Gastritis but NO h pylori - what now?

[justy]

Title says it all really - my blood test for H Pylori came back negative (no furhter action required is what the receptionist said)

So what to do now - i cant take PPI's long term - what is causing my gastritis and stomach distress? could it be just from being overwieght and laying down a lot? these are listed as risk factors - i am not much overweight though and dont lie down all the time.

Any ideas? i was so desperate for it to be positive so that i could have treatment, now im back where i started - only on omeprazole as well as feeling nasty all the time.
So misearable about it. I have appointment to see GP in just over a week and she suggested she might send me for endoscopy to investigate further.

Justy.

 

[Nielk]

Hi Justy,

How was your gastritis diagnosed? I had gastritis diagnosed through an endoscopy years ago. I too didn't have H Pilori.
I took Prilosec for a few months and it eventually got better.

 

[justy]

Hi Nielk - it was diagnosed by the GP saying i had it from the symptoms i told him. He had a brief rpod of my midriff and gave me omeprazole - which i dont want to keep taking. I was told to take a two week course and then come back if it got worse (it did - ive had the pain etc for months and months) Then i saw a second doctor who did the test and said she would refer me for an endoscopy if it was negative. It was negative - but the way it works here is that i have to take the initiative to go back again and ask for more tests again - for someone with M.E this system is stressful and tiring.

Thanks for the reply - all the best to you, Justy x

 

[Nielk]

Hi Justy,

I feel your frustration with the medical system.
I understand not wanting to keep taking Omeprazole - which I believe is the same as Prilosec. I remember it taking a pretty long time for it to clear up and who knows if the Prilosec really helped at all or it would have cleared anyway.

I understand not wanting to take more tests. Maybe it's worthwhile to just wait a little longer?

Good luck and feel better.
Nielk

 

[maryb]

Sorry I haven't read all the thread justy and don't know whether its helps - Is it something in your diet? in the main I don't suffer from anything like indigestion, lots of other stuff but yesterday I was feeling absolutely starving when I came in, not too well or up to preparing a meal, so I ate 3 digestive biscuits, now I haven't eaten wheat for 4 yrs, don't ask me why I did it, I just get so fed up sometimes with my deprivation diet, but hey bad indigestion within an hr and all night. I soon reverted to my gluten free toast, proved I can't digest wheat/gluten..

 

[Gamboa]

I think you should definitely get a biopsy done. This way you can know for sure whether you have H pylori or not since blood tests aren't 100%. While having the endoscopy the gastroenterologist can also look for other problems such as cancer and celiac disease. I had one done last year and they took 5 biopsies from different areas and tested for H pylori and Celiac disease. The doctor looked for ulcers and other abnormalities as well.

Another avenue to investigate is Enterococcus infection in the stomach. There is a theory that chronic infection by an enterovirus causes CFS. Dr. Chia in California is a specialist in this field. My doctor was able to obtain my biopsies done last year at a lab here in Canada and sent them to Dr. Chia for look for Enterovirus infection. I don't have the results back yet.

Here are a couple of sites in case you want to look this up.

http://jcp.bmj.com/content/61/1/1.full

http://www.enterovirusfoundation.org/chronicinfections.shtml

Gamboa

 

[sianrecovery]

Justy, I dont know. something seems to be irritating the gut of alot of us. First thoughts - what water do you drink, what supplements do you take? Do the symptoms remit when you are elsewhere?
I found slippery elm taken as a kind of gruel three times a day (yum!) very help. My father, who did have H pylori, found mastic gum relieved his symptoms. He wouldnt take the abx.

 

[Allyson]

Hi Justy these things help me

avoid lactase...avoid all dairy if possible
if i eat any lactase i take 2 lactase caps first that makes a big difference

IBS diet ie the low FODmaps diet to reduce extra gas
google sue shepherd a Melbourne dietician for her excellent books on this
then before going to bed or if i have bad reflux i drink sodium bicarbonate - half to one teasopooon ina glassof lukewar or cold water
that settles any discomfort immediately

losing weight does help too if you have extra belly fat

 

[Allyson]

as to the cause ibs and reflux are very common symptoms of ME as i suspect is gastroparesis - but that is estrememtly hard to diagnose

 

[Allyson]

yes slippery elm helps
also sodi bic in water
also low FODMAPS diet - google sue shepherd a melbourne dietician on this
also lactose free and or dairy free diet helps me
and if i do consume dairy i take 2 lactase caps first and that helps a lot

 

[nanonug]

my blood test for H Pylori came back negative [...] So what to do now

H. pylori negative gastritis could be a sign of many different things, some quite nasty such as cancer. I would highly recommend an upper endoscopy with biopsy! That being said, doing a Metametrix GI Effects Complete Profile may also offer some clues, including testing for H. pylori in a different way.

 

[*GG*]

yes slippery elm helps
also sodi bic in water
also low FODMAPS diet - google sue shepherd a melbourne dietician on this
also lactose free and or dairy free diet helps me
and if i do consume dairy i take 2 lactase caps first and that helps a lot

what is FOD MAPS?

GG

 

[Allyson]

FODMAPs is the acromym for the diet to follow for IBS
the low FODmaps diet - google it and a lot comes up

it excludes fructans and fructose etc - things that generate excess gas in susceptible people
eg avoid apples but eat stone fruits - according to the fructose /glucose balance in the food i think
well established research and it really works
there are lots of books on it esp those by melbourne dietician ASue shepherd who did a lot of the research into it

i did a tirial on a high fodmaps diet for 2 weeks and a low one for 2 weeks and the high one made me really ill.
causes bloating and gas and heaps of other problems

 

[rlc]

Hi Justy, I recomend having a read of this http://www.helico.com/forums/docs/200808 stenstrom Hp Treatment.pdf it says that serological testing has a low diagnostic accuracy. So it would be a good idea to get other testing done, biopsy would be a good idea and they could see if you have celiac at the same time, I remember you scored quite highly on the celiac test. They do an endoscopy at the same time when they take biopsy samples which means they have a good look around with a camera and will be able to see if there is any thing else going on.

Hope this helps

All the best

 

[justy]

Saw the doctor again yesterday - stomach pain got worse again ON ompeprazole. She says to double dose - 20mg 2x daily for one month before they will send me for endoscopy. Even then she will only refer me if i dont feel better and then it will take at least 3 months to get to see someone 9thats if they consider it an emergency!)

Next week we are driving to the South of France for a 2 week holiday - the first time i have been well enough to go on holiday for 4 years and now this - i feel absolutely awful and so very very misearable. Also got diarrhea now to contend with which is going to be fun on a long road trip in high heat with no ait con in the car!!!!

I know i should be greatful im well enough to go, but so so so fed up of the pain and my digestion being screwed.
bahhhh!!!!
Justy

 

[nanonug]

stomach pain got worse again ON ompeprazole

This is not good. You really need that upper endoscopy! And just to make sure it is not caused by some kind of infection, I think it would be a good idea to do the GI Effects things... Anyway, try adding an H2 blocker such as ranitidine (Zantac) and see if that helps.

 

[jeffrez]

I have gastritis and probably an ulcer or two, also - going for gastro appt tomorrow, in fact. Tested negative multiple times and using different methods for pylori. Omeprazole worked the best for me, was able to get down to 10mg every other day and finally off it now.

DGL (deglycyrrhizinated licorice) worked fairly well for me, took 6 per day of this brand: http://www.iherb.com/Natural-Factors-DGL-90-Chewable-Tablets/2626

Simple chamomile and calendula seemed to help (http://www.iherb.com/Calendula-250-mg-90-Veggie-Caps/2861 ).

Slippery elm gave me rebound acidity and greatly worsened me. Also noticed that anything in an alcohol base, like tinctures, etc. would cause a flare. Ginger caused massive flare, along with any citrus, or some tomato products - too acidic.

Good luck - stomach pains are the worst! Hope we both find some relief. : -)

 

[justy]

Thank you Jeffrez - so sorry to hear you are suffering too, but nice to not feel alone. I actually feel at the moment that my M.E has improved substantially but i cant feel the improvment because of the terrible stomach issues. Maybe its an M.E thing, but i feel happier in myself and not so ill if i rest a lot still, even though i have more energy these days.

Thanks for the reminder about what helps and what doesnt. The chamomile tea did help me for a while but i forgot about it, so will start that again Also my tincture does tend to make the pain worse.

The doctor made me laugh when i asked her what could be causing it she said if it wasnt H Pylori then for most people they find relief from stopping smoking, stopping all alcohol, avoiding junk food and managing stress. Exactly what i did over 5 years ago - with no positive impact on my health at all so far. Oh yes and she mentioned cutting down on caffeine - i havent had any for 4 years. I eventually had to explain that i had M.E and hence why i was so concernd about my general condition and side effects of medication and she just looked at me blankly as if i was speaking vulcan.

I hope all goes well with the Gastro tommorrow
Take care, Justy.

 

[sianrecovery]

Aw, Justy, really sorry to hear this is continuing - endoscopy does seem like a good idea. As for the holiday, it will be interesting to see if being in a different environment, drinking different water etc will make a difference. It may improve! My foggy brain wont hold the rest of the thread, so I cant remember now what you wrote about stool testing, parasites, relative acidity etc. Its just that the anti acidity stuff I understand can make things harder if you have parasites etc. I know you know there's loads of potentially useful things on Sarah's website.
A desperate reset the button measure is just to fast if you can for 48 hours, and give the whole system a rest.

 

[justy]

Yes Sian, as you mentioned i do have worries about parasites - but no actual proof as yet. Im aware that antiacidity meds can wreak havoc with letting other nasties get out of control. Tried to talk to the doctor about this, but as you can probably understand, trying to talk about this stuff with an NHS GP is completely impossible - theres more knowledge on here!

I think most of the stuff on Dr Myhills website suggests low stomach acid causes most indigestion etc and that one should take betaine hydrochloride. However my stomach is classicly inflamed and as my doctor warned me - if i dont take the PPI'S even just for now i could get an ulcer or if i already have one end up with a bleed. I HAVE to reduce the acid for now.

Oh to be rich and just go next week for a private gastro appt and get an endoscopy just like that!

I have wondered if fasting might help - but one problem i have is extreme pain of i dont eat - eating eases the pain, and as long as its not fruit or tomatoes (i know - they are a fruit) then i seem to be able to eat anyhting at all.

Thanks for all your concern.
Justy.