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Looking for advice: Dd has chronic GI problems


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She just turned 7, and has battled recurring constipation for almost 5 years, despite daily consumption of miralax, fiber gummies and probiotics, combined with a high fiber diet. She often complains of belly pain, which we treat by heating up a rice pack for her and giving her minty ginger extract, which was recommended by a pediatric GI specialist. She has her annual physical tomorrow with her pediatrician, and I'm wondering what questions I should ask, or testing I should request. She had blood testing about a year ago to check for allergies to dairy, eggs and gluten, which all came back negative. Her belly is often bloated. Oh, and a week ago, she had a nasty tummy bug in addition to severe abdominal pain, which had me worried about appendicitis, so I took her to the ER. They agreed it was worth looking into, so they did a CT scan, which ruled out appendicitis, but showed constipation. I just can't believe she can still get that backed up with all the measures we take to attempt to avoid it. 

Has anyone been through something similar? Any advice would be greatly appreciated. 

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Yes, dd tests negative for a dairy allergy but clearly has a dairy intolerance.

Try taking her off dairy for three weeks (the half life of dairy protein is 17 days) and see if she improves.

I would be asking to see a ped GI again if the elimination diet doesn’t point to some answers.

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Two of my kiddos had this problem and the only solution was to go dairy free.  ALL dairy - even cheese and butter.  No, they aren't allergic per se, but dairy free stopped the problems.  DS also had chronic ear infections and DD had migraines and those went away with the dairy free diet as well.  Who would have thought.  The specialist will not tell you this, haha.  It is trial and error. 

 

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Just now, prairiewindmomma said:

Yes, dd tests negative for a dairy allergy but clearly has a dairy intolerance.

Try taking her off dairy for three weeks (the half life of dairy protein is 17 days) and see if she improves.

I would be asking to see a ped GI again if the elimination diet doesn’t point to some answers.

 

We posted at the same time haha.  

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Did they check for celiac antibodies or just allergies to wheat?

And if they did check TTG IGA did they do a total IGA as well? A significant percentage of people with celiac have low IGA in general, so the normal test doesn't show positive. 

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Thanks for the quick responses. She eats very little dairy, but I think it's worth eliminating completely for awhile. Gluten would be harder, but I'm sure we could do it. There is such conflicting and confusing info out there about food sensitivities. Both the pedestrian and the GI specialist seemed to take the blood results as proof that food sensitivities were not to blame. 

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The blood tests for celiac are notoriously inaccurate. With those symptoms over that length of time and that much medicine, I would insist on a scope. And I would escalate those doctors to more intense figuring-it-out rather than letting the poor kid just live on Miralax all the time. Sometimes doctors are too comfortable with treatments that don't solve the problem.

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Drinking enough fluids has always been a struggle, especially when she is in school all day. I've tried various things to get her to drink more, but it's hit or miss. I am definitely going to push for more help from her doctor. We had tried an elimination diet a couple of years ago, with no noticeable change. Interesting about some people getting constipated with increased fiber - I had never heard of that! I'm not familiar with a scope for checking for celiac. What does that entail?

There's SO much conflicting information out there about celiac, testing and diet. It's very frustrating to sift through it all. 

We are braving nasty weather to head to her annual physical soon, so any last minute things to ask her pedestrian? Thanks, all! 

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High fiber NEEDS high liquids or it is actually counterproductive.

The only time DD ever was constipated it was because she started brick and mortar kindergarten, and stopped eating fruit during the day.  This was because mid-morning the teacher let the kids pick one item from their lunch boxes to eat, and she would pick her sandwich.  Then at lunch time she was not hungry enough to eat anything, and the fruit came back home, day after day.

I figured this out, and got her a Tupperware container that had two compartments that were liquid-tight.  I put fruit on one side and whole grain cereal on the other.  I told her that this was what to pick for the snack, every day, and to eat the fruit so her bottom wouldn't hurt.  That worked, it did take a couple of days though.  The cereal was more filling and the fruit was what she needed, and since they were in the same container the teacher counted it as 'one thing'.

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17 hours ago, Happy Camper said:

She just turned 7, and has battled recurring constipation for almost 5 years, despite daily consumption of miralax, fiber gummies and probiotics, combined with a high fiber diet. She often complains of belly pain, which we treat by heating up a rice pack for her and giving her minty ginger extract, which was recommended by a pediatric GI specialist. She has her annual physical tomorrow with her pediatrician, and I'm wondering what questions I should ask, or testing I should request. She had blood testing about a year ago to check for allergies to dairy, eggs and gluten, which all came back negative. Her belly is often bloated. Oh, and a week ago, she had a nasty tummy bug in addition to severe abdominal pain, which had me worried about appendicitis, so I took her to the ER. They agreed it was worth looking into, so they did a CT scan, which ruled out appendicitis, but showed constipation. I just can't believe she can still get that backed up with all the measures we take to attempt to avoid it. 

Has anyone been through something similar? Any advice would be greatly appreciated. 

We had a child with that issue at that age [eta: ... and for years afterward]. Constipation, belly pain, bloating, plenty of fiber, water, and exercise, no allergies to anything. Pediatrician was mystified. Miralax didn't help. And despite being already thin, she started losing weight because eating was so associated with pain. Next step was going to be a colonoscopy to look for obstructions.

Dr. Google suggested that the problem might be too much fiber in her diet, which is especially a problem for vegetarians. We took her off the Miralax and reduced her dietary fiber to as near zero as we could. Canned or very cooked veggies, canned or cooked fruits, no more whole grain anything, much higher fat content. And started her eating meat.

She got quite a bit better immediately, and after about six months of high-fat, super-low-fiber, she no longer has constipation and abdominal pain. One crazy out-of-town week she had almost nothing but cheese pizza and milk for three days, and at the end of that she felt better than she had in years.

Fruits and vegetables are more normal now. She's back to a normal weight. We still avoid super-fibrous foods for her.

Google around. She's not the only kid who needed the exact opposite approach to the usual pediatric recommendation.

Edited by Violet Crown
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If she's still having pain and constipation you might want to at least back off the fiber a bit while you wait. Keep the miralax, etc but a bit less fiber unless she is really drinking more. The fiber works great with fluids, to bulk up the stool so it triggers a need to go. But without fluid it gums up the works and turns into basically cement in there. 

Also, they probably explained this, but the way constipation works is that once the colon is stretched out significantly the nerves that say "hey - full in here - we need to poop!" are not triggered right. You have to clear everything out and then KEEP it cleared out for a LONG time - months to a year probably - so that the stretched colon can gradually resume its normal size. Only then will the child have the proper sensations regarding needing to poop. As long as it is stretched out it will take a huge volume of poop to hit the walls of the colon enough to trigger the urge. Which you don't want. So that is why you have to keep someone (be they a person or a cat) on still softeners for so very long even after they seem better. Otherwise it starts to build up again and you start all over. And telling the person to "go when they get the urge" won't work because they are not physically getting the urge until it is already backed up, due to the way the nerves react when stretched out like that. 

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