Pot Belly, Chronic Constipation, Frequent Utis, Low Iron

[dcrobinett]

I'm sorry but I didn't do a search through the forum about this issue because I always struggle with trying to apply other people's slightly different questions and answers to a specific issue and I second guess myself, etc. I just need to ask specifically and get direct answers. Thanks :-)

 

So. 

 

I have celiac disease, official diagnosis nearly 6 years ago. I have two girls, one will be 5 in two months and the other is 18 months. We are Americans and we moved to Turkey almost three years ago, when my oldest was 2. Long story short, we put her in preschool 3 days a week where they fed her the usual Turkish diet which is very heavy on bread, pasta, and rice. They also tend to do a lot of bean soups -- just carbs. Being the carb-lover my daughter was, she ate all the bread, pasta, crackers at school, of course. She eventually began to struggle with chronic constipation and frequent UTIs, starting two years ago. She also has an ENORMOUS pot belly. She is skinny everywhere else. She has very little padding to her bottom but then, my husband has no butt anyway so she could've just inherited that. 

 

We had her tested for celiac by blood test (age 1 and 3) and upper endoscopy (age 3). She did not test positive. Her pediatrician put her on osmotic laxatives (similar to Miralax) and it helped (and we continued to eat real food at home -- no bread, no pasta, but we had rice at dinner, plenty of veggies and fruit). Her UTIs became less frequent for a while and then became frequent again last summer. We took to an urologist who performed a VCUG test (for reflux back into her kidneys -- tested negative) and then concluded her brain and bladder were not communicating well, which she would outgrow, and that her bladder was spasming involuntarily, based on what we were describing (sudden dash to the bathrooms, tiny leakage onto underwear -- enough to dampen underwear but not completely wet her pants -- and no sensation of feeling a full bladder). She was put on anti-spasmodic medicine, taken off the osmotic laxatives, and since then, the mad dashes to the bathroom and wet underwear ceased completely. That was awesome. 

 

THEN two months later...she began to get constipated again, got a UTI and another the next month (which was last month). No mad dashes to the bathroom and no tiny urine leakage onto underwear...so what's up with the UTIs again? We could see the constipation and UTI connection. We knew that chronic constipation could enlarge her rectum, putting pressure on her bladder, making her unable to empty it fully which causes bacteria to thrive in her bladder. The first urologist thought the constipation and UTIs were unrelated. So, we went to a different urologist, a pediatric urologist, who was recommended as the best in the country. After a long consultation, he put her on a strict diet for 3 weeks -- basically a gluten-free diet (not 100%, though) without sugar, starch (potatoes, corn), anything that causes bloating, and fruit that constipates (bananas and apples) -- and back on the osmotic laxatives, continuing the anti-spasmodic for her bladder. He wanted to resolve the constipation issue for 3 weeks before beginning tests for the urology issue. I think he thinks the constipation and UTIs are related but wants to rule out other things with tests. 

 

So, that's where we are. We go back to this pediatric urologist in a week. We are following the diet, I send lunch and snacks to school with my daughter, and she has also tested low in iron so we added iron into her diet (grape molasses, etc). She now has daily BMs, she has more color in her face, her energy has improved due to the increased iron. She used to just lie around, staring into space for periods of time everyday. She no longer comes home from preschool hyperactive (jacked up on sugar and starch at school) and no longer super emotional. It's paradoxical: her energy improved overall but she's not hyperactive anymore. 

 

The strange thing is, her pot belly got bigger on the new diet, bigger than when she was constipated. A few days after beginning the new diet, her belly became grossly distended -- she was panting like she couldn't breathe, her bottom ribs were bowing outward, her belly was rounded out even on the sides, and she couldn't reach her toes. She looked like a malnourished child in a famine-ridden African country. I figured her body was learning to digest real food instead of the processed junk she was eating at school and it was adjusting. Her belly got a bit better after that but it's still enormous, even more than when she was chronically constipated. 

 

Her belly bothers me. I know some kids still have a pot belly at the age of 5 but this is not normal. Hers is huge. Her shirts are now too tight around the belly; I have to tug them down over her stomach. I'm getting tired of people blowing me off about her belly and my instincts are telling me that this isn't normal. Is it a sign of vitamin deficiency? Celiac? Anyone experience this with their kids?

 

Isn't the upper endoscopy the gold standard in celiac testing? Can she still have celiac and test negative on the upper endoscopy? I know more about celiac for adults than I do for kids so I feel like I am in unknown waters here.

 

Any ideas? Tips? Thoughts? Anything I should bring up to the doctor on the next visit? 

 

Thanks-

Diana.

 

 

 

 

[ArPlasma]

Hi Diana! I am new here so probably not of much help but DS1 has had a pot belly and super skinny body everywhere else otherwise( about 25 percentile difference between height and weight). I used to point it out to the docs too as worrisome to me and kept thinking it was not right but kept being told that everyone in the family is tall and on the thinner side. I could not shrug the feeling that he looked like a starving child.

What blood tests did they do to DD?

Also, from what I understand, the damage of the villi can either be missed( not enough biopsy samples for instance) or not enough yet to be detected. Others might be able to explain it better.

Hang in there. I hope you figure it out quickly!

[1desperateladysaved]

Yes, they can miss the damage when they do an endoscopy. 

 

I have celiac.  When I was 10 my sister thought I looked like I was pregnant!  When I went gluten free a couple of years ago, my belly loomed larger for a while. 

 

I hope you will be sure to have all of the tests for celiac.  For the tests a person must be eating some gluten, so perhaps that is why the doc said some gluten is okay.  Do keep track of his symptoms and improvements and share them with the doctor.  I would write them down as you think of them.

 

D

[dcrobinett]

Hi Diana! I am new here so probably not of much help but DS1 has had a pot belly and super skinny body everywhere else otherwise( about 25 percentile difference between height and weight). I used to point it out to the docs too as worrisome to me and kept thinking it was not right but kept being told that everyone in the family is tall and on the thinner side. I could not shrug the feeling that he looked like a starving child.

What blood tests did they do to DD?

Also, from what I understand, the damage of the villi can either be missed( not enough biopsy samples for instance) or not enough yet to be detected. Others might be able to explain it better.

Hang in there. I hope you figure it out quickly!

Does your son have celiac? If so, did your son's pot belly improve on the gluten-free diet? I suspect I've had some gluten intolerance growing up with symptoms off and on but I never knew they were abnormal. I think I had a bit of a pot belly around the age of 5 (from what I remember in my childhood pictures around that age) but nowhere near as huge as my oldest. Even the pediatric urologist pointed out that her belly is abnormally large, a hallmark of constipation. 

[dcrobinett]

Yes, they can miss the damage when they do an endoscopy. 

 

I have celiac.  When I was 10 my sister thought I looked like I was pregnant!  When I went gluten free a couple of years ago, my belly loomed larger for a while. 

 

I hope you will be sure to have all of the tests for celiac.  For the tests a person must be eating some gluten, so perhaps that is why the doc said some gluten is okay.  Do keep track of his symptoms and improvements and share them with the doctor.  I would write them down as you think of them.

 

D

 

Well, the test results were all in Turkish but I remember checking to see if they tested for all the antibodies (IgA, IgE, etc) and I'd felt satisfied. I stopped researching celiac after a year or two after my diagnosis and just moved on with my diet so now I've forgotten a lot of the information about testing. I'll need to read up again and check her medical records. 

[ArPlasma]

Does your son have celiac? If so, did your son's pot belly improve on the gluten-free diet? I suspect I've had some gluten intolerance growing up with symptoms off and on but I never knew they were abnormal. I think I had a bit of a pot belly around the age of 5 (from what I remember in my childhood pictures around that age) but nowhere near as huge as my oldest. Even the pediatric urologist pointed out that her belly is abnormally large, a hallmark of constipation.

We are waiting for the results of the biopsy but given his blood tests results and family history chances are pretty high. he's been gluten free for almost 4 weeks now( right after biopsy) and has not had a tummy ache since which was a daily thing. He's also only had one episode of headache since( he used to have 3 episodes a week average). I think his behavior is improving as well but I may be biased and don't think it OS long enough to assess yet.