Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Acid Reflux


KMMO320

Recommended Posts

KMMO320 Contributor

I had my Endoscopy Friday, you all were right it was nothing!

But when I came to afterwards, the nurse gave me my discharge papers and a prescription for Prilosec. I was like..ok..whats this for? She said oh, the Dr. said you have severe acid reflux..take this.

ok..

I filled it and started taking it..I did notice some heartburn but I think I just tolerate pain well and sort of brushed it off. I dont see the dr for my follow up until the 19th.

is Heart burn/Acid reflux related to Celiac or could this just be some other random problem?

I am just so frustrated, I feel like my body is falling apart on me.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

It is a major symptom of celiac and gluten intolerance diseases.

IrishHeart Veteran

It was one of my horrible celiac symptoms for 12 years and now, it is gone.

KMMO320 Contributor

Oh wow. I really had no idea. I am so new to everything, and apparently have so much to learn. I have a habit of just dealing with aches, pains and ailments without telling anyone, so eventually I just get used to feeling awful. I had no idea what I was essentially doing to myself...with food. It makes me so upset!

IrishHeart Veteran

I had no idea either. I was told it could not be celiac. It was "just GERD" and "IBS" they said. <_<

I was given tons of meds to try. No help at all. My entire GI tract was in flames. My tongue, mouth, throat, chest, stomach, right down to my rectum --just BURNED. I lived in agony.

They were wrong, as it turned out. It was celiac.

I have not had one episode of GERD or IBS since I healed my GI tract after taking out gluten. It took me many months, probiotics, digestive enzymes and patience, but it happened.

If I had not figured this out, I still would be in hell.

I am guessing from your post here that you do not have celiac? Did he biopsy you? was it NEG?

(This does not necessarily mean you do not have a gluten issue, of course).

KMMO320 Contributor

I had no idea either. I was told it could not be celiac. It was "just GERD" and "IBS" they said. <_<

I was given tons of meds to try. No help at all. My entire GI tract was in flames. My tongue, mouth, throat, chest, stomach, right down to my rectum --just BURNED. I lived in agony.

They were wrong, as it turned out. It was celiac.

I have not had one episode of GERD or IBS since I healed my GI tract after taking out gluten. It took me many months, probiotics, digestive enzymes and patience, but it happened.

If I had not figured this out, I still would be in hell.

I am guessing from your post here that you do not have celiac? Did he biopsy you? was it NEG?

(This does not necessarily mean you do not have a gluten issue, of course).

I have not been diagnosed officially yet, no. I had blood drawn (14 vials for 2 different Celiac tests) and my Endoscopy on Friday. My dr. strongly thinks it is Celiac and told me to go Gluten Free as of yesterday, which I did.

I noticed some heartburn before and actually some "burning" feeling down my chest, like down my throat and to my stomach after I ate and for a few hours after, but I sort of just said oh well, one more thing wrong with me, and dealt with it. Some days the heartburn was worse and I told my husband that it almost felt like cramps, and some days it was just a mild annoyance. I feel so stupid that I just never put things together. Just like my migraines, sinus issues, runny nose when I eat, foggy brain, balance issues and what I used to think was IBS.

The "IBS" I got used to and stopped thinking about, I just dealt with it.

I come from a family that never complains when they are sick and its just what I do. But its actually very dangerous because things get let go until its too late, know what I mean? I hate going to the dr, and I hate for them to think I am a hypochondriac, so I dont go until I feel like I REALLY HAVE TO.

I had gone originially just to get my routine bloodwork for my thyroid and while I was there started telling her how I have been feeling for several years, she quickly got me into see a GI specialist and very soon after that, the GI got me set up with all the testing. I guess I am fortunate, both drs believe it is celiac disease, without a doubt. The GI said to have these tests done but to go gluten-free anyway and if I feel better...then there is my answer.

The Acid Reflux..just threw me. I didnt know it was a symptom and she must have seen something scary when she was doing the Endo to see that...the thought that something could be wrong with me is amazing too..I have the tendancy to think I am invincible and health issues happen to "other" people, not me. Its just a real wake up call to me..that I cant eat what I want..that FOOD can kill you or make you not as functional as you can. I am just in shock that this is something we do to ourselves with food...and we can stop it by eating the right foods...after my whole life of eating junk, fast food, and whatever I wanted..this is so new. Some days I know I can do this, other days I sit and cry because it seems impossible.

Sorry for the rant..but to answer the question if I have celiac disease..I go for my follow up on the 19th, I guess I will officially know then.

Cara in Boston Enthusiast

I was on acid blockers for about two years (was told I would take them for life) for GERD and they never really helped 100%. Turns out it was celiac all along and simply eliminating gluten from my diet solved the problem. Within days I was able to stop taking the meds and haven't had any problems since. Why do doctors treat the symptoms rather than find the problem? Seems crazy and dangerous (it is not healthy to take PPI meds for long term, yet they are prescribed for years and years.)

So, if you start taking the meds AND start eating gluten free, you should see a change fast. Trouble is, most doctors will say it is due to the medication and not the diet change. We know better.

Cara


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



KMMO320 Contributor

Thank you Cara, I see you are in Boston. I am a MA girl too :)

I am so frustrated, and I guess I will make repeated mistakes for a while...but I was sitting here eating a yogurt all happy because I read the ingredients and it looked safe and 10 mins later I feel that familliar light headed feeling, sort of a dizzying WHOOSH, its what I feel when I eat, which I didnt feel at all yesterday...so I look down and sure enough..not with the ingredients..but on the SIDE of the cup it says "Manufactured in a Plant that processes WHEAT"

WHAT THE HECK! now I have to look all over the package and not the ingredients. oh man! I stopped eating it but its too late. :(

IrishHeart Veteran

Its just a real wake up call to me..that I cant eat what I want..that FOOD can kill you or make you not as functional as you can. I am just in shock that this is something we do to ourselves with food...and we can stop it by eating the right foods.

Sorry for the rant..

Don't be sorry! This is the place to rant, cry, or complain. :)

Let me just say this to you.

Celiac disease is not something YOU caused by "eating the wrong foods". How could any of us have known?

It is a hereditary autoimmune disease. You did not CAUSE it and you did nothing wrong.

If you have it, it is not the end of the world. :)

When you go gluten free, you stop the autoimmune attack on your body and your villi grow back and you stop having all those awful symptoms. You are not complaining when you talk about symptoms and you are not perceived as a hypochondriac--not by any of us!

I "lived with" debilitating symptoms for 25 years. I WISH I had been DXed early and properly. I almost died from this thing. You are fortunate that your doctor is getting to the root of your problem so you can get well and get on with your life. You will have some sadness and anger over it, but when you realize it is a manageable disease, you will get past the shock and move forward.

The gluten-free life is not that difficult. We can help you. :)

Here is a thread for you to read through. But you should read about celiac disease so you understand what it is. It did not happen because you were not careful about the foods you ate, okay? But gluten is one thing you are most definitely going to have to give up.

KEEP US POSTED. We care!

IH

IrishHeart Veteran

so I look down and sure enough..not with the ingredients..but on the SIDE of the cup it says "Manufactured in a Plant that processes WHEAT"

WHAT THE HECK! now I have to look all over the package and not the ingredients. oh man! I stopped eating it but its too late. :(

What kind was it?

Some people have problems with products manufactured on shared equipment or in a shared facility (I am one of those) but MANY

have no issues with this whatsoever.

Chobani is certified G F

FAGE is safe and (I believe) Yoplait is safe.

Store brands may be a problem.

OR you could also be lactose intolerant, which can be secondary in celiac. It may be temporary.

Try a Chobani yogurt and see how you feel. :)

Don't get too frustrated, hon. It's a learning curve and we all make mistakes. I made a doozy last week :blink: and I'm a veteran at this. Soon, you will be a pro at reading labels. My husband, the grocery shopper, is a champ at reading labels (after he made many blunders)

My 85- year- old gluten-free Mom learned how to do it. You're going to be okay, I promise!

and P.S. I grew up in the Boston, Mass.area too!

KMMO320 Contributor

It was Activia light Vanilla. :(

IrishHeart Veteran

Yeah, sorry honey, they do not guarantee those products.

Shake it off. We all make mistakes. :)

Chobani tastes better anyway !

birdie22 Enthusiast

I am blood test neg. Heartburn was one of my first symptoms that lead me to the doc. I was given prilosec. When it didn't resolve and then bloating became an issue the doc just suggested I needed to be on prilosec longer. I ignored the advice because I didn't want to be on prilosec long term. Now that I've been gluten-free for 6 mos the heartburn is now only a once and a while thing and getting better all the time.

IrishHeart Veteran

and speaking of my gluten-free Mom.......

She told me yesterday, she has not used Nexium or Tums or Maalox since last year. She said after about 5 months of being gluten-free ---and then giving up her huge glass of milk everyday--(I got her to try So Delicious Coconut Milk) all that pain vanished. She felt like she was having a heart attack and wanted to vomit almost every night.

:(

KMMO320 Contributor

and speaking of my gluten-free Mom.......

She told me yesterday, she has not used Nexium or Tums or Maalox since last year. She said after about 5 months of being gluten-free ---and then giving up her huge glass of milk everyday--(I got her to try So Delicious Coconut Milk) all that pain vanished. She felt like she was having a heart attack and wanted to vomit almost every night.

:(

Thats how I felt every night for the last year, but I really just ignored it. Some nights were bad and I would just lay down and tell my husband that I was just so sick. There was some nights I would catch him staring at me, worried because I was just ALWAYS sick. He said my breathing was off too.

It's day 3 of being gluten-free and no, I don't expect results after only a few days, I know it will take a while. My heartburn is a little better but my bloating feels WAY WORSE. I was thinking of buying some GasX or something because I feel like I have this big ball of gas sitting in my stomach. So uncomfortable.

IrishHeart Veteran

I know, hon. :( I was there myself. Horrible way to live.

This is going to change!!

Lay off dairy for a bit, maybe?

Drink water, take probiotics and digestive enzymes before meals.

birdie22 Enthusiast

Thats how I felt every night for the last year, but I really just ignored it. Some nights were bad and I would just lay down and tell my husband that I was just so sick. There was some nights I would catch him staring at me, worried because I was just ALWAYS sick. He said my breathing was off too.

It's day 3 of being gluten-free and no, I don't expect results after only a few days, I know it will take a while. My heartburn is a little better but my bloating feels WAY WORSE. I was thinking of buying some GasX or something because I feel like I have this big ball of gas sitting in my stomach. So uncomfortable.

I have luck with gasx or phazyme when I get bloated. The liquid gel versions are gluten free at last check. Always good to check first because formulations can change.

Roda Rising Star

Acid reflux was my main GI symptom. My PCP doc wanted to put me on protonix right away and I REFUSED! I told him that I didn't belive it was a good idea to be on PPIs long term. He scoffed and told me that I would do irreversable damage to my esophagus if I didn't take them. I still refused. My reflux was new, never had it before, so I wanted to know WHY I had reflux. It was so bad that even drinking water would set me off. I burned so bad all the way to the back of my throat. I did manage to convince him to do an upper GI(barium) series on me which showed prominant gastric folds. Report said that it may or may not be significant. My doctor went with insignificant. I went 2 more years (it had been 6 months already) with the reflux and anemia before I was diagnosed. I mananged the reflux the best I could without taking PPIs. I did use tums a lot though. The good news is it was my first symptom to resolve gluten free.

A year after I was gluten free the reflux came back along with a host of new symptoms. We chased down every possibility and ruled out other things before settling on that I was getting gluten in my diet somewhere(even though I was very strict). I had a repeat scope that showed inflammation and a gastric ulcer. I didn't have an ulcer before. My GI wanted to put me on a PPI and I refused again, but I did agree to take an H2 blocker(zantac) to heal the ulcer. I was supposed to take it 4 months but quit after 2. I had discovered I wasn't getting gluten into my diet, but I was reacting to gluten free oat cross contamination in gluten free products. So as long as I stick to products with no gluten free oats or cross contamination from them I'm fine. That's not to say other things not gluten related don't cause me occasional reflux, but it is not very often and a simple tum or occasional zantac does the trick.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.