Gastroscopy yesterday

[Maldeerum]

I had gastroscopy yesterday and there were no abnormalities seen that could explain my severe gastric pain episodes or B12 deficiency.

Several biopsies were taken from stomach and duodenum.

If I had autoimmune gastritis I’m assuming this would have been apparent during the procedure, is that right?

Concerningly my GP had made no mention of B12 deficiency or iron deficiency on my referral. It was a good thing I asked the endoscopist what I’d been referred for or she wouldn’t have taken the biopsies.

It’s a 3-6 week wait for results but I suspect I’m no further along with my quest for a diagnosis. Am I right in my understanding that autoimmune gastritis would be visibly apparent rather than only diagnosed from microscopic changes?

Many thanks

[Jillymo]

Hi Maldeerum,

My Gp was just as uninformative in his referal letter ! It is all very long winded and seem's such a long wait but let's see what the conclusion is. I was followed up with a colonoscopy. Were you given a paper copy of the proceedure after the exam ? Dont feel too down hearted at what the endoscopist has told you.

[Maldeerum in reply to Jillymo]

Thank you, I’m feeling really down today about it all. It’s such a battle to get any care and I feel spent. The GP did say we could consider colonoscopy. Thanks for your support.

[Jillymo in reply to Maldeerum]

I know exactly how you feel I have been there so many times. It is totally deflating especialy after waiting a long time to see the gastrologist in the first place. If colonoscopy offered go for it.

[Sleepybunny]

Hi,

Did they look at the whole digestive tract?

B12 is absorbed from terminal ileum. This is at the end of the end of the ileum where it joins the large intestine.

I think a gastroscopy might only look at the first part of the ileum (the duodenum) so problems at the end of the ileum might get missed.

Has your doctor thought about asking for a colonoscopy or capsule endoscopy?

[Maldeerum in reply to Sleepybunny]

Thanks it was just the stomach and first part of the duodenum because all my symptoms seem to point to pernicious anaemia. My GP has mentioned colonoscopy as a possible plan to investigate further.

[Artemisfowl in reply to Sleepybunny]

The small intestine is about 6 m long from the duodenum to the ileum. So they’re not going to look at the ileum via a gastroscopy.

[NOTI1]

Hi Maldeerum, This confuses me too; I do not have gastritis (normal gastroscopy), but did have intrinsic factor antibodies. I am diagnosed and treated for pernicious anaemia.

[Maldeerum in reply to NOTI1]

It’s such a difficulty trying to understand it all. I’m glad you were able to reach a diagnosis.

[Sleepybunny in reply to NOTI1]

PAS mention in this blog post about new NICE guideline B12 deficiency that some people have positive IFAb tests with no signs of gastritis.

pernicious-anaemia-society....

[WotNotAgainM8]

I too have had a Gastroscopy on Wednesday to investigate my stomach pains being experienced since November 16 2024. 4 biopsies were taken and like you I will have to wait 2 months or so before the results are known. I also have an appointment in April to check out the lower end of ‘my plumbing’, so that will be interesting to know the overall results of both tests. I have PA for the last 20+ years and self inject every 4 weeks. Appointment with GP on Monday. We’ll see what that reveals as GP’s seem to be uneducated to PA / B12 deficiency and the course of action. I believe that my stomach pain is due to a persistent cough over the last 2 years where the stomach walls have been rubbing together causing the irritation on the already thin stomach walls. After many tests I’m informed my cough is down to late onset asthma, however after 6 different asthma medications that have given no positive relief, I believe it is down to COVID episode in 2022. GP’s are clutching at straws and just simply do not know what to do other than poison us with chemicals….

[Maldeerum in reply to WotNotAgainM8]

I’m sorry you’re having a rubbish time too. I really hope we both get some meaningful outcomes from the biopsies.

[WotNotAgainM8 in reply to Maldeerum]

You would expect or at least think that an edoscopy department would be familiar with medications taken for complaints originating in the stomach, howver at my Gastrsocopy appontment when asked what medications I take the screening medic did not know what Hydroxocobalamin was and why I would be taking it? She obviously did not know that Pernidious Anaemia originates from the stomach not producing intrinsict fact that extracts B12 from the food we eat. Medical training has fallen short of the mark in recent years.

[Maldeerum in reply to WotNotAgainM8]

It's worrying isn't it? I hope things improve for us all.

[prillyb12 in reply to WotNotAgainM8]

I had a chronic cough for a long time. Then my kitty died and my sinus congestion and cough cleared up! I did not get a new pet. Recently, my cough returned. It took me several months to figure out that I was allergic to one of my dietary supplements....citrus sourced vitamin C. When I finally stopped it, my cough is 90% improved. During this time I've realized that dust will set off my allergic reactions so I have to keep a very clean house and change bedding regularly.

[Rolloliveson in reply to WotNotAgainM8]

I was interested in your mention of a cough. I have had a persistent, non-productive cough for a couple of years; in fact, it was what drove me to the doctor because the cough fatigued me so much on top of the extreme exhaustion I felt from what had been (mistakenly, I believe) diagnosed as ME/CFS. Due to the range of symptoms, many neuropathic, which I now have it has become clear that it is B12d, and I have been diagnosed and shown how to S/I by a doctor in Cambridge. I have been reading pretty widely since this diagnosis but cough does not feature very much. However, I came across this paper published by Turin University: pubmed.ncbi.nlm.nih.gov/212...

My cough presents as a feeling of obstruction and a compulsion to attempt, quite aggressively to clear my throat. This is never successful and in bad episodes I am doing this every thirty seconds. I try various palliative treatments: heavy-duty cough linctus, salbutamol sprays, saline - nothing ever works. It has resulted in a permanently painful throat, and voice changes.

This paper suggests that damage to the myelin covering nerves in the upper respiratory tract due to B12 deficiency is the cause. This seems plausible to me. I am hoping that the B12 injections eod will begin to effect an improvement. It may sound trivial, but it is wearing and distressing. After all, imagine having hiccups for years at a time!

[WotNotAgainM8 in reply to Rolloliveson]

VERY interesting, Thank you. I'll take this up with my GP on Monday.

[Rolloliveson in reply to WotNotAgainM8]

If that is the cause, then gabapentin is sometimes prescribed to 'mute' the hypersensitivity. I'm holding out to see if the B12 helps repair the tissues first, and because I'm still trying to gain a perspective on my various symptoms without being in a hurry to introduce a drug which may have side effects.

[WotNotAgainM8 in reply to Rolloliveson]

I already take Gabapenti for a Prolapsed / Herniated disc so in that case it should be assisting manage my cough.

[Fluffyfloo in reply to WotNotAgainM8]

Once you get a diagnosis of asthma, even when you tell them the asthma medicines are not working, it can be hard to escape from their wrong diagnosis. This happened to me with a persistent cough. I kept telling doctors I have something else, not asthma. Have they done a methycholine challenge on you that would suggest asthma? They never did one on me and ignored my complaints until I almost died in the emergency room upon contracting a cold. This caused swelling and inflammation in my throat which almost totally cut off my airway. I actually had a condition called subglottic stenosis which is benign but progressive and fatal if not diagnosed. Mine went undiagnosed for DECADES. A simple laryngoscopy that takes 2 minutes and has no radiation like a CT scan would is the best test for diagnosing this. They spray lidocaine up your nose and scope down below the vocal cords if possible to look for this. It's a totally benign test- I don't know why they never did it on me until I nearly died from this, along with their negligence over many years. Please ask for this test. Almost everyone who has this condition is misdiagnosed with asthma. Subglottic stenosis is often caused by an as yet undiagnosed autoimmune condition.

[WotNotAgainM8 in reply to Fluffyfloo]

Thank you. Good timing as I have a meeting with my GP tomorrow.👍🙏🫵

[Iheartb12]

Hi. Wondering if you read the actual lab report or if doc just told you everything came back normal?

I had an endoscopy a few weeks ago. Gastritis said everything came back normal, take a ppi and avoid nsaids. A while later I read the actual report. I have gastritis, lesions and hiatal hernia. That's what doc calls normal. Um ok. So I'm concentrating on fixing the hernia and continuing what I've been doing g for the pain and gerd (digestive enzymes were a game changer, mucilage and anti inflammatory teas). Gastro claims they've never heard of autoimmune gastritis and PA is unrelated to gastritis...

[Rolloliveson in reply to Iheartb12]

What do you plan to do to fix the hiatal hernia? There is a device - approved by the NHS since 2022 - which can strengthen the weak muscles which lead to this condition. It is called an IQoro - if you google it it will come up. I suspect that if the condition is really severe you may not be lucky, but it has been shown to work. You can buy them, but in certain circumstances they can be offered on prescription. Since ppis are not a good idea with PA/AG/B12d you might be able to suggest to your GP that this device could be a good alternative. It is recommended for GERD too, and has the advantage of being a drug-free solution. You would, of course, need to keep at it since it is a training device. Are the digestive enzymes for low stomach acid? If so, ppis really aren't a solution, and they shouldn't have recommended them.

I'm intrigued by the gastro's comment; my GP contacted our local haemotology dept for advice and was told that B12d wasn't anything to do with them and he should speak to gastroenterology. You can't win, can you ?

[Iheartb12 in reply to Rolloliveson]

I'm in the US and I've never heard of that device. Thank you so much for recommending. I will see if I can buy it. I hate medications. Docs are fully unconcerned about henia. I've had it for over 20 years but only now diagnosed. I've been doing jumping Jack's after eating and other stuff to physically push the stomach back down. Sounds silly but it works. Planning to see chiropractor for manual adjustment. Also breathing exercises, yoga n other stuff to strengthen diaphragm. I quit smoking last week. I do not understand why these docs don't know this stuff nor do they have interest in learning about it. Why would a hematologist say they don't handle PA? I feel docs are only good for the diagnostic tests I need but not even for interpreting results. Great for emergency medicine. Other than that I don't understand why I pay over $12k usd per year just for insurance and another $12k for out of pocket expenses. And it's the law here that I pay for this health insurance.

Idk if it's better over there but here you're better off just figuring it out yourself. This forum is amazing.

[Rolloliveson in reply to Iheartb12]

I've checked and, at the moment, they ship throughout the European Union. However, they have a form to fill if you are elsewhere - they may be expanding their reach. Otherwise, if you know anyone in Europe you could have it sent to, it could then be sent on. Import wouldn't be a problem as it is just a contraption made of plastic.

[Iheartb12 in reply to Rolloliveson]

Hey I found I can't buy the device in USA but I was able to purchase on ebay. It's new in box so hopefully it's good. I just received it and will learn how to use it this weekend. Thanks for the suggestion, I never would have found this thing on my own.

[Rolloliveson in reply to Iheartb12]

Good to hear! I hope it works for you; like most of these things it needs using regularly for a decent period. Their website is quite good for advice and motivation.

[Willowluv]

could pain be due to gluten? I have PA/autoimmune gastritis and my doctor told me to stay away from gluten and dairy which have done for years anyway. Being autoimmune you could have others, I have hypothyroidism which definitely affects the tummy amongst other things. X

[Maldeerum in reply to Willowluv]

I’m strictly GF and have minimal lactose (no milk, just hard cheeses like Cheddar). I also have Hashimoto’s.

[Willowluv]

aww ok. Is your thyroxine dose decent and do you have liothyronine too, this can help too. X

[Maldeerum in reply to Willowluv]

Thanks, I'm on NDT so have good T3. My thyroid is returning to stability after a dip (due to covid) but the gastric pain started before this, when my thyroid was stable.

[Willowluv]

oh, I’m sorry I can’t help but hope you get sorted soon xx

[Maldeerum in reply to Willowluv]

Thank you so much.