. I got concerned and when they tested them, they had fat in them - which is not good - I was so scared it was my pancreas - had abdominal ultrasound - which was negative - tested for celiac - also negative. Sent to gastro who did a breath test and I was high positive for SIBO. He says he believes the fat in my stool is from the SIBO but I rarely see anyone posting that as a symptom and even after being treated twice with xifaxan and now I am off refined carbs and sugar, and taking VSL#3 probiotic, I feel better, but stools have not changed one bit. I am seeing the nutritionist in my gastro's office - I am now keeping a food journal and writing down any gut symptoms to see if we can pin point more food sensitivities.

hopefloats36
03-12-2012, 08:53 PM
Hi MaryAnn,
I'm happy to hear from you, but sorry to hear you are still having symptoms. Did you ever have the breath test for Fructose Malabsorption? The FM symptoms are quite similar to those of SIBO. Your doc shouldn't assume that SIBO wasn't your problem. You tested positive for it. Perhaps you are like me and also have something else going on...like Fructose Malabsorption. I would encourage you to make an appointment to have the breath test for it.

The gastly symptoms!!! I can relate to all of them. Yes, the stools would float, oil/fat would sometimes float on top of the toilet water after a BM, some times I would only have what looked like stool sediment in the bottom of the bowl. I was passing my medications/whole undigested pills that I took with my meal! I was the chronic D version so food didn't stay long in my GI tract. Often, I flet like I would passout from weakness after a BM. My BP was also getting low and I would get dizzy throughout the day. The pain associated with all of this...terrible.

Yes, I had fat in my stools as well...it indicates malabsorption as you know. That's when the GI doc did the breath testing to determine the reasons for the malabsorption. Lactose first, then fructose, then 6 weeks later after being on the low FODMAP diet, the bacteria test. That's when I discovered I had FM and SIBO....the double whammy as I like to call it. (You can read up on FM and work the elimination diet to see if any of your symptoms improve. That would certainly indicate another malabsorption issue, but if I were you I'd just go back and have the breath test done for fructose.)

I noticed that you were prescribed the antibiotic Xifaxan 2 x's daily. My doctor insisted on 550mg 3 x's daily for 2 weeks as this is the gold standard treatment. My insurance refused to cover more than 2 x's a day even though the GI doc sent them information from a medical journal about what treatment works. The office gathered up samples for me so I could take the med 3 x's a day. I felt the difference after a few days treatment, and felt significantly better for almost 3 months. Symptoms returned and he re-treated me. That time the insurance agreed to pay for 3 x's a day. I've been doing well since. since you took the antibiotic only 2 x's a day...it may not have been enough for you.

Most of my symptoms now are when I eat a food that's not low FODMAP or eat too much of one....portion sizes makes a huge difference. For example, ripe banana is a low FODMAP/safe food. For me, I can't eat more than 1/2 of a small ripe banana or I'll experience gastly symptoms.

Just last Friday I met with a dietician/nutritionist in the Boston area who is well versed with FM and SIBO. I traveled 2 hours to get to her. I was so relieved to find someone so knowledgable after working on my own with the low FODMAP diet (very restrictive and can be confusing as many foods have not been tested as of yet and some info out there is outdated) for about 8 months. I now have the latest safe/unsafe food information now so I expect to be feeling even better very soon. She thinks I might have a gluten sensitivity so I just began to eliminate it. We'll see what happens there. By the way, she had SIBO was treated once and it's never come back. Some people have all the luck!!! lol

In terms of the SIBO, I am not taking any probiotics. Not sure that I want to put more bacteria into my gut considering I don't know which ones are the culprits to begin with. The nutritionist agreed with me at this point while we are trying to fine tune the diet, make sure nothing else is going on, etc.

What is your location? I am in CT, USA.

Twinkie50
03-13-2012, 03:17 AM
Hi MaryAnn,
I'm happy to hear from you, but sorry to hear you are still having symptoms. Did you ever have the breath test for Fructose Malabsorption? The FM symptoms are quite similar to those of SIBO. Your doc shouldn't assume that SIBO wasn't your problem. You tested positive for it. Perhaps you are like me and also have something else going on...like Fructose Malabsorption. I would encourage you to make an appointment to have the breath test for it.

The gastly symptoms!!! I can relate to all of them. Yes, the stools would float, oil/fat would sometimes float on top of the toilet water after a BM, some times I would only have what looked like stool sediment in the bottom of the bowl. I was passing my medications/whole undigested pills that I took with my meal! I was the chronic D version so food didn't stay long in my GI tract. Often, I flet like I would passout from weakness after a BM. My BP was also getting low and I would get dizzy throughout the day. The pain associated with all of this...terrible.

Yes, I had fat in my stools as well...it indicates malabsorption as you know. That's when the GI doc did the breath testing to determine the reasons for the malabsorption. Lactose first, then fructose, then 6 weeks later after being on the low FODMAP diet, the bacteria test. That's when I discovered I had FM and SIBO....the double whammy as I like to call it. (You can read up on FM and work the elimination diet to see if any of your symptoms improve. That would certainly indicate another malabsorption issue, but if I were you I'd just go back and have the breath test done for fructose.)

I noticed that you were prescribed the antibiotic Xifaxan 2 x's daily. My doctor insisted on 550mg 3 x's daily for 2 weeks as this is the gold standard treatment. My insurance refused to cover more than 2 x's a day even though the GI doc sent them information from a medical journal about what treatment works. The office gathered up samples for me so I could take the med 3 x's a day. I felt the difference after a few days treatment, and felt significantly better for almost 3 months. Symptoms returned and he re-treated me. That time the insurance agreed to pay for 3 x's a day. I've been doing well since. since you took the antibiotic only 2 x's a day...it may not have been enough for you.

Most of my symptoms now are when I eat a food that's not low FODMAP or eat too much of one....portion sizes makes a huge difference. For example, ripe banana is a low FODMAP/safe food. For me, I can't eat more than 1/2 of a small ripe banana or I'll experience gastly symptoms.

Just last Friday I met with a dietician/nutritionist in the Boston area who is well versed with FM and SIBO. I traveled 2 hours to get to her. I was so relieved to find someone so knowledgable after working on my own with the low FODMAP diet (very restrictive and can be confusing as many foods have not been tested as of yet and some info out there is outdated) for about 8 months. I now have the latest safe/unsafe food information now so I expect to be feeling even better very soon. She thinks I might have a gluten sensitivity so I just began to eliminate it. We'll see what happens there. By the way, she had SIBO was treated once and it's never come back. Some people have all the luck!!! lol

In terms of the SIBO, I am not taking any probiotics. Not sure that I want to put more bacteria into my gut considering I don't know which ones are the culprits to begin with. The nutritionist agreed with me at this point while we are trying to fine tune the diet, make sure nothing else is going on, etc.

What is your location? I am in CT, USA.
Oh I probably should have been more specific in terms of doctors!! I forgot I had posted previously - the first GI I went to, after my initial round of xifaxan, said it wasn't SIBO because my symptoms came back within a week or so of stopping the antibiotic!!! Even though I had tested high positive on the test - that alone sent me to another GI doctor. The second one is positive my symptoms are from SIBO which is why he re-treated me, then has me seeing his nutritionist for diet changes and I then started the probiotic also!!!

Twinkie50
03-13-2012, 03:29 AM
Hi MaryAnn,
I'm happy to hear from you, but sorry to hear you are still having symptoms. Did you ever have the breath test for Fructose Malabsorption? The FM symptoms are quite similar to those of SIBO. Your doc shouldn't assume that SIBO wasn't your problem. You tested positive for it. Perhaps you are like me and also have something else going on...like Fructose Malabsorption. I would encourage you to make an appointment to have the breath test for it.

The gastly symptoms!!! I can relate to all of them. Yes, the stools would float, oil/fat would sometimes float on top of the toilet water after a BM, some times I would only have what looked like stool sediment in the bottom of the bowl. I was passing my medications/whole undigested pills that I took with my meal! I was the chronic D version so food didn't stay long in my GI tract. Often, I flet like I would passout from weakness after a BM. My BP was also getting low and I would get dizzy throughout the day. The pain associated with all of this...terrible.

Yes, I had fat in my stools as well...it indicates malabsorption as you know. That's when the GI doc did the breath testing to determine the reasons for the malabsorption. Lactose first, then fructose, then 6 weeks later after being on the low FODMAP diet, the bacteria test. That's when I discovered I had FM and SIBO....the double whammy as I like to call it. (You can read up on FM and work the elimination diet to see if any of your symptoms improve. That would certainly indicate another malabsorption issue, but if I were you I'd just go back and have the breath test done for fructose.)

I noticed that you were prescribed the antibiotic Xifaxan 2 x's daily. My doctor insisted on 550mg 3 x's daily for 2 weeks as this is the gold standard treatment. My insurance refused to cover more than 2 x's a day even though the GI doc sent them information from a medical journal about what treatment works. The office gathered up samples for me so I could take the med 3 x's a day. I felt the difference after a few days treatment, and felt significantly better for almost 3 months. Symptoms returned and he re-treated me. That time the insurance agreed to pay for 3 x's a day. I've been doing well since. since you took the antibiotic only 2 x's a day...it may not have been enough for you.

Most of my symptoms now are when I eat a food that's not low FODMAP or eat too much of one....portion sizes makes a huge difference. For example, ripe banana is a low FODMAP/safe food. For me, I can't eat more than 1/2 of a small ripe banana or I'll experience gastly symptoms.

Just last Friday I met with a dietician/nutritionist in the Boston area who is well versed with FM and SIBO. I traveled 2 hours to get to her. I was so relieved to find someone so knowledgable after working on my own with the low FODMAP diet (very restrictive and can be confusing as many foods have not been tested as of yet and some info out there is outdated) for about 8 months. I now have the latest safe/unsafe food information now so I expect to be feeling even better very soon. She thinks I might have a gluten sensitivity so I just began to eliminate it. We'll see what happens there. By the way, she had SIBO was treated once and it's never come back. Some people have all the luck!!! lol

In terms of the SIBO, I am not taking any probiotics. Not sure that I want to put more bacteria into my gut considering I don't know which ones are the culprits to begin with. The nutritionist agreed with me at this point while we are trying to fine tune the diet, make sure nothing else is going on, etc.

What is your location? I am in CT, USA.
You did have fat in your stool??? !! You have no idea how much better that makes me feel !!! LOL .... I think I still do, because my stools still float - however, they look totally normal - I have never had diarrhea. I have to say though, since starting this VSL#3 probiotic, I am having BM's 4-5 times a week which is a miracle for me!!! I have always had constipation...it could also be the fact that I have eliminated most sugar and refined carbs but I think I am still eating too many other carbs. I guess my food journal will help the nutritionist determine that. I have also lowered my intake of dairy as I found that was bothering me too. I mentioned to her being tested for lactose and fructose malabsorption - she wanted me first to try the diet changes and see how the probiotic worked. She said she will re-test me for bacterial overgrowth again soon in the future. I am in NJ - about 5 hours from Boston so that would be too far for me !!! My GI doctor was adament about getting me to "poop" more often as having all that sitting in your colon is not healthy. I was always having to take stool softeners and senecot, etc. I have not taken any of that since starting the probiotic 6 weeks ago and my stomach feels so much better because I am eliminating all that nasty stuff faster!!! MaryAnn

hopefloats36
03-13-2012, 03:01 PM
All righty then...I made you feel better! I never knew that having fat in my stool would be something to have in common with someone else!!! Ha, ha. As I was reading your response I was laughing so hard because our GI symptoms don't make the loveliest of conversation around most people. So it's nice to know that someone wants to hear about it and can relate to it! lol

Prior to lap surgery to remove my gallbladder and repair a hiatel hernia I had chronic constipation as well. Then came the chronic dibilatating diarrhea. I saw multiple docs including GI docs. Everyone asked if I was malabsorbing, yet no on did any tests to determine if I was. The low levels of vitamins and iron should have been concern enough, but I seemed to be the only one concerned. At least now I know what is causing my GI symptoms, I'm able to do something about it, and although I'm not out of the woods yet, I feel remarkably better.

I'm glad your BM's are better regulated with the probiotic. It certainly seems to be making a positive difference there. Good luck with the dietician. Mine gave me the name of the doc whose written all the SIBO information which I plan to look at when I get some time. It's Dr. Mark Pimentel from Cedar-Sini. Can't remember if you said you knew of him.

Best wishes MaryAnn and keep in touch. Let us know how you make out with your upcoming appts.

Twinkie50
03-14-2012, 12:16 PM
All righty then...I made you feel better! I never knew that having fat in my stool would be something to have in common with someone else!!! Ha, ha. As I was reading your response I was laughing so hard because our GI symptoms don't make the loveliest of conversation around most people. So it's nice to know that someone wants to hear about it and can relate to it! lol

Prior to lap surgery to remove my gallbladder and repair a hiatel hernia I had chronic constipation as well. Then came the chronic dibilatating diarrhea. I saw multiple docs including GI docs. Everyone asked if I was malabsorbing, yet no on did any tests to determine if I was. The low levels of vitamins and iron should have been concern enough, but I seemed to be the only one concerned. At least now I know what is causing my GI symptoms, I'm able to do something about it, and although I'm not out of the woods yet, I feel remarkably better.

I'm glad your BM's are better regulated with the probiotic. It certainly seems to be making a positive difference there. Good luck with the dietician. Mine gave me the name of the doc whose written all the SIBO information which I plan to look at when I get some time. It's Dr. Mark Pimentel from Cedar-Sini. Can't remember if you said you knew of him.

Best wishes MaryAnn and keep in touch. Let us know how you make out with your upcoming appts.
As I was typing my last message to you about how often I have BM's, I was laughing too - thinking how can I be so comfortable talking about my bathroom habits to someone I don't even know!!! But, people who "poop" everyday with complete normalcy, just have no idea how lucky they are !!!!!

I do have Mark Pimentel's book - my dietician gave it to me. She agrees with SOME of his thoughts and methods, not all. I think with the SIBO its a trial and error to see what helps or makes us worse. Everyone is different. Hope you continue to feel well - :cool: MaryAnn

hopefloats36
03-14-2012, 12:46 PM
Hi MaryAnn, Oh those LUCKY ones! Don't we just love them. lol

I made the time today to check out Dr. Pimentel's site. I felt compelled to order the book on ******. I don't know if my GI doc has actually read it so I'll share it with him the next time I see him. I'm even inclined to share it with my internist who didn't seem to have knowledge of FM and SIBO when I told him I was diagnosed with both. Education, it's a wonderful thing!

Twinkie50
03-14-2012, 01:17 PM
Hi MaryAnn, Oh those LUCKY ones! Don't we just love them. lol

I made the time today to check out Dr. Pimentel's site. I felt compelled to order the book on ******. I don't know if my GI doc has actually read it so I'll share it with him the next time I see him. I'm even inclined to share it with my internist who didn't seem to have knowledge of FM and SIBO when I told him I was diagnosed with both. Education, it's a wonderful thing!

Let me know your thoughts on his book after you read it ....!!!

Gracielou84
03-26-2012, 12:18 PM
I have had severe gi issues for the last 18 months going between diarrhoea and constipation! I have always had loads of gas as long as I remember. I have had lots of nausea and vomiting that I'm on Zoferon for can manage to eat and drink ok at other times to compensate for the vomiting. I have a nuclear breath test a week today as they have ruled out most things. Do any of you have so much pain and if so what can you take! Or does pain go away with antibiotics? What interested me in the post was the deficiencies as I'm low on b12 and folate.
Advice appreciated

Twinkie50
04-02-2012, 03:50 AM
I have had severe gi issues for the last 18 months going between diarrhoea and constipation! I have always had loads of gas as long as I remember. I have had lots of nausea and vomiting that I'm on Zoferon for can manage to eat and drink ok at other times to compensate for the vomiting. I have a nuclear breath test a week today as they have ruled out most things. Do any of you have so much pain and if so what can you take! Or does pain go away with antibiotics? What interested me in the post was the deficiencies as I'm low on b12 and folate.
Advice appreciated

Hi. What is a nuclear breath test? MaryAnn

hopefloats36
07-12-2013, 03:42 PM
Hi MaryAnn/Twinkie50,
I'm checking in again as it's been a while. How have you been managing since we last chatted? I've done quite well, but over the last month or so I believe the SIBO's reared it's ugly head again. I just started another round of Xifaxin again 3 x's a day. I HOPE it does the trick. I continue with the low-FODMAP diet with success. There are been some new foods tested that I get to eat so there is a bit more variety in my diet....yeah! Still feel deprived though since everyone else gets to eat whatever without any difficulty...;-(
Also since we last chatted, I have gained weight. I"m now 25lbs heavier than I should be....:-( So apparently, even though I'm on this highly restrictive diet, I'm still managing to eat too much! I really must be more disciplined.
So how are you doing? I hope better. Touch base with me when you have a moment.
Blessings!

Twinkie50
07-13-2013, 06:21 AM
[QUOTE=hopefloats36;5198819]Hi MaryAnn/Twinkie50,
I'm checking in again as it's been a while. How have you been managing since we last chatted? I've done quite well, but over the last month or so I believe the SIBO's reared it's ugly head again. I just started another round of Xifaxin again 3 x's a day. I HOPE it does the trick. I continue with the low-FODMAP diet with success. There are been some new foods tested that I get to eat so there is a bit more variety in my diet....yeah! Still feel deprived though since everyone else gets to eat whatever without any difficulty...;-(
Also since we last chatted, I have gained weight. I"m now 25lbs heavier than I should be....:-( So apparently, even though I'm on this highly restrictive diet, I'm still managing to eat too much! I really must be more disciplined.
So how are you doing? I hope better. Touch base with me when you have a moment.
Blessings!
Hi - how are you? Well the last time I was treated with the xifaxan (until recently) was June of 2012. I also went gluten free. Well, I had 8 months of NO SYMPTOMS!!! Going gluten free has been a huge help to me with my stomach issues and my fibromyalgia. Then in Feb. of this year, my constipation started getting bad again. Then in April I had a diverticulitis infection. Then all the SIBO symptoms started to come back. I had 2 weeks left of the xifaxan and took it - felt somewhat better and then there was a horrible stomach virus going around(no vomiting - just diarrhea), and I was so sick for over 2 weeks. My son got it too and in talking to other people, it was a bad one. I am still not right, but a bit better. Doctor did run stool tests again which all came back negative. Now its really just my IBS flaring up - I am not having the SIBO symptoms at the moment. Its always something!!! But, apparently I have a gluten intolerance because I feel so much better off the gluten. This month is a year and I have NEVER cheated - not once!! Its easy to stick to something when it does make you feel better. My head feels clearer and my pain from my fibromyalgia is lessened, so all good. The stomach issues just seem to always plague me though.
But, I would say the gluten free/low sugar diet is good for me. How about you? What started yours up again?? !!!! MaryAnn

hopefloats36
07-14-2013, 06:08 AM
:confused:I think too much SUGAR was the culprit....a big feeder for SIBO and I should have known better. Normally, I am quite careful not to exceed 24grms of sugar per serving of whatever sweet I might indulge in. I can't have honey, molassas, and artificial sweetners except for natural Stevia. Well, I slipped up in that my willpower to stay away from chocolate got the best of me and I went through a self-indulgent period...let's just say :eek: I won't let that happen again....it's definately not worth it.
I did my trial of g-free with the nutritionist but don't honestly know if I have a gluten intolorance. It's so hard to figure out when you are restricting so much. If there's anything you learned along the way that you think I should know about hidden gluten, please tell me.
I can't eat wheat products with Fructose Malabsorption as wheat is a killer for us and I have NO problem avoiding it. Due to being on the low-FODMAP diet, I personally avoid most processed foods so I know in that effort I am avoiding some gluten which they seem to put in everything these days. I can eat a small amount of oatmeal and buy the Bob's Red Mill GF. I buy Udi's GF frozen white sandwich bread (makes great grilled cheese) and take out a slice or two as needed. I recently bought a GF bread from a GF bakery I came across. It made great french toast, but it has a crumbly texture and I don't like it for sandwiches.
I read labels to find things that violate the low-FODMAP diet and that has just become a way of life for me. I'm sure you relate very well to reading every label! I avoid everything with high fructose corn syrup...I've noticed that someone is eliminating it from their products...saw a commercial for ketchup advertising that they've eliminated HFCS...forget which company though. I haven't had ketchup is over 2 years! Chances are there is something else in that product I can't have. Sigh!
If you have Fructose Malabsorption, you can't eat onion or garlic which is included in some form in many processed foods. If there's something I'm not sure about, I just don't buy it or eat it. I have a husband and son I buy and cook for, so often I am making something seperate for myself so they are not deprived of something tastier.
One of the hardest things for me is keeping to the small portion sizes of allowed fruits and vegetables. 1/4 C of corn...really, why bother to eat corn then....lol! 1/3 C of sweet potato....that's a challenge for me not to eat a bit more. I haven't had an apple, pear, peach or cherry in more than 2 years. Yikes! I miss them so much. But, like you said sticking to what works so you don't get sick make the effort worthwhile. You just have to be good...:angel:

After a few days on the antibiotic, I am feeling better already. I take it 3x's a day for 2 weeks. I hope the SIBO stays at bay for quite a while afterwards.

I'm sorry you went through a bout of sickness, but glad to hear that you are doing better and hope it is long lasting for you! I'm happy for you that you figured out that you have the gluten sensitivity. Like I said, if there is anything you think I might not know about avoiding hiddden gluten, let me know. Thanks for checking in and all the best to you!!! :wave: Karen

Twinkie50
07-14-2013, 04:04 PM
Hi Karen - well I have no secrets with the gluten free stuff!!! I just do not eat anything unless it says gluten free on it!! Keeps me away too from most processed foods - although I do eat gluten free snacks and I guess they are considered somewhat processed too??? I cannot imagine being fructose intolerant either. Apples settle ok with me sometimes and othertimes give me an upper stomach ache sometimes for 24 hours. I love the Udi bread too - but I find that most of the gluten free breads, corn muffins, english muffins MUST be toasted.

I eat alot of eggs, chicken, lots of fish - no pork (gives me belly ache too) shrimp. and I am addicted to kale!!!! I eat it sauteed at least 3 times a week along with roasted vege's (which seem to be the best way to cook for me). I am also off of dairy - so I use the lactaid milk, cottage cheese; even ice cream - its really good. But, the ice cream is only a treat because it does have sugar!!!! I cheat sometimes and eat dark chocolate - I love chocolate and cannot give it up entirely!!!!

I just bought beautiful cherries today and will eat some tonight - hopefully will be ok - never had a problem before and I eat tons of watermelon too. I know its all loaded with natural sugar, but I love summer fruits and I seem to tolerate them ok.

Amazing how that xifaxan helps you feel better within 3-4 days right? I imagine I will be off and on it for the rest of my life. I have a husband and son I cook for too!! They love alot of the gluten free products too, so that helps!!!

Glad your feeling better on the xifaxan - keep in touch!!!! MaryAnn

laineyk
07-24-2013, 12:22 PM
HI Karen and Maryann (met Twinkie on another post ;) )

I too am a sufferer of SIBO but have yet to be given Xifaxin, waiting to get into new GI (Aug 2nd) call everyday hoping for a cancellation to move that date up since I am literally in agony daily.

I have read as much as one person can possibly read up on a subject and what I am realizing is that MOST ppl never get rid of this completely! so scary

I am always looking for support because no one I know has ever heard of this so therefore can not relate at all

I am trying my hardest to stay away from carbs etc. I also tried ECPO (enteric coated peppermint oil) but that hasn't helped at all.

so if you don't mind me whining may I join the group? :confused:

Lainey

Twinkie50
07-24-2013, 12:59 PM
Hi Lainey - got an email that you had posted here!!! Sure you can join us in our agony!!! Keep the faith that this new GI will test you properly for the SIBO and give you the xifaxan. Just remind me again...have you ever seen a GI doctor or just a regular MD???? I know alot of GI doctors who don't even believe in or know how to diagnose SIBO. Hope your guy isn't one of them... Just remember, there is a light at the end of the tunnel and you will feel better. Will you ever get rid of this completely? I have my doubts personally....but there are ways to control it I think. Its all trial and error - they do say carbs and sugars are evil for SIBO and I do believe that. Its hard though to completely eliminate them though. Keep in touch!!!

laineyk
07-24-2013, 02:32 PM
Maryann, yes I had been seeing the same GI for some time now. He had given me a endoscopy with biopsy that showed I had H-pylori back in April.

was treated for that with Biaxin, amox. and Prilosec BID for 14 days. Had to wait 4 weeks to have stool sample to see if HP was eradicated and it was but I was still sick and losing wt.

so he ordered a CT scan and the HBT that's when I was diagnosed with SIBO.

problem is when my insurance required a report from Dr as to the use of Xifaxin, he dropped the ball and never did that, instead he prescribed Biaxin

when I found out from my insurance company that the reason I was not given the Xifaxin was due to the fact that neither the Dr or his staff got back to them made me enraged.

Biaxin isn't even used for SIBO!!!!!!! and its been "outlawed" in the UK for its severe side effects!!!

Never cared for this guy so Being a nurse I asked all my nurse friends who was the best in my area and they all came back with the same answer...thus the wait to get in. :mad:

Today was a real bad day. Gut hurt all day, haven't been able to do much of anything. UGH!!!!!!

Twinkie50
07-24-2013, 04:36 PM
Well it sounds like the wait will be worth it!!! I have never heard of Biaxin used for SIBO either. Keep in touch.

hopefloats36
07-25-2013, 10:16 AM
Laineyk,
Sorry for your terrible tummy troubles, but WELCOME to this place where others completely understand your situation. I hope your appt goes well with the next GI doc. My doc sent information from a medical journal describing Xifaxin as the treatment for SIBO when my insurance co denied coverage for it. It took forever, but payment was finally approved. I had to go through this process 3x's when I needed to be retreated for SIBO....so YES, the SIBO never really goes away for good. I usually get several good months after treatment, then the symptoms begin to come back. I do think being careful with your diet is a good idea. SIBO thrives on sugar...so avoid it as much as you can.
I am just finishing up my final doses of Xifaxin for this last treatment. It's strange, I felt so much better just after 2-3 days treatment which has been the norm for me. Then I went through 4-5 days of pretty awful diarrhea and pain for no reason that I can think. Go figure. :-( Anyway, I am feeling better now as I am almost finished with the prescription. I will be more careful with sugar consumption and see how many months of relief I get this time. I have a TAZA Stone Ground 70% Dark Chocolate candy bar squirreled away that I am going to attempt to avoid. Wish me luck! ;-)
Keep us informed as to how the appt goes, and how you are feeling. Best wishes and many blessings!

laineyk
07-26-2013, 06:21 AM
Karen, thank you for sharing your experience with the Xifaxin...ugh!!! I am in such agony with this that I just feel like I cant wait another day to have total relief.

I do notice an extreme difference when I eat any sugar and gluten.
for instance yesterday I had a really good day, not much pain and burping was at a level 4-5 instead of a 55+ ;)

the day b4 all I ate was meat and veggies and an orange.

Last night I caved and had animal crackers and grahm crackers...well today my gut is churning and I am belching horribly :( so I have to stop fooling myself into thinking I can EVER eat like I used to.

so how long did it take b4 insurance finally ok'ed the script? I have been waiting for well over a month from when I was given Biaxin...idiot GI who gives Biaxin for SIBO? no one that I have read on.

God bless you and I will lift you both in prayer that you will have relief from the monster that lives inside us

Lainey

Twinkie50
07-26-2013, 11:13 AM
Lainey - I did not have alot of belching with the SIBO - have you been tested for GERD or Hiatal Hernia? Not sure if I remember if you said you were given an endoscopy...not saying belching cannot be from SIBO, but it seems to be a prevalent symptom with you. I had stomach pains - especially after eating - and horrible passing of gas - LOUD and tons of it ...it was ridiculous. But no belching. How about you Karen? Just curious...

hopefloats36
07-26-2013, 06:19 PM
OMG ladies...I had EVERY symptom there was to have. Remember I also was diagnosed with Fructose Malabsorption, and SIBO....AND even though I tested negative for lactose intolerance.....I AM Lactose Intolerant!!! One small scoop of ice cream, regular milk, or soft cheese and I'm running to the bathroom in agony. Sorry!
I experienced lots of belching, and let's just say, gas from both ends. My husband calls me a noise machine! Ha, ha! Really. Not something I would say if it wasn't true!

Lainey, it took at least a month to get my RX approved by the insurance co. Just hang in there. I trust when you finally get Xifaxin you will get some relief. This is just a terrible situation that we must deal with. Hang in there.

hopefloats36
07-26-2013, 06:22 PM
OMG ladies...I had EVERY symptom there was to have. Remember I also was diagnosed with Fructose Malabsorption, and SIBO....AND even though I tested negative for lactose intolerance.....I AM Lactose Intolerant!!! One small serving of ice cream, regular milk, or soft cheese and I'm running to the bathroom in agony. Sorry!

I experienced lots of belching, and let's just say, gas from both ends. My husband calls me a noise machine! Ha, ha! Really. Not something I would say if it wasn't true!

Lainey, it took at least a month to get my RX approved by the insurance co. Just hang in there. I trust when you finally get Xifaxin you will get some relief. YOu must press your doc to do whatever is necessary to get the proper treatment. Don't be afraid to make the phone calls and get it to happen. This is just a terrible situation that we must deal with, but we are the ones to suffer, so we must be assertive in getting what we need. Drat those ins. co's. Hang in there.

Twinkie50
07-26-2013, 07:04 PM
Well there ya go - Karen burped alot!!! I am SO THANKFUL for the ins. I have. I got my xifaxan paid for every single time no questions asked. And have had numerous refills on it and only paid $10.00 for each prescription. I know its a very expensive antibiotic.

laineyk
07-27-2013, 05:31 AM
Belching/burping is one of the TOP symptoms actually. No hernias or Gerd, did have endoscopy.

so if I have to wait another month or more...what do I do? Sometimes I take a pepto bimol and it actually helps some? Not sure why because the pain is from the small intestine with SIBO.

I think I have tried licorice root and peppermint oil and they do nothing for me.

Another question; why does my symptoms seem to be worse in the morning? has that been the case for either of you?

and again I need to know what, if any benzo you take, does it help and how much how often

I take klonopin and it has started to give me relief for the stomach spasms and anxiety

hopefloats36
07-27-2013, 07:37 AM
Maryann,
You are have a great ins plan. Which one is it? To NOT have to be worried about what's covered by ins when you are already concerned about your heal and getting well is a blessing, and the way it should be for all Americans. Yikes! Don't let me go there...:-0

Lainey, I wish I knew what to tell you about how to survive while you are waiting for the proper treatment. I just don't know. Didn't know what to do for myself either. Nothing else I tried to make things better worked for me either. The enteric coated peppermint did not make a difference. Can't recall if I tried licorice, but noticed that I have some licorice tea in the cabinet. I should probably throw that out...don't know how long it's been there! No benzos so can't give any feedback there.

Have you checked out Dr. Pimental's website regarding SIBO? We discussed him here in this thread. You might find somethere...or learn more about SIBO which would be a good thing. He's an authority on the subject, which is hard to find. I REALLY hope your new GI doc is very familiar with SIBO and gets right to helping you feel better. You might also want to call his office and talk with one of the nurses to get a better handle on what his experience is prior to going in for your appointment. At least it will make you feel like you're doing something....preparing to have a good appointment. Have you also requested your previous records...the doc will want those and you want to make sure everything is in place prior to your appt.

I can't thing of anything else that might help you. You've got our sympathy though....does that help at all? :jester: Just trying for a smile here!!!
Karen

Twinkie50
07-29-2013, 03:39 PM
Very good suggestions Karen!!! Good luck to you Lainey - only a few more days to wait right ????

MaryAnn

laineyk
08-06-2013, 10:02 AM
well saw new GI last Friday. really liked him except he didn't want to retest me for SIBO!!!??? totally believes I have IBS and Fibro too~

My symptoms have not changed one bit after taking Biaxin, so I believe that I still have SIBO. have put in a call yesterday and today requesting to be retested.

I am so weak most of the time and although ppl tell me a look great (after losing 50lbs who wouldn't?) I feel like I am at deaths doors most days

He gave me the FODMAP diet to use but I pretty much have been compliant with it already

He said that the fact that when I told him that pepto bismol helps with my pain, he said that's a strong indication that its IBS.

When I had the HBT I went to 88 from 2 in 30 minutes!!! the highest that the computer will read is 80...so I had/have it pretty severe.

so waiting on the GI to set up a HBT again...pray its soon

do either of you feel off balanced and unfocused with this? I feel like I could tip over and am in a fog all the time.

hopefloats36
08-06-2013, 05:43 PM
Best wishes Maryann. Praying for better health for you.

hopefloats36
08-06-2013, 05:53 PM
OK, :) so glad you had your appt and that you liked the doc. Yes, I was 'off balance' to say the least. I had awful brain fog. No memory, sleeping disturbances didn't help either. When you're not getting the proper nutrition because what you eat is being malabsorbed you're health suffers in every way imaginable.
When you stated that you feel as if you are at death's door...that's exactly how I felt too. I was so sick, weak fatigued, not eating because the symptoms were killing me. I think you know exactly what I mean. I had lost about 45 lbs. I needed to lose weight, but not 45 lbs! I went from a size 16/18 to 8/10. I never wore an 8 or 10 when I was very slim in high school. I did not look healthy and no one was telling me I looked good. In fact, I would shock people that had not seen me in a while. I looked like death warmed over and felt worse than I looked.
Just to reiterate...I tested + for Fructose Malabsorption...went on the low FODMAP diet...6 weeks later I felt better, but was still having symptoms. Doc had me come back in for HBT for SIBO. Like you I tested with very high numbers. Was prescribed the Xifaxin and within 2-4 days I was finally feeling like I was on my way....:-)
My doc said that I had the double whammy which was why I was so sick. It's likely you are in the same situation. I wish you LUCK. Remember you have to advocate for your health. Before you see your doc for the HBT, research who in your area has been trained on the low-FODMAP diet. You really need the expertise and guidance of a trained nurtitionist to ensure you have all the latest FODMAP info and are getting the proper nutrients. I didn't start to feel 'in balance' until I had been following the advice of the nutritionist. I'm telling you this in case your ins company requires your GI doc to write you a consult. Do your homework before you see the do and tell him you need a consultation with a dietican.
One other thing....because I was so weak and sick when I had the HBT...I became very ill after the testing. I almost passed out and had severe GI pain from the test dosing. Have someone drive you to and from your appt and stay with you...just in case. It was a nightmare for me! I wish I knew to have someone come with me.
Here's my follow-up since I finished this last tx. I'm doing better! :cool: I don't know why I had problems while I was taking the tx this time, but it seems to have worked for m now that I've finished up with the meds. I do feel normal again. Hoping that it lasts for 4-6 months for me this time. By the way, I haven't eaten that chocolate candy bar yet!!! Was that hard for me to avoid it? Surprisingly NO, mostly because I'm afraid to ruin things with the sugar. So for now, I'm feeling better and am motivated to do all the right things so I can have the longest relief period from the awful SIBO symptoms.
Best wishes Maryann. Praying for better health for you.

laineyk
08-07-2013, 04:45 AM
THANK YOU for taking the time to tell me your hx. It seems the old adage, "misery loves company" is true in some aspects.

I just feel better knowing that I am not alone and others have felt this way too.

I will start googling more on FODMAP, and trying to find someone who knows what their talking about in this department. we have a HUGE nature store called Nature Thyme and they have everything under the sun there, also free consultations with specialists in holistic healing. will go today and see what I can find out.

do you retest after treatment or because symptoms have been abated you wait it out? See I still feel exactly the way b4 taking Biaxin, therefore I believe I still have SIBO. And who ever heard of taking Biaxin for SIBO anyways?

Prayers to both of you and God Bless, Lainey

hopefloats36
08-07-2013, 06:28 AM
Your welcome!

The only treatment that works for SIBO at this time is Xifaxin. Too bad the doc put you on Biaxin because it only delayed getting you to treatment which translates to unnecessary suffering.

No, I haven't retested (HBT) since the original testing 2 years ago. Don't know if the doc would want to retest later on though. If SIBO never really goes away, then retesting seems redundant to me, but I know it's the docs decisions whether to or when to retest.

You will probably not find anyone in a health/natural store who knows about Fructose Malabsorption and the low-FODMAP diet, let alone been properly trained to provide consultation. My nutritionist may be able to recommend someone in your area whose been through the training from Monash University in AU. My nutritionist is Kate Scarlata from Boston, MA. In combination with a nutritionist from Maine they have spearheaded training for other nutritionists in the low-FODMAP diet. I'm thinking she might be able to point you in the right direction. I'm not allowed by forum rules to post her website her. She will tell you what it is. You will learn a lot from her site and blog....which has been so valuable to many.

Blessings!

laineyk
08-23-2013, 05:21 AM
Hi, just wanted to update, I had another HBT, actually DEMANDED it be done and to my shock it as negative!

GI says its all IBS now. well all I know is IBS feels just like SIBO as far as I can tell.

I am trying the FODMAP diet and have had some success so far. Last night I ate "animal crackers" and this morning my gut is in pain and loose stools....ugh

I believe I have Sjorgens also, have had Dry Eye for years now and as I age and gone through menopause its worse.

I will be seeing a MD fro possible Fibromyalgia in November too, It seems that since my gut issues my body and mind have gone to pieces

I am so scared that someone is missing something and I will never feel "good" again

Twinkie50
08-23-2013, 08:38 AM
Hi, just wanted to update, I had another HBT, actually DEMANDED it be done and to my shock it as negative!

GI says its all IBS now. well all I know is IBS feels just like SIBO as far as I can tell.

I am trying the FODMAP diet and have had some success so far. Last night I ate "animal crackers" and this morning my gut is in pain and loose stools....ugh

I believe I have Sjorgens also, have had Dry Eye for years now and as I age and gone through menopause its worse.

I will be seeing a MD fro possible Fibromyalgia in November too, It seems that since my gut issues my body and mind have gone to pieces

I am so scared that someone is missing something and I will never feel "good" again

Hi. Just something to chew on...!! If you are trying a new diet (and I have heard lots have had great success with FODMAP and that other diet...name escapes me now),really stick to it for a long time. NO CHEATING!! You will never know for sure that its working unless you do. When I went gluten free over a year ago, I prepared a month ahead of time for it and have not cheated once since then. I knew immediately it was going to help me. Oh - I think that other diet is simple carbohydrate diet or something like that. IBS is not always food related either. Stress and other illnesses also play havoc on you when you have IBS, so don't always believe its the food you are eating. Only way to know is elimination of certain foods and wait and see. And also figuring out mentally how to help yourself. Yoga, meditation, therapy. All those things play an important part in tackling IBS and Fibro. Took me many years to figure that out. I was diagnosed over 20 years ago with Fibro. Keep in touch. You will feel better!!!!!!!!!! Oh and, I have read that Xifaxan can help IBS symptoms too - would your GI doctor let you at least try 2 weeks of it?? Its worth asking. MaryAnn

laineyk
08-23-2013, 08:48 AM
I really do need to find someway to bring anxiety down, I have no reason to be anxious...Just GAD. I am seeing my P/doc on Monday to discuss the possibility that the klonopin is making my stomach worse. Just scared to go to Xanax since its not as long acting.

I did a yoga class once (daughters BF teaches it) and loved it, guess I should start going every week. I do walk or bike everyday.

I am not going to take any more antibiotics and just try to stay with the diet for awhile.

How are you doing Maryann? Hows your tummy? Do you do yoga? my meditation is prayer and it does help but I just have this awful unsettled feeling constantly. I ache all over, my eyes are as dry as the savanna dessert, and they burn, headaches....I'm just a total mess

Twinkie50
08-23-2013, 12:26 PM
I really do need to find someway to bring anxiety down, I have no reason to be anxious...Just GAD. I am seeing my P/doc on Monday to discuss the possibility that the klonopin is making my stomach worse. Just scared to go to Xanax since its not as long acting.

I did a yoga class once (daughters BF teaches it) and loved it, guess I should start going every week. I do walk or bike everyday.

I am not going to take any more antibiotics and just try to stay with the diet for awhile.

How are you doing Maryann? Hows your tummy? Do you do yoga? my meditation is prayer and it does help but I just have this awful unsettled feeling constantly. I ache all over, my eyes are as dry as the savanna dessert, and they burn, headaches....I'm just a total mess

I do yoga yes...just started recently again and it does make you feel mentally better. Also doing guided meditation - still need to get into a better schedule of more ME time...us women never seem to give that to ourselves enough. I have severe dry eye too - really bad especially in my right eye but it comes and goes just like all my fibro/stomach symptoms.