SIBO

Does anyone else on here have Small Intestinal Bacterial Overgrowth as a result of PA. I would be interested in your symptoms and the treatment regime you have been given.

[Cherylclaire Forum Support]

Not exactly, Hidden , but I have had a B12 deficiency diagnosis, a Functional B12 deficiency diagnosis, and then a Lactulose breath test that suggested SIBO because of raised MMA levels, so put on Doxycycline antibiotics for a couple of weeks.

Had previously seen a dietitian (suspected IBS ?)and did 6 weeks of FODMAP elimination diet a couple of years ago, which did not help me.

Can't say the Doxycycline helped my digestive problems (diarrhoea every day for last 3+ years), but I had almost immediate significant improvements to skin, hair, nails etc. and my salivary gland problems seem to have gone altogether ! Sore split and bleeding corners to mouth have healed: a problem I have had for well over 10 years. Not a total disaster then.

I did have a reaction to the antibiotic: a lot of face pain and really bad vertigo, but that could have been because I made the mistake of taking probiotics at the same time. I misunderstood advice given here, and took it too literally: "do not take probiotics and antibiotics at the same time" became "take both, but don't shove them into your mouth simultaneously".

Literal interpretation- this also seems to be a symptom!

Hope you find some answers. If I haven't been of much help, I hope at least I made you smile.

[Hidden in reply to Cherylclaire]

Thanks Cheylclaire that’s really helpful to know. I say that because I have all the symptoms of SIBO and yet tested negative. I think that’s because they used glucose for the test instead of lactulose (which measures hydrogen and methane in the last part of the small intestine where bacteria are more often found). I mentioned this to my gastro who simply said oh well that’s just what we use! So I still have massive bloating, pain in my stomach and intestine each time I eat which makes for a pretty miserable existence. And no further forward so next step might be for me to order an online lactulose test. It’s pretty disappointing to have seen a specialist who doesn’t seem to know the basics but we all know a lot about that in here.

Hope you begin to feel better soon.

[chill234]

I have SIBO - I suspect that is why I have B12 deficiency - I do not absorb nutrients - the Small Intestine Bacteria absorb them, leaving me malnourished. I did 7 weeks of a 10 week treatment plan, (antibiotics, very strict FODMAP diet) but I re-tested and although my methane level decreased a bit, my hydrogen level had increased, so I stopped. I am going to try again with a different practitioner and a different plan, because I think this is crucial to my health. ExpatKerry (I'm not sure I got the name right) has contributed to this forum before, and I believe she had a successful treatment of SIBO.

[Hidden in reply to chill234]

Thanks Chill234. Did you use lactulose? I am losing weight I can ill afford to lose and a private gastro I paid for has effectively written me off. I’m certain I have it as I have been tested for everything else. Will ask GP tomorrow! Thanks for your response and I hope you get some relief.

[Cherylclaire Forum Support in reply to Hidden]

My hydrogen breath test was done through the NHS - but not directly from GP. Perhaps you can try again, and get the right test ?

Because my methylmalonic acid (MMA) continued to show as raised from blood testing, a haematologist sent me to have SIBO test (breath test) as this could have explained why MMA might be raised.

GP told me she had only ever seen 2 people with raised MMA: me and a patient 10 years previously, who had Functional B12 deficiency - which is why she thought I was still having problems with deficiency symptoms despite having over 2000ng/L B12 in blood.

Reason GP sent me to haematologist? I did not respond well when having one injection every 3 months (who does??) or 2 months, and ended up on a frequency of 2 B12 injections a week, finally deteriorating again, although this time it took 6 months. Also had problems keeping up ferritin and folate levels (and still need to supplement these). She did not know how else to help me, especially since the other patient with Functional B12 deficiency has been on 1 injection every 3 months for over 10 years. I suspect that she is probably self-injecting without telling GP or nurses.

It's hard to tell whether SIBO is the chicken or the egg in many cases; the bacteria steal vitamins (including B12) leading to deficiencies/ low acidity might well set up initial B12 deficiency and provide ideal conditions for bacteria to thrive....

not only possible to have both, but quite a common occurrence, I should think !

Wonder if you can kill them off with lime juice, then ?

[Hidden in reply to Cherylclaire]

Thanks again for your reply. I am not sure I have had MMA tested. What is it exactly? I have had lots of bloods so maybe I am just not recognising it. My next step is to order the lactulose breath test as the glucose one said I did not have SIBO but I feel quite sure I do!!

[Cherylclaire Forum Support in reply to Hidden]

Methylmalonic acid (MMA) is something that along the route joins with B12 in the blood in order to become something else and continue the journey....[ as you can tell by now, I'm not much of a scientist ]... which means that MMA that has no B12 to link with is left hanging in the bloodstream causing a pile-up*. This is sometimes used as a secondary test for B12 deficiency, and/or homocysteine levels, although both can have other causes; renal and folate problems respectively. If you have a PA diagnosis, perhaps these tests were considered unnecessary.

I think you are right to go with your gut feeling

(pun intended: think I might be turning into a female version of clivealive !)

* I'm hoping fbirder does not read this explanation.

[Hidden in reply to Cherylclaire]

Thanks and your very straightforward explanation does actually make sense to me. I am on 5mg of folic acid and have been since I was diagnosed 2 months ago and have had 3 sets of loading injections. I’m getting folate checked mid July so will know if I am absorbing it or not. Not sure I will bother about asking about MMA unless anyone feels it necessary.

In relation to SIBO I am taking apple cider vinegar with the mother. I take it 3 times a day 15 mins before meals and after a few days I do notice some positive difference. I’m gettin my calprotectin tested again (it was 464!!) so I will be able to see if in test results it is killing the bacteria (all other tests for inflammation have been negative).

Thanks again. I love how helpful people are on here!

[Hidden in reply to Hidden]

So bit of an update. I went to see a functional medicine expert in London and she has ordered a full GI Map/disbyosis test/ and Intestinal permeability test and a lactulose breath test. She strongly suspects from my symptoms that I ahve both SIBO and a fungal infection caused by lack of stomach acid and she suspects that the pains I have are due to intestinal permeability (or leaky gut). this is important as there are clearly some cross over symptoms with B12D so it is essential to understand the root cause of pain so that it can be treated properly. I have since had a gastroscopy with biopsy and have some antral gastritis but the biopsies were clear thank goodness. The Gi did not think it was necessary to undertake surveillance gastrocospies but said I should come back in 3 years and have another one 'just to see'. What was interesting though was my calprotectin score (which is a measure of inflammation in the bowel). This had gone from 464 to 140, so a reduction of 2/3rds. I asked what had accounted for that and he said that if I was taking Betaine HCL, digestive enzymes and S.Boulardii they had clealry attritibuted to the reduction in inflammation. In addition, I take 2 tablespoons of coconut oil twice a day, apple cider vinegar twice and day and Himalayan salt water twice a day and one glass of water with chia seeds. All of these things fight bacteria and fungal infections and it seems that the inflammatory marker indicates this is working. I amt therefore sharing this in case it helps others. I still need to kill the bacteria and fungus but until I get the results of the tests I won't know what the protocol is or how successful I have been. Follow this post if you want to be kept up to date and wishing you all best of help. Keep well.

[fbirder in reply to Hidden]

Interesting that you had gastritis of the antrum but not the fundus or the body. That suggests that you do not have PA as that is caused by gastritis affecting the fundus and body.

[JGBH in reply to fbirder]

fbirder, would you be able to give me more information about that please? Any scientific paper - not too complicated as I did not study chemistry at degree level. Or a cllear explanation from you perhaps. I was not aware of the importance of the site for gastritis. So am really interested to learn more about this. Thanks.

[fbirder in reply to JGBH]

patient.info/doctor/pernici...

Pernicious anaemia is a autoimmune process that involves gastritis, atrophy of all layers of both the body and fundus of the stomach and loss of normal gastric glands, mucosal architecture, and parietal and chief cells. These cause achlorhydria (absence of gastric hydrochloric acid) and lack of IF.

This Wikipedia article mentions that autoimmune gastritis affects body/fungus while H. pylori gastritis affects the antrum.

en.m.wikipedia.org/wiki/Atr...

I got the info from my gastrologist.

[JGBH in reply to fbirder]

Will photocopy this information and use it when necessary.

Thank you very much.

It looks like you have a great gastroenterologist.

[fbirder in reply to JGBH]

Yes, I do. He likes being able to discuss things with somebody that can understand all the technical stuff.

In fact, it was his registrar that first suspected I might have PA.

[JGBH in reply to fbirder]

You are very lucky. Too often consultants do not like people who do sensible research (not clickbait websites) in order to discuss things with them. Many have dared tell me something to the effect of: "Doctors have done research (ahah) that shows evidene that doingresearch is bad for patients!"... Well, you can imagine what my reaction and reply are to that, never mind my looks.

I have come to the conclusion they probably will show more respect to an older man, no disrespect intended, and I hope you understand.

My gastro did not even want to admit that PPIs, taken long-term, destroy the stomach lining and cause serious problems of absorption and more. Rather defensively saying PPIs have been prescribed for a very long time and have a good track record. I have tried so very hard to find a way for him to help me. I an not a science graduate but am very well educated and intelligent. I was trained in 5 languages, science is not the sole preserve of intelligencia. Consultants should be intelligent enough to see that and respect it.

Admitedly, there are people who are not able to communicate clearly, or are not able to interact with medical professionals, but this is not my case. It is why I find it extremely frustrating and infuriating when they do not seem to want to cooperate and help resolve an on-going and debilitating problem. However, I have met the odd consultant who realised I was very able to discuss my health issues and possible treatment with him, but it is rare. This is the reason for which I have lost respect for many medical professionals over the years. I'd rather this were not the case.

I appreciate your input and always look for any of your posts on the forum.

[fbirder in reply to JGBH]

I’m not surprised that your gastrologist didn’t want to admit that long-term PPI use destroys the stomach lining, because there is no evidence that it does. There’s lots of other problems associated with them - uspharmacist.com/article/pr... - but destroying the stomach lining isn’t one of them.

Yes, I agree that an older male, like me, is more likely to be taken seriously by some doctors. I even had one day to me that my problems were those he might expect from a woman - then looked at me in a smiling ‘all blokes together’ look. He seeemd most surprised at my spluttered ‘What!’.

[JGBH in reply to fbirder]

Sorry for the delay in thanking you for your useful reply... I thought I had done.

[Hidden]

Beginner 1 thanks for checking in. I got all of my results yesterday and it was fascinating. I do not have SIBO, nor a fungal overgrowth nor Intestinal Permeability (leaky gut). That’s the good news. My GI Map ( a comprehensive stool analysis) showed I had low good bacteria and several high counts of bad bacteria in my colon and Salmonella at 5 times the accepted level. My body can’t get rid of it does to low IgA (comprised immune system). I’m being put on anti microbial, probiotics and gut support regime. Will let you know more when I get the treatment. If you can afford it I recommend you get these tests done. Wishing you good health. And firbirder acwee update: I am positive for PA!!

[Donnaca in reply to Hidden]

Hello, I just wondered how your health is since finding out your results and going on a new treatment.

Also how much did all the testing cost roughly? I would like to see your functional medicine therapist

[Hidden in reply to Donnaca]

Hi Donnaca. I’m sorry I did not see your question until now and I’m not sure why. I always want to find out how people got on so understand your interest. My health is better (certainly gut health anyway) - still struggling with PA. The testing is expensive if you use a reputable lab like I did. £300. But the results are very detailed and like nothing you get on the NHS. The people who do this work are experts. It has taken me a year to fix with a range of treatments using IBS clinics in London. Good luck with it all and let me know how you get on.