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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.

Still Constipated!
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19 posts in this topic

Well I have had chronic constipation since I was an infant. I have been recently diagnosed with celiac and have been gluten free for 2 months (feels MUCH longer than that haha) and dairy free for a month. Since going dairy and gluten free I feel a lot less gassy. I don't feel like I have trapped air bubbles in my stomach as much. But I still suffer from constipation, very badly. I am getting so frustrated and just feel so full and big and uncomfortable all of the time. I eat tons of fiber and drink tons of water, and feel like I am doing everything right. I am at my wits end! I feel very depressed and don't want to do anything. I just feel defeated because I have literally been dealing with and trying to figure this out as long as I can remember. I feel like no one understands because all anyone ever says to me is, oh you need more fiber, or exercise more or drink more water. But i've done it all!! I am turning to you guys because I am sure I am not the only one in this group going through this. I need help please!

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You may want to get your thyroid checked. I know what you are going through. It's not fun :( I went to a dr that has been helping me through diet and supplements. I just started back on thyroid meds. The diet and supplements have helped a lot. The dr said after I get my thyroid meds where they should be it should help with the c so I won't need the supplements. Be careful with fiber powders and stuff cause they can actually make the problem worse. Also you have to factor in the damage the gluten may have done to your digestive tract. It's going to take time but give it time to heal.

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You may want to get your thyroid checked. I know what you are going through. It's not fun :( I went to a dr that has been helping me through diet and supplements. I just started back on thyroid meds. The diet and supplements have helped a lot. The dr said after I get my thyroid meds where they should be it should help with the c so I won't need the supplements. Be careful with fiber powders and stuff cause they can actually make the problem worse. Also you have to factor in the damage the gluten may have done to your digestive tract. It's going to take time but give it time to heal.

Thanks SleepyBunny! how exactly do you get your thyroid checked? what kind of test is it?

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Unfortunately it's a blood test. I hate needles! Lol You can ask your dr to test it. There are others on here who know more about what tests to ask for and what they mean. Hopefully some of them will chime in :)

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Jumping in here late ! There is such a thing as chronic C....mineral oil or daily dosing of miralax will get things moving...It does take time. I was in hospital for 7 days for this problem. Two weeks & nothing so I understand.. Hospital tried everything except dynomite.......what I mentioned above worked finally... Some will say drink more fluids,, eat more fiber & so on but for chronic C this just doesn't work .. I do drink 64 ounces of water , eat raw veggies & fruits everyday,. eat two salads a day but still does not curb the big C.. So for normal moving bowels this regime works but for chronic it doesn't .. With that being said I'm not saying to not eat veggies, fruits & such we need those items & can bebefit in other ways from eating them daily...Miralx is safe non-habit forming , gluten-free... you can take it three times a day at first & it works best on an empty stomach to get the best results....

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Jumping in here late ! There is such a thing as chronic C....mineral oil or daily dosing of miralax will get things moving...It does take time. I was in hospital for 7 days for this problem. Two weeks & nothing so I understand.. Hospital tried everything except dynomite.......what I mentioned above worked finally... Some will say drink more fluids,, eat more fiber & so on but for chronic C this just doesn't work .. I do drink 64 ounces of water , eat raw veggies & fruits everyday,. eat two salads a day but still does not curb the big C.. So for normal moving bowels this regime works but for chronic it doesn't .. With that being said I'm not saying to not eat veggies, fruits & such we need those items & can bebefit in other ways from eating them daily...Miralx is safe non-habit forming , gluten-free... you can take it three times a day at first & it works best on an empty stomach to get the best results....

Thanks! Is the mineral oil a suppliment?

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You can find mineral oil at any drug store/Walmart .. It is in a bottle & just says mineral oil, very cheap. Years ago that is what they gave babies... But remeber it works much better with a not so full stomach... Once I get moving I do every other day ..with the miralx as once you get a routine & continue it will make for D .. so you will adjust to meet your needs..

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Well I have had chronic constipation since I was an infant. I have been recently diagnosed with celiac and have been gluten free for 2 months (feels MUCH longer than that haha) and dairy free for a month. Since going dairy and gluten free I feel a lot less gassy. I don't feel like I have trapped air bubbles in my stomach as much. But I still suffer from constipation, very badly. I am getting so frustrated and just feel so full and big and uncomfortable all of the time. I eat tons of fiber and drink tons of water, and feel like I am doing everything right. I am at my wits end! I feel very depressed and don't want to do anything. I just feel defeated because I have literally been dealing with and trying to figure this out as long as I can remember. I feel like no one understands because all anyone ever says to me is, oh you need more fiber, or exercise more or drink more water. But i've done it all!! I am turning to you guys because I am sure I am not the only one in this group going through this. I need help please!

I am running out the door but had to take a minute to answer you as I soo understand!

I have been gluten-free for 2 years and constipation has been the bane of my existence, and still is. At first, after being gluten-free for about 3 months I had a bout of constipation that four enemas didn't take care of. I understand being told drink more water, eat more fiber ~ I ate and drank so darn much there wasn't room for anything else. Three different doctors have told me that some people just have a problem with it. I have done the miralax, the warm (disgusting) prune juice, the orange juice, every single reccomend that has been offered. My solution? here it is (for what it is worth):

as close to a gallon of water per day as I can get down (some days are easier and some harder)

a good liquid probiotic 2 x's a day

metamucil 2x's a day

unsulphered molasses 1T in the morning and 2 T in the evening (for iron and healing the gut)

aloe 5 oz 2 x's a day (liquid not gel and start off at 3 oz 2x's per day. You can buy it at Walmart cheap)

veggies, veggies and more veggies (even just a small amount 3 x's a day)

4 stool softners per day (2 in the a.m. and 2 at bed) (check with your dr first maybe on this one and I would start with 1 2 x's a day)

cut the "junk" (good lol) food down to a couple times a week. Splurge on some chips now and then but make it a treat.

Keep the processed food to as little as possible.

I drink Smooth Move tea every other night. At first I did it every night (for the first 3 or 4 months) but was then able to cut it back.

That is my personal solution. And, having mentioned that I have done everything, and I mean everything, that has been suggested that is what works for me. I think that everyone finds their own cocktail so to speak. I have also found that I am an every other day sort of person. If it goes on longer then I have to resort to a ducolx to get things moving again.

It is my hope that as I continue to heal this will become better as well. I and older so my body is taking longer to heal but....

I know the desperation that you feel. You want to curl up in a corner and cry. Hard to explainto someone that you are crying over [poop - or lack there of!

For what it is worth i hope this might help you. It's all about finding the right cocktail.

Oh yeh ~ I have a glass of wine every evening - but that's for me not the constipation issue!! lol :P

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We can also be kind of low on magnesium from malabsorption, which will back you right up.

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At the risk of sounding uneducated, as this has never been one of my problems- exactly the opposite! I do know that coffee has an extremely laxative effect on some people, perhaps that would help? I know coffee make me poo, but then breathing makes me poo... I'm one of those 'Oh, there goes that pair of pants' Celiacs. But in general I do know that coffee makes people go. Worth a shot? Also, try getting that fiber from flax, chia, hemp seeds, rather than a supplement. It's working for Adalaide right now! She's putting flax in smoothies.

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At the risk of sounding uneducated, as this has never been one of my problems- exactly the opposite! I do know that coffee has an extremely laxative effect on some people, perhaps that would help? I know coffee make me poo, but then breathing makes me poo... I'm one of those 'Oh, there goes that pair of pants' Celiacs. But in general I do know that coffee makes people go. Worth a shot? Also, try getting that fiber from flax, chia, hemp seeds, rather than a supplement. It's working for Adalaide right now! She's putting flax in smoothies.

I wish coffee had that affect! Have tried drinking it, not drinking it but makes no difference. I do flax oil caps, magnesium supps, flax seed sprinkled on veggies & salads..... Honestly, I think I have tried it all. Imho it just comes down to finding your own personal "cocktail" so to speak.

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I have tried all these other methods and they did not help. I truly believe when something isn't working in your body there is a reason. Do you really want to be taking all these meds possibly for the rest of your life? I didn't! And when people told me to drink a bunch of water it irritated me to no end. You try feeling like you have a ton of cement in your tummy and drink a bunch of water. No thank you! Try going to a dr that uses natural methods and see if maybe you have some tummy bugs and also get your thyroid checked. If you've been eating stuff that has been causing damage to your body wether it's your tummy or your thyroid it's going to take time to heal. No offense to any of the other responses I just hated the idea of taking so many meds for this problem especially at my age. If our body is in correct working order it'll take care of problems like this.

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We all are not made perfect we all come with flaws, some big issues some little problems but none of us were made perfect...I spent a week in the hospital for C, I also use alternative meds & docs. I was tested many times over for cancer , perforatrated bowel & so on but all came back good. My alternative doc also said some people just have issues with a certtain thing that we maybe were just not perfect by design. Not that we are not perfect in the eyes of our maker--- just the way he wanted us to be.

I have tried & still try crazy things now & then. After two weeks of no movement I understand the pain..I eat all my fruits & veggies, drink water according to my body weight, take vits & min excersise but I still take meds for C.... I found that mineral oil & miralax are two of the safest things to use. I will not use something I can become addicted to or something that makes the bowels stop functioning on there own , on occasion...I use very little from mainstream drug companies because I am super sensitive to everything & I found I can use these two things on occasion ...

Also I'm a BIG fan of alternative meds & solutions but one can also take to much of these things & also have problems. Esp. when a vitamin or mineral is being taken & the body doesn't need it... Then the alternative meds get a BAD rap & the docs are called quacks...I believe we should be tested for vits & mins to see if we need it before just willy nilly going to the health food store & picking at random...

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A couple of weeks ago I had a session with a dietitian who works closely with my gastroenterologist, who is a celiac specialist. She said something which I have not read anywhere else, and I read as much as I can get my hands on. Basically she said that fibre from fruit and vegetables is all very well, but that the digestive tract specifically needs cereal fibre to be able get peristalsis moving decently. She said that people following a gluten free diet usually have too little cereal fibre in their diet, and that they need to pay attention to this to prevent constipation. Sufficient intake of water is also vital. Suitable sources of cereal fibre were brown rice and buckwheat. There were others, but I'm afraid I don't remember, as they weren't part of my normal diet. Gluten free pasta was of limited value as it usually tended to be low in fibre. Ditto cereal flakes, unless specially formulated to be high fibre.

Whilst I don't seem to feel too good if I eat too much cereal, and if I eat too much brown rice etc, I end up with D again, I have noticed that just a modest increase to my (previously very low)cereal intake seems to be keeping me relatively regular and reduces lower abdominal pain. Finding the right balance for me is still a work in progress though. I have a sachets of psyillium husk (spelling?) to use as a supplement if I need it, but am keeping reasonably regular without it so far. It has helped that the Genius bread I buy in the UK has recently be reformulated to have a much higher fibre content, even the white bread. I also have a high fibre breakfast cereal.

I should add that I didn't suffer C as badly as the above posters, as I would go once or twice a week. Still a painful interval though, with knock on effects of bloating and gas etc. C is new to me as I suffered from D until going gluten free. It took a few weeks for the D to properly settle down after starting the gluten free diet, and then my digestion became too sluggish.

For those interested, the dietitian also said that those following a dairy free diet due to lactose or casein intolerance must take a daily calcium supplement, and that iron intake of celiacs might be a bit on the low side too, even if your blood level was measured to be within the normal range. She was also generally supportive of probiotics.

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I have tried all these other methods and they did not help. I truly believe when something isn't working in your body there is a reason. Do you really want to be taking all these meds possibly for the rest of your life? I didn't! And when people told me to drink a bunch of water it irritated me to no end. You try feeling like you have a ton of cement in your tummy and drink a bunch of water. No thank you! Try going to a dr that uses natural methods and see if maybe you have some tummy bugs and also get your thyroid checked. If you've been eating stuff that has been causing damage to your body wether it's your tummy or your thyroid it's going to take time to heal. No offense to any of the other responses I just hated the idea of taking so many meds for this problem especially at my age. If our body is in correct working order it'll take care of problems like this.

I know what you mean! I feel like I have done everything and I can't even fit anymore water in my body! Have you gotten a colonoscopy? I have a dr app tmr and I thinkk I am going to suggest that to her. I just would like to know if it's something more. And yes I am also going to get my thyroid checked!

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We all are not made perfect we all come with flaws, some big issues some little problems but none of us were made perfect...I spent a week in the hospital for C, I also use alternative meds & docs. I was tested many times over for cancer , perforatrated bowel & so on but all came back good. My alternative doc also said some people just have issues with a certtain thing that we maybe were just not perfect by design. Not that we are not perfect in the eyes of our maker--- just the way he wanted us to be.

I have tried & still try crazy things now & then. After two weeks of no movement I understand the pain..I eat all my fruits & veggies, drink water according to my body weight, take vits & min excersise but I still take meds for C.... I found that mineral oil & miralax are two of the safest things to use. I will not use something I can become addicted to or something that makes the bowels stop functioning on there own , on occasion...I use very little from mainstream drug companies because I am super sensitive to everything & I found I can use these two things on occasion ...

Also I'm a BIG fan of alternative meds & solutions but one can also take to much of these things & also have problems. Esp. when a vitamin or mineral is being taken & the body doesn't need it... Then the alternative meds get a BAD rap & the docs are called quacks...I believe we should be tested for vits & mins to see if we need it before just willy nilly going to the health food store & picking at random...

Can you become dependent on miralax though? Will it make it even more difficult for me to go when I stop taking it? also, does it make you bloated? and mineral oil... do you put it in things? how exactly do you take it?

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No I never got a colonoscopy. I went to a gastro and he told me to take probiotics, konsol, colace and miralax. He said if I needed it to take a senna once a week. I said ok and asked will I have to keep taking all of this? He just said yes and that was it. No tests or anything. It worked for a few weeks then stopped. He also told me to drink a lot of water :angry: lol I know some of our bodies have flaws but I'm so tired of dr's trying to put band aids on everything. If I absolutely have to have this medication ( that may have worse side effects than the original problem) you better be a 100% sure you know what the problem is and this better be the last resort! A dr put me on an elimination diet and some supplements for my tummy and that helped a lot. Now I'm just working on getting my thyroid dose right. It'll take time but don't give up and don't let these drs walk all over you. Hope you feel better soon :)

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No I never got a colonoscopy. I went to a gastro and he told me to take probiotics, konsol, colace and miralax. He said if I needed it to take a senna once a week. I said ok and asked will I have to keep taking all of this? He just said yes and that was it. No tests or anything. It worked for a few weeks then stopped. He also told me to drink a lot of water :angry: lol I know some of our bodies have flaws but I'm so tired of dr's trying to put band aids on everything. If I absolutely have to have this medication ( that may have worse side effects than the original problem) you better be a 100% sure you know what the problem is and this better be the last resort! A dr put me on an elimination diet and some supplements for my tummy and that helped a lot. Now I'm just working on getting my thyroid dose right. It'll take time but don't give up and don't let these drs walk all over you. Hope you feel better soon :)

I know exactly what you're talking about with the dr's trying to put a band-aid on things. I had struggled with bulimia years ago before I was diagnosed with celiac (now looking back I think that celiac and not knowing about it had a lot to do with my eating disorder.) I also became dependent on laxatives. I finally got away from all of that but still had a problem with C. For years my doctor would just tell me to drink more water, exercise more, get more fiber. DUH i already knwo this and do this and I am back because it is NOT helping! and she would tell me to just take a laxative. UGH spo frustrating, because she knows my history with the laxitives and that i should not be taking them. Also, a laxative is a quick fix and this is a problem I have been struggling with from birth, as she knows. I finally had to do my own research and suggest the tests for celiac. And that is how I finally got diagnosed. But my god, you have to be pushy with your doctor if you want to get something done! It can be very frustrating. Thank God for the internet or I never would have figured this out oon my own!

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I have to agree with mammaw on this - sometimes we just don't work. I am all in favor of being as natural as possible, supps, water, fiber, exercise, etc. Sometimes it just doesn't work. I have had two colonoscopies and was told that I have a badly twisted colon and scarring from years of C. After 60 years of chronic constipation I really believe that my body may well never completely heal and that if I need to help it along from time to time, then that is what I need to do.

I do refuse to take the heavy duty drugs that the dr are all to quick to hand out. The GI dr wanted me to take Amitza, when I refused he wrote "refused" across my chart. He was quick to point out to me that I had no room to complain about C if I refused his medication. <_<

The positive side to all of this, for me, is that gluten-free has given me my life back. If all I have to deal with is C and none of the other pain, then it's all good. :)

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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