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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.

Celiac And Reflux (Gerd)
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Hello All -- So, I was diagnosed 5-months ago with Celiac disease. I immediately began a gluten free diet, with some unknowing hiccups, I'm sure. Anyhow, I was and am actually progressively getting worse in many ways on this diet: my stomach has become much more sensitive, peripheral neuropathy and greatly increased GERD...just to name a few symptoms; wondering if folks have any suggestions.

Some addt'l details that may help. Within the past few months I started to take Adderall for clear ADD symptoms. Although, interestingly, I have read that Celiac, because of the blood-brain barrier issue, can mimic AD(H)D in many ways. I discontinued the Adderall for 10-days, in the hope that the Reflux would abate, but to no avail. I then began taking Prevacid, increased the dosage and none of this has made a difference. The great changes of late have been dietary (including a food allergy panel that has indicated that I have a number of food sensitivities "1s", in addition to gluten), as well as the addition of supplements, all of which claim to be allergy free.

I've read that many have had the exact opposite response, with their reflux improving on a gluten free diet. I want to be one of those people.

Thoughts?

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I've read that many have had the exact opposite response, with their reflux improving on a gluten free diet. I want to be one of those people.

Thoughts?

Hi. I had really bad reflux for years. Cutting back on spicy,fatty, or fried foods did not help at all. When I went completely grain free with no fried foods for a while it completely cleared up. No problems even with spicy food or meat as long as there are not grains. Just being gluten free for me does significantly help but not eliminate the problem. I think all grains can be a problem so you may want to undertake an elimination diet and see if your symptoms clear and then start adding grains back in. Start w/ rice since that's least likely to cause problems. The other factor I think helps is eliminating vegetable oils like corn oil, soybean, etc. Just stick with olive oil and butter for cooking if you can. Hope this helps! Oh, and I can eat rice and sometimes corn now without problems as long as I keep them limited in my diet. I think my body just needed a break from these inflammatory, acidic foods :)

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My main symptoms were reflux and diarrhea. Both improved once I cut gluten and casein (dairy). I'm still working on healing the gastritis so I can hopefully get off my omeprazole for good.

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my reflux is still with me- but nothing like when i was on gluten- gluten was the WORST culprit in that- that acid would immediately start sizzling up after eating wheat & gluten....

past few days, ive noticed chocolate doing it a little, and this makes me incredibly sad :(

also- i would like to stress to you- that taking strong stuff like Prevacid, Prilosic, Aciphex, etc, etc... will in the long run CAUSE reflux because when you greatly reduce the amount of stomach acid in your stomach, and when you shut down those acid making mechanisms... your esophageal flap will probably weaken... plus you could become prone to H.Pylori and other stomach bugs that thrive in Low stomach acid conditions. unless you're in the middle of an ulcer, i would stress to never taking those drugs- because your stomach NEEDS all that stomach acid.

the trick is to changing the diet so that that esophageal flap will stay shut. if you're under a lot of distress- try to stick with just antacid tablets (gluten-free of course), pepto... and sleeping propped up. or google natural mixtures that maybe involve baking soda to counter the acid.

also, recently i read that melatonin (sleep aid) can help to strengthen that flap.

good luck with all the other stuff

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my reflux is still with me- but nothing like when i was on gluten- gluten was the WORST culprit in that- that acid would immediately start sizzling up after eating wheat & gluten....

past few days, ive noticed chocolate doing it a little, and this makes me incredibly sad :(

also- i would like to stress to you- that taking strong stuff like Prevacid, Prilosic, Aciphex, etc, etc... will in the long run CAUSE reflux because when you greatly reduce the amount of stomach acid in your stomach, and when you shut down those acid making mechanisms... your esophageal flap will probably weaken... plus you could become prone to H.Pylori and other stomach bugs that thrive in Low stomach acid conditions. unless you're in the middle of an ulcer, i would stress to never taking those drugs- because your stomach NEEDS all that stomach acid.

the trick is to changing the diet so that that esophageal flap will stay shut. if you're under a lot of distress- try to stick with just antacid tablets (gluten-free of course), pepto... and sleeping propped up. or google natural mixtures that maybe involve baking soda to counter the acid.

also, recently i read that melatonin (sleep aid) can help to strengthen that flap.

good luck with all the other stuff

Be aware that all of these possible problems depend on the source of the reflux. There actually is no flap at the top of the stomach. There's a sphincter - a muscular ring - that can relax and allow acid to splash up from the stomach to the esophagus. Depending on the reason why there is irritation (gastritis? Celiac irritation of the sphincter? Eating late at night? etc) there are various pros and cons to taking those anti-acid meds.

The antacid tablets should not be popped like candy, either. It's really a balance between needing to cut down on the acid to protect the stomach lining and needing to allow the stomach to have enough acid in it to act properly as a bacteria-killer and food-digester. H pylori are hardened criminals and produce their own acid neutralizing agents, so while reducing the acid in your stomach can help invite them in, they're perfectly good at getting there on their own. It doesn't make THAT much difference.

Propping yourself up in bed is useful, but you can't just prop your head. You need to prop up your entire torso and shoot for something like a 20-degree or even 45-degree angle. This is why sometimes people will resort to sleeping in recliners - your whole upper body is angled that way. Pillows alone tend to be insufficient support (and you can push them away once you're asleep).

It's best to use any drugs as a transition to allow your body to heal and not rely on them for the long term, but they are very helpful for protecting the stomach and allowing it to heal fully. Please don't underestimate their utility. For some of us, me included, the one thing that allows my stomach to not burn (despite being on a great diet) is the med. And I don't have an ulcer (scope was 08/30). I just have some major Celiac-induced gastritis and reflux for now.

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Be aware that all of these possible problems depend on the source of the reflux. There actually is no flap at the top of the stomach. There's a sphincter - a muscular ring - that can relax and allow acid to splash up from the stomach to the esophagus. Depending on the reason why there is irritation (gastritis? Celiac irritation of the sphincter? Eating late at night? etc) there are various pros and cons to taking those anti-acid meds.

The antacid tablets should not be popped like candy, either. It's really a balance between needing to cut down on the acid to protect the stomach lining and needing to allow the stomach to have enough acid in it to act properly as a bacteria-killer and food-digester. H pylori are hardened criminals and produce their own acid neutralizing agents, so while reducing the acid in your stomach can help invite them in, they're perfectly good at getting there on their own. It doesn't make THAT much difference.

Propping yourself up in bed is useful, but you can't just prop your head. You need to prop up your entire torso and shoot for something like a 20-degree or even 45-degree angle. This is why sometimes people will resort to sleeping in recliners - your whole upper body is angled that way. Pillows alone tend to be insufficient support (and you can push them away once you're asleep).

It's best to use any drugs as a transition to allow your body to heal and not rely on them for the long term, but they are very helpful for protecting the stomach and allowing it to heal fully. Please don't underestimate their utility. For some of us, me included, the one thing that allows my stomach to not burn (despite being on a great diet) is the med. And I don't have an ulcer (scope was 08/30). I just have some major Celiac-induced gastritis and reflux for now.

i took zantac every day for 4 years... ended up with Hypoclorhydia (shown in the Heidelberg capsule test).. AND H.Pylori AND digestion problems AND reflux AND Hiatal Hernia

i had to take Betaine HCI & Digestive Enzymes for ages... and much better now

i had an H.Pylori ulcer 6 months ago.. and cured it with GSE for 3 weeks. for the burning i relied on Pepto & antacid tablets... and only took the Zantac for a week at night. i will never take anything stronger than Zantac, nor for longer than a week or two again.

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i took zantac every day for 4 years... ended up with Hypoclorhydia (shown in the Heidelberg capsule test).. AND H.Pylori AND digestion problems AND reflux AND Hiatal Hernia

i had to take Betaine HCI & Digestive Enzymes for ages... and much better now

i had an H.Pylori ulcer 6 months ago.. and cured it with GSE for 3 weeks. for the burning i relied on Pepto & antacid tablets... and only took the Zantac for a week at night. i will never take anything stronger than Zantac, nor for longer than a week or two again.

Yeah ... Zantac every day for 4 years is not a good thing at all, although I hesitate to blame your hiatal hernia on the Zantac. But you're right - that's way too long. Zantac and other acid reducers are good for targeted healing help. They're not supposed to be taken for years and years. That sounds miserable.

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Yeah ... Zantac every day for 4 years is not a good thing at all, although I hesitate to blame your hiatal hernia on the Zantac. But you're right - that's way too long. Zantac and other acid reducers are good for targeted healing help. They're not supposed to be taken for years and years. That sounds miserable.

All good things to consider. Well, I'm off to a new GI Dr. in approximately 3-weeks, so hopefully he'll have some useful suggestions...in addition to educating myself on this forum.

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Hello All -- So, I was diagnosed 5-months ago with Celiac disease. I immediately began a gluten free diet, with some unknowing hiccups, I'm sure. Anyhow, I was and am actually progressively getting worse in many ways on this diet: my stomach has become much more sensitive, peripheral neuropathy and greatly increased GERD...just to name a few symptoms; wondering if folks have any suggestions.

Some addt'l details that may help. Within the past few months I started to take Adderall for clear ADD symptoms. Although, interestingly, I have read that Celiac, because of the blood-brain barrier issue, can mimic AD(H)D in many ways. I discontinued the Adderall for 10-days, in the hope that the Reflux would abate, but to no avail. I then began taking Prevacid, increased the dosage and none of this has made a difference. The great changes of late have been dietary (including a food allergy panel that has indicated that I have a number of food sensitivities "1s", in addition to gluten), as well as the addition of supplements, all of which claim to be allergy free.

I've read that many have had the exact opposite response, with their reflux improving on a gluten free diet. I want to be one of those people.

Thoughts?

reflux is what drove me to the doctor in the first place along with the burning sensation that never went away. turns out I had gerd, hiatal hernia, and gastritis, duodenitis and voila, Celiac. After being on omeprazole (prilosec) for several years, I am no longer taking anything for acid reflux except an occasional tums. Seems like the gluten containing foods were causing havoc with my whole digestive tract.

so yes, it is possible to be antacid reflux free after only 5 months! it will take some time though. if you have been on an antacid for a long time you have to slowly ween yourself off by slowly lowering the amount or dosage you take over time. you will get the whiplash effect if you stop suddenly, meaning your stomach will produce more acid if you go cold turkey...

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reflux is what drove me to the doctor in the first place along with the burning sensation that never went away. turns out I had gerd, hiatal hernia, and gastritis, duodenitis and voila, Celiac. After being on omeprazole (prilosec) for several years, I am no longer taking anything for acid reflux except an occasional tums. Seems like the gluten containing foods were causing havoc with my whole digestive tract.

so yes, it is possible to be antacid reflux free after only 5 months! it will take some time though. if you have been on an antacid for a long time you have to slowly ween yourself off by slowly lowering the amount or dosage you take over time. you will get the whiplash effect if you stop suddenly, meaning your stomach will produce more acid if you go cold turkey...

Adding a little footnote here: All Tums are gluten free EXCEPT Tums Smoothies. B)

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All good things to consider. Well, I'm off to a new GI Dr. in approximately 3-weeks, so hopefully he'll have some useful suggestions...in addition to educating myself on this forum.

Good luck! Keep reading up on things and figuring out what works and doesn't work for you - this is a process. I hope your process is reasonably smooth ...

reflux is what drove me to the doctor in the first place along with the burning sensation that never went away. turns out I had gerd, hiatal hernia, and gastritis, duodenitis and voila, Celiac. After being on omeprazole (prilosec) for several years, I am no longer taking anything for acid reflux except an occasional tums. Seems like the gluten containing foods were causing havoc with my whole digestive tract.

so yes, it is possible to be antacid reflux free after only 5 months! it will take some time though. if you have been on an antacid for a long time you have to slowly ween yourself off by slowly lowering the amount or dosage you take over time. you will get the whiplash effect if you stop suddenly, meaning your stomach will produce more acid if you go cold turkey...

The cold turkey thing is a great point. Also, my GERD and gastritis are very much Celiac-related. I kept having breakthrough symptoms despite meds and more meds and Tums. Now, with the gluten- and casein-free diet, I have no reflux to speak of. I'm still on my omeprazole (looking to start weaning myself off that once I've settled into the diet because I want my stomach to heal) but I totally hear you. I will wean. Thanks for the reminder!

Adding a little footnote here: All Tums are gluten free EXCEPT Tums Smoothies. B)

AND THANK GOODNESS FOR THAT.

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I am in the exact same boat as you. I am newly gluten free and about 3 months in I started to get very painful GERD (more indigestion than anything). Saw my Dr and it turns out I was having issues with CC! I thought for sure i was being careful, but I was new to it all. My culprit was gluten free items made on shared equipment.

I just did not think I was THAT sensitive, but I am. I am on of these people. haha. Live and learn.

She also told me it takes months to heal overall.

But some other tips to help with the reflux are no caffeine, spicy or fried foods and eating slowly. That will help a bit too. Esp if you issue is not CC.

Good luck!

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There are a number of foods and supplements that can contribute to reflux. What does your diet look like?

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Forgive me for not reading the responses, I'm working in the background. I may well be repeating what somebody has already said.

Celiacs often accompanies other intolerance's. Lets say for example you're lactose intolerant but don't realise it. You suddenly went gluten free, but as a result drank much more milk to substitute other drinks that you now can't drink. This in turn creates symptoms of it's own and you're left feeling worse. Obviously this is only an example but hopefully you'll see what I'm getting at.

It might be worth going on an elimination diet at this point. Figure out what you can and cannot tolerate.

Many people automatically assume they're accidentally getting small amounts of gluten but in fact it's another intolerance causing the ongoing issues.

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I am in the exact same boat as you. I am newly gluten free and about 3 months in I started to get very painful GERD (more indigestion than anything). Saw my Dr and it turns out I was having issues with CC! I thought for sure i was being careful, but I was new to it all. My culprit was gluten free items made on shared equipment.

I just did not think I was THAT sensitive, but I am. I am on of these people. haha. Live and learn.

She also told me it takes months to heal overall.

But some other tips to help with the reflux are no caffeine, spicy or fried foods and eating slowly. That will help a bit too. Esp if you issue is not CC.

Good luck!

Hi -- my diet is reasonably simple at the moment. I mostly eat fruits, vegetables, nuts and poultry/meat. I do take supplements and one medication, all of which claim to be allergen-free. As for the secondary sensitivities, I've gotten mixed feedback on when and if those foods can (re) introduced into my diet.

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For me? In order to go completely gluten free, I had to drop my nuts - they are very hard to find without at least some level of CC.

If you are buying your meat and it's cut at the deli or at the meat counter at the grocery store - good chance of CC there, too.

supplements and medication - sadly, allergen free and gluten free, because they are legal terms, almost never mean 'zero allergens and zero gluten.' So if you are very, very sensitive (which can happen) they might be enough to make you sick.

Fruits and veggies - do you eat organic? some pesticides, I understand, can have gluten as binders. Mulch can involve straw from gluten containing grains for low growing veggies. Fruits can have sprays on them with gluten. If you peel all your fruits and veggies, that may help you ensure you're getting them gluten free as possible.

you also might want to take a look at fructose malabsorption - that can often result in intestinal distress and they think it can develop in people who already have gut issues.

Also, have they tested you for H. pylori? That's pretty common in celiacs and folks with gut problems, too. And I know it can cause a lot of acid reflux.

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My son had bad GERD before diagnosis. Several GERD medications didn't touch it. He found that best thing was the gluten free diet without meds. Is is possible that the meds might have trace cc? GERD is one my my biggest gluten contamination indicators. Do you use spices? Some react to those, maybe try fresh only. I only eat nuts in shell which I shell myself. Otherwise, I react, but, I am very sensitive. Hopefully you aren't.

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No offense meant, but are you overweight? The reason I'm asking is that I had such bad heartburn/GERD that I was on my way to the doc's to ask for Nexium or anything higher powered that the OTC stuff cause I was in such pain every night... if I didn't know it was heartburn/GERD, I'd have sworn I was having a heart attack.

The diet that you listed is pretty much exactly what I went on. I cut out almost ALL carbs and only rarely had 1/2 cup brown rice w/ supper or a piece of bread. I ate veggies, fruit, and lean meats. I lost 20 lbs over about 5-6 months and guess what?? Heartburn/GERD vanished! I finally realized that I was simply eating too much food at meals. Smaller meals really helped.

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No offense meant, but are you overweight? The reason I'm asking is that I had such bad heartburn/GERD that I was on my way to the doc's to ask for Nexium or anything higher powered that the OTC stuff cause I was in such pain every night... if I didn't know it was heartburn/GERD, I'd have sworn I was having a heart attack.

The diet that you listed is pretty much exactly what I went on. I cut out almost ALL carbs and only rarely had 1/2 cup brown rice w/ supper or a piece of bread. I ate veggies, fruit, and lean meats. I lost 20 lbs over about 5-6 months and guess what?? Heartburn/GERD vanished! I finally realized that I was simply eating too much food at meals. Smaller meals really helped.

Hi There -- No offense taken; nope, fortunately not obese. I did happen to put on a few extra lbs in recent years, but this diet has stemmed that trend; am 5'7" and weight 155lbs...and hope stay in/around this weight for sometime.

Anyhow, thx to everyone for their suggestions/comments. In response, I have had the H. Pylori check and it came back negative. I may in fact be sensitive to the claimed hypoallergenic supplements and Adderall. It may just simply be the Adderall. It would be a shame if I had to cut the Addy, as it's definitely helped and has a nice stimulative-effect to offset the fatigue.

As for my diet, I don't always eat organic, and based on my food allergy panel, am trying to stay away from the secondary sensitivities, but quite possibly I need to do more. I don't eat cold cuts from the deli any longer and likely cannot eat nuts straight from the can -- am a persistent bugger and had to figure this out the hard way.

As I mentioned in the original thread, my GERD has always been somewhat tame. Until I went on the gluten-free diet, the only symptom I was aware of, was the sensation of something small, like a piece of corn, being stuck in my throat. I don't have painful heartburn, etc. However, on the gluten-free diet, ironically, the symptoms have gotten progressively worse. I don't eat as much as I used to, but regardless, could certainly stand to eat smaller portions and not late at night.

Off to a new GI doc tomorrow...will let y'all know what I come-up with!

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I found out 3 years ago I had celiac and have stuck w/ the diet religiously..In November I became very sick and excess acid coming up. I lost 20 pounds in 2 weeks..My throat was burned and couldnt eat anything..went to a GI and was told I have no hernia, ulcers, tuimors, etc. butthat I have Gerd..Im trying to stick w/ the Gerd diet, but he has me on Lasprazole(twice a day)..I feel better somewhat, occasionally having problems swallowing. I am wondering what vitamins I should be taking for Celiac, seeing as I was told no vitamins w/ Gerd. Also, I read on your forum that I shouldnt take Lansporazole for a long time, but he has me on it indefinatly..HELP!!

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You necro'd a dead thread :)

The issue with GERD is that it has this lovely habit of damaging your throat. It took mine about a year before i could get it to heal.

As for the medication, i had to cold turkey it because i became intolerent to it.

No vitamins with GERD? I don't think so, never heard that one. If pill taking is an issue, i'd focus on foods high in certain vitamins your lacking

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I found out 3 years ago I had celiac and have stuck w/ the diet religiously..In November I became very sick and excess acid coming up. I lost 20 pounds in 2 weeks..My throat was burned and couldnt eat anything..went to a GI and was told I have no hernia, ulcers, tuimors, etc. butthat I have Gerd..Im trying to stick w/ the Gerd diet, but he has me on Lasprazole(twice a day)..I feel better somewhat, occasionally having problems swallowing. I am wondering what vitamins I should be taking for Celiac, seeing as I was told no vitamins w/ Gerd. Also, I read on your forum that I shouldnt take Lansporazole for a long time, but he has me on it indefinatly..HELP!!

What Shadow said.

Also have you been tested for SIBO? I was just diagnosed with it and given an intense round of anitbiotics (nasty) followed by probiotics and a lower-carb, no sugar diet. GERD is much, much better now!

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    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
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