Help with diagnosing gut issues that suddenly started 18 months ago - Related to sub-optimal B12?

[ak_83]

Hi - this is a repost from IBS Network community. I saw posts on here that lower than optimal B12 could be the cause of my gut issues, which dont' seem to be IBD/IBS as calprotectin is low. Any advice - let me know!

I'm new to this community and hoping to get some guidance on my gut issues. The heaviness, bloating and slow digestion started suddenly 18 months ago and I'm failing to get a diagnosis with my gastroenterologist. I would be very grateful if anyone could provide an insight into what this could be or at least, which tests to press for next.

Background

I am a 39 year old male, 6 foot tall 72 kgs. I've had hypothyroidism (low thyroid function) since I was 20. I treat it with full replacement thyroid, which is a combination of T3 and T4 to make sure my blood thyroid tests are in good range. Aside from this I don't have any other conditions such as diabetes or heart disease. I've certainly never had gut issues before.

Although I work in an office/home as an IT proffessional, I am quite active with several gym workouts, a run and a bike ride per week. So I love exercising and working in the garden. Definitely not cedentary.

I've always prided myself with being able to eat just about anything in large amounts without consequences. Food for me is especially important for source of energy and to lift my mood with my thyroid condition.

I've had a sweet tooth ever since I can remember. As an adult I love having a morning barista coffee in the morning. I enjoy a bit of alcohol too. I do moderate my food vices. I never have more than 1-2 coffees a day, have my sugars and alcohol on weekends only too.

All this food enjoyment came to an end last Easter (about 18 months ago) when a sandwich of some stale peanut butter seems to have triggered the current gut issues I'm having.

Over the last 18 months the condition sometimes would seem to go away and come back in waves, but since around February this year things got worse and it became constant.

What I have Tried

I have tried various things on my own such as probiotics, bone broths, vitamins, obstaining from certain food groups. Nothing gave it even a nudge.

My latest effort is over the last 9 weeks I have been on a no junk diet with mostly homemade foods with no alcohol, caffeine and added sugars and no snacking such as peanut butter sandwiches. For me with a sweet tooth and a love for food, this hasn't been easy to say the least. Unfortunately, even this sweeping effort seems to have gone in vain, because it has made no difference to the symptoms. At least I know it wasn't the sugar, caffeine or alcohol that was causing the issues.

Medications

Omeprazol

Through my GP initially I've tried Omeprazol to suppress hydrochloric acid - big fail. Made things worse.

Domperidone

My gastro gave this to me initially when I was in bad shape. It didn't really work either. After I stopped a day or two later I had a weird on/off large bowel movement and it seemed to make things better for one day, but it was a one off. Besides, this is a very short term medication.

Amitriptyline

My gastro thought it might be a nerve breakdown between my stomach and brain (gastropareses). It didn't work either. Made me depressed, constipated and deprived me of what energy I had left. I concluded it isn't really gastropareses because of this but also because of symptoms (see some more below on this).

Symptoms

- Bloated (a little belching) and heavy feeling around the stomach area ~2+ hours after a meal

- Feels like my stomach / gut isn't processing my meals properly - they just "fall in there"

- Bowel movements are smaller in volume and sometimes do not occur every day like they used to

- Less energy from food than I used to. Before, I would eat for energy and would usually feel a surge and warmth through my body. Now that's not happening.

- Less as the weeks / months go by - (I think as a result of the above)

- Weight loss - With my current diet (see below) I have lost over 10 kg from an already skinny weight of 72 kgs

Symptoms I do NOT have

- Nausea

- Vomiting

- Diarrhoea

My Current Theory

Something is going on in my upper small intestine - between the stomach and where colonoscopy can reach. The food is not getting digested properly there hence the gasses, cramps. This interferes/slows bowel movements and means energy from food is not being released into the body properly.

What could this be?

Gastroparesis

This where the stomach-brain nerve connection is damaged and the stomach cannot contract properly. My gastro thought it might be that and I've tried 3 weeks of Amitriptyline. I felt horrible on it. All the side effects and my symptoms are not getting better, but probably getting worse. Plust the symptoms don't really correspond - I don't feel full after just a few bytes (it's quite some time after), I don't have reflux, heartburn, throwing up undigested food or upset stomach.

Low Hydrochloric Acid

Sometimes this does accompany hypothyroidism. But this seems unlikely. Why did I develop this suddenly? Nevertheless my plan is to try to supplement with some HCL + Pepsin and see if it has any impact.

Small Intestine Partial Obstruction

This feels like probably the closest of what it might be, but again some symptoms don't correspond like extreme pain and diarrhea. But I feel like the right scan would show up if there is anything structurally wrong with my small intestine - any twisting, deformation, change of diameter etc - anything that would stop food going through it.

What's Next - ANY ADVICE?

Has anyone here face something similar? If so what solved it for you or at least what made the improvement? I'm struggling to make any impact on my symptoms at all. Anything I try makes things worse, not better!

Which test would be best to perform and what justification could I give my gastro for performing them? I've read about CT scans, X-rays, swallowing tablet tests etc. My gastro is very VERY reluctant to do this. He adopts

an evidence based approach". As a result I'm just hanging there. I would rather performa a comprehensive "battery of tests" and draw conclusions from them all. Of course, he is just preserving resources for other patience, I know.

Tests Completed

Over the 18 months I have done the following tests.

SIBO

Lactulose & Glucose - Negative

Endoscopy

Negative (including all biopsies eg celiac disease, cancer etc)

Microbiome

Doctors Data (US Company) Comprehensive Stool Analysis + Parasytology (3 days samples).

(Sample report: site-akiajqrf22xmaqzsiz6q.s...

1) It found just a few Blastocystis parasitic bacteria. It can be treated using Metronidazole. It's a long shot, but getting this done over the next two weeks.

2) 2 types of good bacteria (Lactobacillus and Enterococcus) are missing (no growth in sample) and Bifidobacterium is very low. Will take some form of strong probiotic together with prebiotics a little later.

This comprehensive test was my big bet to actually find the root cause of my misbehaving gut. I was hoping it would find a parasite, a virus or a bacterial pathogen or something glaringly obviously wrong. I feel it hasn't delivered. The two points above to me are probably just a consequence of another root cause, yet to be found. For now though I will still pursue these as i have nothing else to go on.

NutriPath - 2206 Complete Microbiome Mapping (yes another Microbiome test - I wanted to be sure) - single sample only

(Sample report: nutripath.com.au/wp-content...

This was a bit contradictory to Doctors Data one, which I believe more. The only extra thing this is showing is Faecal Zonulin was just over the max range. But the explanation seems to be that something else really causes it to be out of balance. So nothing direct can really be done...

Colonoscopy

Just had a colonoscopy 2 days ago. It was mostly clean, except for two smallish ulcers at the junction of large and small colon. The specialist guesses it *might* be what's causing my symptoms, but I'm sceptical. The full report with biopsies to come back in 2 weeks, so it should detail how to deal with the ulcers.

Blood Tests

Most are negative / healthy, except for white blood cell count was at lower range as well as b12 and Folate. So have started supplementing with b12 and folic acid (this helps with cellular thyroid function too). Exact details below:

Lipids

Fasting status:Non-fasting

Cholesterol:4.9 mmol/L

Triglyceride:0.4 mmol/L

HDL Cholesterol:2.10 mmol/L

LDL cholesterol:2.6 mmol/L

Chol/HDL Ratio:2.3

Faecal Calprotectin

< 16 ug/g (0 - 50)

B12/Folate

B12: 383 pmol/L ( 170 - 800 ) LESS THAN 50%

Folate: 19.5 nmol/L ( 9.0 - 45.0 ) LESS THAN 50%

Glycated Haemoglobin

HbA1c:34 mmol/mol ( < 41 )

Results in range <41. In the setting of diagnosis or CV risk screening, this result virtually excludes diabetes. No need to repeat until next

Coeliac Antibodies

anti TTG IgA:8.7 CU ( < 20.0 )

TTG IgA Interpretation:Negative

IgA:3.0 g/L ( 0.8 - 4.0 )

Complete Blood Count

Haemoglobin:146 g/L ( 130 - 175 )

RBC:5.02 x 10e12/L ( 4.30 - 6.00 )

Hct:0.45 ( 0.40 - 0.52 )

MCV:89 fL ( 80 - 99 )

MCH:29 pg ( 27 - 33 )

Platelets:296 x 10e9/L ( 150 - 400 )

WBC:3.9 x 10e9/L ( 4.0 - 11.0 ) LOW

Neutrophils:1.5 x 10e9/L ( 1.9 - 7.5 ) LOW

Lymphocytes:1.8 x 10e9/L ( 1.0 - 4.0 )

Monocytes:0.4 x 10e9/L ( 0.2 - 1.0 )

Eosinophils:0.1 x 10e9/L ( < 0.6 )

Basophils:0.1 x 10e9/L ( < 0.3 )

Nucleated RBCs:0.00 x 10e9/L

Iron Studies

Serum Iron:23 umol/L ( 10 - 30 )

Ferritin:172 ug/L ( 30 - 500 )

Transferrin:2.3 g/L ( 2.0 - 3.2 )

Transferrin Saturation:40 % ( 16 - 45 )

Renal Function Tests

Sodium:141 mmol/L ( 135 - 145 )

Potassium:4.7 mmol/L ( 3.5 - 5.2 )

Creatinine:81 umol/L ( 60 - 110 )

eGFR:>90 mL/min/1.73m2

An e-GFR result >/= 90 ml/min/1.73m2 falls in the range found for healthy

Liver Function Tests

Total Bilirubin:18 umol/L ( 2 - 20 )

Alk. Phosphatase:45 U/L ( 20 - 110 )

GGT:10 U/L ( 10 - 50 )

ALT:14 U/L ( 5 - 40 )

Total Protein:76 g/L ( 65 - 80 )

Albumin:44 g/L ( 34 - 48 )

Globulin:32 g/L ( 25 - 41 )

Quantitative Crp

CRP:<3 mg/L ( < 6 )

Thyroid Function Tests

Free T4:20.2 pmol/L ( 12.0 - 22.0 )

TSH:0.03 mIU/L ( 0.40 - 3.80 )

Free T3:6.5 pmol/L ( 4.0 - 6.8 )

[Gambit62 Administrator]

Sorry but we don't talk about optimal levels of B12 on this forum. If anyone is going on about needing to have a specific B12 level for gut health then I would ignore them. Optimal is what is right for a given individual and with B12 it varies considerably. What you do see with individuals is that B12 ranges are quite constant unless they have a B12 absorption problem, in which case they will be falling overtime.This forum is about a specific auto-immune disorder that attacks a rather specialised used in the gut to absorb dietary B12 - this is also involved in the process that releases stores of B12 to regulate serum B12 levels which is why a B12 absorption problem sees levels falling over time - so a B12 absorption problem can't really be diagnosed from a single serum B12 result.

Low stomach acidity is another condition that will affect B12 absorption. It is common in patients with PA as it also attacks the cells that produce stomach acidity.

Hypothyroidism can also cause slow gut transit.

As far as I am aware the causal relationship is low stomach acidity leading to B12 deficiency not the other way round.

[Nackapan]

My daughter went through a very similar testing route .

She simply coukd not digest properly.

It sat like lead .

She has One 'emergency drug 'prescribed that helps mobility of digestion going but rarely needs it now and definitely short term.

I will have to ask what it is .

She narrowly missed tube feeding abd refused.

Liqiud meals.

Thats when too much weight lost.

She used fodmap to work out what it was her body stopped being able to process.

It took a long time

She has ended up

Gluten free

Diary free

Fructose free

Red meat free

Egg free

Caffeine free

Alcohol free

Has alot of seeds and nuts buckwheat flour

Tofu ect

This diet was totally alien to her.

She also had a sweet tooth

Ate everything

I can only remember her disliking cheese as a child.

Food for energy as you say fo a very active life. This stopped.

She needs folic acid daily as a maintenence dose despite eating alot of chard ect.

B12 injections

Low ferritin was mimicking thyroid problems and was told was told sub clinical level thyroid ...no treatment as a strage distribution weight gain

Hospital dietician supports her limited diet.

For her she eventually got diagnosed

With HEDs ( ehlos danlos ) I never thought of connrctive tissue problems. Internal hypermobility.

She also has pots . That's been caused by undiagnosed b12 deficiency/ PA. .megobolastic anaemia

Small regular meals work.

She's introducing g foods back very slowly to test.

So once infection ruled out.

Food allergies

Mechanical gut function

Tumours cysts polyps

Ulcerative colitis

Ibs

Concentrate on food.

She also is off any anti acids for years

Her staple on a 'bad day'

Avocados and a maize crisp?

Never had any comprehensive reasons.

It is managed.

Hef weight hax swing violently.

Metabolism very slow now.

Because of her now known conditions.

Swimming her main exercise .

Recently did a 'swim the channel'

Programme at her local pool.

So although medical condition complex.

The gut symptoms and mobility sound similar.

As you had a contaminate

Have you had a course of antibiotics?

She wax taking a daiky prebiotic which helped. I think stopped now as can eat more.

Hope you find the cause or solution.

Minefield

[ak_83 in reply to Nackapan]

Wow. That's very intense! Thank you for sharing and hope your daughter feels better.

[jade_s]

Testing for pernicious anemia includes intrinsic factor and gastric parietal cell antibodies. Gastrin and pepsinogen tests might be useful to try and demonstrate low stomach acid.

Have you tried drinking lime juice or apple cider videgar, or taking betaine hcl, to help with digestion?

You might look into Kefir as a probiotic source. Many of us swear by it.

Good luck!

[ak_83 in reply to jade_s]

Thank you. I will be trying Betaine HCL soon as well as pre and pro biotics. Thanks for reminding me of kefir - I've heard good things too.

[Sleepybunny]

Hi,

I hope you find answers and get the help you need.

I am not medically trained.

Forum members often report Vitamin D deficiency as well as B12, folate and iron deficiencies.

Gut issues can be associated with pernicious anaemia(anemia in US).

Do you know what tests were done for coeliac disease (celiac in US)?

There are some situations in which a person with coeliac disease may get a negative test result in the tTG IgA test.

1) If they have IgA deficiency

2) they weren't eating enough gluten prior to testing

Pernicious anaemia and coeliac disease are two auto immune conditions that can lead to B12 deficiency.

You mentioned ulcers and I wondered if you'd ever been tested for H pylori infection, which can be associated with gut ulcers. H Pylori infection can lead to B12 deficiency.

From personal experience it is possible to have severe B12 deficiency symptoms with a serum (total) B12 result that is well within range.

A few more links that may be of interest which I've copied from another thread.

It's possible some of them may have details that could be upsetting.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society), UK based charity.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Charity based in Wales, UK. Has some members not in UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

A recent PAS newsletter Spring 2022, mentioned a new PAS support group starting in Chicago area. As far as I know this is the only PAS support group in US.

PAS should have contact details if you're interested.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute- Netherlands has useful lists of symptoms and causes of B12 deficiency

b12-institute.nl/en/home-2/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Sally Pacholok, author of book "Could it Be B12" has written several online articles so may be worth googling her name.

US article about B12 deficiency

nhlbi.nih.gov/health/anemia...

I'm in UK and usually suggest to UK forum members that they find out any regional B12 deficiency guidelines for their part of UK.

US newspaper article about B12 deficiency

chicagotribune.com/lifestyl...

I am not medically trained.

[Littlelodge123]

I have had ALL of these symptoms and tests. Your colon is your waste factory and is not a proxy for your small bowel where it sounds your symptoms are, like mine. A couple of things. What did your SIBO text for? Was it just hydrogen or also methane? The latter drives constipation and feeds off hydrogen making your test negative. A good gastroenterologist will know this but they’re few and far between. Low stomach acid is essential for nutrient absorption and to kill pathogens particularly in your upper gut. I supplement with HCL Betaine. The one test I didn’t see you mention was fecal elastase which measures pancreatic function. EPI, exocrine pancreatic insufficiency is associated with PA snd SIBO. God luck

[ak_83 in reply to Littlelodge123]

Right. I will note these down for my next appointment.

No I haven't done the methane SIBO, just the two common ones, but I've since learned that the symptoms do not really correlate to SIBO anyway.

[Littlelodge123]

Good luck and do let us know how you get on. It will be very helpful too others too. All the best.

[ak_83]

Just to add. One of the symptoms I have is my tongue is coated white/greening in the morning or whatever prominent colour that food that I last ate was. Is that a low stomach acid symptom with Betaine HCL best to help with it or something else more telling?

[jade_s in reply to ak_83]

Perhaps nighttime or silent reflux? But they would've seen signs on the endoscopy.

If white, could be thrush/candida if things are out of balance and you don't have enough good gut bacteria. It would fit with the digestive issues/test results you've described.

I second sleepybunny's comment about having b12 deficiency (symptoms) even with in-range results.

[jade_s in reply to jade_s]

How's your blood sugar? Hba1c ever tested? Fasting morning glucose is insufficient.

[ak_83 in reply to jade_s]

Blood sugar is fine and no yeast

[jade_s in reply to ak_83]

Ok good.

I'm out of ideas i'm afraid.

[ak_83 in reply to jade_s]

No reflux issue

[AlwaysTiredxxx]

Hi

Sorry about your problems.

Your TSH is well below range. According to Dr Google this indicates hyperthyroidism.

I think you need to get your thyroid meds reviewed and get these in range before doing anything else.

I have slow transit constipation and that causes many of the symptoms you mention. Your stomach small bowel and colon are all close together. My doctor told me the neat diagrams of where everything is are representative only. In reality the bowels can be all over the place. So don't be relying on these to work out which bit isn't working.

If symptoms don't improve with thyroid levels sorted then you need to see a gastroenterologist.

Wishing you well.

[ak_83 in reply to AlwaysTiredxxx]

Thank you.

My thyroid is sorted. Suppressed TSH is frequently seen once you medicate with full replacement.

If you see my description I AM seeing a gastroenterologist. Have done endoscopy and colonoscopy as well as comprehensive microbiome and stool analysis etc.