Help with diagnosing gut issues that suddenly started 18 months ago

[ak_83]

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 )

[b1b1b1]

You must have considered IBS, since you have come to this site. It is possible that the stale peanut butter caused a viral or bacterial infection and you in fact have "Post Infectious IBS".You might try the Fodmap diet and see if that helps. You can also consider a Motility specialist. These are a sub category of gastroenterologist, however there are not too many of them, so it can be a several month wait for an appointment.

[ak_83 in reply to b1b1b1]

I'm trying to first get a positive diagnosis, rather than oh well we've ruled out some things, so it must be the void that's called IBS.

Yes, once I've exhausted all diagnostic options I might consider low Fodmap.

[b1b1b1 in reply to ak_83]

As I understand it IBS is diagnosed when most other things have been ruled out. I know that that process can be very frustrating.

[ak_83 in reply to b1b1b1]

Have I posted to the wrong community perhaps? Is there a better one, which is not one where you haven't yet been diagnosed with IBS?

[Beetroot48 in reply to ak_83]

Hi ak_83. I don't have IBS ( no C or D) but still have digestive issues. ( Gas, affecting my breathing, Extreme stomach sensitivity etc etc) - but i can't get a 'proper' name for my condition. I think we have all got our individual symptoms and triggers and there is not one label that fits all IMO. Having said that, I've been reading your post.. and so sympathise with you,and your suffering. As well as the extent to which you are looking at how to solve it. My thoughts are PPIs are not good for your microbiome. ( A Dr said to me, it was fine, but i did research online - and they definitely affect your microbiome negatively) (I'll put the link on this post when i can) which may explain your lack of diversity in your gut microbiome samples after you'd taken Omeprazole for example. I've yet to read the rest of people's responses so will sign off for now. And might add something later . Take care

[ak_83 in reply to Beetroot48]

Thank you for the sentiment. It is frustrating indeed.

Thanks for the PPIs comment.

[Luisa22 in reply to ak_83]

It's possible low Fodmap might help whatever the diagnosis eventually is. Low Fodmap isn't forever. It's not intended to be. But it might put less strain on your gut while you are waiting for more definite answers. Everyone says how restrictive the diet is, but I don't think so. There are so many nice foods on the list. The low Fodmap diet isn't just relevant for IBS but for a few different gut problems.

[ak_83 in reply to b1b1b1]

Also if you notice I have low Calprotectin so unlikely to have IBS/IBD.

[Luisa22 in reply to ak_83]

As far as I can ascertain and my GP agrees, I have IBS. But I have no elevated calprotectin either. It is a marker for inflammation. There often isn't inflammation with IBS. It's a different animal from IBD, Crohn's and other inflammatory bowel conditions. (though sometimes one can have both IBS and an inflammatory condition at the same time.)

[b1b1b1]

I don't think so, but you can look at the list of all the HU sites to doublecheck.

[ak_83 in reply to b1b1b1]

There is Pernicious Anaemia Society. There are some posts suggesting below optimal B12 can have effects (similar ones to mine) on the gut.

healthunlocked.com/pasoc/po...

[Pte82]

ak_83, I appreciate your frustration in your search for resolution. Whether or not stale peanut butter was the trigger or a coincidence remains to be seen but that event marked a demarcation line leading to a consistant poor state. Looking over the things you've tried to find an answer looks like been there done it. There are some clues offering a possible connection that is being depressed and constipated. As you may know the the brain, vagus nerve and gut have a critical need for activated thiamine (vitamin B1). Thiamine needs magnesium as does vitamin D for activation. But you have used vitamins without seeing any benefit. That is possibly because, in the example of thiamine, it may not have been enough or the right form needed to pass through the blood/brain barrier in addition to the level needed by the nerves and gut. Depression, anxiety and other mental conditions benefit from thiamine and magnesium. The healthrising link offers information on why the need for high dose thiamine. The eonutrition link while addressing multiple conditions focuses on the fat soluble TTFD thiamine advantages to relieve them. The remaining two links are for information about anti thiamine factors and magnesium. ak_83. this may be the rock need to be turned over for a direction you need to investigate further, I hope so. Always consult your health care professional before using any supplement.

stuttersense.blogspot.com/2...

krispin.com/magnes.html

eonutrition.co.uk/post/when...

healthrising.org/blog/2021/...

[ak_83 in reply to Pte82]

Thanks Pte82!

Indeed Thiamine and Magnesium are also often needed in hypothyroidism. This, along with B12 might be the ticket out of the rut I've found myself in.

Will check out your links now...

[Pte82 in reply to ak_83]

Look for sublingual fast melt methylcobalamin B12. Yes, I was going to include hypothyroidism but figured you knew that. The problem thiamine presents is it's often subtle from person to person whose symptoms of deficiency lay just below the surface long enough that the proverbial two by four is needed to correct it.

[Suean]

Hi wow what a post ,I feel for you ,last October my symptoms started ,never had IBS before ,had scans various poo test ,all negative ,except they found incidental cysts on my pancreas,they don't think this is my problem ,my GP has given my numerous medication ,but the last time I saw him he said he couldn't help me anymore ,very comforting 😱 I'm seeing a gastroenterologist tomorrow,not sure what to expect But the symptoms are really getting me down Bloating after eating severe constipation,feeling there is a inflated balloon in my right side ,only go to the loo if I take a laxitive and that is not a normal movementI find it interesting you mention your thyroid,I had mine removed and depend on medication

Will let you know if I find any miracle cure tomorrow

I found this site has helped me just to know I'm not the only person suffering

[Peanut31]

Hi ak_83

I see you are ruling out lots of things for what is happening to you.

I have underactive thyroid and Hashimotos (autoimmune disease) and I suddenly started with tummy bloating.

I had lots of tests including coeliac test and came back negative.

However, even though it was negative I decided to cut out wheat and gluten all together and my digestive issues stopped.

I can see in your information provided you did a coeliac test and it was negative, but have you tried cutting wheat out for a while to see how you feel.

Just recently I started again with bloating, and did an in-depth stool sample via a nutritionist, this was the same one that suggested cutting out wheat, and discovered I had raised anti bodies as if I was eating gluten again.

I looked back at my diet and with the help of my nutritionist, realised my coffee consumption had increased to 4 -5 cups a day of black coffee, and my body was reacting as if I was having wheat.

I cut coffee out completely and I’m at lot better, I may try and introduce one cup back to see, but, at the moment I don’t miss it.

Hope this helps.

Best wishes

Peanut31

[ak_83 in reply to Peanut31]

Interesting.

Yes, coeliac has been ruled out via several different tests including the most accurate - stomach biopsy from the endoscopy. Same with dairy.

I'll see what happens with other things first before going gluten free as that's pretty extreme. But thank you for sharing and I'll keep it in mind.

[Beetru in reply to ak_83]

Going gluten free is not EXTREME. It's the norm for lots of people and not so difficult to do. ( I've been gf for a long time and I'm not celiac just intolerant !) There's loads of alternatives, just set your mind to do it,and you'll see all the alternatives appearing in front of you each day. Just a thought

[Evonne02]

Hi ak_83

Wow, never seen such a lengthy post. I think you have slow gut/bowel transit like I do. You need referring to a Urology & Colorectal Service to get to the end of what seems to be affecting you massively now. All the best 😍

[Hidden]

My story is similar to yours, as I too started just over a year ago. You have certainly been doing a lot of research, and I imagine your gastro was more informative than mine. The purpose of tests is primarily to discover what the problem is not rather than what it is, and to eliminate the possibility of cancer etc. It does sound from what you describe as possible IBS. As others have suggested, try Low FODMAP foods. I found probiotics useful too. I began the diet in April this year, and now (in June) it is finally starting to pay off. My IBS is complicated by the presence of a Hiatus Hernia, and the two issues antagonise one another, but real progress is happening. But if you are worried, please do seek further advice.

[Pajarorose]

You probably have IBS -- try low Fodmap now, don't wait for tests. If you are reacting to a food, don't eat it. I have IBS-C, which manifests when I eat Lactose, most fruits and fructans. I have to take alpha galactosidase to digest galactans, that is beans, peas, corn. If I follow diet carefully, I don't have symptoms.

This could work for you, but you but you must do the work. Good luck.

[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?

[Beetru in reply to ak_83]

According to Traditional Chinese medicine, white coating on tongue is 'dampness' IE stomach problem. I had this often when my stomach flares up . Have you sought any alternative treatments alongside the traditional Gastro Dr ( IE not Western medicine)... Just another thought ?

[Orchid99 in reply to ak_83]

Could be a sign of candida overgrowth

[worlikar]

The POWER OF THE MIND is infinite-keep telling this to yourself every single day and STOP all research on yourself,don’t make yourself a Guinea Pig.Believe in the power of positive thinking.We are what our mind thinks we are -this has worked wonders for many,many people.Trust in God,enjoy life

[Meleber]

This is not a medical advice, that's something I need to leave to the medical professionals! But based on my experiences till so far I can give you some suggestions.

You need to be sure that nothing is wrong with the structure of your complete gastrointestinal tract. Get a measurement of the transit time and a thorough scan / X-ray of your abdomen. Didn't read anything about testing methane producing organisms in your gut or maybe I just overlooked. Was there any fecal impaction visable (if you had already a scan / X-ray of the abdomen)? Try to clean your intestine thoroughly like a preparation for a colonoscopy. Do you feel better when you don't eat? Could be a mucus buildup in your intestines that's partially blocking your passage and also causing dysbiosis, pockets of gas and by this slow transit. But than the question is what's causing this sticky mucus buildup. Any members of your family having the same symptoms / problems? Did a medical professional ever think of a mild form of cystic fybrosis (CF)? Since you're in New Zealand you are a descendant of Western Europe immigrants? Maybe it's worth trying cinnamomum verum and berberine as natural antimicrobials.

As for me, I need to take laxatives multiple times a day to keep my intestines working, to prevent a complete obstruction. Had one in 2002 (ileus) and don't want to go through this again. I take 6 to 8 sachets of macrogol with electrolytes and also 3 times 10mg bisacodyl during the day. Can't eat insoluble fibres because bits get stuck and cause partial obstruction but also fat does cause severe problems. I have had al the proper examinations an nothing showed up. Now waiting for an appointment with an MD so I can get tested for a CFTR mutation (cystic fibrosis). Could be that I have a 'mild' form since I was born 54 years ago. If CF my problems with the intestines would be named iDIOS, incomplete distal intestinal obstruction syndrome. The problems with my gastrointestinal tract, in my abdomen 'suddenly' worsened some 8 years ago. Also weight loss, 10-13 kilograms and not being able to put on some more weight. Hope all of this makes some sense to you.