Do all gastroenterologists recognize SIBO?

[outdamnspot]

I have a gastro referral that's just been sitting by the wayside for a few months because I've been feeling too depressed and unwell to pursue treatment; however, my situation has become a lot more urgent because I'm effectively down to eating only meat due to severe food intolerances (which is a diet I can't physically function on, even in my very limited capacity), and I've been rapidly losing weight.

I called the practice and was able to schedule an urgent apppointment this Monday with one of their doctors; I don't know anything about the practice, but it's a team of 5 GI doctors who supposedly work together; the doctor I'm scheduled to see doesn't really have much information or reviews online.

Anyway, my understanding is food intolerances may be connected to SIBO, but that this is also something that could fall more under the line of immunology if MCAS etc. is involved? I asked on Facebook and was given the name of a very good immunologist in my city who deals with this stuff, but the waiting list is months.

So I guess it's hard for anyone to say without knowing the doctor in particular, but I'm just wondering how much I should push the idea of SIBO and if food intolerances really is a gastro area? The last time I saw a GI doctor (when my eating issues weren't even nearly this bad) he just kind of shrugged at me when I said everything I was eating was causing inflammation. I am worried that they would more want to do a scope, which I think I'm too unwell for, but at the very least they'd probably recognize the weight loss isn't a good sign.

 

[Hip]

I don't know the answer to you question, but SIBO can be diagnosed by a hydrogen/methane breath test:

Hydrogen/methane breath test. SIBO can be detected using a breath test, which involves drinking some lactulose or glucose sugar, and measuring the hydrogen or methane gas produced by bacteria in the small intestine as they metabolize this sugar. (These gases enter the bloodstream and are expelled by the lungs, where they are detected in the breath). SIBO with diarrhea however tends to produce hydrogen sulfide (H2S) instead. A breath test which can detect H2S should be available at the end of 2018.1

A hydrogen/methane breath test can be used as a differential diagnosis to determine whether a patient with IBS-like symptoms actually has IBS or SIBO; these two conditions cannot be distinguished by symptoms alone.1

 

[Shoshana]

I don't know the answers to your questions, but my guess is to try to go to that Monday appointment, just in case they do tell you anything useful.
Perhaps take a list of the foods you have tried eating, and the specific bad symptoms you got when you did. Perhaps instead of telling them 'inflammation' resulted, tell them the signals, signs you got. See what they guess at, before you tell them your conclusion? Just ideas for you to consider.

 

[junkcrap50]

It's a growing area for regular, mainstream GI docs. So, I would guess 50/50 chance they've heard of it, probably 33% they test for it. Just my wild guess of numbers.

Look up Leonard Weinstock, MD + SIBO +/or MCAS. He's a well published GI doc at a prestigous med school that has written papers on it.

 

[kangaSue]

Anyway, my understanding is food intolerances may be connected to SIBO, but that this is also something that could fall more under the line of immunology if MCAS etc. is involved?

The only reliable test for SIBO is a duodenal or jejunal aspirate test as having slowed GI motility can and does cause both false positives and negatives with the breath tests. My GI motility specialist says SIBO can be prevalent in GI dysmotility patients and suggests that they just do a trial of antibiotics to see if symptoms improve.

If it's MCAS related, symptoms should impove with a combination of H1 and H2 blockers, an antihistamine, ketotifen or cromolyn sodium and maybe a DAO supplement. However, GI problems can and do cause an increase in mast cell activity and an antihistamine regime will often have no effect on this.

Some cases of food intolerances can be part and parcel of having a malabsorption problem. That is where my problem lay, in association with having gastroparesis, and this is most likely caused by reduced blood flow to the bowel (Chronic Mesenteric Ischemia) which is normally a problem involving mesentery artery stenosis but can be a microvascular problem (so non-occlusive) that causes no specific pathology to diagnose it from.

There's a lot of other things to be ruled out though, Celiac disease, C diff or bacterial infections, enzyme deficiencies, autoimmune conditions, a few bowel vascular anomaly things etc etc. Quite a mine field really.

 

[outdamnspot]

The only reliable test for SIBO is a duodenal or jejunal aspirate test as having slowed GI motility can and does cause both false positives and negatives with the breath tests. My GI motility specialist says SIBO can be prevalent in GI dysmotility patients and suggests that they just do a trial of antibiotics to see if symptoms improve.

If it's MCAS related, symptoms should impove with a combination of H1 and H2 blockers, an antihistamine, ketotifen or cromolyn sodium and maybe a DAO supplement. However, GI problems can and do cause an increase in mast cell activity and an antihistamine regime will often have no effect on this.

Some cases of food intolerances can be part and parcel of having a malabsorption problem. That is where my problem lay, in association with having gastroparesis, and this is most likely caused by reduced blood flow to the bowel (Chronic Mesenteric Ischemia) which is normally a problem involving mesentery artery stenosis but can be a microvascular problem (so non-occlusive) that causes no specific pathology to diagnose it from.

There's a lot of other things to be ruled out though, Celiac disease, C diff or bacterial infections, enzyme deficiencies, autoimmune conditions, a few bowel vascular anomaly things etc etc. Quite a mine field really.

Thanks for your help. I'm based in Aus too (Victoria) and while it's probably hard to generalize, is this stuff most competent gastroenterologists should be versed in? When I used to see specialists, I would generally spend a lot of time researching to find the 'best', but with my physical condition deteriorating, I had to throw caution to the wind and just go with someone who was nearby and who my doctor picked. So it does make me anxious because I wonder how many of these appointments I can even attend anymore.

As I said, the last time I saw a GI doctor several months ago (and an associate prof at that) it was like a rushed 15 minute consultation and I worked out with a PPI script .. no bloodwork, investigations, anything.

 

[Float]

No. Competent gastros are likely not versed in siBo. Even if they are they will want to look for a root cause (very wise). Basically don't get your hopes up , but you may get lucky. It really depends who you get. Why don't you call the gastro department and specially ask which specialists have heard of SIBo and or include it in their diagnosis / conversation with patients.
I'm sure the receptionist will be able to ask at a department team meeting.

 

[kangaSue]

Thanks for your help. I'm based in Aus too (Victoria) and while it's probably hard to generalize, is this stuff most competent gastroenterologists should be versed in? When I used to see specialists, I would generally spend a lot of time researching to find the 'best', but with my physical condition deteriorating, I had to throw caution to the wind and just go with someone who was nearby and who my doctor picked. So it does make me anxious because I wonder how many of these appointments I can even attend anymore.

As I said, the last time I saw a GI doctor several months ago (and an associate prof at that) it was like a rushed 15 minute consultation and I worked out with a PPI script .. no bloodwork, investigations, anything.

It took me 12 years before the subject of SIBO was mentioned after I was finally referred on to a supposed top GI motility specialist and then, it was only at my prompting.

Best to let the GI have their two bobs worth at a first appointment though, and it should take at least 30 minutes to get your history fully. Most GI's are next to useless though for complicated GI dysfunction when there's a very real chance that it involves autonomic dysfunction too.

If you happen to be seeing Dr Paul Froomes or Prof Geoff Hebbard, you're in very good hands. Otherwise, it's a bloody lottery and you can learn more from patient forums.

You might need to see an Immunologist for food intolerances too and I'd get my GP to run an ANA antibody blood panel in case there is something autoimmune going on and also do a Multiplex Fecal PCR test for bacterial and parasite infections.

 

[outdamnspot]

It took me 12 years before the subject of SIBO was mentioned after I was finally referred on to a supposed top GI motility specialist and then, it was only at my prompting.

Best to let the GI have their two bobs worth at a first appointment though, and it should take at least 30 minutes to get your history fully. Most GI's are next to useless though for complicated GI dysfunction when there's a very real chance that it involves autonomic dysfunction too.

If you happen to be seeing Dr Paul Froomes or Prof Geoff Hebbard, you're in very good hands. Otherwise, it's a bloody lottery and you can learn more from patient forums.

You might need to see an Immunologist for food intolerances too and I'd get my GP to run an ANA antibody blood panel in case there is something autoimmune going on and also do a Multiplex Fecal PCR test for bacterial and parasite infections.

I saw the gastro today; he was nice and knowledgeable, though seemed a little too eager to pin things on anxiety/depression -- I mean, I definitely have a history of mental health issues, but when you've fallen into a morass of being primarily bedridden, react to everything you encounter (food, scents, noise etc.) and are too physically incapacitated for psych meds/therapy etc., it's kind of redundant.

He said a colonoscopy probably wasn't necessary since I don't have diarrhea and he'd rather spare me the burden, which I appreciated. He told me to reintroduce foods that I'm intolerant to slowly, which I realized just isn't going to work because I desperately need a way to be able to eat carbohydrates again, so I asked about SIBO. He said it's been long known about in the GI world, but was believed to be restricted to certain conditions, and that naturopaths have popularized the idea that anyone can get it; he said he tries to remain open-minded and is happy to do the testing if I want.

My ANA test has been normal twice, and my stool tests are usually normal too.

I think I mentioned I was given the name of a very good immunologist in my city (supposedly an expert on MCAS etc.), but his waiting list is very long.. My frustration is that there really are no procedures in place when you've become effectively helpless and are battling multiple things at once. I was lucky that today I didn't have any food reactions and was well enough to make it to the appointment but that's an extremely rare occurrence; and now I have to figure out how to try and get the SIBO test done. I just can't survive days/weeks/months like this, barely able to eat, disabling food reactions (sometimes bordering on psychosis), probably requiring the care of different specialists working in tandem. It's getting too difficult to get to my doctor, get the referrals, wait them out etc. It doesn't seem to be a particularly big concern for anyone I've seen that I've lost 1/4 of my body weight in under a year, despite the exact same caloric intake. There don't seem to be any inpatient resources for this, but if I was suicidal, I'd be thrown into a mental health unit (which has happened .. and which was completely redundant, because I spent 3 weeks there and was too sick for any interventions, and was discharged in the same state I came in).

 

[kangaSue]

I definitely have a history of mental health issues, but when you've fallen into a morass of being primarily bedridden, react to everything you encounter (food, scents, noise etc.) and are too physically incapacitated for psych meds/therapy etc., it's kind of redundant.

disabling food reactions (sometimes bordering on psychosis)

I'd be thrown into a mental health unit (which has happened .. and which was completely redundant, because I spent 3 weeks there and was too sick for any interventions, and was discharged in the same state I came in).

The above are good reason to ask your GP to run a test for D-lactic acidosis as you can have significant mental problems with this.

Some bacterial species can produce this D-form and carbohydrate malabsorption can lead to abnormal increase in the gut of D-lactate-producing bacterial species. The D-lactic acid is released to the gut, absorbed and accumulates in blood but routine lactate tests only measure the L-isomer.

An unexplained high anion gap can be a clue for this however, some sources suggest even a slightly elevated d-lactate level can be problematic so anion gap may only be high-ish normal.

D-lactate can also be elevated if you have impaired blood flow to the bowel (chronic mesenteric (gut) ischemia - can be part of the bowel vascular anomalies I touched on in a above) as this can also cause nutrient malabsorption problems. These vascular anomalies will often cause a bruit sound so have your GP listen for it and if present, get a Doppler ultrasound test of the mesentery arteries. A bruit isn't always heard though and if it were me, I would have this done regardless. Fecal calprotectin level may be elevated with this too.

I did have a bruit when I knew to ask my GP about this. Turns out is was an occluded left renal vein (Nutcracker Syndrome) and while it's not mentioned anywhere in the medical literature, this can cause significant upper GI dysfunction too as I know of at least a dozen other people in the same situation as myself.

 

[BeADocToGoTo1]

Depression, food sensitivities, malabsorption, nutrient deficiencies and many more symptoms can be linked to dysbiosis. Not just bacterial, but also fungal. Are you able to do a metabolite test like Genova Diagnostics FMV or Great Plains Lab Organic Acid Test? There are quite a few markers in those tests that check for both bacterial and fungal dysbiosis. It also has a section pertaining to neurotransmitter markers as well as indicators for deficiencies in nutrients necessary for the body to make neurotransmitters.

Not sure if I mentioned this to you, but especially with the weight loss, please discuss these with your GI doctor as well: Comprehensive stool test (e.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin), or any similar test that checks for pathogens, Short Chain Fatty Acid (SCFA), pancreatic elastase, and fecal fat levels in stool.

It might also be worthwhile to check whether you have been overly exposed to toxic metals or chemicals, for example, Great Plains Laboratory Toxic Environmental (GPL-TOX), Doctor's Data Toxic Metals or Quest Diagnostics Heavy Metals Comprehensive Panel.

Often a touchy subject, but it is also important to tackle food and water quality intake. Look into a reset diet to set a baseline for a few months before slowly re-introducing elements and see how the body reacts. This is especially tough when you are struggling with food to begin with.

In case it helps, this is what I had written in another thread:

The only thing I could tolerate for many, many months was home made organic chicken or bone broth soup with a ton of vegetables, a bit of wild rice, a potato made in a slow-cooker. Some nuts and seeds or avocado on the side. If you want I can send you the recipe I use. I still eat this for lunch almost every day. I had to completely reset my diet and slowly, one at a time, re-introduce food elements to see how my body would react. Nothing processed, and especially nothing from a restaurant or cafe.

But I also had to address SIBO and Candida overgrowths with supplements, pre- and pro-biotics, as well as anti-biotics and anti-fungals and a strict diet. This took 2-3 months. Have you done a breath test for SIBO or a urine metabolite test for SIBO and Candida? How about a Candida blood test to see whether it is systemic?

Creon (or any other pancrelipase) was a must in order to break down the food into usable nutrients, and help regain some microbiome balance. If it takes a while for a prescription you can get something like LifeExtension Enhanced Super Digestive Enzymes to take with each meal.

Even with all of this it, it took a long time to turn things around, and a multi-pronged approach was necessary. And to this day, I have to be very careful with anything I eat or drink (I only drink water, tea of coffee still) as my body will slap me very hard.

 

[be_lovely_]

SIBO is becoming more mainstream thankfully. When I went to my allopathic PCP last week at one of the major Boston hospitals and we were discussing a GI referral for a separate issue due to results I just received from my functional doctor from the GI effects Stool Profile via Genova Labs (high fecal calprotectin and IgA, literally no bacteria in my gut and no growth) and that’s coupled with a very long history of much digestive issues; lack of bile production, undigested fats, major recent weight loss, malnutrition and the list goes on unfortunately, and although I don’t know how much weight she put into the labs I brought in she did reference the GI department doing SIBO tests, which I was surprised she was aware of. But they are coming around to that IBS and other syndromes and possibly diseases can be a direct result of SIBO. I hope this helps. I skimmed the post so forgive me if this was mentioned, but would you be more comfortable seeing an integrative physician?

 

[kangaSue]

SIBO is becoming more mainstream thankfully. When I went to my allopathic PCP last week at one of the major Boston hospitals and we were discussing a GI referral for a separate issue due to results I just received from my functional doctor from the GI effects Stool Profile via Genova Labs (high fecal calprotectin and IgA, literally no bacteria in my gut and no growth) and that’s coupled with a very long history of much digestive issues; lack of bile production, undigested fats, major recent weight loss, malnutrition and the list goes on unfortunately, and although I don’t know how much weight she put into the labs I brought in she did reference the GI department doing SIBO tests, which I was surprised she was aware of. But they are coming around to that IBS and other syndromes and possibly diseases can be a direct result of SIBO. I hope this helps. I skimmed the post so forgive me if this was mentioned, but would you be more comfortable seeing an integrative physician?

GI dysmotility causes many false positives for SIBO though.

If it were SIBO, there should be some good improvement in GI symptoms from taking, or while on antibiotics, and it's often the case that any improvement will only last for 10 to 20 days after abx are stopped where SIBO is concerned.

The same symptoms can be the case if you have something causing you a reduced blood flow to the bowel, enough that the metabolic demand during the digestion process can't be met so results in chronic intestinal ischemia.

Antibiotics did nothing for my symptoms and mine were eventually diagnosed as chronic ischemia.

 

[renski]

Try find someone listed here: https://sibotest.com/practitioners/search

The doc who runs sibotest (Nirala jacobi) also has her own clinic, but I would try find someone local

 

[outdamnspot]

I'm getting my D-Lactate levels checked tomorrow, based on @kangaSue 's suggestion. I just wanted to check: in the presence of d-lactate-producing bacteria, should all carbohydrates be metabolized into d-lactate? My plan was to deliberately eat badly to induce symptoms, but when I checked the foods that are high in d-lactate (yoghurt, cheese, sauerkraut etc.), it was all stuff I was too scared to eat, especially since it's been years since I've had dairy.

The only two carb sources in my diet are avocado and liver, but liver is higher in carbs and avocado also has antibiotic properties, so I decided to eat some liver before bed.

 

[kangaSue]

Any carbs will do it as I understand it.
https://oley.org/page/DLacticAcidosis

 

[outdamnspot]

Depression, food sensitivities, malabsorption, nutrient deficiencies and many more symptoms can be linked to dysbiosis. Not just bacterial, but also fungal. Are you able to do a metabolite test like Genova Diagnostics FMV or Great Plains Lab Organic Acid Test? There are quite a few markers in those tests that check for both bacterial and fungal dysbiosis. It also has a section pertaining to neurotransmitter markers as well as indicators for deficiencies in nutrients necessary for the body to make neurotransmitters.

Not sure if I mentioned this to you, but especially with the weight loss, please discuss these with your GI doctor as well: Comprehensive stool test (e.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin), or any similar test that checks for pathogens, Short Chain Fatty Acid (SCFA), pancreatic elastase, and fecal fat levels in stool.

It might also be worthwhile to check whether you have been overly exposed to toxic metals or chemicals, for example, Great Plains Laboratory Toxic Environmental (GPL-TOX), Doctor's Data Toxic Metals or Quest Diagnostics Heavy Metals Comprehensive Panel.

Often a touchy subject, but it is also important to tackle food and water quality intake. Look into a reset diet to set a baseline for a few months before slowly re-introducing elements and see how the body reacts. This is especially tough when you are struggling with food to begin with.

In case it helps, this is what I had written in another thread:

The only thing I could tolerate for many, many months was home made organic chicken or bone broth soup with a ton of vegetables, a bit of wild rice, a potato made in a slow-cooker. Some nuts and seeds or avocado on the side. If you want I can send you the recipe I use. I still eat this for lunch almost every day. I had to completely reset my diet and slowly, one at a time, re-introduce food elements to see how my body would react. Nothing processed, and especially nothing from a restaurant or cafe.

But I also had to address SIBO and Candida overgrowths with supplements, pre- and pro-biotics, as well as anti-biotics and anti-fungals and a strict diet. This took 2-3 months. Have you done a breath test for SIBO or a urine metabolite test for SIBO and Candida? How about a Candida blood test to see whether it is systemic?

Creon (or any other pancrelipase) was a must in order to break down the food into usable nutrients, and help regain some microbiome balance. If it takes a while for a prescription you can get something like LifeExtension Enhanced Super Digestive Enzymes to take with each meal.

Even with all of this it, it took a long time to turn things around, and a multi-pronged approach was necessary. And to this day, I have to be very careful with anything I eat or drink (I only drink water, tea of coffee still) as my body will slap me very hard.

I appreciate the suggestions but I just don't have the money to get any further testing done; even the basic SIBO test here is too expensive. I saw my doctor today and the GI's letter said there is no reason to suspect I have SIBO and to just reintroduce problematic foods slowly ... hmm .. well if that worked, maybe I wouldn't have asked to see a specialist? Then I asked my GP if she would be willing to try an antibiotic to see if there is any improvement and she said no. The situation to me seems urgent because either I live on zero carbs and have a reduction in symptoms, but become too weak to function, or keep eating problematic foods to get carbs and basically experience psychotic anxiety/depression as a result. I'm just baffled no one will help or so much as write up a stupid antibiotic script after I've been suffering like this for 6 months.

I'm thinking of just buying an antibiotic online to see if it improves my symptoms. Seriously, f*ck doctors.

 

[BeADocToGoTo1]

It really is disheartening to hear that the doctors are still not helpful. But, as painful as it is to not get answers, the good thing is that many things are being taken off the board. It is often a slow process of elimination. The one area that really might need your attention is your microbiome and food/beverage intake. Zero carbs is not healthy for many reasons. Even reset diets will only temporarily go to really low carbs, but not zero. It will not be easy, but with everything you are have been going through what is a few months of trying something different.

Here are a few bits of 'primal' reading material all available on Amazon that helped me out tremendously in understanding the impact of food/beverage and helped turn things around:

Primal Body, Primal Mind
The New Primal Blueprint
Primal Pancreas
The Keto Reset Diet

Mark Sisson also has a website and free podcasts with a wealth of information here:

http://blog.primalblueprint.com/

https://www.marksdailyapple.com/primal-blueprint-101/

That doctors are unwilling to throw an atom bomb (antibiotics) into your microbiome without specific test results is not necessarily a bad thing. More often it is the other way around, which can cause a whole host of long term issues. It can take a lot of time, dedication and care to rebuild the good bacteria balance. But they should be willing to test, as part of your insurance, the very important elastase and fecal fat in stool, which I had brought up before.

 

[kangaSue]

I saw my doctor today and the GI's letter said there is no reason to suspect I have SIBO and to just reintroduce problematic foods slowly ... hmm

Well we could all cut out the middle man if that was an effective fix. I've been dished up that turkey before too, 20 years ago, and I'm still looking for the answer.

You do have a normal amylase level, don't you?

You could also try starving out SIBO with a two week elemental diet. You can buy something like Vivonex or Nutricia Elemental 028 (maybe through Nutrition Australia or independanceaustralia or brightsky) or there's d.i.y. suggestions online like this;
https://www.siboinfo.com/uploads/5/4/8/4/5484269/homemade_elemental_diet_options.pdf

 

[be_lovely_]

I'm not sure what type of insurance you have or where you live, but a lot of insurances are now paying for the SIBO test. I had mine paid for no question and I believe follow up tests are paid for after treatment. Again a functional or integrative doctor is your best bet with getting these tests approved (writing the right codes for approval--which is always a major factor). These doctors are also easier to find nowadays, if you go to genova diagnostics webpage you can obtain a list of pracitioners in your area and see who fits your needs close to you that is covered by your insurance. In the meantime you can work on your motility issues, esp if you are only eating meat which slows things down quite a bit, doubling and tripling transit time at least in my case and many others as I've read in the literature. A lot of people stay away from fiber as well due to the bloating and difficulty with digesting but its vital in the digestive process for many reasons; transit time, increasing and ridding bacteria etc. I would suggest checking out some of the youtube videos on SIBO and MCAS, "sibo doctor" has some great ones. I watched this one recently and it has a lot of great info;