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Chubby Tummy With Celiac

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first of all, great site as i just stumbled upon this and have read many posts with questions as well as information out there. i am sure i can keep reading stories and tales. however, i can only find a hand full of details as similar as mine. i am a single father that lives in another state. my daughter and her mother live in texas and my daughter was diagnosed with celiac disease about a year ago. i was there for the test (biopsy of the intestine) and was shown pictures as well as the doctor telling me how they know its celiac. i was distraught, however, i wanted my daughter to have the best life as she can. we enroll her in cheer-leading, softball, gymnastics, whatever activities she wants. so she is very active. we schedule routine checkups with her doctor to make sure she is on track with her gluten free diet. so now that i got that out of the way, here's my question. she is 8 years old, active, and very self conscious about herself, whether its her looks, weight, social life, family. she has a very large stomach. to the case where the kids at school make fun of her for being pregnant. we are strict with her diet, no gluten. i read that this is a side effect for celiac disease, however, is it a side effect when you are not diagnosed with it? she has been gluten free for over a year now, her belly seems like its gotten bigger since we diagnosed her. i cant get any answers from the doctors as they seem they are content with celiac as the reason for everything now. her mother and i dont see eye to eye often, however, we are both worried. please, any information or details would help. and also, thank you for the help.

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Celiac can cause different symptoms in everyone.

Did they check her vitamin levels: irons, b's, d's, etc.? If she was deficient is she supplementing?

Does she have symptoms when she is glutened like diarrhea, constipation, etc.? Bloating?

Has she been tested to see if her gluten antibodies are falling?

Some people report belly bloat with Celiac. Others don't. Some people see it as a glutening symptom - meaning they develop bloat after they get into it and it subsides later. Some people gain weight going gluten-free because they eat too many gluten-free goodies which are high in sugar and fats and carbs - and as they gi system heals it starts absorbing those bad things along with the good.

Have you tried putting her on an elimination diet for other common intolerances like dairy or soy? Some people have almost identical symptoms to those exposures as they do to gluten.

What is her diet like now? Is it highly processed (pastas, breads, etc.) or is it mostly whole foods like veggies, meats, fruits?

I know it's hard to speak for an 8 year old, but these are key questions both you and her mom need to look into, IMO.

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Have you tried eliminating dairy? Is she sneaking something at school or dance, etc? You don't live with her, maybe her mom isn't doing a very good job of gluten-free diet? Have her antibodies gone down?

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Celiac can cause different symptoms in everyone.

Did they check her vitamin levels: irons, b's, d's, etc.? If she was deficient is she supplementing?

Does she have symptoms when she is glutened like diarrhea, constipation, etc.? Bloating?

if gluten is in her diet, her stomach will cramp for 3-4 days. her stools have not always been the greatest, usually small and hard, but no diarrhea. as far as bloating, hard to tell as her stomach is always big... but no passing gas or belching.

Has she been tested to see if her gluten antibodies are falling?

she goes to the Dr. regularly and since im out of state, its her mother that often takes her. i come into town every other weekend. but she often tells me that her body is gluten free.

Some people report belly bloat with Celiac. Others don't. Some people see it as a glutening symptom - meaning they develop bloat after they get into it and it subsides later. Some people gain weight going gluten-free because they eat too many gluten-free goodies which are high in sugar and fats and carbs - and as they gi system heals it starts absorbing those bad things along with the good.

Have you tried putting her on an elimination diet for other common intolerances like dairy or soy? Some people have almost identical symptoms to those exposures as they do to gluten.

i know she does dairy as far as milk and cheese. gluten free cereal in the morning with milk, nachos with melted cheese.. sandwhiches with shredded cheese. i will keep an eye on this.

What is her diet like now? Is it highly processed (pastas, breads, etc.) or is it mostly whole foods like veggies, meats, fruits?

yes, we have a store that is gluten free, with pasta and breads... so her mother cooks often with the the materials from the store as almost everything in the house is gluten free. we hardly give her pasty, sweets, etc, but the wheat replacement such as bread is what she consumes the most.

I know it's hard to speak for an 8 year old, but these are key questions both you and her mom need to look into, IMO.

Thank you for the quick response... i hate that i am not in town as often as i want... but the more and more i think about it, i am starting to think its her diet/dairy consumption. however, im not going to just be set on this. please if anyone else have any ideas, i would greatly appreciate the opinions and thoughts... hell, even theories.

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Have you tried eliminating dairy? Is she sneaking something at school or dance, etc? You don't live with her, maybe her mom isn't doing a very good job of gluten-free diet? Have her antibodies gone down?

can you please explain to me what the dairy product in her life can do to her? i only know of lactose intolerance... is this what you are trying to point to? or does one with celiac disease have a different immunity to dairy products as i dont think i have read anything else about this?

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Of course, I don't know her mom, but, If I were you, I would request a copy of her recent medical records from the doctor. See for yourself if they have retested her blood to see if she is really compliant.

Dairy can cause bloating and gas but it sounds like her mom feeds her alot of dairy. Can you get her to try to not eat dairy for a few weeks to see if it will help?

You posted while I was typing. Celiac damages the part that digests the lactose. Some people can get the ability to digest milk back but some don't. Lactose intolerance is common in people who are not Celiac, also.

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Like Kareng said, a lot of Celiacs have issue with milk products - lactose from the damaged villi in the intestines and some have casein issues (protein in milk). It's one of those things Celiacs should try going without at least once to see if it makes a difference in how they feel. Soy covers all soy products - the whole bean to sauce to food additives. Soy can be an intolerance.

You should find out if she's being tested for gluten antibodies. If her antibodies are in the normal range, and she doesn't report feeling glutened at the same time her belly is big, then the belly is probably fat not bloat??? Though stranger things have happened.

It's difficult to adjust eating and cooking for the gluten-free diet, as I'm sure you've experienced. Sometimes the diet takes a bit of massaging, especially if you are used to a processed foods diet.

What is sometimes hard to accept is that there are large numbers of us who must be extra-vigilant about our diets - eating very little processed food. Not just because the risk of gluten is lower, but because our bodies NEED it. Heck, I'm grown and I'm just learning that. And I didn't have a very processed diet before gluten-free. I had a better diet than 80% of the people I knew. Now I have an even "cleaner" diet...but it took a year.

So if you want theories, here they are...

1) She isn' gluten free. Maybe getting it from cc. It isn't necessarily a case of her cheating or a parent being negligent. Gluten is everywhere, even when you try to avoid it. Easy to eliminate this theory, get her antibodies tested.

2) She has an alternative intolerance. Dairy, soy, corn are the most likely culprits. Have her go a few weeks (preferably month, but you know... kids) without each of those and see what happens.

3) She's eating too many processed foods and needs a diet revamp. This is unfortunately the most difficult, IMO, because kids are kids...and she isn't the cook. The Cook is going to have to relearn cooking. Again. And cooks (even patient Moms) get tired of cooking for kids who turn their noses up and have lots of food work-arounds, get my drift?? Then again, your daughter may be the easiest kid on the planet to cook for. If she is, I'll trade you a 10 year old boy.

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Welcome!

PricklyPear is spot on - I agree with each point.

Does the bloating get better/worse, bigger/smaller on different days or time of day? Is the rest of her body much smaller by proportion? If so, perhaps she is still getting gluten somewhere. Once gluten is removed many with Celiac Disease become extremely sensitive to minute amounts of gluten. Does she eat gluten free menu items at restaurants, school lunch - these items have potential of being cross contaminated when prepared in a regular kitchen. Do you and her mother have gluten-free kitchens or designated gluten-free toaster/cookware/prep area? Are all of her personal care items gluten-free? Are their pets - if so are their food/treats gluten-free? Does she eat snacks regularly at a friend's house or during group activities?

If she is already avoiding all possible gluten exposure, do look into other food intolerance. Top of list is Dairy, Grains (corn is a common intolerance) and Legumes (soy is a another common intolerance).

Good luck to you, your daughter and her mother - I hope you find an answer very soon.

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Like Kareng said, a lot of Celiacs have issue with milk products - lactose from the damaged villi in the intestines and some have casein issues (protein in milk). It's one of those things Celiacs should try going without at least once to see if it makes a difference in how they feel. Soy covers all soy products - the whole bean to sauce to food additives. Soy can be an intolerance.

You should find out if she's being tested for gluten antibodies. If her antibodies are in the normal range, and she doesn't report feeling glutened at the same time her belly is big, then the belly is probably fat not bloat??? Though stranger things have happened.

It's difficult to adjust eating and cooking for the gluten-free diet, as I'm sure you've experienced. Sometimes the diet takes a bit of massaging, especially if you are used to a processed foods diet.

lol, like i said... her mother and i dont see eye to eye on 99% of the things. so its going to be an issue on me saying that "hey, take the dairy out, youre hurting our daughter" even if i say it in the sincerest way with explanation... thats the way she does things however stupid as it be. i only look for her health so i will talk to her tonight. thanks for your input as well as Karengs opinion. i dont know her diet that well, only when shes around me and what she tells me. so this will start raising my eyebrows as well. i honestly hope its just her being chubby and not her mom sticking to a healthy diet.

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lol, like i said... her mother and i dont see eye to eye on 99% of the things. so its going to be an issue on me saying that "hey, take the dairy out, youre hurting our daughter" even if i say it in the sincerest way with explanation... thats the way she does things however stupid as it be. i only look for her health so i will talk to her tonight. thanks for your input as well as Karengs opinion. i dont know her diet that well, only when shes around me and what she tells me. so this will start raising my eyebrows as well. i honestly hope its just her being chubby and not her mom sticking to a healthy diet.

Okay, I do have some experience in the split household thing. But not regarding Celiac....

If the interest in the cause of the belly is mutual... then it's a good start.

You MUST find a way to present this in a NEUTRAL way...as in a medical article, or a book about Celiac disease.

You might (and this may already be enough to make Mom flip) start with letting Mom know you're looking into your daughter's concern about her belly and you need to see if any follow-up antibody tests (blood work) has been done. Tell her (as I assume she knows) it is very easy for kids to get into gluten at school or other activities, even if they try religiously to avoid it... she is 8 after all, and antibody tests are often used for kids to ensure they are not getting inadvertently glutened. You aren't lying, and you are being truthful. And I assume Mom does want her to be gluten-free because that is, after all, the best for her daughter. Don't assume or imply the worst.

Link about milk protein reactions in Celiacs: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

Link about lactose intolerance in Celiacs: http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=complications

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2 things. Like everyone said, get a recent antibody test. After a year, they should be normal or at least fallen a great deal. Our GI told us about a sad divorce situation where the dad would let the child eat whatever at his house so he didn't have to be the bad guy or deal with "the hassle". Not sure which. In that case, you just see a lawyer. But you'd have to have a doctor say she was being non compliant. If they are normal and the mom is trying her best, have her thyroid tested. Low thyroid goes hand in hand with celiac. My dd has has low thyroid since 7. A big sign of thyroid issues in children is not their weight as much as height. My dd didn't grow for a year. It can wreck havik on metabolism.

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i talked to the mother this morning and i wanted to update on some more info. like i said, we only discuss things with our daughter... but i made it an issue to find out as much as i can. she does have dairy in her life and on a regular basis. so i said i stumbled on this site and had several people tell me about celiac and lactose intolerance go hand in hand. she was amazed and i think we are on agreement to cut it out of her diet for a while. i also stated that she doesnt eat a lot of carbs and that her diet is watched. she does get the antibody test and she is actually going in to get another check up on the 17th. unfortunately, i am leaving on the 17th morning to go back to work, however, i am trying to extend my flight to the evening so that i can make the appointment. as far as answering some other questions, her body is normal height and weight. her arms and legs are normal. its just her stomach that is overly large. she is active, such as exercise and is actually quite athletic in sports. She lives in a small town where everyone knows everyone, kind of freakish actually because whenever we go to the local wal-mart, i must get pulled over on my cart 10x just so people stop and talk to her. in saying that, they all know she is gluten free and the school is aware of her being gluten free. they actually have a special menu at school for her, but we turned it down and just giver her lunch ourselves because of the cross contamination issue and we just want to be safe. we are usually aware of the gluten in her diet as we will find out soon as she has stomach cramps and in constant pain for 3-4 days where she just wants to lay in bed in pain. tears my heart. we are aware of the dog food as well, and changed that up so that the house is totally gluten free. like i said, we are going the route of removing the dairy in her life and i will keep you updated as i love this information on the site and the ongoing knowledge will only help our cause. thank you again.

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That's good. Sounds like the mom listened to your suggestion.

If you go to the doctor, have a list of questions. Ask for copies of her previous Celiac antibody tests. Ask that they send you any new blood work they are taking that day when they get the results. If you haven't recieved them in 2 weeks, call to see if they forgot to send them. Sometimes, when they send the blood to the lab, they can mark for the lab to send you a copy.

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Great result and plan Dad!

Given your answers with regard to her body type, exercise, etc. - it certainly sounds like additional food intolerance. Removing dairy is a great place to start.

Not sure it was mentioned before -- if you find she is intolerant of something, it doesn't mean she will be intolerant for life. Trial any removed items at six month or one year intervals.

Good luck :)

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