Gastritis and newly diagnosed coeliac

[Flower79]

Hello, I’m newly diagnosed 3 weeks ago. Had an endoscopy which showed mild gastritis and high white cell count. 
I’ve had nausea flare ups for the last 18 months which was thought to be h pylori, I had antibiotic therapy in September last year. Retested negative in January. 
 

The nausea is still happening, every few weeks and lasts from a few days to a few weeks. It’s constant during a flare up and I’m not coping. Is this the gastritis, or coeliac related? The consultant wants me on omeprazole, but I’m reluctant as I wanted to see what effect  gluten-free and a low acid diet had. 
 

im also dairy free, no alcohol caffeine.
 

[cristiana]

Hello and welcome to the forum, Flower!

I am sorry that you are still encountering symptoms.  They can take a while to settle.  It is difficult to tell what's going on if you have gastritis as well, as your symptoms could well be attributed to both conditions.  I have gastritis too sometimes - I get a burning sore stomach though, not nausea.

A few questions: how is the diet going?  Are you managing to keep to it strictly or do you think gluten may be sneaking in somewhere? Are you sharing a toaster with friends/family? (you will need a dedicated toaster).

If you are living in the UK (I note your spelling of coeliac!) it is worth joining Coeliac UK for your first year post-diagnosis.  They provide a guidebook to gluten free food and drink products you can buy in the supermarkets, as well as a Gluten Free Food Checker for your phone, but you have to join to be able to download it.  Otherwise make sure to check all product labels religiously and eat as much whole food/fresh fruit and veg as possible.  

Also, look up diets for gastritis online. There are a lot to chose from, but the key thing is to avoid very acidic or fatty food while your gastritis is healing. If you are a meat eater, avoid red meat for a while and instead I suggest slow cooking a big pot of chicken and root vegetables in stock, so that the ingredients are really soft and easy to digest.  I cook up large batches when I have a gastritis flare and heat it up for lunch.

I would have suggested cutting out dairy but see you are dairy free.  However, one other culprit for a significant minority of coeliacs are oats.  Many doctors in the UK suggest coeliacs give up oats for about six months after diagnosis, and then try re-introducing them.   Oats contain avenin rather than gluten, but this protein is a problem for about ten percent of us, and annoyingly I'm one of them!  I used to be able to eat oats pre-diagnosis but now if I eat them I get gastritis symptoms. When you do introduce them again, make sure they are Pure Oats as normal oats are processed alongside other cereals and can pick up gluten en route.

What dosage of omeprazole has your doctor recommended?  Have you taken it before?  Although it is important to get your gluten free diet straight, I do resort to a short course when my gastritis is bad, alongside my gastritis diet.

Cristiana 

 

 

 

 

Edited April 6, 2021 by cristiana

[Scott Adams]

Welcome to the forum!

Your symptoms could be consistent with either celiac disease or gluten sensitivity, but since you've gone gluten-free already you can't be screened for this. You need to be eating gluten daily for at least 6 weeks before a blood test for celiac disease will be accurate. However, if the diet works for you an the symptoms go away, there is a good chance you've found the culprit.

[Flower79]

22 hours ago, cristiana said:

Hello and welcome to the forum, Flower!

I am sorry that you are still encountering symptoms.  They can take a while to settle.  It is difficult to tell what's going on if you have gastritis as well, as your symptoms could well be attributed to both conditions.  I have gastritis too sometimes - I get a burning sore stomach though, not nausea.

A few questions: how is the diet going?  Are you managing to keep to it strictly or do you think gluten may be sneaking in somewhere? Are you sharing a toaster with friends/family? (you will need a dedicated toaster).

If you are living in the UK (I note your spelling of coeliac!) it is worth joining Coeliac UK for your first year post-diagnosis.  They provide a guidebook to gluten free food and drink products you can buy in the supermarkets, as well as a Gluten Free Food Checker for your phone, but you have to join to be able to download it.  Otherwise make sure to check all product labels religiously and eat as much whole food/fresh fruit and veg as possible.  

Also, look up diets for gastritis online. There are a lot to chose from, but the key thing is to avoid very acidic or fatty food while your gastritis is healing. If you are a meat eater, avoid red meat for a while and instead I suggest slow cooking a big pot of chicken and root vegetables in stock, so that the ingredients are really soft and easy to digest.  I cook up large batches when I have a gastritis flare and heat it up for lunch.

I would have suggested cutting out dairy but see you are dairy free.  However, one other culprit for a significant minority of coeliacs are oats.  Many doctors in the UK suggest coeliacs give up oats for about six months after diagnosis, and then try re-introducing them.   Oats contain avenin rather than gluten, but this protein is a problem for about ten percent of us, and annoyingly I'm one of them!  I used to be able to eat oats pre-diagnosis but now if I eat them I get gastritis symptoms. When you do introduce them again, make sure they are Pure Oats as normal oats are processed alongside other cereals and can pick up gluten en route.

What dosage of omeprazole has your doctor recommended?  Have you taken it before?  Although it is important to get your gluten free diet straight, I do resort to a short course when my gastritis is bad, alongside my gastritis diet.

Cristiana 

 

 

 

 

Hi Christiana 

Thanks for your reply. I’m finding the gluten-free diet fine, I really don’t mind it but it’s getting me down when I can’t get on top of symptoms, the gastritis is really effecting my mood-I feel so low and lethargic. I’m actually taking some time off work as I’m not coping too well with being ill so much. 
how often do you have a gastritis flare? The longest I’ve gone is 3 weeks, but sometimes it’s every week. The nausea is the worst for me as it’s constant.

The consultant has said to try 20mg omperazole-I’ve had it before when I just thought I had h plyori. I don’t really want to have it again in case there’s something else going on like SIBO. I’m planning on doing some tests to rule things out before I go down the ppi route.

thanks for the information on coeliac uk, I’ll check that out. 
 

And also will look at cutting oats  they’re my go to for a nice baking treat! 
 

I don’t really have gluten-free breads and not sharing toaster...but I guess I could get my own chopping board and knife to be safer. I always wash shared items in between use, but hard to know how stringent to be. 
 

 

 

 

[Flower79]

22 hours ago, Scott Adams said:

Welcome to the forum!

Your symptoms could be consistent with either celiac disease or gluten sensitivity, but since you've gone gluten-free already you can't be screened for this. You need to be eating gluten daily for at least 6 weeks before a blood test for celiac disease will be accurate. However, if the diet works for you an the symptoms go away, there is a good chance you've found the culprit.

Hi Scott,

I’m a seronegative coeliac as I didn’t respond to the doctors blood test-even though I was eating gluten at the time. It’s taken me 18 months to get a diagnosis which was from a genetic hla test and biopsy.

 

[knitty kitty]

Thought this case study might be of interest....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306676/

 

[cristiana]

3 hours ago, Flower79 said:

H. 
how often do you have a gastritis flare? The longest I’ve gone is 3 weeks, but sometimes it’s every week. The nausea is the worst for me as it’s constant.

 

Hiya Flower,

I have a flare every few months.  What I will say is that in the past I waited quite a long time before taking any medication for it.  Now I will give it a few days and if things don't improve will take just a few days' PPI.  For me - and everyone is different - it seems to help if I act fast and "nip it in the bud".  I know a lot of people won't touch PPIs with a barge pole but it has taken me quite a few bouts and trial and error to see that this is what works for me.   I quite understand your current approach, though, and I think a lot of people reading this would also approach things in the same way.

In a year, I might get through a max of 30 tablets of 20mg.  I used to use Ranitidine but sadly that's off the market now. 

Good idea to have your own chopping board esp. if others in your house are slicing bread on the board, etc.

C

[CMCM]

On 4/6/2021 at 10:03 AM, Flower79 said:

Hello, I’m newly diagnosed 3 weeks ago. Had an endoscopy which showed mild gastritis and high white cell count. 
I’ve had nausea flare ups for the last 18 months which was thought to be h pylori, I had antibiotic therapy in September last year. Retested negative in January. 
 The nausea is still happening, every few weeks and lasts from a few days to a few weeks. It’s constant during a flare up and I’m not coping. Is this the gastritis, or coeliac related? The consultant wants me on omeprazole, but I’m reluctant as I wanted to see what effect  gluten-free and a low acid diet had. 

 

im also dairy free, no alcohol caffeine.
 

I most recently (starting end of December) was plagued by a bunch of symptoms at once due to eating gluten when I shouldn't.  Severe vertigo, followed by a week to 2 weeks of mild sporadic dizziness, but in particular a severe flare-up of what I assume was some sort of gastritis.  Terrible pain, the worst I've ever had from this (which has always been sporadic in nature when I'd get it, and I would then use an omeprazole as a temporary fix for the attack, rather than take it prophylactically. It worked moderately well used this way.)  But this time was the worst episode I've ever had, I was doubled over with stabbing pain, and then it kept recurring over the next week or two in a milder way no matter what I put in my stomach.  I considered the possibility of  h pylori and all sorts of other things, but in the end I felt that perhaps my stomach was in such an inflamed state from the gluten that I needed to recover by eating a very limited diet.  I ate cream of rice cereal with banana for breakfast, and home made chicken soup with mostly broth and very few other things in it (small bits of chicken, celery, that's about it).  I drank only water and green tea.  After 2 or 3 weeks my stomach and digestive system calmed down.  

After that, aside from being strictly gluten, dairy and sugar free, I added more foods again but I cut out all grains entirely.  I eliminated sugar, caffeine, and basically for the last 3 months I've been very very careful with my food choices.  Result so far:  I haven't had another gastritis type attack at all or even a hint of one, so I have to think my idea that my stomach was in a severe state of inflammation was correct, and that cutting out all potentially irritating foods and limiting my diet helped the situation.

I've also been reading about how PPIs are often wrongly prescribed.  Technically, they address an over-production of stomach acid.  But apparently, rather a lot of people don't produce ENOUGH stomach acid, so if the PPI's are given when a person don't have enough stomach acid, this medication is worsening the already existing problem.  

Edited April 8, 2021 by CMCM

[Btekin]

On 4/6/2021 at 1:03 PM, Flower79 said:

Hello, I’m newly diagnosed 3 weeks ago. Had an endoscopy which showed mild gastritis and high white cell count. 
I’ve had nausea flare ups for the last 18 months which was thought to be h pylori, I had antibiotic therapy in September last year. Retested negative in January. 
 

The nausea is still happening, every few weeks and lasts from a few days to a few weeks. It’s constant during a flare up and I’m not coping. Is this the gastritis, or coeliac related? The consultant wants me on omeprazole, but I’m reluctant as I wanted to see what effect  gluten-free and a low acid diet had. 
 

im also dairy free, no alcohol caffeine.
 

Gastritis is the WORST!!!! it’s so hard to get rid of and honestly it took me 6 months to get rid of it if not longer and the only way and I mean the only way I got rid of it was omprazole 20mg 2 xs a day plus a cimitidine once a day! Also thought I had h pylori and it wasn’t but it was gastritis and I’m telling you that nausea and all that your explaining will not go away unless you dose up on those omeprazole and cimitidine! 
 

I was diagnosed with celiacs and from day one of going gluten-free I was astonished at how fast my symptoms disappeared. symptoms I didn’t know where symptoms. Like being fatigued etc and brain fog and acid reflux and nausea and etc. then 6 months later I started to feel like crap again and I started vomiting after I was cross contaminated for the first time and was so sick even though I kept gluten-free diet and I felt like I was sick again and it turned out I had gastritis (found on endoscopy) 6 months of my meds and I am back to feeling normal again. Highly recommend the omeprazole and cimitidine combo! 

[Scott Adams]

For what it’s worth at the time of my diagnosis I also had h pylori, which could have led to another wrong diagnosis for me, along with more treatment with antibiotics. It was the poor condition of my intestines that caused the h pylori to thrive, and it was the second time they diagnosed me with it, I refused the antibiotics this time, went gluten-free, and everything improved. 
 

I suspect many diagnosed with h pylori may have undiagnosed CD or gluten sensitivity as an underlying condition.

[CMCM]

3 hours ago, Scott Adams said:

For what it’s worth at the time of my diagnosis I also had h pylori, which could have led to another wrong diagnosis for me, along with more treatment with antibiotics. It was the poor condition of my intestines that caused the h pylori to thrive, and it was the second time they diagnosed me with it, I refused the antibiotics this time, went gluten-free, and everything improved. 
 

I suspect many diagnosed with h pylori may have undiagnosed celiac disease or gluten sensitivity as an underlying condition.

Interesting.  I  was going down that road of testing for h pylori, but for some reason I didn't contact my doctor about getting a test.  But as I said above, a very careful and limited gluten-free diet seemed to solve the problem, so I'm assuming it was not h pylori after all but rather, just a gluten inflamed stomach and upper intestine, which a limited diet allowed to heal.

Edited April 11, 2021 by CMCM

[Flower79]

On 4/8/2021 at 9:22 PM, CMCM said:

I most recently (starting end of December) was plagued by a bunch of symptoms at once due to eating gluten when I shouldn't.  Severe vertigo, followed by a week to 2 weeks of mild sporadic dizziness, but in particular a severe flare-up of what I assume was some sort of gastritis.  Terrible pain, the worst I've ever had from this (which has always been sporadic in nature when I'd get it, and I would then use an omeprazole as a temporary fix for the attack, rather than take it prophylactically. It worked moderately well used this way.)  But this time was the worst episode I've ever had, I was doubled over with stabbing pain, and then it kept recurring over the next week or two in a milder way no matter what I put in my stomach.  I considered the possibility of  h pylori and all sorts of other things, but in the end I felt that perhaps my stomach was in such an inflamed state from the gluten that I needed to recover by eating a very limited diet.  I ate cream of rice cereal with banana for breakfast, and home made chicken soup with mostly broth and very few other things in it (small bits of chicken, celery, that's about it).  I drank only water and green tea.  After 2 or 3 weeks my stomach and digestive system calmed down.  

After that, aside from being strictly gluten, dairy and sugar free, I added more foods again but I cut out all grains entirely.  I eliminated sugar, caffeine, and basically for the last 3 months I've been very very careful with my food choices.  Result so far:  I haven't had another gastritis type attack at all or even a hint of one, so I have to think my idea that my stomach was in a severe state of inflammation was correct, and that cutting out all potentially irritating foods and limiting my diet helped the situation.

I've also been reading about how PPIs are often wrongly prescribed.  Technically, they address an over-production of stomach acid.  But apparently, rather a lot of people don't produce ENOUGH stomach acid, so if the PPI's are given when a person don't have enough stomach acid, this medication is worsening the already existing problem.  

Thanks for your reply CMCM, gastritis certainly is awful. Mine flares every few weeks and main symptoms are nausea, lethargy, depression. I just can’t function with it. 
Clearly the restrictions to my diet aren’t enough so I need to consider either a very bland diet, or perhaps a PPI. I’ve also read about high or low stomach acid and how symptoms could actually be related to other causes such as SIBO, so I’m planning on testing for this first before going down the PPI route. 
 

[Flower79]

13 hours ago, Scott Adams said:

For what it’s worth at the time of my diagnosis I also had h pylori, which could have led to another wrong diagnosis for me, along with more treatment with antibiotics. It was the poor condition of my intestines that caused the h pylori to thrive, and it was the second time they diagnosed me with it, I refused the antibiotics this time, went gluten-free, and everything improved. 
 

I suspect many diagnosed with h pylori may have undiagnosed celiac disease or gluten sensitivity as an underlying condition.

Hi Scott, 

I wish I’d had my h pylori diagnosis at the same time as my coeliac as I agree, the h pylori could well be due to an imbalance caused by the coeliac. I feel like the antibiotics have messed up my stomach even more. 

[Flower79]

On 4/10/2021 at 4:24 AM, Btekin said:

Gastritis is the WORST!!!! it’s so hard to get rid of and honestly it took me 6 months to get rid of it if not longer and the only way and I mean the only way I got rid of it was omprazole 20mg 2 xs a day plus a cimitidine once a day! Also thought I had h pylori and it wasn’t but it was gastritis and I’m telling you that nausea and all that your explaining will not go away unless you dose up on those omeprazole and cimitidine! 
 

I was diagnosed with celiacs and from day one of going gluten-free I was astonished at how fast my symptoms disappeared. symptoms I didn’t know where symptoms. Like being fatigued etc and brain fog and acid reflux and nausea and etc. then 6 months later I started to feel like crap again and I started vomiting after I was cross contaminated for the first time and was so sick even though I kept gluten-free diet and I felt like I was sick again and it turned out I had gastritis (found on endoscopy) 6 months of my meds and I am back to feeling normal again. Highly recommend the omeprazole and cimitidine combo! 

Hi, thanks for replying. I’m so glad you’ve found an answer with these meds. I’m going to do some functional tests to try and provide direction on what I need. I’ll definitely be trying a PPI if needed. 
 

ive not heard of cimitidine-what’s that? 

[Flower79]

On 4/7/2021 at 9:30 PM, cristiana said:

Hiya Flower,

I have a flare every few months.  What I will say is that in the past I waited quite a long time before taking any medication for it.  Now I will give it a few days and if things don't improve will take just a few days' PPI.  For me - and everyone is different - it seems to help if I act fast and "nip it in the bud".  I know a lot of people won't touch PPIs with a barge pole but it has taken me quite a few bouts and trial and error to see that this is what works for me.   I quite understand your current approach, though, and I think a lot of people reading this would also approach things in the same way.

In a year, I might get through a max of 30 tablets of 20mg.  I used to use Ranitidine but sadly that's off the market now. 

Good idea to have your own chopping board esp. if others in your house are slicing bread on the board, etc.

C

Hey C, 

Good to know, thanks. I hadn’t thought of taking omeprazole as and when so that’s really useful to have that as an option. Going to do a SIBO test this week to see if that could be the cause, and from there see what options are.