The Celiac Belly

[Guest hightop girl]

My bloating is kind of a come and go thing.... Maybe you all can help me figure this out. I probably need to keep a food journal, but for some reason I am just refusing. I seem to be fine from about Wednesday through Saturday. I steadily lose water weight all week. Then sometime saturday, the "bloat" begins. It seems like every weekend I eat something that ends up with me accidently glutened or my system is so sensitive that it reacts the same regardless. It starts with bloating, then stomach pain, lots of gas, headache, then the big D and 5-10 pounds of water retention. On Monday I am miserable. On Tuesday I have lost a couple of pounds of water. On Wednesday usually another couple, and by Friday I am back to normal... only to start the whole cycle again. This has been going on for about 2 months. Twice I was glutened accidently. The other times I think I just ate something my poor digestive tract couldn't quite handle. This weekend it was coconut. I guess I'll learn, but I didn't read the label and it had a lot of stuff for preservatives. None had anything to do with gluten, but I seem to be a little sensitive to sulfates. It has also been a lot worse as I have added back salad and meat to my diet. My stomach as a pins and needles stabbing pain all night while I try to sleep. I was pretty much living on baked potatos, sweet potatos and fruit smoothies. I guess I might have to go back to that limited diet again for awhile. I have been doing this since August (the gluten free diet) but didn't really try to get rid of everything until probably January. When the GI doc did my scope (only read if you have a tough stomach) she asked if I had followed the protocol to clean out my system first... I had, and had D for about 12 hours nonstop before the scope... anyway, she said she really couldn't complete it because she had never seen so much undigested food. Maybe that is part of my problem.... Help!

[Emily Elizabeth]

My bloating is kind of a come and go thing.... Maybe you all can help me figure this out. I probably need to keep a food journal, but for some reason I am just refusing. I seem to be fine from about Wednesday through Saturday. I steadily lose water weight all week. Then sometime saturday, the "bloat" begins. It seems like every weekend I eat something that ends up with me accidently glutened or my system is so sensitive that it reacts the same regardless. It starts with bloating, then stomach pain, lots of gas, headache, then the big D and 5-10 pounds of water retention. On Monday I am miserable. On Tuesday I have lost a couple of pounds of water. On Wednesday usually another couple, and by Friday I am back to normal... only to start the whole cycle again. This has been going on for about 2 months. Twice I was glutened accidently. The other times I think I just ate something my poor digestive tract couldn't quite handle. This weekend it was coconut. I guess I'll learn, but I didn't read the label and it had a lot of stuff for preservatives. None had anything to do with gluten, but I seem to be a little sensitive to sulfates. It has also been a lot worse as I have added back salad and meat to my diet. My stomach as a pins and needles stabbing pain all night while I try to sleep. I was pretty much living on baked potatos, sweet potatos and fruit smoothies. I guess I might have to go back to that limited diet again for awhile. I have been doing this since August (the gluten free diet) but didn't really try to get rid of everything until probably January. When the GI doc did my scope (only read if you have a tough stomach) she asked if I had followed the protocol to clean out my system first... I had, and had D for about 12 hours nonstop before the scope... anyway, she said she really couldn't complete it because she had never seen so much undigested food. Maybe that is part of my problem.... Help!

Can you think of anything you do differently on the weekends? Like drink wine/alcohol, coffee, eat something different for breakfast or even eat later at night? I go through a similar cycle of bloating up after the weekend, but I'm pretty sure it is because I consume a lot more food and I eat later at night , which I don't do during the week. I'm working on getting rid of this bad habit!

[Heather22]

My guess is that at least 80% of Celiacs know exactly the "The Celiac Belly" is. As I read through this thread, I could relate to at least one thing in each of them!

If you have only been gluten-free for a few months, or for years and years, I would recommend looking into Digestive Enzymes and a Probiotic. I consider myself "healed", but I started to take a full spectrum enzyme before my larger meals, or a meal that is different than usual, and it has really made a world of difference. At work, I eat lunch, but then return right after to running around, bend, lifting, helping patients, etc. Pretty much everyday I was uncomfortable after my lunch, so I started taking the enzymes. I would say, it makes me feel about 70% better (which makes the afternoon so much more pleasant). It's worth looking into if you have similar problems.

I can also relate to the weekend thing, when as soon as you eat some weekend food (which usually isn't all that out of the ordinary), you have problems. I used to have this all the time, but have gotten a good hold on it. I usually have a crazy meal on Friday night, and then stick to whats normal for the rest of the weekend. My crazy meal is usually something like homemade gluten-free pizza. Wild, huh?

To ensure the health of your gut, especially if you have D, a probiotic is a must. Highly recommend looking into it! We can't avoid the Celiac belly, but we can take steps to calm it down. ; )

Heather xxx

[emcmaster]

I was recently dx with celiac by a biopsy in dec'07. I have been gluten free for a couple of months now, working out and eating health and I still am dealing with the stomach issue. I have a weight problem from gluten and was hoping things would straighten out now. I have always had a constipation/belly problem and things are not getting to much better. I can wake up in the morning sometimes and may belly is noticeable flatter, but throughout the day it gets bigger and bigger. I was on zelnorm for IBS and that worked beautifully, but like all other good medications, they took it off the market and now I am stuck again. The more fiber I eat the worse I am. It is nice to hear on here that others have the same problem.

Thanks

Jenn

Jenn,

If you are C, you will definitely bloat. I find that if I don't go every.single.day, I bloat immediately. Also, I was on Zelnorm as well and loved it, so my doctor put me on Amitiza, which I also love. That and lots of strong coffee every morning make my life much easier.

Hope this helps!

Elizabeth

[kayavara]

I've known that I was Celiac for 5 days now and was soooo proud to have lost some of the bloat ...but it's back this afternoon.It seems to come and go at times.Maybe it's way too soon to say bye-bye for good.?? I am following the diet 100% though.....tired of looking/feeling pregnant.

Kay

[Guest hightop girl]

I can't figure out much that I do differently on the weekend. My usual week day looks like this...

4:30- get up

have yucky vegetable shake the doc prescribed to calm intestinal track (not tasty- I just started this last week)

5:30 - ride bike 10 miles to work

7:30 work

have one boiled egg and maybe some rice crackers or sweet potato chips (I am trying to cut those out)

9:30- 6 rice crackers and 1t peanut butter

11:00- salad with salmon or boiled egg or a protein shake, 6 rice crackers or sweet potato chips

1:00- same as 9:30

3:00 ride 10 miles home then run 8 miles or swim

7:00 dinner- salad with fish, sweet potato chips or maybe a treat of real mashed potatoes or a protein shake

The weekend looks much the same meal-wise except I don't get up so early- Maybe 7:00 instead, so the shake and egg happen at the same time. Exercise looks different because instead of breaking it up so much, I do a long run (15-20 miles) and swim on one day and a long bike (50 miles+) and then run on the other day. The big bloat usually starts Saturday afternoon. We usually go to dinner once during the week (last night we went to Chili's) and then on Friday night. My weight is also steadily climbing right now and I can't get a grip on it. I don't eat gluten free flour products ( with the exception of the rice crackers). At first, I lost about 25 lbs. Since mid February I have gained about 10 back. The first 5 could have been from adding swimming to my workouts. This last 5 seems to happen every Monday... I work to take off the 5 pound bloat then it is back. It is also cyclical. I gained about 2.5 last month and then 2.5 this month with my cycle. I am pretty worried this isn't going to stop. I did read an old strand about this celiac belly and the people recommended Digestive Advantage IBS and BCQ capsules from Vital Nutrients. I am going to give them a try as well as Colonix (my doc recommended) I am taking B12 injections weekly now so maybe that will help stablize my body. I am also going to try to cut out the extra carbs in the rice crackers, but that is easier said than done.

[CaraLouise]

I don't know, but maybe you are not getting enough to eat and so your body is retaliating by the end of the week. I might try umping my food portions for a week and seeing if that might help.

[Emily Elizabeth]

I can't figure out much that I do differently on the weekend. My usual week day looks like this...

4:30- get up

have yucky vegetable shake the doc prescribed to calm intestinal track (not tasty- I just started this last week)

5:30 - ride bike 10 miles to work

7:30 work

have one boiled egg and maybe some rice crackers or sweet potato chips (I am trying to cut those out)

9:30- 6 rice crackers and 1t peanut butter

11:00- salad with salmon or boiled egg or a protein shake, 6 rice crackers or sweet potato chips

1:00- same as 9:30

3:00 ride 10 miles home then run 8 miles or swim

7:00 dinner- salad with fish, sweet potato chips or maybe a treat of real mashed potatoes or a protein shake

It seems like you're eating healthy, the only thing that I would suggest is that you not eat after about 5pm at the latest. Though it doesn't explain the weekend bloat, it could help with the weight gain. I was eating very healthy and gaining weight and bloating horribly until I stopped eating after 5pm (I also get up at 4:30am). I figured since I was starting my day about 2-3 hours before most people, I should eat my dinner 2-3 hours before most people as well. I haven't even been eating as healthy and the bloating has gone away and I have gone back to my regular weight. You might also try, like you said, cutting out the rice crackers. Maybe you could replace them with rice or even more cooked veggies. Anyway, I hope this is helpful and you start feeling better!

[Nancym]

It has taken about 2 years for me to get rid of my "wheat belly". I also eliminated dairy too, and all other grains, so it might have many things contributing to the bloat.

[SunnyDyRain]

You're welcome! I can definitely sympathize! My husband and I went on a cruise and it was so depressing to have to put on a nice formal dress at night and have a pregnant belly sticking out. My chest has even decreased in size since I went gluten free (not sure why, haven't lost weight) so that just adds insult to injury!

That is my biggest issue! I go on a diet... I loose my boobs! Not my tummy, not my butt... my boobs! The only fat on my body that is an asset!

My body just wants to be one big tummy.

[andarah]

Would you include a belly that is not that hard, but not fat (just round) and it doesn't get bigger through the day as a celiac belly?

We have always referred to DD's belly as her `toddler belly' that hasn't gone away. But, at 6 1/2, it should be gone by now. It's not remotely fat, is fairly hard, but not hard like a contraction in labor. Just very firm.

Is this what you are referring to?

We are trying to figure out if she has celiac and we've just started her on gluten-fee.

[Emily Elizabeth]

I'm not too sure. I do remember always having a very round belly when I was young (always there). It bothered me and my mom just said that it was normal for kids. Now that I think about it, I wonder if it was due to celiac. I was very thin, but had a bigger belly. I remember laying down in the tub and my belly would stick out of the water like a mountain!

I would recommend going to a doctor to have a blood test done on your daughter before putting her on a gluten free diet. If she has been gluten free when she gets the test done it will not show positive results. It is a life long change to be gluten free and I know that the only way I can do this is by knowing that I was officially diagnosed. Some don't need the diagnosis, but I know I sure did.

Good luck!

Emily

Would you include a belly that is not that hard, but not fat (just round) and it doesn't get bigger through the day as a celiac belly?

We have always referred to DD's belly as her `toddler belly' that hasn't gone away. But, at 6 1/2, it should be gone by now. It's not remotely fat, is fairly hard, but not hard like a contraction in labor. Just very firm.

Is this what you are referring to?

We are trying to figure out if she has celiac and we've just started her on gluten-fee.

[pewpewlasers]

I'm glad to know I am not alone.

I just started my gluten free diet a couple weeks ago and I am crossing my fingers one day my tummy will be gone. Some days I look like I could be pregnant and everyday I see it and my self esteem gets lower and lower. .

Let me know if you find something that works! Good luck.

[darlindeb25]

My dad had the celiac belly, maybe I did too, but I was big everywhere, so it was hard to tell. Before going gluten-free, he got very ill. He went from a strapping man at over 250# down to 139#. I would have much prefered he kept the celiac belly. Now, after a little over 3 yrs of gluten-free (will be 4 yrs in Nov.) he is back up to around 170#. He and my sister both, at their sickest, lost so much weight...I on the other hand, at my sickest, weighed more than I ever had.

This disease does not care who it picks on, or how it effects them. Everyone is different, even though it's the same disease.

Good luck!

[munchkinette]

This thread is really interesting to me. I have the same problem. Even when I've gone a while without getting glutened, I still have a big stomach by the end of the day. It's getting better, but it's not gone. Here's what I've done so far:

1. No gluten. (duh)

2. Digestive enzymes- I get really gassy when I eat certain raw vegies, and sometimes with gluten free bread like products. This has helped.

3. Probiotics, in pill form. I take Theralac. I can't really do yogurt. I wish I'd found these years ago, because I'm regular without laxatives now.

4. Ab work. I know, we've all tried it before, but now I have a trainer. I was trying to explain to him that I had weak abs from the gluten, because my guts pressed on my abs for so many years. He didn't understand it for maybe 3 weeks. Then, we were doing some lower ab exercises and I said they were too hard on my back, so he picked the next easiest thing for me. I said that was still to hard. He was like, "Oh WOW. The next easiest is borderline physical therapy, with some assistive device."

He finally got it. He also made me realize that I have a set of abs lower than I thought. I never even knew I had them. Since then I've been sucking them in when I stand. It helps my back and makes my belly flatter. I think most normal people do this and don't realize it, except for all of us. Anyway, I've been working with him for 4 weeks now, and I have the flattest belly of my life! Granted, it's still bigger than everyone else's belly, but it's improving, slowly. I basically had "pregnant woman abs" for 25 years, so it may take a while.

[RissaRoo]

Wow, it was good to read these posts because my tummy has been driving me nuts! I used to have such a great flat tummy, now I start out normal in the morning and some days by bedtime it's like I'm 6 month pg! For me, I know that lactose is a culprit and I can pretty much plan on serious bloating if I have too much dairy (a tiny bit a couple of times a week won't cause too much distress, but more than that isn't good!). If I get glutened, forget it...it's fat for a month! I keep hoping that I can do a lot of sit ups and make it better, but so far it's not a cure-all. It's like my tummy is inflatable! Also, I found out that being prepetually bloated can cause your lower ribs to pop out a bit, which is a little uncomfortable. I wondered why that was happening! Seriously, those lower floating ribs can be moved out of alignment due to bloat. This I learned from a pulmenologist, btw, rather than a GI doc.

[samcarter]

Oh wow...I'm glad I found this thread. I am still waiting for my blood test results, but the way munchkinette described the ab muscles is making a big lightbulb go off over my head. Even as a child I had a pooched-out lower abdomen. My mom first blamed it on me being chubby. When I was a senior in high school i went on a crash diet (fruits and veggies only) to lose weight before college...still had the abdomen. She said it was a) because I'd had abdominal surgery at 16, and "All the women in my family have that stomach". I was asked by customers at my job if I was pregnant (at 15!!) because of my lower abdomen. I've never been "skinny", so I just figured I was fat.

Now I'm wondering if it is because my intestines have been pushing at those muscles all along. I know that ab exercises are sheer torture for me, and don't do much. (probably because I give up because they're so torturous). Having three large babies in the past 8 years hasn't helped things.

I have been trying my best to be gluten free the past couple of days. I noticed the other night that at the end of the day, I could actually suck my stomach in, whereas previously, by the evening I couldn't. Too bloated or whatnot.

[Salem]

oh, yes I know that belly well. I plan my outfit in the morning by what my stomach will eventually look like. I'm a size 10 in the morning and a 16 when I've eaten gluten. Several of my neighbours thought that I was preggers last year because of the belly. I could not believe it. Two months gluten-free and it's slowly getting better, I've lost a few pounds, and don't feel like loosening my belt anymore.

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.

[sickchick]

I eat 24 bil of probiotics a day and I am flat flat flat. Except when it's filled with dinner like right now lol

but it's cause I am about to burst I ate so much

be very well sweetie

[munchkinette]

Like others have said, the distension is my best measure of having been glutened.

YES. This and acne. If I wake up with a big belly and get a lot of zits by the next evening, I know I've been glutened.

[babysteps]

I can't figure out much that I do differently on the weekend. My usual week day looks like this...

4:30- get up

have yucky vegetable shake the doc prescribed to calm intestinal track (not tasty- I just started this last week)

Okay, I realize the shake is more recent than the bloating, so it isn't *the* reason, but I know my body doesn't tolerate any of those things well, not even the ones that say "gluten-free". Not sure why...

Good luck figuring everything out!

I was lucky, my celiac belly started just a few months before I self-diagnosed, and disappeared in the first week gluten-free. It does let me know if I got cc'd though! (Although for me night sweats, rls and D are even more pronounced as signs of cc)

[munchkinette]

Wow. Today I went through a huge box of clothes at my dad's house. They were almost all from college when I was 7-8 lbs lighter and running a lot. Some were from grad school, back when I was really skinny because of malabsorption. (Grad school was right before I started my diet.)

I tried them on- I can't believe how baggy they all were! Those used to be the skinny clothes I couldn't fit into. I was shocked by how they fit me. I weigh more now, and it's definitely from fat, not muscle. (I've had a lot of muscle during all those times.)

It's the belly! Or lack of it now! I wore things so loose to hide it back then. I still have a little one, especially by the end of the day, but wow. What a difference.

[sleepybeauty]

I've been reading about this. There is a book called "Going Against the Grain". The author suggests that some people can't digest any kind of grains. You might want to look into it.

[coffeeaddictfish]

I'm new to this and it was SOOOOOOO refreshing to read this post!!!! I also have the "gluten belly"... and i didn't know why in the world, prior to going gluten free, my stomach was SOOOO big.. i had to buy bigger clothes just to fit over my stomach.. and i was SOOOO depressed that it was always soooo big compared to the rest of me.. not that i'm thin.. But at least we all know that this is a common denominator among us all!!!!

I especially appreciated the point that people feel like and look like they are pregnant! I have been saying that for MONTHS.. again prior to going gluten free and not even knowing i was intolerant to gluten! So, thank you all for sharing!!!

[Lockheed]

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!!!

It was around the 3 month marker for me before I started to lose weight and really.. that's not even true. I stopped gaining weight at that point. It wasn't until I was gluten-free for a year and then seriously almost overnight the weight melted off. It happened so fast I thought I developed Diabetes or something and went running back to the doctor for metabolic tests (which everything came back normal).

On the flat tummy thing.. Lots of crunches and a prune juice a day seem to help me.. but certainly the more your glutened the worse the belly will be. But it's still something I have to work at daily.. but it could also be from the baby I had too.

And about feeling so bloated you look pregnant.. I had an ex that actually asked me to wear a looser dress to a formal dinner one time because he was afraid people would think I was knocked up. It's a good thing he's an ex..