Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Reflux Is Killing Me!
0

28 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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).

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

She would take Previcid. Helped a little too.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!
0

Share this post


Link to post
Share on other sites

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!
0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,569
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
    • SIBO, microscopic colitis, probably celiac here (celiac's a self diagnosis, was gluten-free before getting tested). Now my doctor is suspecting hashimoto's due to low heart rate, so getting tested for that probably tomorrow. Anyway, I feel your pain... Low FODMAPs on top of gluten-free is tough. One thing that has helped me a lot is betaine HCl with meals. I can actually eat some onions, garlic, and fruit again with much less trouble. Make sure you get a safely gluten-free brand. Country Life is certified gfco, so is tested to less than 5ppm and is what I take. Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined