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

Reflux Is Killing Me!

jesimae

By jesimae
in Coping with Celiac Disease

Recommended Posts

jesimae Apprentice
jesimae
Posted

I have been gluten-free for 2 years now. I'm careful, but have glutened myself a couple of times. The last time was just before Christmas, when I had to get IV fluids from dehydration. I was vomiting and having diarrhea so much in only 4 hrs that I needed 2 bags of fluids just to get my blood pressure back up to somewhat normal.

First off, it seems that most other celiacs primarily have diarrhea. Is vomiting normal?

Second, I was told I have Baretts esophagus at the time of diagnosis because of severe gerd. Anyone else have this?

My biggest concern ( for the moment) is that no matter my diet, I have horrible reflux. I take 40 mg of prilosec every morning, and sometimes end up taking another 20 later in the day just to be able to keep food down. Lately it seems to be getting worse and worse.

Someone please tell me what else I can do to help with this. I am miserable.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

I -had- severe GERD. At its hight i had a steady raw throat. It took almost a year to heal from that. Right now, it has died down a bit.

What are you eating? I still cannot eat spicy, greasey, or rich foods without being "bit". Can't do caffine either.

I take no meds because at one point, i was on some of the higher end ones and it was just making it worse.

I sleep on an incline pillow as well. I used to wake up feeling like i couldn't breathe. Not fun at all.

When i was still on gluten, I would have both vomiting and "D" on a near daily basis (both of which stopped with the diet).

Night time was the worst by far for the GERD.

I got off the meds, watched what i ate and its pretty much died down (mind you it still gets me on occasion, but not the day to day basis).

flowerqueen Community Regular
flowerqueen
Posted

I have not heard of Prilosec presumably it's a PPI. If that is the case I'm not sure you should be taking more later in the day. Have you seen a doctor recently? There may be a more appropriate treatment for your condition. I take a PPI each morning and for a long while they worked, but I started to have more problems and took indigestion tablets later in the day until eventually I was eating them like candy. After much research I realised that I had a rebound reaction to these indigestion tablets and managed to cut them out and the problem settled down. I weaned myself off them by sipping soda water (I don't know if it's called something different in the U.S., but basically it's a mixer drink which contains bicarbonate of soda and carbonated water and I even take a little glass to bed with me to sip if I wake up. I am back to taking my PPI (Lansoprazole) and no indigestion tablets now. I was wondering if you need to redress the balance. I would definitely speak to a professional though as Barretts esophogus needs treating properly.

mommida Enthusiast
mommida
Posted

Go back to the doctor and see if there is any further treatment for the Barret's Esophagus.

My daughter also has Eosinophilic Esophagitus, (diagnosed with an endoscopy with biopsy). The symptoms were the same as gluten, "D", vomitting, "stomach" pain, some sore throat complaints, headaches, reflux, some difficulty swallowing, and food may get stuck in the throat.

Different foods "trigger" the damaging reaction (eosinophils remain active for 12 days damaging normal tissue) Keep a food journal,

the pain is much worse at night. Sleep propped up.

Slurpees, and other frozen things help. Honey helped soothe my daughter's throat. Would put it in warm water maybe a bit of lemon and call it tea.

mommida Enthusiast
mommida
Posted

She would take Previcid. Helped a little too.

flowerqueen Community Regular
flowerqueen
Posted

I forgot to say, my husband put our bed on blocks at the head of the bed, which helped. So I could rest better without having to be permanently propped up on pillows, as it's hard getting restful sleep otherwise.

shadowicewolf Proficient
shadowicewolf
Posted

Propped up pillows do not work. They support the kneck in a bad way, thus the reason i use an incline pillow. :)

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I actually did mean an incline pillow. when she was younger we did use plywood under the mattress with an incline wedge under the wood. So the whole mattress was on an angle. Simple pillows just don't really work.

mushroom Proficient
mushroom
Posted

I actually did mean an incline pillow. when she was younger we did use plywood under the mattress with an incline wedge under the wood. So the whole mattress was on an angle. Simple pillows just don't really work.

THIS!!! is what makes travelling difficult :blink: Walking around with a huge wedge tucked under your arm :lol:

shadowicewolf Proficient
shadowicewolf
Posted

THIS!!! is what makes travelling difficult :blink: Walking around with a huge wedge tucked under your arm :lol:

I'd rather carry one around then deal with reflux at night.

jesimae Apprentice
jesimae
Posted
  • Author

Went to doc today. He put me on carafate and set up a GI consult. I have not seen a specialist since we moved here 2 years ago. He fussed at me about not going to see GI doc. He said I should be having an EGD every 6 mos to a year. He said esp since I have Barrett's esophagus. Waiting on scheduling.

However, I took the carafate and was waiting an hour before eating when I became acutely ill. Severe stomach cramps, diarrhea, vomiting, fainting. That is what happens every time I'm glutened. Coincidence? If I had accidentally glutened myself before this morning, it could explain why my reflux is so bad...

Now I feel incompetent. Anybody see a nutritionist?

flowerqueen Community Regular
flowerqueen
Posted

Can I ask, is Carafate gluten free? In the UK all medicines prescribed by a doctor have a licence number. I was told by a pharmasist that medicines with a licence number (in UK) are gluten free. Is this the case in your country?

gluten-is-kryptonite Apprentice
gluten-is-kryptonite
Posted

I was having really bad acid reflux and also realized that I had an issue with salt. When I started reducing the salt in my diet I no longer get the acid reflux! I couldn't believe it!

GFinDC Veteran
GFinDC
Posted

When you get older you can fall asleep sitting in a chair. That should help.

jesimae Apprentice
jesimae
Posted
  • Author

flowerqueen I've been wondering about that. I am not sure how to find out which drugs have gluten???

flowerqueen Community Regular
flowerqueen
Posted

Could you enquire fom where you collect your medication from? If they don't know, they should be able to put you in touch with the manufacturer of the medication. I hope you get some answers soon.

flowerqueen Community Regular
flowerqueen
Posted

I was having really bad acid reflux and also realized that I had an issue with salt. When I started reducing the salt in my diet I no longer get the acid reflux! I couldn't believe it!

That's very interesting! I will have to try that!

islandmomma Newbie
islandmomma
Posted

flowerqueen I've been wondering about that. I am not sure how to find out which drugs have gluten???

Just google it. There is a website that lists almost all meds that are gluten free or not and I found it on a simple google search a couple of weeks ago but did not save it. I then dropped two pills from my daily regimen of 15 pills a day lol and already feel better with everything I am doing.... can't get a simple doctor's appointment until two weeks from now but, so far, I seem to be doing better with my own choices than he has in many many months...

Good luck!

mushroom Proficient
mushroom
Posted

And if Dr. Google can't answer your question, get the name of the manufacturer from the pharmacy and call them. The name of the site is glutenfreedrugs.com :)

Juliebove Rising Star
Juliebove
Posted

Went to doc today. He put me on carafate and set up a GI consult. I have not seen a specialist since we moved here 2 years ago. He fussed at me about not going to see GI doc. He said I should be having an EGD every 6 mos to a year. He said esp since I have Barrett's esophagus. Waiting on scheduling.

However, I took the carafate and was waiting an hour before eating when I became acutely ill. Severe stomach cramps, diarrhea, vomiting, fainting. That is what happens every time I'm glutened. Coincidence? If I had accidentally glutened myself before this morning, it could explain why my reflux is so bad...

Now I feel incompetent. Anybody see a nutritionist?

I take Carafate. Not sure if it helps because I normally have no symptoms. Just the damage. I couldn't take any other GERD meds. Not only did they actually give me symptoms but caused severe migraines and weird dreams.

I do have to watch my diet. Can eat no chocolate now, ever. It is really the only thing that ever caused symptoms.

Can't say if the Carafate is gluten-free or not because gluten isn't an issue for me. I do find that laying on my left side really helps.

lil'chefy Apprentice
lil'chefy
Posted

I have been gluten-free for 2 years now. I'm careful, but have glutened myself a couple of times. The last time was just before Christmas, when I had to get IV fluids from dehydration. I was vomiting and having diarrhea so much in only 4 hrs that I needed 2 bags of fluids just to get my blood pressure back up to somewhat normal.

First off, it seems that most other celiacs primarily have diarrhea. Is vomiting normal?

Second, I was told I have Baretts esophagus at the time of diagnosis because of severe gerd. Anyone else have this?

My biggest concern ( for the moment) is that no matter my diet, I have horrible reflux. I take 40 mg of prilosec every morning, and sometimes end up taking another 20 later in the day just to be able to keep food down. Lately it seems to be getting worse and worse.

Someone please tell me what else I can do to help with this. I am miserable.

This is so scary for me to read!!!!!! My mother had THE exact same stuff! Baretts and all. Have you had an EGD? My Mom developed malignant neuro endocrine tumors. It turns out they were treating her for severe GERD b/c of reflux symptoms, but in a last ditch effort, they found out she was making NO stomach acid, and in fact was making WAY too much gastrin, which provides a perfect environment for cancerous tumprs to grow! Ask your doctor immediately to test your gastrin levels. Run don't walk to the Dr.! People die from barrett's and it is supposed to be a drinker and a smoker's disease. If that doesn't explain you, then be very wary! Also, if the anacids aren't doing the job, then stop taking them! Get you AA checked and your gastrin levels checked! Hurry!
lil'chefy Apprentice
lil'chefy
Posted

I have been gluten-free for 2 years now. I'm careful, but have glutened myself a couple of times. The last time was just before Christmas, when I had to get IV fluids from dehydration. I was vomiting and having diarrhea so much in only 4 hrs that I needed 2 bags of fluids just to get my blood pressure back up to somewhat normal.

First off, it seems that most other celiacs primarily have diarrhea. Is vomiting normal?

Second, I was told I have Baretts esophagus at the time of diagnosis because of severe gerd. Anyone else have this?

My biggest concern ( for the moment) is that no matter my diet, I have horrible reflux. I take 40 mg of prilosec every morning, and sometimes end up taking another 20 later in the day just to be able to keep food down. Lately it seems to be getting worse and worse.

Someone please tell me what else I can do to help with this. I am miserable.

This is so scary for me to read!!!!!! My mother had THE exact same stuff! Baretts and all. Have you had an EGD? My Mom developed malignant neuro endocrine tumors. It turns out they were treating her for severe GERD b/c of reflux symptoms, but in a last ditch effort, they found out she was making NO stomach acid, and in fact was making WAY too much gastrin, which provides a perfect environment for cancerous tumprs to grow! Ask your doctor immediately to test your gastrin levels. Run don't walk to the Dr.! People die from barrett's and it is supposed to be a drinker and a smoker's disease. If that doesn't explain you, then be very wary! Also, if the anacids aren't doing the job, then stop taking them! Get you AA checked and your gastrin levels checked! Hurry!
shadowicewolf Proficient
shadowicewolf
Posted

I take Carafate. Not sure if it helps because I normally have no symptoms. Just the damage. I couldn't take any other GERD meds. Not only did they actually give me symptoms but caused severe migraines and weird dreams.

I do have to watch my diet. Can eat no chocolate now, ever. It is really the only thing that ever caused symptoms.

Can't say if the Carafate is gluten-free or not because gluten isn't an issue for me. I do find that laying on my left side really helps.

I can't take the meds either. I became "intolerent" to them. Outside of tums, there really isn't much i can take.

CommonTater Contributor
CommonTater
Posted

I have a major problem with acid reflux. I still can't eat spicy food, can't eat any tomato based food like spaghetti sauce and can't drink coffee. I also end up taking 2 prilosec a day, one morning, one evening. I hope at some point it calms down! They had me on Nexium but my insurance refused to pay it after a year.

shadowicewolf Proficient
shadowicewolf
Posted

I have a major problem with acid reflux. I still can't eat spicy food, can't eat any tomato based food like spaghetti sauce and can't drink coffee. I also end up taking 2 prilosec a day, one morning, one evening. I hope at some point it calms down! They had me on Nexium but my insurance refused to pay it after a year.

Nexium is not meant to be a long term solution. It can do more harm then good.

Doesn't surprise me that those foods would set ya off. Those are ones that are generally connected to it.

Have you tried removing all reflux meds? I ask because when i finally went "cold turky" on them (do not suggest this) that it finally started to die down for me (over a course of a few months). Now, I still on occasion get it, but its nothing that a really starchy food and a nice big glass of water can't fix. Sometimes it goes beyond that, but its rare.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.