The Celiac Belly

[Emily Elizabeth]

Has anyone had the "celiac belly" and gotten rid of it? By celiac belly I mean the stomach that expands/distends more and more as the day goes on. So you have to by larger pants in order to fit into them by the end of the day. Anyway, I've been gluten free about 10 months and have still not gotten rid of this. My antibody levels are going down (ttg/iga 5 U/ml) so I know that I'm doing something right.

I would love to hear from someone who has had the celiac belly and gotten rid of it. Even if you tell me that time is the only thing that can fix it, I'd love to at least have hope that it will go away! Thanks in advance.

Emily

[lizard00]

Sorry, I cannot say that I have had that particular issue. But, seems here many have and often dairy is the culprit. Have you tried avoiding dairy to see if that helps?

[Guest LittleMissAllergy]

I am gluten free, dairy free, fat free, sugar free, meat free, egg free, nut free, citrus free and I am STILL bloaty Is yours kind of painful? Not only is it uncomfortable but it cramps my style! Haha. Luckily I love wearing "baby doll" flowy tops, but that's all I can wear!

[Emily Elizabeth]

I am gluten free, dairy free, fat free, sugar free, meat free, egg free, nut free, citrus free and I am STILL bloaty Is yours kind of painful? Not only is it uncomfortable but it cramps my style! Haha. Luckily I love wearing "baby doll" flowy tops, but that's all I can wear!

Yes, mine is painful when I'm intestinally "sick" - leaky gut. When I'm not sick though, it's not painful at all, it's just there. I've been leaning towards the more flowy tops now too. It's so frustrating because my entire wardrobe has had to change in order for me to be comfortable. I hope that someone can provide some hope for us!

Emily

[Emily Elizabeth]

Sorry, I cannot say that I have had that particular issue. But, seems here many have and often dairy is the culprit. Have you tried avoiding dairy to see if that helps?

I was dairy-free for a couple months when I thought I was lactose intolerant and unfortunately the stomach was still there (then I tested negative for lactose intolerance and started eating it again). I may try it again though and see if it helps. Thank you!

Emily

[melmak5]

I call it the go-go-gadget belly.

The only thing that made it better was IBS medication... but I broke out in hives from it, so I am trying another kind, but its not working.

Avoiding fried foods, beans, sugars, whole grains and dairy helps some, but not completely.

[blueeyedmanda]

Yes, mine is painful when I'm intestinally "sick" - leaky gut. When I'm not sick though, it's not painful at all, it's just there. I've been leaning towards the more flowy tops now too. It's so frustrating because my entire wardrobe has had to change in order for me to be comfortable. I hope that someone can provide some hope for us!

Emily

I am not bloaty, mine is just there.....and I did start excersing....but I choose more flowing tops as well. Which helps right now is that is the style

[missy'smom]

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.

[Emily Elizabeth]

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.

Thank you so much for your post. I am so happy to hear that it is possible that it will go away! I will continue to exercise and eat healthy and pray that I am able to stay healthy for a long enough amount of time to see results. Right now I've been sick for over a month (must have gotten glutened somehow, but I have no idea from what) so it is of course worse than usual. Hopefully once I am well again, I can stay that way, and eventually fit into my old clothes! Thanks for giving me hope.

[hippiegirl2001]

Has anyone had the "celiac belly" and gotten rid of it? By celiac belly I mean the stomach that expands/distends more and more as the day goes on. So you have to by larger pants in order to fit into them by the end of the day. Anyway, I've been gluten free about 10 months and have still not gotten rid of this. My antibody levels are going down (ttg/iga 5 U/ml) so I know that I'm doing something right.

I would love to hear from someone who has had the celiac belly and gotten rid of it. Even if you tell me that time is the only thing that can fix it, I'd love to at least have hope that it will go away! Thanks in advance.

Emily

Hi Emily! I had the belly, I called it IBS belly since that was and is my diagnosis, for 3 1/2 years. To call it bloating wasn't doing it justice, it was Abdominal Distention! I would be normal when I woke up in the morn, and around lunch time my waist would grow 3-4 inches. It was stuck gas from the undigested wheat I was eating. Had to undo my pants button and sometimes unzip my zipper all the way down. The problem was trying to find clothes to accomodate both sizes in one day size 8 waist in the morn, 14 -16 in the afternoon. I tried maternity pants but they didn't stretch in the afternoon, only bound me in more. Underwear that didn't bind was an issue too. I actually wore some Hawaiian muu-muus! What cured it for me was a few weeks off gluten, especially stopping the 20+ grams of wheat fiber I'd eat for breakfast in the morn. My MD only told me to take Metamucil 3X a day, which I tried for 3 months and only made it worse (lack of fiber was Not the problem).

Missy'smom gave you great advice, lots of stuff I was going to say. I drink hot green tea before meals and after meals, no drinks with meals except maybe sips of room temp water to swallow with. I drink water when I first get up, followed by coffee only awhile before my breakfast. I eat kefir which is like yogurt with probiotics (I make a protein shake with fresh fruit out of it). I massage my belly, and put a heating pad on it if I get pain. My belly is still tender, I can't stand tight clothes, but it is almost consistenly flat. After having that problem for so long, you can bet that I never knowingly eat gluten. I found I had to be better about assuming things were gluten free, especially my medications & vitamins. Family dinners, I take my own food. I err on the side of caution now. I am trying all kinds of vegetables I have never tried in my life before such as beets & brussels sprouts. My goal is 90% of my food will be fresh & organic, the other 10% can be processed gluten free stuff. Today I had too much fiber in the morn, Cream of Buckwheat with ground flaxseed, and a protein shake with hemp and flaxseed later. Had a minor belly problem but nothing like before. I also drink a small glass of wine when I get a tummy ache in the afternoon and it seems to help.

Hope your belly goes back to normal soon!

[LeahKristen]

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!!!

[Emily Elizabeth]

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!!!

I know the feeling! If you answer yes to one of the too questions below, then I would say you are not getting fat.

Were you too thin before?

Can you fit in your pants in the morning, just not at night?

If you were on the thin side before and not able to put on muscle due to the damage in your stomach, then you are probably just now starting to do so which is great! That means you're getting healthy! Or, if it is a case of you being able to still fit in your pants in the morning, but not at night, then that is certainly due to bloating.

I started getting my first symptoms when I was 19 too, but wasn't diagnosed until 7 years later. I lost a lot of weight and people thought I was anorexic. Then I got a little better and was just thin and couldn't seem to put on the muscle I used to. After being diagnosed I put back on about 5 lbs and am struggling like you are. My pants don't fit at night so I feel fat. I wish I could get rid of the stomach bloating so I would stop asking myself every evening if I'm getting fat too!

I've just recently started writing down what I eat and writing down my symtoms each day to try to figure this out. For me, if I write down what I eat and I see that it was healthy and the right amount for my weight and activity level then I feel better about myself. If you know you are doing things right, then you will be confident that you are not getting fat and it's something else you are dealing with. If I figure anything out I will certainly post it!

[missy'smom]

I used to live in California where women let their tummies hang out year round and mine always looked different than the other moms. Their's was a little jiggly and could be tucked into their pants. No offense to anyone. But mine was hard and round. It was a little painful if I wore anything too tight. I did gain some weight too in the last few years as I was getting sicker.(I was undiagnosed for 8 years) My sister(before she realized she had celiac disease as well) kept telling me I was in denial and that it was just weight and lack of exercize and I somewhat believed it but part of me knew it wasn't. Every once in a very rare while, my system would clear itself out and my tummy would go back to normal, giving me a clue that it wasn't just fat. I dropped 16 pounds seemingly overnight when I went gluten-free and went back to what I consistantly weighed for 10 years before I was sick. In the end, being healthy is what matters most.

[Respira]

My belly used to look 6 months pregnant, I am happy to say it is as flat as a pancake. I'm 54 yrs. old and now have a flat tummy that any 20 yr. old would be proud of.

[Emily Elizabeth]

My belly used to look 6 months pregnant, I am happy to say it is as flat as a pancake. I'm 54 yrs. old and now have a flat tummy that any 20 yr. old would be proud of.

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

[Respira]

My tummy went down slowly but surely until one morning I woke up and realized my hip bones were higher than my gut, I jumped out of bed ran to the mirror, did the profile view and there it was..a totally flat belly. The last thing to go after the swelling went down was what I called a protective fat layer. I had this one inch layer of fat that I swear my body put there in response to all the inflammation. It was the only spot on my whole body that had fat...it was really weird...and no amount of exercise or watching calories affected that little fat layer. Then I guess my body decided it no longer needed protection there and let it go.

P.S. I keep a journal and write down anything I put in my mouth. This helped me to discover which foods I need to stay away from. Even though these foods do not have gluten in them, they still cause bloating.

[LeahKristen]

Thanks for your replies. My mind is a little more at ease now. Hopefully I will start feeling better after being on the gluten free diet longer. I guess it just takes time and dedication to being gluten free... as hard as that is with the contamination factor.

[AliB]

I dropped gluten and dairy in January but still had issues with food and realised that, like many others who often don't realise it, my problem is more than just gluten and dairy - I am actually very carbohydrate intolerant.

Although I had cut down on some carbs, I had still replaced the gluten with other carbs instead and was having problems with them, so 2 weeks ago I went on to the Specific Carbohydrate diet which limits carbs to just those in a little honey, well cultured homemade goats yogurt, fruits and vegetables. I have meat, fish, and poultry along with plenty of veg and my stomach is a lot better, I am sleeping better and my heart is no longer pounding constantly. I still have a belly, but that is due to fat, not bloating!

If you are still bloating it means that bacteria in your gut is using the carbs you are eating as food and producing lots of gas (and toxins) as a byproduct. Although there are odd medications around that may help, the bacteria can become resistant to them - the only sure-fire way to control it is to dump the carbs and particularly sugar.

Once it is under control then we may be able to consume an occasional treat of carbs, but a lot of the reason we become carb intolerant is due to the quantity we consume. Most people are eating and drinking sugar and carbs from the minute they get up to the minute they go to bed (and sometimes in the night as well!) and our bodies cannot cope with it. High-carb, high-sugar consumption is a breeding ground for illness and disease.

[Emily Elizabeth]

High-carb, high-sugar consumption is a breeding ground for illness and disease.

Thanks AliB! I do notice that when I start eating less sugar I also start to feel a little better. I'll have to try this and see if it helps - it will take discipline!

[Kritter]

Emily Elizabeth,

I'm so glad you asked this question! I've been gluten-free for a little over a month now, and my belly is getting worse instead of better. I thought I was going nuts! Thanks for having the guts to ask this question!! (no pun intended!!) AliB's reply really makes sense to me!!!! I'm consuming lots and lots of carbs (even though they are gluten-free) and a fair amount of sugar. I'm so thankful for your input, AliB!! I was wondering if sugar had much to do with my discomfort. I just didn't want to believe it because I feel like I have to cut out so many things as it is. But I'm going to try your suggestions! Can't go around looking pregnant when I'm not!! It's embarrassing! I was too embarrassed to even ask about it - so thanks everyone!!!

Kritter

[Guest Lore]

I KNOW that belly- it's terrible! It's so strange that it happens in mid-late day for everyone, it is the same for me as well! I noticed that it started to go away once I cut out SO many things.... dairy, nuts, corn, eggs. A few weeks ago I had some dried cranberries and noticed that I got the belly.... so I cut those out for a while, then last night I had some cranberry juice and got it within an hour. You will just discover over time that there are things that will trigger it, that is my only assumption.

Something that I've tried that really seems to help with digestion is eating a handful of prunes after every meal. I buy the Newman's Own bag of prunes at Vons and have two or three after I eat and it seems to help a lot, and they are yummy!

[susieg-1]

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

I also was asked if pregnant with large round hard belly. gluten-free diet helps and also have begun probiotics before bed and am finding BM is nasty in the AM and assume that belly is full of bacteria from undigested food pre-gluten-free diet. Am still bloated but it is improving and hope the probiotics continue to help. gluten-free for 8 months and coping

[Guest hightop girl]

I have the same problem. I was diagnosed in July. At that time I was so anemic they wanted to do a transfusion, but I ended up have 2 IV iron infusions instead. Anytime I even have the slightest amount of gluten, I bloat. I am still trying to figure out the diet. It is more complicated than I thought, so I occassionally end up with some gluten. I have done a couple of things that help. 1) epsom salt and ginger baths to help get rid of toxin and water retention. 2) no diet coke 3) trying to follow the elimintion diet to figure out what is actually causing the bloat. It took a while after diagnosis to lose the weight I couldn't seem to stop gaining. I eventually lost about 25 lbs. Lately I have gained about 3-5 back, but I am holding fairly steady now. Does this seem normal?

[susieg-1]

I have the same problem. I was diagnosed in July. At that time I was so anemic they wanted to do a transfusion, but I ended up have 2 IV iron infusions instead. Anytime I even have the slightest amount of gluten, I bloat. I am still trying to figure out the diet. It is more complicated than I thought, so I occassionally end up with some gluten. I have done a couple of things that help. 1) epsom salt and ginger baths to help get rid of toxin and water retention. 2) no diet coke 3) trying to follow the elimintion diet to figure out what is actually causing the bloat. It took a while after diagnosis to lose the weight I couldn't seem to stop gaining. I eventually lost about 25 lbs. Lately I have gained about 3-5 back, but I am holding fairly steady now. Does this seem normal?

I lost 10 lbs after going on gluten-free diet. I never drink cola products as they all seem to have carmel color in them and I thought that carmel color was a derivative of barley. I could be wrong and am curious if anyone knows if cola is ok for celiacs. am also still fighting the celiac bloat. hope to get rid of belly before summer so any suggestions are great!!

[Guest hightop girl]

This happens to me too. To top it off, I either ate some gluten on chopped dates or potato chips, or have the stomach flu, but I think I may be the only person on the planet to have the "runs" all night and wake up with the gluten tummy and gained 3 lbs over night. If the stomach pain isn't enough, the weight gain and tummy add insult to injury. does this happen to anyone else?