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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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jesimae

Reflux Is Killing Me!

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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.

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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).

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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.

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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.

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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.

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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.

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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:

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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.

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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?

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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?

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

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

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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.

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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!

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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!

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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 :)

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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.

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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!

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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!

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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.

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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.

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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.

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