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Emily Elizabeth

The Celiac Belly

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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.

I am curious if you have tried probiotics to eliminate bad bacteria from your gut. I have just started and notice foul BM in the morning and hope this means that the probiotics are working!

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Finally feeling better! My stomach is almost back to normal.

I was feeling better after cutting way back on the sugar and the citrus/acidic fruits, and also cutting out red wine and craisins and drinking only one cup of coffee a day instead of two. Then two days ago, I cut out coffee completely (tea instead) and I didn't have to run to the bathroom in the morning (or the rest of the day pretty much!) and my belly was half it's regular distention size in the afternoon. I was actually able to wear a pair of pants yesterday that I haven't worn in almost two months! I drank my coffee black (not flavored - just Folger's classic) so I know it wasn't gluten, just somehow aggravating.

Thank you everyone for your replies! It's so nice to be able to talk with people who understand what you are going through.

Emily

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That's great to hear. Over the past 2 years-ish I've put on 30lbs. I am extremely active and do my hard workout in the morning (running/weights) when I feel ok and a light swim at night to losen up. But man throwing on that swimsuit in the evening is so depressing. I've had many clients congratulate me on expecting a child.

I have also not been able to loose any weight or build muscle mass despite my extremely balanced diet and super active lifestyle. I think that this issue is causing problems with my bodies absorption of nutrients. I'm just starting to cut gluten out and minimizing my dairy to a yougurt a day. Thanks for this post it gives me a light at the end of the tunnel.

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I think there are 2 different sorts of belly issues going on here.

One is from eating whatever doesn't agree with you and is caused by gas and such.

The other one is the tendency to put on fat just in that area.

I think the fat one is a bit harder to solve and more dangerous to your overall health (that fat middle has been related to an increase in heart attacks and i think stroke)

Sadly I have both kinds... I've pretty much solved the gassy kind (except when I eat "bad" stuff, which I do occasionally... for me most greasy foods and sugars which i very rarely use) but to get the fat out of your belly area is hard. I'm certainly not fat either. I'm 5'7" and 126 lbs. But all my weight goes to my belly. I'm a bit older so I think its a product of aging as well, grrrrr.

In this months Self magazine (or maybe this months "Health") they have an article about short power walks.. I'm a great walker but I work for a living and can't take an hour or two out from work to go walking, but I can take 15 minutes here and there and this article is about short 15 minute walks.. there are 3 types.. up hills, (which we have a big one in our neighborhood) varying slow and fast walking and then, slow, fast and jog. I hope its on their web site for those of you that are interested. I'm going to do this. I walk a mile or two each day right now with my dog, but she is older and they are very leisurely walks!

If anyone else is interested in trying this with me let me know. We can check out the web site and if its not there I can post the schedule here if you like....

Susan

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Hee hee mine is a pregnant belly. I gained 30lbs but almost none of it is in my belly. I gain all over so most people including myself don't notice it happening. I wake up in the am with a mostly flat tummy (- my very tiny roll) and by the end of the day I seriously look and feel pregnant. It's crazy! My boyfriend and I make up baby names joking because it's so odd.

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Guest hightop girl

Mine seems to grow as the day goes on. Of course as the day goes on, I have had FOOD. Since I am still new to this, I have been struggling to figure out what causes the gurgling and gas that seems to build throughout the day. Things that I thought were a problem are not, and things that I thought were ok are killing me. I thought my cereal was ok (it really only said "wheat free") I cut that out, and was a little better yesterday. White potatos seem soothing, until the "gas baby" starts to kick. My biggest problem is probably soda. I love Diet Coke... it does not love me. I am down to about 1 a day in the evening (what else am I going to mix with my rum) . Yesterday, I had one in the afternoon because I was anxious and depressed and just wanted something. Immediate gas baby. My waistt expanded and stomach began the gurgling. I also have a pretty small layer of fat, that I think may go away over time, as I get better at recognizing gluten. It seems to be a defense mechanism. Of course at 45, it just may be the way I am going to be. I have found that exercise in the afternoon does help (but I try to run by ...LOL) I would like to see my hip bones in the afternoon again!

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It's difficult to cut out the few things that we still enjoy that are gluten free. I held on to coffee and red wine for a very long time. It's so difficult to figure out what is causing your stomach to be upset sometimes. I wish we had a specific weekly menu that cuts out all known allergens (which would probably mean we couldn't eat anything) and tells us exactly what to eat/drink and when. This would be like a cleansing/healing period. For example, you eat and drink these very specific things until your stomach calms down and is healed and you can add things back in slowly. When pigs fly right?

Mine seems to grow as the day goes on. Of course as the day goes on, I have had FOOD. Since I am still new to this, I have been struggling to figure out what causes the gurgling and gas that seems to build throughout the day. Things that I thought were a problem are not, and things that I thought were ok are killing me. I thought my cereal was ok (it really only said "wheat free") I cut that out, and was a little better yesterday. White potatos seem soothing, until the "gas baby" starts to kick. My biggest problem is probably soda. I love Diet Coke... it does not love me. I am down to about 1 a day in the evening (what else am I going to mix with my rum) . Yesterday, I had one in the afternoon because I was anxious and depressed and just wanted something. Immediate gas baby. My waistt expanded and stomach began the gurgling. I also have a pretty small layer of fat, that I think may go away over time, as I get better at recognizing gluten. It seems to be a defense mechanism. Of course at 45, it just may be the way I am going to be. I have found that exercise in the afternoon does help (but I try to run by ...LOL) I would like to see my hip bones in the afternoon again!

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That's great to hear. Over the past 2 years-ish I've put on 30lbs. I am extremely active and do my hard workout in the morning (running/weights) when I feel ok and a light swim at night to losen up. But man throwing on that swimsuit in the evening is so depressing. I've had many clients congratulate me on expecting a child.

I have also not been able to loose any weight or build muscle mass despite my extremely balanced diet and super active lifestyle. I think that this issue is causing problems with my bodies absorption of nutrients. I'm just starting to cut gluten out and minimizing my dairy to a yougurt a day. Thanks for this post it gives me a light at the end of the tunnel.

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!

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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

Emily, i was just diagnosed........a few days ago in fact. In retrospect, I've had the same problem. I havn't been on a gluten free diet......in fact......eaten lots of gluten rich food, in paraticular: Pasta.

Have you had the rash on elbow's, hands...etc? I've read thats a possibility too. My "level" was 140 and it should have been less then 20. A little nervous about dealing with this and some of the consiquent differential diagnosis that could result from celiac disease.......its depressing! How are you coping?

Art

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Welcome to the forum. This place is definitely a life saver. You will most likely find that most of the people around you will not really understand what you are going through, so this is a great place to talk and get advice from people who do. I had a rash on my right leg and on my ankles when I was at my worst. I have to admit, I cried a lot when I was first diagnosed. I was of course happy to finally have an answer as to what was wrong with me, and to find out that it didn't involve drugs or serious surgery, but it was depressing all the same. I think most of us go through a sort of morning period where we morn the loss of our former lifestyle. It is most difficult when you come to the realization that you can never eat certain things again. It was very difficult to handle, at least for me. I have to admit that coping was not easy. Even drinking wine didn't make me feel better or help me to relax (though I continued to try it!). I always have loved baking (which was even more of a blow when I found out that I couldn't bake with flour anymore) so now have taken up the hobby/challenge of baking things as good or better than what I used to make. I have been able to copy some of my favorite dishes at restaurants and my husband has even said he likes my version better than the restaurant. So that has been how I have coped with it. I still get upset, and I'm 10 months out from diagnosis, but I am much better. I also try to do things that relax me and help me to clear my head. Also, I try to focus on other people and not so much on myself! Doing something for someone else and seeing the smile on their face can be extremely uplifting and certainly can get your mind off of yourself and what you are going through. Dealing with this is certainly a test of character. I wish you the best and hope to hear that you are coping well and feeling better soon!

Emily, i was just diagnosed........a few days ago in fact. In retrospect, I've had the same problem. I havn't been on a gluten free diet......in fact......eaten lots of gluten rich food, in paraticular: Pasta.

Have you had the rash on elbow's, hands...etc? I've read thats a possibility too. My "level" was 140 and it should have been less then 20. A little nervous about dealing with this and some of the consiquent differential diagnosis that could result from celiac disease.......its depressing! How are you coping?

Art

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Finally feeling better! My stomach is almost back to normal.

I was feeling better after cutting way back on the sugar and the citrus/acidic fruits, and also cutting out red wine and craisins and drinking only one cup of coffee a day instead of two. Then two days ago, I cut out coffee completely (tea instead) and I didn't have to run to the bathroom in the morning (or the rest of the day pretty much!) and my belly was half it's regular distention size in the afternoon. I was actually able to wear a pair of pants yesterday that I haven't worn in almost two months! I drank my coffee black (not flavored - just Folger's classic) so I know it wasn't gluten, just somehow aggravating.

Thank you everyone for your replies! It's so nice to be able to talk with people who understand what you are going through.

Emily

Hopefully when your tummy heals you can have coffee again. Sorry for your pain and discomfort, I feel it with you like so many others. karen

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I was very very happy to find this post! I had no idea my hip bones were supposed to show! Wow so I've only been gluten free for a short time but today I kept looking at myself in the mirror thinking somethings different, what's different? Suddenly I realized omg I have hip bones! I haven't seen hip bones since, probably 12 years ago. Glad to see it's NOT just fat :) yahoo.

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Hopefully when your tummy heals you can have coffee again. Sorry for your pain and discomfort, I feel it with you like so many others. karen

Thanks! Yeah, I'm hopeful I can have it again. I hadn't had red wine for a long time and I tried a small amount last night and seem to be okay. Phew! I was worried that was out for good. So hopefully coffee can come back into the diet too!

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I was very very happy to find this post! I had no idea my hip bones were supposed to show! Wow so I've only been gluten free for a short time but today I kept looking at myself in the mirror thinking somethings different, what's different? Suddenly I realized omg I have hip bones! I haven't seen hip bones since, probably 12 years ago. Glad to see it's NOT just fat :) yahoo.

Congratulations! That's very exciting! It's great when we can have good things happen (like seeing our hip bones again) considering how much some of us feel we have to give up with this diet. It makes it all worth it!

Emily

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So the belly is a CELIAC thing? Got it! I have been gluten-free for three an a half years and STILL get the belly. However, I also have LPR and can not consume caffeine, chocolate, or tomatoey things so what is left after all that but some fatty foods which since I do not have a gallbladder, I can not process it correctly. So I just figured it was FAT. Some is I am sure. But some is just like you all said, overnight bloating. I will talk to people and say "Do you ever have it where you feel your belly suddenly on your lap?! And it wasn't there before?" I have one friend that said, "Mine is always on my belly." Laughingly, of course. But seriously, I could NOT get it! My tummy would be "overweight" but not like this beach ball all bouncy and firm like, in the morning. Then at night, it was like sticking out so far I couldn't stand it. Right now, I feel it on my lap and this morning, it wasn't there! Weird. Thanks for bringing this up. Lots of suggestions to try cuz this has been driving me MAD! :)

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Guest hightop girl
So the belly is a CELIAC thing? Got it! I have been gluten-free for three an a half years and STILL get the belly. However, I also have LPR and can not consume caffeine, chocolate, or tomatoey things so what is left after all that but some fatty foods which since I do not have a gallbladder, I can not process it correctly. So I just figured it was FAT. Some is I am sure. But some is just like you all said, overnight bloating. I will talk to people and say "Do you ever have it where you feel your belly suddenly on your lap?! And it wasn't there before?" I have one friend that said, "Mine is always on my belly." Laughingly, of course. But seriously, I could NOT get it! My tummy would be "overweight" but not like this beach ball all bouncy and firm like, in the morning. Then at night, it was like sticking out so far I couldn't stand it. Right now, I feel it on my lap and this morning, it wasn't there! Weird. Thanks for bringing this up. Lots of suggestions to try cuz this has been driving me MAD! :)

I have a couple of odd questions because I am too new to this to know anything.

1) Do you all take extra fiber? I eat lots of vegatables and fruit (although I am cutting the fruit way back- I think the sugar is part of my problem) but I do not eat any gluten free bread, so I don't get any grains. do you think that might help "move stuff along"? If you do, what is a "safe" fiber? Is adding flax enough?

2)Is your "celiac baby" bigger after exercise? I bloat through the day, with the max after I run.

Well I woke up with hip bones this morning... I might take a picture because they will be gone be afternoon.

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I have a couple of odd questions because I am too new to this to know anything.

1) Do you all take extra fiber? I eat lots of vegatables and fruit (although I am cutting the fruit way back- I think the sugar is part of my problem) but I do not eat any gluten free bread, so I don't get any grains. do you think that might help "move stuff along"? If you do, what is a "safe" fiber? Is adding flax enough?

2)Is your "celiac baby" bigger after exercise? I bloat through the day, with the max after I run.

Well I woke up with hip bones this morning... I might take a picture because they will be gone be afternoon.

1) No, but I should take in extra fiber. My diet is more limited than just the gluten free diet - however I am stuck between a rock and a hard place because I suffer with many other gastric issues - overgrowth bacteria, GERD, LPR, and whenever I eat anything high in fiber, ultimately that leads to more gas which is more bloating and more pain (really. pain.) I can't take fiber supplements usually for this very reason. It creates too much gas and pressure and bloating. Even though moving things along will help with one thing, it causes another.

2) My bloating is most definitely worse after exercise. But I also have a connective tissue disease that they believe is early lupus (3 out of 5 tests are positive so far.) at the moment so that causes some swelling anyway after exercise. Hard to tell which is which on what's causing what.

I took a laxative earlier to try and move things along and it did but then left me gassy and bloated so I am right back where I started. I am not new to the gluten-free diet, but certainly to trying to find a way to lose weight being gluten-free and also fighting bloating and constipation and gassiness. Wow, spell checker said that is right. :) Anyway, good luck! :) There's got to be an answer for all of us. Just a matter of finding what works I guess.

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Guest hightop girl

Ok... I did not eat any fruit today. I love fruit especially dried dates. They have been sort of a treat to me, but after reading the candida diet and symptoms, I thought maybe I could cut back. A doctor put me on the diet a few years ago, but when my husband was diagnosed with cancer (he has been cancer free for a year) I ate all the sugar and salt that I could find. Today is the first time in over a year I didn't bloat all afternoon. It was a little dull (food wise) but hey... we eat to live instead of living to eat these days.

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1) Do you all take extra fiber? If you do, what is a "safe" fiber? Is adding flax enough?

In addition to veggies and flax bread, I like eating Bob's Red Mill Mighty Tasty Gluten Free Hot Cereal for added fiber in my diet (Yes, that is actually the name!). I add a little salt (really makes a difference) and some cut up fruit (banana/strawberries/blueberries) and sometimes some nuts like toasted pecans or sliced almonds. It has 4g of fiber in just 1/4 cup (uncooked). I add triple the amt of water (3/4 cup water to 1/4 cup cereal) and put it in the microwave on the "oatmeal" setting and it comes out great!

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My gold standard for understanding I have been poisoned is my "gut reaction." When I first started going gluten-free after two years of low carbs as well, my tummy just disapeared one night. I was shocked, my stomach just dropped away from my rib cage. And lo and behold in the morning: abs!

I associate the bloating with the idea that any inflammation in the small intestine is a problem. But remember to mulitply it by 26 feet of intestine! That's why it can go up and down so suddenly.

I would have to guess most those guys with beer guts are having the same problems.

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Hi Everyone,

I just registered today, because I'm being tested for Celiac. I have a good friend who has Celiac, so I know a great deal already.

I've noticed over the past few months that I would occasionally be extremely bloated (look 6 months pregnant). I also noticed that it would be on days when I consumed a lot of wheat products. But the bloating only happens at night, and I'm fine in the morning. Is that type of bloating typical with celiac?!? If so, why is it happening only late in the day and not all the time? I eat wheat products throughout the entire day.

Thanks for the info.

Melissa

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I'm almost one year gluten-free and still have this bloating issue. It got worse initially after going gluten-free. My sense is that my immune system started waking up after being overwhelmed for so long with gluten. It is better now but still an issue. I was overweight and have dropped a lot just going gluten-free. Now I am cutting carbs due to ongoing other issues and malabsorption and expect to lose more weight.

I figured this was a weight issue but now I am not so sure.

Also, I think we need to give the diet 1-2 years to work since as adults the healing process takes that long.

It would be wonderful to have this resolved!

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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

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Jenn, it may take a bit longer to see some improvement at least it sure has for me. I lost quite a bit of weight at the 5-7 month point, while still eating carbs a lot, just substituting gluten-free ones. I was milk free as well (until just recently adding in small amounts). Now after cutting carbs (especially sugar) due to other issues, I am starting to lose again.

Also to everyone else on this thread: Be sure you ask for your levels of malabsorption to be thoroughly checked. I am gluten-free almost a year, but just found out I am very very low in many things including vitamins, minerals and amino acids, some of which I was substantially supplementing all the last year.

I also found out I am not digesting--lacking enzymes for proteins, fats and carbs. I had been taking pancreatic enzymes but these were increased and others were added.

My guess is if we are not digesting and not absorbing--we'd bloat for sure, right?

Perhaps those of you who are younger may be recovering more quickly than I am; also I am double DQ2 which I found is associated with more damage and slower healing. So I am hoping some of these issues may resolve in another year or so.

Finally one other idea: I have read that celiacs are prone to other gut infections, including parasites. There are ways to test for these and then you can treat these infections. I discovered to my horror that I did have some worms by eating a lot of raw garlic for a few days. So I used a product called humaworm. Also many people use probiotics which help. I recently found one that I tolerate, so have been using it to make my own goat milk yogurt.

Hope we can all find some answers!

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