Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Distended Belly- Need Help Please

suziq0805

Recommended Posts

suziq0805 Enthusiast
suziq0805
Posted

So I've been posting a lot today, but hopefully someone has some insight that could help me on this topic. I'm a first time mom and new to this whole celiac thing and I'm not sure what to do. My 13 month old has shown symptoms of issues with gluten/wheat since we introduced rice cereal and oatmeal. He vomits severely after eating wheat/gluten containing foods. Since he was a few weeks old he has had a larger belly. Everyone kept saying it would go away after he began crawling/walking. Well he's been crawling for a few months and walking for 6 weeks and it's not going away. He looks pregnant. Would this be considered a distended stomach? It's starting to concern me. The stomach did go down in size during a case of RSV where he wouldn't eat or drink. Once he started eating and drinking again his belly got bigger again. I should also add that he has an minor abdominal hernia. I researched online about a distended belly and lactose intolerance came up. I ate gluten and dairy while I nursed him and then he went to a milk-based formula when I became concerned about him drinking breastmilk containing gluten (I didn't want to go on a gluten-free diet while I was nursing because I was wanting to go through celiac testing also). He switched to whole milk a few weeks ago. So he's always been on a diet that contains dairy. He's been to a pediatric GI a few months ago and he has another appointment in a few weeks. I don't know if I should try a milk that's not cow's milk, see if the pediatric GI could see him sooner (which I wouldn't be too hopeful for because he has a packed schedule), or get him into a new family doctor that personally has celiac disease (our family doc did celiac bloodwork for my son when he was on a gluten-free diet so i've been considering switching anyway because I want a doc that understands celiac if that's what my son has). He's not diagnosed celiac yet because the GI doc said he's too young for accurate testing. He has tested negative twice for wheat allergies.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


etta694 Explorer
etta694
Posted

Just a note.. something I learned here. If Celiac is present then the villi may have been affected and the tips of the villi are where lactase is produced for the digestion of dairy (lactose). So lactose intolerance could be part of the issue.

mushroom Proficient
mushroom
Posted

I note in a previous post that he vomits when he eats gluten, and that he has dropped to the 5th percentile in height and is low weight and wearing baby-size clothes still. This, along with the distended belly, would all seem to indicate a gluten intolerance. Yes, testing is difficult in young children, but you really can't get accurate testing until they are about three. Are you going to make him suffer for two more years?? I think I would trial him off all gluten before the GI appointment and that way you can report to the doctor how he responds. Take pictures of his belly now and see if it has gone down by the doctor's appointment, and see if his vomiting stops.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

I note in a previous post that he vomits when he eats gluten, and that he has dropped to the 5th percentile in height and is low weight and wearing baby-size clothes still. This, along with the distended belly, would all seem to indicate a gluten intolerance. Yes, testing is difficult in young children, but you really can't get accurate testing until they are about three. Are you going to make him suffer for two more years?? I think I would trial him off all gluten before the GI appointment and that way you can report to the doctor how he responds. Take pictures of his belly now and see if it has gone down by the doctor's appointment, and see if his vomiting stops.

He is on a gluten-free diet and has been for months already. Acutally, he's only had gluten maybe 10 times in his life. He's never been a baby that spit up a lot, so when he did after oatmeal that was a big red flag for his dad and I. I was able to notice the trend of wheat products based on his reaction to only a few foods. I think I'm doing everything right. He's been off gluten containing breastmilk since Jan. or Feb. He has seperate cookware, tupperware, cutting board and so on. We're careful to pick up crumbs and are careful if we're eating gluten at supper to clean our hands before handling his food. If his reaction to eating gluten stays the same I could never put him through the gluten challenge. I want to look into genetic testing for him. He had RSV a few weeks ago and has been back to normal eating/drinking for the last couple of weeks. The fact that his stomach shrunk while he wasn't eating/drinking and then grew again made me wonder what is up. Not sure if he's getting cross-contamination somehow, if there is an issue with dairy or what's going on. I just feel so frustrated. I don't want to overreact to everything but I don't think my 13 month old should look pregnant.

mushroom Proficient
mushroom
Posted

If he is gluten free but still on dairy I would definitely remove the dairy (and not substitute soy - try an almond or hemp milk or a rice milk so long as it's not rice dream. For a spread there is Earth Balance soy-free spread. If he is gluten intolerant he is most likely lactose intolerant too - maybe even casein intolerant. Try removing most grains if you can, including cereals, in fact most processed foods and just give him meat, veg and fruit. See if it makes a difference.At this point I think it is important to try to weed out anything from his diet that could be bothering him. Grains and dairy are likely culprits.

Roda Rising Star
Roda
Posted

It is possible that he may be getting cross contamination from the house if you and dad are not gluten free. Kids that age like to put everything in their mouths. If he touches something that you may have touched with gluten on your hands and he puts his hands in his mouth then bam, cc issues.

Dani Girl Newbie
Dani Girl
Posted

So I've been posting a lot today, but hopefully someone has some insight that could help me on this topic. I'm a first time mom and new to this whole celiac thing and I'm not sure what to do. My 13 month old has shown symptoms of issues with gluten/wheat since we introduced rice cereal and oatmeal. He vomits severely after eating wheat/gluten containing foods. Since he was a few weeks old he has had a larger belly. Everyone kept saying it would go away after he began crawling/walking. Well he's been crawling for a few months and walking for 6 weeks and it's not going away. He looks pregnant. Would this be considered a distended stomach? It's starting to concern me. The stomach did go down in size during a case of RSV where he wouldn't eat or drink. Once he started eating and drinking again his belly got bigger again. I should also add that he has an minor abdominal hernia. I researched online about a distended belly and lactose intolerance came up. I ate gluten and dairy while I nursed him and then he went to a milk-based formula when I became concerned about him drinking breastmilk containing gluten (I didn't want to go on a gluten-free diet while I was nursing because I was wanting to go through celiac testing also). He switched to whole milk a few weeks ago. So he's always been on a diet that contains dairy. He's been to a pediatric GI a few months ago and he has another appointment in a few weeks. I don't know if I should try a milk that's not cow's milk, see if the pediatric GI could see him sooner (which I wouldn't be too hopeful for because he has a packed schedule), or get him into a new family doctor that personally has celiac disease (our family doc did celiac bloodwork for my son when he was on a gluten-free diet so i've been considering switching anyway because I want a doc that understands celiac if that's what my son has). He's not diagnosed celiac yet because the GI doc said he's too young for accurate testing. He has tested negative twice for wheat allergies.

you might want to check to see if it's only Lactose allergy, the only way to correctivly test him for Celiac Disease is to have him continue eating it for a period of time, then the GI specialist will then request a upper GI Scope and a biopsy of the small intestine. Thats the only true way of confirming Celiac disease.... My 2 year old was just diagnosed 2 weeks ago. She wasn't vomiting, it was more of the color of her stuhls and the textures. She is doing awesome now that we have her on this new diet.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Another thing that pops up from reading this, are his intestens doing what their supposed to be doing (as in regular bowl movements and such)? I'm slightly a medical nerd and i read somewhere that that can be a result of the inestens not moving things properly thus the distended belly. :(

salexander421 Enthusiast
salexander421
Posted

Both my girls had distended bellies that went away with a gluten free diet. My 3 year old will start to get a big belly and get constipated if she has even a speck of gluten. They are both extremely sensitive. We pretty much have a gluten free household, unless my hubby sneaks some in the house on occasion. We pretty much can't eat anything processed or we end up getting cross contamination somewhere.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

Another thing that pops up from reading this, are his intestens doing what their supposed to be doing (as in regular bowl movements and such)? I'm slightly a medical nerd and i read somewhere that that can be a result of the inestens not moving things properly thus the distended belly. :(

Oh, his intestines work!!! He has bowel movements a couple times a day. We did put him on rice milk a couple days ago. His belly might be a tiny bit smaller, but it's no drastic change. So maybe milk wasn't the issue. His stools have become firmer (he didn't have diahrea, but they were pretty soft). Whether that's due to cutting dairy out or the fact that he's not eating yogurt (so less soft-textured food) every day now we're not sure. Maybe he's just eating too much??

shadowicewolf Proficient
shadowicewolf
Posted

Oh, his intestines work!!! He has bowel movements a couple times a day. We did put him on rice milk a couple days ago. His belly might be a tiny bit smaller, but it's no drastic change. So maybe milk wasn't the issue. His stools have become firmer (he didn't have diahrea, but they were pretty soft). Whether that's due to cutting dairy out or the fact that he's not eating yogurt (so less soft-textured food) every day now we're not sure. Maybe he's just eating too much??

Well thats good to hear :). I read a story once where a little boy had the same issue except he had really bad C all his life. Turns out part of his intestens had no vili (or something) to keep the movements moving, thus the poor boy couldn't go for the life of him. Fortenently they were able to fix it by removeing the section that wasn't working :) (off topic LOL)

Is it possible that he is bloated or gassy? That could explain some of it.

Rock7902 Newbie
Rock7902
Posted

So I've been posting a lot today, but hopefully someone has some insight that could help me on this topic. I'm a first time mom and new to this whole celiac thing and I'm not sure what to do. My 13 month old has shown symptoms of issues with gluten/wheat since we introduced rice cereal and oatmeal. He vomits severely after eating wheat/gluten containing foods. Since he was a few weeks old he has had a larger belly. Everyone kept saying it would go away after he began crawling/walking. Well he's been crawling for a few months and walking for 6 weeks and it's not going away. He looks pregnant. Would this be considered a distended stomach? It's starting to concern me. The stomach did go down in size during a case of RSV where he wouldn't eat or drink. Once he started eating and drinking again his belly got bigger again. I should also add that he has an minor abdominal hernia. I researched online about a distended belly and lactose intolerance came up. I ate gluten and dairy while I nursed him and then he went to a milk-based formula when I became concerned about him drinking breastmilk containing gluten (I didn't want to go on a gluten-free diet while I was nursing because I was wanting to go through celiac testing also). He switched to whole milk a few weeks ago. So he's always been on a diet that contains dairy. He's been to a pediatric GI a few months ago and he has another appointment in a few weeks. I don't know if I should try a milk that's not cow's milk, see if the pediatric GI could see him sooner (which I wouldn't be too hopeful for because he has a packed schedule), or get him into a new family doctor that personally has celiac disease (our family doc did celiac bloodwork for my son when he was on a gluten-free diet so i've been considering switching anyway because I want a doc that understands celiac if that's what my son has). He's not diagnosed celiac yet because the GI doc said he's too young for accurate testing. He has tested negative twice for wheat allergies.

We have a 26 month old recently tested (blood test) positive for celiac. She had a distended belly - after a few weeks off gluten her belly seems to be headed towards normal. On the advice of others on this board, we also tried switching her milk to Lactaid (whole milk) - this seemed to have an almost overnight affect and she looked/felt better, despite negative test result for lactose previously. We see a marked change in her happiness/energy level - took about 3 weeks. I would say certainly try to the Lactaid whole milk in addition to removing gluten. Best of luck.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

I was able to get him an appointment with a new doctor and she is being very thorough. She thought his belly is probably bigger than it should be so she ran an xray and if they don't see anything on the xray then we may look into allergy testing. She's having us keep a food journal for a couple of weeks. He also has another massive ear infection- even though he has tubes. I guess he's not talking like he should be for his age. So a lot to take care of but hopefully we'll figure out if anything is going on.

jmeikle Newbie
jmeikle
Posted

I recently posted something about distended bellies in children. I have Celiac and my twins carry the gene for it, but don't show antibodies currently. They had seriously distended bellies (looked pregnant), so I decided to eliminate gluten from their diet and voila - they have MUCH flatter bellies. Now I know when they've had gluten by the size of their bellies - which can last into the next day. They've never had problems keeping gluten down though, just the distended bellies, which does suggest a reaction to something. One of the twins used to get skin rashes (looked like eczema) and had skin allergies - small skin colored bumps all over his belly (we thought to fruit), but both have subsided - no idea if that is a result of eliminating gluten though.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.