Seems like I can't tolerate any sort of PPI

[BeccaBees]

My GI doctor prescribed me Nexium so I bought it OTC, I read online it was gluten free have no idea how accurate it was but I am desperate for relief. I have terrible reflux, and I've been eating bland for months (think plan rice and potatoes if I add seasoning its only salt I cut out pepper, onion, and garlic, and dairy and soy and  gluten I've been gluten free for 7 plus years now I have celiac disease), I elevate my pillow  and only drink water to no relief. Its constant burping, chest pain, and regurgitation, stomach pain. I tired this medication and noticed the roof of my mouth began to itch, but I wasn't quite sure this was the cause so I stopped for one day then took it again. This time about 15 mins after I had huge hives all over my back, it felt like a tingling burning sensation. I went to a pharmacist and she told me to stop immediately.  i did notice a small difference after taking it though my chest pain and burping wasn't as bad. This is the third PPI my GI prescribed me before it was Prilosec  (that wasn't OTC  but the generic Omeprazole) which made it hard to breathe, then before that it was something else that I cant recall the name of. I am trying Target brand famotidine as recommended to me by an ENT doesn't seem to make much of a difference, but at least I don't break out with the famotidine. I have read that taking PPI long term can cause more issues but I am desperate to be able to eat again, I haven't gone  a day without pain in over a year now and I am thinking of switching GI doctors and maybe get evaluated again not sure.. 

[cristiana]

Hello Becca and welcome to the forum

It sounds like you have done the right thing to come off your PPI if it is causing tingling in your mouth. 

I have a dear friend who struggles with chronic gastritis and also the PPIs she's been prescribed over the years to combat it.  Eventually she found relief with Ranitidine, a different class of drug, which suppresses the amount of acid the stomach makes, but that is no longer prescribed in the UK, so she is now taking another medication - I think Cimetidine.  It sounds as if Famatodine is similar.  How much are you taking, how often, and when?  

But as a sufferer of gastritis-like symptoms and reflux myself, although my symptoms are triggered by many things, accidental gluten consumption seems to be one of them.  It sounds as if you are eating a bland diet but is there any chance that small amounts of gluten are sneaking in anywhere?  Do you share a house with gluten eaters and if so, can you be sure any utensils you share are properly washed?  Are you eating out a lot? - this is probably one of the major ways one can end up consuming small amounts of gluten?  In my own case I thought was being super strict but eventually realised that I was taking a supplement which contained gluten (mixing up Floradix with Floravital, the packaging here in the UK is very similar).  A dodgy dishwasher that was leaving residue, and a none-too-clean shared oven were also part of my problem.  Once I'd really addressed these issues I felt much better.

I think what might be worth doing, too, is having a repeat round of coeliac blood tests again to see if gluten is the problem.  Also,  has your gastroenterologist checked you for helicobacter pylori as that could cause the symptoms you describe?  That could be another issue.  When did you last have an endoscopy?

Sorry for all the questions!

Cristiana

 

Edited January 3, 2024 by cristiana

[Scott Adams]

Have you tried probiotics and digestive enzymes? Also, some of the symptoms you've described may be associated with nutrient deficiencies, which are quite common in those with celiac disease. 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

More info:  

 

 

[trents]

Ironically, gastric reflux is often caused by hypoacidity in the stomach rather than hyperacidity. PPI's reduce acidity or, to put it another way, PPI's increase the PH of the stomach which interferes with digestion and nutrient absorption and increases the risk of GI track infections. Personally, I have suffered with reflux for years, along with a hiatal hernia which exacerbates the reflux. After many years of tasking a PPI I weaned myself off it because of the risks associated with long term PPI use. That was not easy. I substituted TUMS instead to treat the reflux flareups as they occurred rather than suppressing acid production 24/7 with a PPI. Recently I discovered something very simple and natural that has made a huge difference for me and that is apple cider vinegar. I dilute 1 tablespoon of apple cider vinegar with about 5 oz of water and drink it immediately before eating a meal at breakfast and at the evening meal. Another tidbit and that is our tap water here is very basic. I've tested it with litmus paper strips and it is about a 10 on the pH scale. So, everything we cook and eat and drink that water is added to comes out pretty high on the pH scale and I can't help but wonder if that was contributing to the reflux, sort of a rebound by the body. The apple cider vinegar water may be correcting that. This is my theory. Works for me.

[BeccaBees]

On 1/3/2024 at 3:57 AM, cristiana said:

Hello Becca and welcome to the forum

It sounds like you have done the right thing to come off your PPI if it is causing tingling in your mouth. 

I have a dear friend who struggles with chronic gastritis and also the PPIs she's been prescribed over the years to combat it.  Eventually she found relief with Ranitidine, a different class of drug, which suppresses the amount of acid the stomach makes, but that is no longer prescribed in the UK, so she is now taking another medication - I think Cimetidine.  It sounds as if Famatodine is similar.  How much are you taking, how often, and when?  

But as a sufferer of gastritis-like symptoms and reflux myself, although my symptoms are triggered by many things, accidental gluten consumption seems to be one of them.  It sounds as if you are eating a bland diet but is there any chance that small amounts of gluten are sneaking in anywhere?  Do you share a house with gluten eaters and if so, can you be sure any utensils you share are properly washed?  Are you eating out a lot? - this is probably one of the major ways one can end up consuming small amounts of gluten?  In my own case I thought was being super strict but eventually realised that I was taking a supplement which contained gluten (mixing up Floradix with Floravital, the packaging here in the UK is very similar).  A dodgy dishwasher that was leaving residue, and a none-too-clean shared oven were also part of my problem.  Once I'd really addressed these issues I felt much better.

I think what might be worth doing, too, is having a repeat round of coeliac blood tests again to see if gluten is the problem.  Also,  has your gastroenterologist checked you for helicobacter pylori as that could cause the symptoms you describe?  That could be another issue.  When did you last have an endoscopy?

Sorry for all the questions!

Cristiana

 

Hello! I'm taking 20 mg of famotidine and don't eat out at all, its been about a year in a half since I ate out anywhere. I didn't mention this but I have trouble swallowing. I do live with gluten eaters and we share the same pots and pans i do try to clean and rinse them with hot water and soap but I may look into just getting my own separate utensils just to see if that helps any. My GI really wants me to be on PPIs but I just cant tolerate them unfortunately. He hasn't tested me for Pylori the last time I was tested for that was about 4 years ago by my allergist. I have an upcoming endoscopy with biopsy in a few weeks. The last endoscopy I had was around the same time I had the pylori test. They dilated me but that was about it. 

[BeccaBees]

On 1/3/2024 at 11:29 AM, Scott Adams said:

Have you tried probiotics and digestive enzymes? Also, some of the symptoms you've described may be associated with nutrient deficiencies, which are quite common in those with celiac disease. 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

More info:  

 

Hmmm! I will read more about this. The only doctor to ever test my vitamins level was my endocrinologists  when I was having thyroid problems a few years back. She said my vitamin D levels were extremely low, and told me to take some supplements I haven't been tested since

[BeccaBees]

On 1/3/2024 at 3:48 PM, trents said:

Ironically, gastric reflux is often caused by hypoacidity in the stomach rather than hyperacidity. PPI's reduce acidity or, to put it another way, PPI's increase the PH of the stomach which interferes with digestion and nutrient absorption and increases the risk of GI track infections. Personally, I have suffered with reflux for years, along with a hiatal hernia which exacerbates the reflux. After many years of tasking a PPI I weaned myself off it because of the risks associated with long term PPI use. That was not easy. I substituted TUMS instead to treat the reflux flareups as they occurred rather than suppressing acid production 24/7 with a PPI. Recently I discovered something very simple and natural that has made a huge difference for me and that is apple cider vinegar. I dilute 1 tablespoon of apple cider vinegar with about 5 oz of water and drink it immediately before eating a meal at breakfast and at the evening meal. Another tidbit and that is our tap water here is very basic. I've tested it with litmus paper strips and it is about a 10 on the pH scale. So, everything we cook and eat and drink that water is added to comes out pretty high on the pH scale and I can't help but wonder if that was contributing to the reflux, sort of a rebound by the body. The apple cider vinegar water may be correcting that. This is my theory. Works for me.

Oh yes I keep a bottle of tums with me which help a little I have to pair it up with Gas X and heat seems to help the stomach pains. I may try this apple cider vinegar I heard of folks trying it before but never done so myself. Not sure about the water but my reflux always seems to increase after drinking a glass. 

[cristiana]

17 hours ago, BeccaBees said:

Hello! I'm taking 20 mg of famotidine and don't eat out at all, its been about a year in a half since I ate out anywhere. I didn't mention this but I have trouble swallowing. I do live with gluten eaters and we share the same pots and pans i do try to clean and rinse them with hot water and soap but I may look into just getting my own separate utensils just to see if that helps any. My GI really wants me to be on PPIs but I just cant tolerate them unfortunately. He hasn't tested me for Pylori the last time I was tested for that was about 4 years ago by my allergist. I have an upcoming endoscopy with biopsy in a few weeks. The last endoscopy I had was around the same time I had the pylori test. They dilated me but that was about it. 

I think getting your own pans may help.  Good idea.   It is great you are having an endoscopy as you should get some answers then.  If it isn't gluten a problem like a hiatal hernia could be causing the issues, quite a common issue.    Do keep us posted.

Edited January 7, 2024 by cristiana