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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Reflux Discussion
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36 posts in this topic

I think I'm finally Going to the dr for my reflux on the 14th. I tried to not take my once daily prilosec yesterday and today... HAD to take it by 1pm this afternoon. I just couldn't take the gas pains. So, I want to pick the other refluxers brains for what I should get out of this appt being as it was such a screwed up and drawn out process just to get to see the guy. I don't want to miss out on asking him something. I'm NOT a fan of taking a pill every day for the rest of my life and want to explore options other than that one. I'm interested in the stretta procedure where they use radio frequency waves to strenthen the little muscle that's not working.. the LES. Anyone do it? Any opinions? I'm not afraid of opinions and will weigh everything against what the dr says, but lets face it... the public at large is a way better medical resource than most doctors. Please let me know what you think. Also, anyone hear any thing bad about taking prilosec for the rest of your life???? That story/post on fosomax and actonel has me freaked right the heck out. Please let me know if you know of a risk taking once a day over the counter strength Prilosec. Thanks in advance.

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This is my experience so far with this thing. I have had terrible reflux/gas since December. I saw my GI in Feb. and he seemed uninterested and told me to take an over the counter gas med. This only gave limited relief--not worth taking a pill for. I also tried digestive enzymes, but they didn't do too much for it after a while. I saw a new allergist last month. Loved the guy! Not only did he understand about other food intolerances (as opposed to allergies), but he suffers from them himself. He also has a Celiac aunt, so he gets that too. Anyway, we discussed my reflux, and if it may have actually caused asthma. I had a breath test, and he put me on Prevacid and Zyrtek, and is calling what I have bronchial spasm caused by reflux--for now. He wants to see how I do on the meds, and I see him again in 6 weeks. I am feeling great as far as the reflux is concerned. I plan on continuing with this approach, and see how things go.

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I too was taking Prilosec for about a month recently, but have been off for 2 weeks now without a problem. Ihad never had heartburn really until a month ago. I think it was from getting gluten somewhere. I would try and change your diet too. No caffeine, coffee, tea, spicey foods, etc. Especially coffee and tea. I have quit drinking these things and it has helped I believe. I am not a fan of staying on a drug for life either, so I would try and get it figured out. Also make sure you aren't getting gluten somewhere. Have you been checked for H. Pylori? My doctor didn't think I had it, so I wasn't tested. He thought my heartburn would go away. I am not really sure why it went away, other then I gave up coffee. I am drinking mountain dew though, which I know isn't good for me either.

Let us know how it goes. I was wondering how you were doing since you posted awhile ago about having horrible problems. Mine was horrible at that time too, but lately, knock on wood it has been better.

Monica

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You might want to ask about calcium absorption.

A couple of years ago, I attended a South Jersey support group meeting. The speaker was a doctor who talked among others about calcium absorption. He pointed out that at least some calcium supplements are basically rocks that require acid in order to be properly dissolved. He said celiacs should be aware that medications that reduce stomach acid could possibly have the unwanted side effect of adversely affecting calcium absorption.

I take OTC Prilosec from time to time and try to be careful during those times about calcium. For instance, I might drink some orange juice when I take a calcium pill.

Your doctor can no doubt clarify whether this would be an issue for you.

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What are you saying about the calcium? THat there is a lack of it or too much. Lack of it makes sense to me. THat is the other thing I started taking. I did start taking something called Bone Up by Jarrow Formula's. It seems to have helped my C and my heartburn somewhat. I didn't relate it to the heartburn though.

I am up and down with stuff lately though, so just when I think something is under control, then bam it is back again.

Monica

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I went off of coffee for a month, couldn't eat, lost 10 pounds in a week*kept it off, too!!* so there was a plus to all this horror. But I'm having a half a cup a day of coffee again. Tomorrow, I'll quit. I am not eating badly, just probably not great choices. I will go cold turkey again tomorrow, not take a prilosec and see how it goes. I can't believe how bad it is today just a day and a half off the prilosec. I've been taking it for two months and was told to take it every day for the rest of my life!!!! But that was by the primary care dr who dxed me with asthma and had me on advair which nearly killed me and then I saw a specialist who said I DO NOT have asthma and that the advair did indeed NOT agree with me. So, no coffee tomorrow. I'm also on a mission this week to see what my limits are because my husband goes back to Bahrain for a year on saturday. He came home for two weeks. I don't like being alone with my kids when I'm so sick.

This is my experience so far with this thing. I have had terrible reflux/gas since December. I saw my GI in Feb. and he seemed uninterested and told me to take an over the counter gas med. This only gave limited relief--not worth taking a pill for. I also tried digestive enzymes, but they didn't do too much for it after a while. I saw a new allergist last month. Loved the guy! Not only did he understand about other food intolerances (as opposed to allergies), but he suffers from them himself. He also has a Celiac aunt, so he gets that too. Anyway, we discussed my reflux, and if it may have actually caused asthma. I had a breath test, and he put me on Prevacid and Zyrtek, and is calling what I have bronchial spasm caused by reflux--for now. He wants to see how I do on the meds, and I see him again in 6 weeks. I am feeling great as far as the reflux is concerned. I plan on continuing with this approach, and see how things go.

He sounds like a jerk. We should see if Rusla will put a curse on him and give him really bad heartburn for a while to see how he likes it.

Speaking of curses and such... thanks for all the prayers everyone. I was so glad when the specialist told me my lungs were looking great, no asthma and that my primary care dr was a moron for prescribing me Advair. So, please consider praying for me that the gerd just goes away as well. I'd like nothing more as I really, really wanted to have another baby but can't imagine doing that with GERD.

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i've had reflux for about 15 years. both of my twins have reflux. my baby had such severe reflux that she had a fundoplication/hiatal hernia repair at 10 months old. i think that my youngest celiac daughter is developing reflux also. she has been complaining of stuff coming up her throat---last night it was burning. i quit taking meds awhile ago because i couldn't afford it---but my reflux has gotten bad again. the doc gave me a free months worth of nexium samples. i also think i have a stricture----sometimes food gets stuck in my esophagus----that is so painful. i am working myself up to go see a GI. two of my kids had esophageal thrush, which can happen with a chronic condition such as reflux. our ped surgeon also told me that he didn't think it was good to change the normal ph of your stomach for a long time. i'd consider surgery for my daughter that has reflux the worst.

christine

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I too would like to have another child, but don't want to deal with all this gluten and problems with my digestion lately. I will be great for like two weeks and then all the sudden the big C comes back. It is more of a motility problem for me. It is strange that I can tolerate the Mt. Dew, but not coffee, tea or diet pepsi, which is what I used to eat. I wonder to if aspartame is causing people to have digestive problems such as IBS. I don't really know how I went off the Prilosec this time. It really is crazy. I guess I did give up coffee, but mt. dew has caffeine. Anyway, I also started taking the calcium and magnesium, which seems to have helped. I am so scared the heartburn will come back and it was miserable! I would consider the surgery if I was going to be on Prilosec forever. I wouldn't want to stay on it.

I have a very hard time giving up caffeine. I have been trying for years!! My brother says I shouldn't bother, because I always end up back on it again.

I get so mad when I get gluttened and I don't know where it comes from! It is very frustrating.

Monica

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Those who say they would do the surgery, which one are you interested in? Fundoplication? If so, please, don't be shy... tell me every ounce of opinion, experience you have with it. I'm scared to do it, but will if I think it's the best. Right now, I'm leaning towards the Stretta procedure. Anyone have an opinion, experience with the Stretta? I think it sounds really good. I am so fortunate to have great medical through the military. I'm so sad for the poster who said she's having trouble affording the meds. I don't know your religion, but I'm going to pray to the God I believe in for you to have a turn of fortune so that you can get the care you need and deserve.

Does anyone have experience being pregnant with reflux? Can you please describe how difficult that is? I read that I wouldn't be able to take the prilosec. I am in excruciating pain that is relentless without the prilosec, plus have horrifying gas that comes up when I'm talking, even. Just all the day long. Chokes me mid sentence sometimes... On prilosec, just about NO symptoms exist. Occasional gross taste in mouth, like an attic. But for the most part, life as usual.

i've had reflux for about 15 years. both of my twins have reflux. my baby had such severe reflux that she had a fundoplication/hiatal hernia repair at 10 months old. i think that my youngest celiac daughter is developing reflux also. she has been complaining of stuff coming up her throat---last night it was burning. i quit taking meds awhile ago because i couldn't afford it---but my reflux has gotten bad again. the doc gave me a free months worth of nexium samples. i also think i have a stricture----sometimes food gets stuck in my esophagus----that is so painful. i am working myself up to go see a GI. two of my kids had esophageal thrush, which can happen with a chronic condition such as reflux. our ped surgeon also told me that he didn't think it was good to change the normal ph of your stomach for a long time. i'd consider surgery for my daughter that has reflux the worst.

christine

Please tell me about preganancy with GERD. How were you treated? Are you a fan of fundos?

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Those who say they would do the surgery, which one are you interested in? Fundoplication? If so, please, don't be shy... tell me every ounce of opinion, experience you have with it. I'm scared to do it, but will if I think it's the best. Right now, I'm leaning towards the Stretta procedure. Anyone have an opinion, experience with the Stretta? I think it sounds really good. I am so fortunate to have great medical through the military. I'm so sad for the poster who said she's having trouble affording the meds. I don't know your religion, but I'm going to pray to the God I believe in for you to have a turn of fortune so that you can get the care you need and deserve.

Does anyone have experience being pregnant with reflux? Can you please describe how difficult that is? I read that I wouldn't be able to take the prilosec. I am in excruciating pain that is relentless without the prilosec, plus have horrifying gas that comes up when I'm talking, even. Just all the day long. Chokes me mid sentence sometimes... On prilosec, just about NO symptoms exist. Occasional gross taste in mouth, like an attic. But for the most part, life as usual.

Please tell me about preganancy with GERD. How were you treated? Are you a fan of fundos?

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Sorry, I've never been pregnant so can't help you there, but I think I'm just about to find out some of the ramifications of not taking care of my GERD. My allergist diagnosed me with GERD about 4 years ago...he had me take Prevacid before going to bed to control the acid. I also raised the head of my bed at that time. I ended up not taking the Prevacid for long...I really never suffered from heartburn, just a raw feeling in my throat...not really sore, just raw, and I was never sure the meds were actually helping.

I had an endoscopy and a colonoscopy on Monday of this week....apparently the doctor saw something in the esophagus that he biopsied--I should find out next week what that's all about, but the raw feeling in my throat is almost constant now, so I'm thinking I need to do something.

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I have had GERD all my life. I had surgery 18 years ago, which recently came undone, so I'm dealing with it again.

It is 75% better since going gluten-free, but I'm still suffering. I have done a lot of research recently and have been very surprised. I would encourage people to check out www.atdonline.org. You will see two drop down boxes and if you select digestion, you will get a lot of great articles. There is one on heartburn and orange peel extract. Basically, I've read that most heartburn is caused by too little acid. If you have heartburn and take a spoonful of vinegar and it goes away, then you can be pretty sure your heartburn is from having too little acid. I was shocked when I tried this and it worked.

Hopefully, this will work for others. I can't believe how traditional doctors have this all wrong.

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I have been dealing with reflux for years too. The meds are out of the question for me because I react to all of them. Nexium completely constipates me. Protonix makes me jittery and gives me the runs. Etc. My doctor said that all of the drugs used to control acid can constipate.

So, I figured out which foods were causing it and avoid them. Or just have them less frequently. I can have tea, coffee, gatorade, etc. if I dilute them heavily with water. Onions, garlic, eggs, chocolate are others that I can tolerate once in a while in small quatities. Anything acidic like tomatoes, lemons, oranges are too hard on me right now.

I am just trying to give you ideas of what to look for. I figured this all out the hard way. Hopefully, you will only find one or two that are actually causing the problem and will only need to eliminate those.

Most of these foods have given me problems for years, but I just ignored it until my stomach started hurting 24/7 and I couldn't ignore it anymore.

I'm hoping someday my stomach won't be as sensitive, but meanwhile, I have learned to control my reflux this way.

Good luck ...

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I was prescribed Prevacid by my doctor, and also to take it forevermore. My doctors have told me that it is important to take it daily because all of that acid backwashing up the esophagus has been proven to cause some really nasty cancers.

Then I saw a holistic MD, who did not like the idea of taking Prevacid daily. I'm sorry, but for the life of me now I cannot remember why or what her alternative solution was. Bottom line is, that I have noticed that for a while now, the reflux is gone and I no longer have a problem with it.

However, I am having what feels like a similar problem, but seems to be a little lower down in the digestive tract. I get pain and burning right at the xyphoid (where the breastbones meet). I thought it was only happening when I got glutened, but it might possibly also be happening when I eat spicy foods or eat just prior to lying down. I'll have to notice if there are causes other than gultening. It is different from the heartburn and reflux that I had earlier. It does not come up into the esophagus, but rather stays right there.

It's so confusing. You want to do what is best for your health, but the problem is discovering what is best because of the varying opinions.

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I had GERD from the age of 15 on. Before my first pregnancy, I went off meds, and did just fine heartburn-wise, but had such severe nausea and vomiting, it caused all sorts of serios problems. I did NOT want to take medication, but not taking it, I think, m ade more problems.

My second and third pregnancies were also nausea and vomiting-filled from beginning to end--but I took Zantac and miniscule amounts of Phenergan (an anti-nausea medication). The babies and I both did much, much better.

Interestingly, although I knew nothing abuot celiac or gluten at the time, I did NOT want crackers unless they were rice crackers or corn chex. I ate a lot of fruit, tofu, and rice and vegies--anything else didn't stay down. At one point, though, I was craving hot dogs and bacon. Never did figure that one out. :blink:

The nausea always went away the minute the baby was born (with #3, it went away 1 week before the baby was born, but she was 2 weeks late.) Themost I ever gained was 12 pounds--but I was about 20 pounds overweight to begin with, so that wasn't bad.

I've been on Nexium sinice last summer, with very good results. I just hate taking a pill every day, especially considering how I feel about the pharmaceutical industry!

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Thank you all so much for sharing these experiences. I guess there is HOPE that if I stop eating an offending food, I can go off the meds? Is that what you think?

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have you tried DGL?

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Had a great GI appt today. Will try to go off of the Prilosec beginning tomorrow. The Dr said to be prepared for rebound effect! :( Have two bottles of Mylanta on hand, he said to use it as often as necessary and to give it a week to see if I improve. He also has at his disposal the new pill/camera technology in place of an endoscope as well as the nonsedative endoscope which is new. Which is great since I can't take sedation due to the benzodiazapines! So, I feel some hope here. My doc was really hopeful and seemed very up to date on all the new procedures. Keeping my fingers crossed and my prayers constant!

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JnkMnky (or anyone else),

Can you explain to me what reflux is? Is it when your food comes back up after you eat? This happens to me sometimes. I get a really full feeling in my throat and it feels like if I burp food will come up. It doesnt hurt though. I notice it happens if I eat too much at once or if I eat a meal high in carbs. Is this GERD? Its just an annoying feeling and it never happened to me before I got sick and I could eat tons more than what I'm eating now and not get that backed-up feeling in my throat. What is that? What causes it? Should I just eat less? :unsure:

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Yes, I believe food can come back up. That's not what's happening to me so much, though. You may want to talk to a dr about your experience. It could be the beginning of a weakening of your LES *lower esophogial Sphincter* (spelling questionable there)... I'm just thinking that if this is the beginning for you of developing GERD, you may want to take precautions such as smaller meals, chewing more, not laying down after a meal, eating at least three hours before bed... Cause, you don't want what it morphs in to! :o Hurts like nothing I can describe when it gets ugly. :(

For me it's more acid reflux with the acid coming back up and it also seems like my LES is permanently open with the gas and acid washing back into my mouth. It burns like nobody's business and makes me feel like death, frankly. And the pain in my chest and stomach makes me writhe around. I can't do anything normal like be a human being. It's impossible because the pain is all consuming.

Edited by Jnkmnky
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when I'm having a flare up, my tongue and lips burn, its awful!

the DGL came, thank goodness..feeling better already!

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Thanks for the info JnkMnky,

Sorry you have to go through that. :(

Whatever I have its nothing like that...I havent experienced any pain from it. I think maybe its from the bloating...I get bloated all the way up to my chest sometimes. I'll talk to the GI about it....he said my digestive system is really slow so I need to eat slowly, small portions and chew my food really good. Thats pretty much the opposite of how I normally eat so maybe thats my problem. I hope this stuff can work itself out with healing.

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my reflux is getting so bad---i am having trouble swallowing my food down. i'm going to have to go see a gi---i've just put it off for so long. sometimes when i burp, my food comes upt to the back of my throat.

christine

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