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The Role Of Sibo In 'auto-immune' Disease.........


AliB

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AliB Enthusiast

Interesting article on the links between SIBO (small intestine bacterial overgrowth) and 'autoimmune' diseases including Celiac and Diabetes.

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Funny, he mentions restless leg syndrome which is a kind of ataxia. Along with IBS-D which is also mentioned, that was an issue for me for years until I dumped gluten. But it does kind of beg the question - is the problem all down to gluten, or is it more a reaction issue between the gluten and the pathogenic bacteria?

When there are people out there who have the Celiac markers yet do not have any issues with gluten, could it purely be because they do not have SIBO? Something has to be different.

Certainly the high-carbohydrate Western diet may contribute to the migration of pathogenic bacteria into the small intestine, but perhaps the uninhibited use of antibiotics may also have played a pivotal role, causing the bugs to become much more resistant, and basically stronger.


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roxnhead Rookie

This is such a great article! It covers SIBO very well. I feel very fortunate to have a forum that educates-Thank-You so much for your hard work! I am classic SIBO- radiation enteritis, B-12 deficiency, carbohydrate malabsorption, increased bowel transit time-dx-auto-immune hyperthyroid,latent celiac,sjogrens. Have you read A New IBS Solution -Bacteria - The Missing Link in Treating IBS by Mark Pimentel? He's a G.I. from Cedars-Sanaii(sp) and has a specific diet guideline that is very close to Paleo-SCD. I have just completed 15 days of Cipro-really don't notice much diff-How were you treated? How long were you able to stay SIBO free, without reoccurence? Sorry for all the questions but my dear, you are now my SIBO authority- I hope you don't mind!

Donna

AliB Enthusiast

Hi Donna.

I am not yet SIBO free. It is only recently that I have picked up the connection through months of research and investigation.

However, I am now working to become SIBO free. Because of the dangers of bacteria becoming resistant to antibiotics, and also the fact that antibiotics seem only to give temporary relief in most cases, I have chosen not to go down that route, but to try and treat mine through more natural means using fermented foods like yogurt, kefir, etc. I read a post on an IBS forum of someone who has managed to get hers under control with yogurt and kefir, but she has to continue it to keep it under control. She reckoned it took about a year. She didn't mention what her diet is, but lowering carb intake may well make a big difference in how quickly the probiotics work. These beasties luuurve carbs!

I have long felt that our high-carbohydrate Western Diet undoubtedly contributes to this and indeed many other of our modern Western diseases, but it only recently dawned on me that what those still relatively healthy cultures who follow a relatively low-carb and certainly all natural diet also have in common is that most, if not all, daily consume some kind of fermented food, whether it be surstromming, yogurt, kefir, kvass, kombucha, sauerkraut, or fermented cabbage juice, etc.

That way they are ingesting a regular source of probiotic bacteria which not only keep the 'baddies' at bay, but also keep their immune systems strong.

Certainly, following the Specific Carb Diet (SCD) over the last 18 months has helped a lot - I have gradually been rebuilding my digestion after it finally collapsed after years of digestive issues, and I have pretty much now got Candida under control - I no longer seem to be the walking 'fungus factory' I used to, but SIBO seems to be the last thing standing between me and a decent level of health. I have to admit that I have not been very disciplined in taking the SCD yogurt or probiotics over that time, but having now realised the value I am now making tracks to remedy that.

I now realise that this is what has been 'bugging' me for the last almost 40 years. I do suspect, well certainly in my case, that several totally unnecessary courses of antibiotics given to me as a child undermined my gut flora so much that the SIBO became an issue. By the time I hit 15 I hit a brick wall energy-wise and have never reclaimed it back.

My energy is a bit better now than it has been for a long time, but if I can whack these beggars then I look forward to a much better level overall. Funny, whenever I have radically changed my diet I would get a burst of energy for a day or two - then it would revert back. I now realise that it was the bugs - knocked back temporarily until they adapted to a different food source, then they would come back with a vengeance!

This has been a veritable 'jigsaw' of a journey over the last 18 months. I have learned so much.

I do have the tendency to challenge established views. I am an analyst by nature. I do not accept anything at face value but need to know WHY. I like to look at the bigger picture. I am now convinced that most, if not all of our Western diseases are linked by a common thread. The only reason they are different, is because we are different, and whilst some will present with one kind of disease, others will present with others - just depending on where the bacteria are and where the gut damage is.

Whilst more research is now being done in this field, to date so little is known about it. I am sure that far more will become apparent in this. It does seem sometimes though that the more we learn, the less we actually know!

Thanks for mentioning the book. I haven't seen it but I might try and get it.

I would be interested to know how you get on. What is your history with SIBO?

roxnhead Rookie

My medical history is long! I had Cervical cancer in 2003 it was treated succesfully with both chemo/radiation therapy. Later that year I developed food poisoning but we blamed the bloody diarrhea on radiation enteritis-received argon-plasma therapy successfully. Since this time I have always had diarrhea til present but assumed it was the price I had to pay for the treatment I received to save my life. Dx B12 deficiency in 2005-unknown origin we blamed radiation therapy. The last 2 years I have been dx with latent Celiac, sjogrens and possible MG. My naturopath/md had Genova Dx CDSA done which revealed 2 pathogenic bacteria-and no lactobillus. Still knowone knew what to do with this info-a search via internet brought me to dx myself with SIBO. My G.I. agrees refers me to Infectious disease Dr.(nasty bacteria) he believes with the additional scarring from radiation that it will be very difficult for me to successfully be treated-but then hands me a prescription for Cipro!(I am currently being referred to another Infectious Disease Dr. for a second opinion). I have 2 problems-#1 Eradicating bugs and reestablishing balance in my poor leaky gut. #2 Finding out what/why I am always fatigued to the point of not being able to work-what is making me so weak? I am on a Grain Mold Sugar Dairy Free diet and I still have fatigue and weakness. I know that I do not metabolize carbohydrates, I know if I eat carbs my muscles weaken???? but I cannot understand this! Is it my poor radiated small intestine or is it the buggys and their toxins making me so ill. But then lets not forget genetics- both my mother and her sister died of NAFLD-non alcoholic fatty liver disease which has a direct correlation to SIBO! Low acid? If I have high carbs I get stoned, dazed, I guess I'm fermenting-therefore alcohol? Whatabout d-lactic acid? So many directions to pursue but not enough knowledge to piece it together---I'm incredibly frustrated and would really like to have my life back! Sorry I told you it was a long story!

P.S. by adhering to this diet I do not have diarrhea!

P.P.S. Dr. Pimental's book he believes that food poisioning(bacteria) is the "common thread "!

AliB Enthusiast

Well, apart from the Cancer, mine has followed a similar path. Although I have been following the SCD for the last 18 months and have benefitted from it, the fatigue is still there albeit not quite as bad as it was. I do eat pretty low-carb anyway as it helps keep my blood sugar stable.

As I mentioned, I believe mine started from a child, gradually building up after being given considerable courses of antibiotics as a child for what basically were pretty minor childhood illnesses. That was back in the days when they were doled out like sweeties for anything from a cut finger to earache!

I missed a lot of school through those illnesses and I know believe that I had become enslaved to the antibiotics. The very first course undermines your gut flora so much that your immune system is weakened. You then become far more susceptible to the next virus or bacteria to waft your way and so it goes on.

The tragedy is, that in the majority of cases, the causes of the illnesses were viral and the antibiotics were worse than useless. I don't blame my Mum. She was in awe of the Doctor 'gods' like most people were and just did what she thought was best for me.

I even wonder now if early treatment with antibiotics may even have been the trigger for her Type 1 Diabetes at the age of 16. I can't ask her now as she died of multiple organ failure in 2000, just 4 weeks after (finally, and way too late) being diagnosed as Celiac.

I don't actually believe that gluten intolerance was the cause, although it certainly didn't help, but looking back I can now see that her symptoms (the gluten intolerance undoubtedly being just yet another one) indicated extreme SIBO. Funnily enough, when I was young, amongst all the other lovely things she made and cooked from her own home grown food, she would make her own yogurt. In latter years she stopped having that but I now wonder if her earlier and regular consumption of the yogurt helped to keep the beasties at bay.

Shortly after hitting puberty I was a plump adolescent, gained more weight after marriage and with my first pregnancy and eventually peaked and stayed at around 16 stone for the last 20 years with very occasional losses and regains.

I had digestive issues most of my adult life. Funny how I didn't realise it at the time, but I now realise that eating, and particularly carbs would make me so weak it would take all my energy to not lay down where I was - even in the street. I thought the 'weary' stomach and backache (almost certainly from my liver/pancreas) was to do with my weight but now know it was the SIBO.

I eventually, a good 15 years ago developed IBS-D, then Diabetes, after years of hypos and blood sugar swings and issues - also triggered by carbs. In July of 2007 I was given a 'new' drug for the Diabetes, Byetta, but within 3 months had to be taken off it because of severe stomach pain. It did not improve and 3 months later my digestion collapsed. I now believe that the drug somehow encouraged the bugs to proliferate. I lost 3 stone over this time - mainly because I could hardly eat anything!

After the Medical Profession found 'nothing wrong' (not that they looked too hard), left to my own devices I found a link to Celiac. Within hours of dropping the gluten the D abated and the stomach pain went away never to return.

I started the SCD a few weeks later and it has made a lot of difference, especially in clearing out Candida, but the SIBO seems to be persistent. I am now trying to be much more disciplined, especially with the yogurt and probiotics.

Interestingly, over the last 8 or 9 years I have been plagued with a persistent background heartbeat 'thumping' around my body - banging in my ears and often keeping me awake. I have had tests and my heart seems ok, but in any case I was convinced that it was more to do with my digestion than my heart as it would be a bit better in the morning than at night after having eaten all day. That didn't really improve at all on the diet, yet within two days of regular yogurt consumption and added probiotics, it has really calmed down. I am watching this with interest.

With your brain-fog after eating carbohydrates, that would almost certainly be down to ethanol production by the bugs. That's how it gets my Husband. He is much better off gluten, but I haven't persuaded him to dump all the carbs nor can I get a drop of yogurt past his lips (unless I disguise it!!!). I might try and get him to take some probiotic capsules though - they would be better than nothing.

roxnhead Rookie

I am so sorry to hear that you have been dealing with your digestive issues since childhood, just isn't fair. All I can remember as a child is being a glutten-eating like a horse and being extremely thin. I believe I may have had issues then but it didn't manifest itself til after chemo/radiation 2003. My mom always had digestive issues and passed away from NAFLD our heritage- Norwegian, Welsh, Irish. I suppose it's in the genes. My naturopath has suggested Berberine as a anti-bacterial, I'll add it to my list of what I am taking now which is:

1. Coconut oil

2. grapefruit seed extact

3. capril

4. Oregano oil

I am also taking probiotics

1. VSL DS#3

2. Sachromesse Boulardi(sp)

3. Proboulardi (3 in 1)

My supplement list is

1. L- Glutamine

2. Zinc

3. B-12 injections

4. liver detoxifying blend

5. Phyto ADR , Iodoral, Dhea, Vit D.

What I am going to add is

1. Betaine Hcl

2. Multi-vitamin

3. Berberine and digestive enzymes

I finished my 15 day trial of Cipro and have already noticed how bloated I get at any meal, any food. In about 2 weeks I will have stool testing done to see how my bacteria have fared, hoping to have created some balance. I will also do breath testing , but for now I have not noticed any changes from treatment! Any suggestions?

You mentioned that in your past you had extreme weakness after carbs, just like me. I am wondering what enzyme I might be dieficient in? Is this some sort of metabollic disturbance that can be treated?

Thank You as always- Donna

AliB Enthusiast

You know, I don't think there is much these little beggars aren't capable of. At the end of the day they are parasites. They feed off us and will do anything to maintain their food source, even to the extent of exuding certain toxins to switch off our enzymes or change processes in our bodies.

They may not have a brain as such but they are designed to survive and adapt in order to survive (which is why they are able to become resistant to antibiotics). If they stayed where they should be then they probably would not be a problem, and might even be of some benefit, but when doors are opened to them that wouldn't normally be then of course they are going to take advantage of that.

Moving up into the upper intestine means that they get the first pickings. They get the bulk of our nutrients, and that makes them even stronger and more prolific - is it any wonder that we often suffer with malnutrition???

My Mum was anemic all her life (she was type 1 Diabetic). Anemia is typical of Celiac. She wasn't bleeding anywhere but something was robbing her of her iron reserves, or altering its composition so her body couldn't absorb it. My guess is gut bugs. Certainly later in her life she manifested symptoms that equate with SIBO. Unfortunately, not manifesting symptoms doesn't mean you don't have it though. I suspect the symptoms only really start to manifest when they have taken over the whole digestive tract.

But then, perhaps the Diabetes and Anemia in themselves were symptoms?

Do you eat much in the way of carbs? Are you on any kind of Candida diet?

Some seem to feel that as long as they take the supplements they can carry on as normal, but I do feel that removing the foods the bugs feed on is a very important aspect. Even then it can take some time - even a few years to finally get the better of the things. I don't mind that as long as it is progress, even slow progress.

Reading from a book by Meinolf Karthaus - Supportive Care in Cancer Patients, it seems that fungal infestations seem to go hand-in-hand with certain types of Cancer. Some might say that weakened bodies due to Cancer become susceptible to fungus like Candida or Aspergillus. However, what if the fungus was already in the body to start with and the opposite is true?

There have been situations where some patients with Leukemia who have been treated aggressively for fungal infections actually had their Leukemia go into remission as a result.

Interesting.

Even 50 years ago, one eminent Doctor, J Walter Wilson said in his textbook of Clinical Mycology (1959) that 'it has been established that histoplasmosis and such reticuloendothelioses as leukemia, Hodgkin's disease, lymphosarcoma, and sarcoidosis are found to be coexistent [with yeast overgrowth] much more frequently than is statistically justifiable on the basis of coincidence.'

Yet even now, the Medical Profession still refuse to accept that Candida and other yeasts are major issues.


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AliB Enthusiast

I just wanted to add that I think we have to be careful in the amount of supplements and stuff that we take. I feel sometimes that if we take to much we can just confuse the body and possibly make things worse.

A lot of these herbs have quite potent ingredients which may conflict with each other at times if we are not careful.

Food substances you are probably ok with, but whilst herbs are foods, they are also medicinal and like any drugs we have to be careful what we take them with. Whilst they may be ok on their own, they could cause problems taken together.

As well as that, too much could cause an extreme die-off which could flood the body with toxins and overwhelm it. Yes, we want rid of these beasties but better to do it slowly than too fast and cause major issues.

roxnhead Rookie

Heya,

My diet has evolved over the last year. In Oct/2008 I was dx Latent Celiac so no gluten. My diarrhea and my incredible appetite was greatly decreased! By Nov I was still having head-eye aches-swelling and noted on this web site that 50% of Celiacs have a problem with casein, so no casein. My aches, specifically eyes ceased. Bbq sauce, sausage, certain fruits, vinegar would cause aches, swelling and I would get high--these were mold foods and believe it or not these were the ones that were the hardest to give up! But eating them will make me dazed, fatigued, weak. As time went on I realized that CARBS are my enemy-even now with my diet so restricted I notice the carb fatigue/weakness if I eat any carbs. My new routine is Paleo- with alot of almond-flour, almond-butter and coconut milk, coconut flour, unsweetend coconut. Dr. Pimental suggest low fiber since it stays in your gut longer thereby feeding the beasties, so now low fiber. So my diet is Gluten,Grain,Mold,Carb(low) Fiber(low) diet. I have maybe a tsp. of sugar a day in a hot drink but otherwise Sugar-free. Today for breakfast I had a turkey- lettuce wrap and became so fatigued I took a nap, I was only up for 3 hours! It is one thing to be on this CRAZY diet but to still be reacting to more foods seems CRAZY! If I stay away from all carbs I feel stronger and less fatigued so this is where I am now, trying my best to not feed the beasties.

I spoke with my Naturopath about my supplements he reviewed and all is OK. He gave me the script for VSL #3 and My new diet regime(no carbs) and probiotics have made me feel pretty good last couple days! We'll See Donna

  • 2 weeks later...
ann72601 Apprentice
I just wanted to add that I think we have to be careful in the amount of supplements and stuff that we take. I feel sometimes that if we take to much we can just confuse the body and possibly make things worse.

A lot of these herbs have quite potent ingredients which may conflict with each other at times if we are not careful.

Food substances you are probably ok with, but whilst herbs are foods, they are also medicinal and like any drugs we have to be careful what we take them with. Whilst they may be ok on their own, they could cause problems taken together.

As well as that, too much could cause an extreme die-off which could flood the body with toxins and overwhelm it. Yes, we want rid of these beasties but better to do it slowly than too fast and cause major issues.

When I read all that you've written, it sounds amazingly like myself only you're 16 months ahead of me in the SCD experience. I am inspired to keep trying. Love to talk with you sometime.

Ann

roxnhead Rookie

Ann,

Do you have SIBO? Have you tried rifaxamin for treatment? I am going to G.I. soon for a script. I continue to feel better off carbs and with my probiotics/enzymes supplements. I'm wondering what specific enzyme am I lacking that keeps me from digesting carbs? Could it be the ill health of my small intestine/leaky gut? Is it the location that keeps me from digesting carbs? I've noticed other SIBO'ers that have trouble digesting fats or proteins! Is it location, location, location that predisposes you to your inability to digest certain foods or your total small intestinal health ? I continue to have weakness and fatigue, parathesia but all have been decreased for the first time since starting this latest regime. I am so excited I am looking forward to going back to work and having my life back! I would truly like to be "cured" even though I hear SIBO is a very cyclical dx. I would enjoy speaking with you as well! So many questions , I think that most of my knowledge (limited) is from others that are lost in this illness.

Donna

AliB Enthusiast

Hi Donna & Ann.

It's funny, but over the last few days I have turned my thoughts around somewhat.

Someone on another thread triggered me into revisiting my books on alkalizing.

What is interesting about that is the concept that it is not the bugs that are the cause of disease, but a result of it. Microbes/yeasts like Candida are clean-up merchants. They digest and process stuff that is fermenting and turn the sugars into alcohol. Other microbes have other roles.

The thought behind it is that an unbalanced body that does not function properly can encourage the bugs. We all know that the acids from sugar causes tooth decay. It's not the bacteria, yet bacteria will be found in decaying teeth. They are just doing their job.

There are quite a few books on the subject, but Robert Young mentions in one of his that our bodies tend to be more acid than they should be because most of the food eaten in the Western diet is acid-forming.

I am also trying Watercure too. Drinking more water (I have never drunk enough liquids) with a little organic mineral salt. We have tended to lower our salt content for some years - and if it is ordinary table salt that probably is no bad thing, but the organic raw salt contains a lot more minerals than ordinary salt, which is sodium chloride and not much else, and perhaps because of that my body is lacking in enough of certain minerals. Salt is naturally alkinizing too.

We have been indoctrinated to be frightened of the stuff through one or two rather vague studies that picked up a tenuous link to high blood pressure - but who knows, may be they were using ordinary table salt instead of the real McCoy! In fact, I would suggest that that was almost a foregone conclusion. Although they may have linked salt to HBP there probably was no suggestion to those people to drink more water for the salt to act on!

Water without enough salt won't work properly, and salt without enough water won't work properly.

Interesting interview on Youtube about the Watercure - this is part 1, there are 6 altogether.

It seems to have been able to treat all sorts of health problems, even Cancer! You bet it's been suppressed!

It's funny, about 8 or 9 months before she died of multiple organ failure, my Mum started vomiting and it was discovered that her electrolytes were very out of balance. Just 4 weeks before she died a Doctor suspected that she had Celiac Disease, and knowing what I now know, according to her symptoms he was almost certainly right. But which came first? The Celiac or the Mineral deficiency? I am plumping for the mineral deficiency - probably happening over some period of time, even years perhaps.

It's funny but as a Diabetic, one of the things I have that is common to us is that I have lost all the hair on my lower legs. Not that I am sorry about that! But it is weird. I always felt that it had something to do with dehydration but didn't know why. I understand now. Before dumping the gluten I also used to get dry, hot, burning feet along with RLS. That went away after the gluten and most carbs went. I suspect they were very dehydrating to my body.

The Western diet is vary acid-forming, but it is also very dehydrating. Sugar is one of the worst culprits, and anything that easily turns to sugar. Perhaps when we get further intolerances our bodies can't process the food properly because of dehydration. Without enough water and minerals the body can't complete its processes properly.

I fortunately had some mineral salt in my cupboard and have started the Watercure today. I will be interested to see where this goes.........

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    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
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