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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.

The Celiac Belly
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112 posts in this topic

I was prescribed miralax which helps me 'evacuate' fully and helps my belly remain flat (I too was asked when I was 'due' when I had gluten). Also, limiting raw fruits and vegetables, especially more than one meal/day, and taking digestive enzymes were helpful.

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I have been reading all your posts because I went to my nutritionist a few weeks ago and she advised me to keep a food journal and cut out dairy and limit my carb intake. but I still have the belly, yeah I was asked a little while ago if I was expecting! How embaressing to say no I have celiac and cant get rid of my bloat! Anyways, if anyone is lowering their carb intake how many grams of carbs should you consume?

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Through a couple of years of experimenting, aside from the necessary elimination of all gluten, I also discovered I had to severely limit these things:

1) sugar, sugar, sugar.....I'm best off if I never eat it, period.

2) I'm very carb sensitive, and that includes fruit....I have to eat only small amounts, no more than 1x a day.

3) I don't do well with "permitted" grains either....only small bits of brown rice occasionally.

4) I learned I couldn't eat all the gluten free goodies due to all sorts of other flours which gave me trouble, plus they are mostly full of sugar which brings up the sugar/carb problem

5) Nightshades are problematic....eggplant, potatoes, tomatoes. Have to severely limit these.

6) Dairy: I have to severely limit this too. Maybe it's the milk sugar? Even yogurts bloat me up. My dairy is pretty much limited to about 1/4 c. whole milk in my daily cappuccino.

7) Limit cheese....small amounts, not every day.

I actually feel best on what is pretty much an Atkins diet way of eating: eggs, moderate meat (not fatty stuff), veggies, very limited fruit, lots of water, some tea. I feel GREAT eating this way, but of course I can't seem to keep it up for all that long. Too bad, because I lost the belly and all the other excess fat eating this way. As soon as I eat too much of the stuff listed above, I bloat right up again and feel horrible.

Ye gads, to feel and look best I have to stick to a very limited and rather boring diet.

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Just a comment that it appears like I'm going to have major improvement with this since my switch to SCD diet. It is gluten-free of course, but also free of most of the things you just mentioned, CMCM.

Bloating and good BM evacuation are really improving. I am still a bit overweight and not so young so I am not sure yet to what degree this will improve, but it is definitely better.

I'm less than two months on SCD so improvement could continue for awhile.

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Thank you, I'm going to look into the SCD diet. I'm really starting to wonder if its the carbs even though they are gluten free still giving me problems, IE bloating and gas. I'm just getting really dissapointed with this belly not going down. Hopefully this change helps.

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I have the bloated stomach too. Although I don't always have it. It seems to be there some times and not others, I'm not sure what causes it.

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I heard Suzanne Sommers on Today show talk about her new wellness book, she mentioned the importance of adaquate levels of betaine HCL (stomach acid) in maintaining health in regard to eliminating toxins from the body. I googled it and it seems that bloating, gas, belching etc... can be a symptom of not enough betaine hcl in the gut. Candida, parasite infections and other conditions can result from this lack of acid in the stomach. I find this very interesting as it may relate to the celiac belly and am going to keep researching ...I put the ? out to the forum and hope for a response from someone more knowledgable than myself.

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Thank you so much for posting this! I used to have DH (when I had leaky gut) - now my symptoms have settled down and I have the "bloat belly". It's nasty. I hate feeling like somebody is making a circus balloon animal out of my intestines!

I have been gluten free for a long time, though sometimes I'm not as vigilant as I should be.

I am always constipated, too, and I eat tons of fresh fruits and veggies and drink lots of water. Does anybody know of a way to flush everything out?

I'd be eternally greatful!

Thank you,

Shawn

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Iodine therapy helped my bowels move much. It also helps thyroid, mood and many other things.

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Hi there.

Not sure if I've posted in response to this thread before, but I believe severe bloating can be one of the most psychologically disturbing symptoms Celiacs have. Nothing like looking "fat" when you can't help it. Nothing like not being able to fit into nice clothes when you have a special event to go to. It's soooo depressing.

Some things that help me:

- Gas X. I take it every day and it really helps dissolve any built-up gas before it bloats me.

- Fennel Tea. Wonder herb when it comes to knocking out the bloat. NOW brand also makes capsules which work just as well.

- Limited grains. For me, this is key. I can digest gluten-free grains fine IF I have them sparingly, such as once or twice a week. This may not be a problem for others.

- Hot tea and coffee. Not sure why, but hot drinks seem to make my stomach happy.

- No huge meals. Eating huge amounts of food at a time does not make my digestive system happy.

- Magnesium capsules, strong coffee before breakfast every morning, and Amitiza (prescription constipation med). All three work in conjunction to keep me having a normal BM every day (usually right after the 2nd cup of coffee), which keeps bloating away.

Secondary food intolerances can also cause bloating, so keep an eye out for that. It is my belief that once you have cut out all offenders from your diet, you shouldn't be bloated anymore, so if you are still having problems, keep looking. There WILL be something that helps.

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I used to get asked if I was pregnant because mine stuck out so much on my small frame and I had to buy the next size up to accommodate it so I know what you're talking about. I had mine still the first 2 months into the diet as I was still learning but after that, no more unless I am glutened, which is rare. I also have dairy issues but it doesn't cause my abdomen to be distended like gluten does. Very occasionally if I have alot of gas or am constipated for a day, it will stick out but 90%or more of the time I have my old flat tummy back. When I'm in good shape, healthwise, I have 2 or 3 normal BM"s a day. If I don't, a cup of black tea and tummy squeezes often get things moving. Probiotics or yoghurt can help. Many years ago I read Dr. Andrew Weil's book and if I remember correctly, he said we should be having a BM per meal if we are eating regular meals. I had one BM per day and thought that I wasn't constipated all those years when in fact I was very constipated. I would also recommend re-evaluating what you are eating to be sure that you aren't getting hidden gluten or CC. Don't eat anything unless you've confirmed for yourself that it is gluten-free.

My stomach distends also.... I don't ever recall myself having a muffin belly, until my diet changed.

I have learned to embrace my muffin belly.

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I read my way through this thread (C'mon, who didn't? That belly is FROM HELL) a few weeks ago and started eliminating stuff...

The good news is that I am still cool with soy and neat gin :unsure:

No, it's not quite that bad really (I hope!)

Interestingly enough, most of the things I needed to cut out were things I reacted to as a kid and then stopped reacting to (makes sense...perhaps I simply stopped absorbing the irritant rather than stopped reacting to it?). I cut out:

  • Peanuts (they went with gluten)
  • Oily red fish (was allergic as a child)
  • Eggs (reacted horribly to for a few years as a child)
  • Tannins (had a migraine reaction to tea and red wine for a very long time years ago)
  • Dairy (jury is still out...I have a feeling I may be able to tolerate that again some day)

The sneaky one, for me, was tannins...they are in SO many things...like chocolate, particularly the dark chocolate that is the gluten and dairy free compensation we get for being celiacs... :o

It's almost TOO unfair.

Literally, I grabbed an 80% bar of chocolate while shopping, ate a couple of pieces and could feel my belly swell and get crazy (along with my ankles etc filling up with water) while I drove a mile...so I checked the web for contents as soon as I got home and found that all forms of cocoa are loaded with tannins (which I already knew I couldn't tolerate).

When I realised that I react to beans and yam too, and that "slimfast" contains traces of gluten, I decided to try and stick to most of the specific carbohydrate diet (it is full of things I do not react to)

...and for the first time, in more than a decade, my stomach is flat and empty all day...UNLESS I accidentally ingest something I am sensitive to.

I also seem to finally be losing weight reliably.

LadyW

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"I have 2 main suspects, gum and coca-cola. Both are supossed to be gluten free, but my stomach says otherwise. Like others have said, the distension is my best measure of having been glutened."

Yes, both are known bloaters for me. The gas in the pop is a bloater and the air extra air you swallow with gum is also bad. I have also added using straws to drink beverages to my list, for the same air reason.

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We noticed that it was dairy and soya together that did us in! If we ate dairy, the swelling and bloat would stay if we ate even the tiniest amount of soy. Now we are off both we have not stopped getting compliments!!! And she looks way taller!!!

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Just wondering, has anyone noticed if exercising has helped the belly? (God, I HATE this thing that's happening to mine! Haha) I've been gluten free for about 2 1/2 months and cant' seem to get rid of the belly either. It's starting to look better, but I still feel like I look pregnant. When I get hungry it swells up..when I'm full, it swells up. The only good times are morning and......yep, that's about it! LOL I do remember a time, even before being gluten free where my stomach was not quite such an issue. The only thing differently I was doing THEN (besides eating gluten back in the day) was exercising heavily. I was a dance major in college and had danced most of my life. I still had ibs/celiac bloated belly back then, but not nearly as bad. I was injured a few years ago and have yet to be able to resume an exercise routine that resembles anything like what it used to be. I feel much better now and would like to start working out again. Just wondering if that might help?

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Hi there.

Not sure if I've posted in response to this thread before, but I believe severe bloating can be one of the most psychologically disturbing symptoms Celiacs have. Nothing like looking "fat" when you can't help it. Nothing like not being able to fit into nice clothes when you have a special event to go to. It's soooo depressing.

Some things that help me:

- Gas X. I take it every day and it really helps dissolve any built-up gas before it bloats me.

Which of the Gas-X do you take? Softgels, Chewable, Strips??? I tried to call the company but the person that answered I could not understand at all and it sounded like the person was outside in the wind or something, strange.

Thank you so much!!!!

Any more info/pointers anyone has PLEASE share. I am sooo tired of this bloat and looking pregnant. I miss how I use to look, this year I feel like I have blown up like a baloon, so depressing at times. Kind of stupid/silly but I am nervous about visiting my 3 brothers that they are going to ask if I am pregnant <_< I know my parents wondered one of the last times they came to visit.

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I just found out that I have celiac disease about two weeks ago and lately I have been so bloated which is why I went to the doctor in the first place) I have been working out at least five times a week and eating a healthy diet with no dairy or sugar, only good fats and whatever fat is in meat, no wheat, and since i found out,I'm trying to eliminate all the gluten but I cannot seem to loose weight. In fact, even though my body is looking better and more toned (my kickboxing instructor even commented that I look great) my pants are fitting tighter. It seems like my symptoms are just now occuring at the age of 19. Was weight gain a problem for anyone when you started noticing your symptoms or could this just be bloating? I cant figure out if i am bloated or getting fat!!!

Weight gain-- in my stomach area-- was my first symptom. I was 22 years old (now 24) when it started and a professional track runner...Yea...so it had nothing to do with my exercise levels or healthy eating, which is what told me it was time to go to the Doctor. Keep working out, and be nice to yourself. Dont beat yourself up about the weight gain, its not your fault and it sounds like you are taking care of yourself. Keep doing what youre doing and it will get better. The important thing is that you're healthy.

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I'm 18 years old (but look about 13), 5 feet tall and 95-105 pounds depending on the day. I am very petite but sometimes disapproving adults have asked me when the baby is due. I get extremely insulted..not only are they calling me fat, but they must think I'm a slut! ugh I hate the bloating, and nothing I have tried helps get rid of it yet. I wake up in the morning and love my body, but by dinner time my belly is big again.

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Bless you for posting this! That is wonderful news! I am now optimistic that mine will flatten out soon too. I'm almost at my 1 year anniversary of going gluten free, so hopefully I will see results soon! Please pass along any advice as to how to do it if there is anything to do other than follow the diet and continue to eat healthy and exercise.

Thanks!

Emily

Ahhh! I thought I was the only one struggling with this ridiculous 6 mos. looking belly. I have been gluten free for 2 months. After 2-3 weeks my belly went the flattest I have seen in years!!! I was so excited, BUT then something happen or something I started eating kicked in and it has its ups and downs :( I am still trying to pinpoint what it is. I know rice does it, but I love rice too much to give up. I'll just decrease how much I have and when I have it. But, I agree... Hot, green tea has done wonders for me. It also helps your metabolism (mine, anyway), so you don't want to eat as much afterward. One thing I have been doing is starting to eat foods from the earth. My fridge is stocked up with fruits and vegetables. I am coming to the reality that processed foods is just not going to cut it. I need to eat the foods we were created to eat. I am still experimenting with this BIG tummy of mine and it may take time, but all of the tips provided in this post has helped tremendously!

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Ahhh! I thought I was the only one struggling with this ridiculous 6 mos. looking belly. I have been gluten free for 2 months. After 2-3 weeks my belly went the flattest I have seen in years!!! I was so excited, BUT then something happen or something I started eating kicked in and it has its ups and downs :( I am still trying to pinpoint what it is. I know rice does it, but I love rice too much to give up. I'll just decrease how much I have and when I have it. But, I agree... Hot, green tea has done wonders for me. It also helps your metabolism (mine, anyway), so you don't want to eat as much afterward. One thing I have been doing is starting to eat foods from the earth. My fridge is stocked up with fruits and vegetables. I am coming to the reality that processed foods is just not going to cut it. I need to eat the foods we were created to eat. I am still experimenting with this BIG tummy of mine and it may take time, but all of the tips provided in this post has helped tremendously!

after reading this thread - everything is finally coming together for me. I recently learned that I have sensitivity to gluten. I thought I was just having abdominal issues because of my endometriosis (diagnosed dec 08) - so all these new things I am learning are all coming together thanks to reading forums. I have had this stupid belly for about 2 yrs. I thought I was just gaining weight because I am in my late 30's. But weight had never accumulated in my belly before - it hit other spots. The weird thing about my belly was that it looked more distended and was always hard - I hated wearing my jeans or any pants that were too tight around my waist. I was loving summer so I could wear sundresses all the time. But it was REALLY bringing me down when I would put on a pair of jeans and feel like organs in my belly were being constricted. such a strange feeling.

So, just learned I am senstive to gluten- so trying to figure out how to go 'gluten free' - and now I am very hopeful that this journey will bring me yet ANOTHER good result... losing the distended belly from hell.

Thanks everyone!

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It will go away. My belly did that until I went gluten free. It's so funny reading this, I thought I was the only one..lol

It's so nice, it does go away so don't worry but, it didn't for a good while because the same thing would happen when I would eat nachos made from corn.

You may be reacting to something else or you may be getting cc from something. Your partner has to be careful too.

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When I first got diagnosed it took 3 months and I had to do more than just eliminate gluten. I had to take all the dairy, soy and corn out as well. NO GRAINS! I also supplimented with CLA, Fish Oils, Probiotics, and a very good detox solution to help clean out my intestines (a hydroclonic is also recommended). I started on a workout routine with pilates and helped to activate my deep core and my pelvic floor (the tva helps to pull the belly muscles in rather than the dumb crunches). Its VERY HARD. Its been 4 years and I moved to a place where I had no choice but to eat Gluten and Milk again and BOOOM its back!!!!! Its a perm lifestyle change but YEAH you can get there!!!

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I used to have a terrible celiac belly! (I don't know if I have celiac disease but my belly thought I did!) If I hadn't eaten anything, it would sort of be ok. Within 20 mins of eating it would start to distend and get as hard as a rock. It I were out somewhere and couldn't unzip my pants I would have to leave. I had to stop wearing pantyhose completely. It was very painful. I would also become very gassy except that the gas felt 'stuck" and wouldn't come out. I would end up bending myself over a chair or...don't laugh...go in the bathroom and stand on my hands to move the air. I know, it sounds extreme. I lived at least 10 yrs like this. I took Gas-X or Beano everytime I ate. I took stool softeners everyday and laxatives on the weekends. I rarely had BM's and when I did they were hard. I once did a transit test to check my colon motility. The homemade test was to swallow 10 - 20 whole kernals of corn, no chewing, just swallow...then wait. A normal colon would eliminate the corn within 24 hrs. My corn never made it out!!!!

I don't get the bloating like I used to. But I am still constipated (except when I have diarrhea.) And my belly is still growing.

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I was prescribed miralax which helps me 'evacuate' fully and helps my belly remain flat (I too was asked when I was 'due' when I had gluten). Also, limiting raw fruits and vegetables, especially more than one meal/day, and taking digestive enzymes were helpful.

If evacuating is hard for anyone there is a natural way to try; take magnesium start with the lowest amount say 100mg daily if no results add 100mg every two days until you clear out. This will tell you how much you need. magnesium is good for the muscles. I have tried everything and this works! if you take too much you will become too loose - if you had results at say 500mg try taking 400mg a day and go up to 500 mg if you need it. If you are always on the loose side then you'd have to take it with calcium to balance.

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I suffer a variation of the "Celiac Belly" if I ingest Gluten. Pre-diagnosis it would distend pretty severely in one area above belly button and become literally as hard as a rock (I dubbed it 'Brick Phase') and get constant pain with occasional shooting pain. Post-diagnosis, if I have accidental ingestion it will just "brick" itself with distention. My only problem was that the distending stayed somewhat often even though I wasn't getting any CC, but without the brick hard feeling.

I went to my doc about it, and come to find out I had a hernia that may have been related to this. Surgeon wouldn't say it because he never saw it "brick" itself and becuase I had previous abdominal surgery (twisted intestine in 2005) he deemed it an incisional hernia. Then came to find out I had 4 hernias :o 1 big, 3 small. Now post-surgery, I had a "massive" gluten ingestion last Friday and its been distended relatively bad and bricked so I'm hoping its not interfering with the mesh/recovery but I'll know more with followup in a few days.

I'd recommend if you haven't already and have similar symptoms to what I have, is to get checked for a hernia since the intestine may be pushing against the abdominal wall and thus weakening it over time.

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