Post by cori on Mar 10, 2021 14:16:14 GMT -5
Hi guys!
I have 23 month old twin boys. We've been battling near daily diarrhea, bloating, loose stools and occasional acetone breath since introducing solids. They were both breastfed from 7 weeks to 13 months. I have recently managed to get them to have solid stools by working hard to tweak their diet.
I'm so happy that I've finally found a specialist who is taking me seriously, though it's taken us weeks from the referral point to the appointment. He is going to run some tests and we're being referred to a geneticist very shortly.
So first off, is it normal for us to have these sorts of symptoms and still (potentially) have HFI with invisible damage to the liver? When I read about HFI, it's almost as if it's easily diagnosed when a child presents with seizures or convulsions and projectile vomiting. We don't have any of that.
I attempted a low FODMAP diet from 13 months to about a month ago, when I realized that things were only improving slightly. We've tried no dairy, lactose-free, gluten-free, egg-free at various intervals to see if anything helped. Things have mildly improved with limiting portion sizes of fruit and anything sweet. We cut out all fruit about two weeks ago and my kids were entirely different. They were suddenly super alert, their loose stools were absolutely gone and they seemed to want to participate in their day to day lives a little more. Because I believed that it was just a FI/FODMAP issue, I reintroduced fruit in tablespoon-sized quantities, once or twice a day and then increased it to see if they'd tolerate it. They went back to loose stools and bloating. I thought my kids were just super sensitive to fibre or something.
I have one boy who's hesitant with fruit/vegetables and another who will not stop eating it. They don't make the mental connection between eating sugary food and bloating/diarrhea. Is this common or uncommon?
The recent turning point was when I'd given my boys a slightly sugary breakfast that would have been fine for a low-FODMAP diet. Within two hours, they had incredibly awful loose stools and acetone breath. I feel like this is the most sugar they've had in one sitting in a very long time, and I feel stupid for thinking, "Well, this would be fine on a low-FODMAP diet, so it's fine for them."
After all this...
I finally got a hold of a pediatric GI specialist after this episode. He's extremely concerned about HFI and has asked me to limit fructose/sugar/sorbitol immediately while we investigate.
As an aside...
I've complained about the fact that I can't feed them much of anything to doctors and parent friends. Most of the time I'm told it's a toddler thing, or just to get over it, or that they're not old enough for testing. One person told me that the diarrhea was caused by my need to control their food intake and that if I worried less and let them eat everything, they'd be fine.
- We've also been gluten free for a year. I was waiting on a celiac test to try to transfer them back. When we recently tried to re-introduce oats and when I offered them a tiny piece of bread, they both had absolutely adverse reactions to the foods. Multiple diarrhea over the course of one day and the bread caused a near instant reaction.
- Is the lactose-free milk incompatible with the HFI diet? I've been doing LF dairy because of FODMAPs (I know they're not to be used together), however, I do suspect that they might be lactose intolerant as well. I feel like it's okay because the lactase enzyme gets turned into galactose and glucose, unless this isn't compatible either. We did dairy-free for a long time and the non-dairy milks (other than rice milk) caused terrible reactions. I'd love to know more about this. Thanks!
- Should I be concerned about these tolerances? My two seem to react super poorly to even miniscule-sized amounts of oats and bananas. Oats/avenin might be a celiac problem and bananas may be an issue with fructose, so I could be lumping them into the same category unfairly. I make my own GF bread which contains rice/potato/tapioca starches and egg whites.
I have 23 month old twin boys. We've been battling near daily diarrhea, bloating, loose stools and occasional acetone breath since introducing solids. They were both breastfed from 7 weeks to 13 months. I have recently managed to get them to have solid stools by working hard to tweak their diet.
I'm so happy that I've finally found a specialist who is taking me seriously, though it's taken us weeks from the referral point to the appointment. He is going to run some tests and we're being referred to a geneticist very shortly.
So first off, is it normal for us to have these sorts of symptoms and still (potentially) have HFI with invisible damage to the liver? When I read about HFI, it's almost as if it's easily diagnosed when a child presents with seizures or convulsions and projectile vomiting. We don't have any of that.
I attempted a low FODMAP diet from 13 months to about a month ago, when I realized that things were only improving slightly. We've tried no dairy, lactose-free, gluten-free, egg-free at various intervals to see if anything helped. Things have mildly improved with limiting portion sizes of fruit and anything sweet. We cut out all fruit about two weeks ago and my kids were entirely different. They were suddenly super alert, their loose stools were absolutely gone and they seemed to want to participate in their day to day lives a little more. Because I believed that it was just a FI/FODMAP issue, I reintroduced fruit in tablespoon-sized quantities, once or twice a day and then increased it to see if they'd tolerate it. They went back to loose stools and bloating. I thought my kids were just super sensitive to fibre or something.
I have one boy who's hesitant with fruit/vegetables and another who will not stop eating it. They don't make the mental connection between eating sugary food and bloating/diarrhea. Is this common or uncommon?
The recent turning point was when I'd given my boys a slightly sugary breakfast that would have been fine for a low-FODMAP diet. Within two hours, they had incredibly awful loose stools and acetone breath. I feel like this is the most sugar they've had in one sitting in a very long time, and I feel stupid for thinking, "Well, this would be fine on a low-FODMAP diet, so it's fine for them."
After all this...
I finally got a hold of a pediatric GI specialist after this episode. He's extremely concerned about HFI and has asked me to limit fructose/sugar/sorbitol immediately while we investigate.
As an aside...
I've complained about the fact that I can't feed them much of anything to doctors and parent friends. Most of the time I'm told it's a toddler thing, or just to get over it, or that they're not old enough for testing. One person told me that the diarrhea was caused by my need to control their food intake and that if I worried less and let them eat everything, they'd be fine.
- We've also been gluten free for a year. I was waiting on a celiac test to try to transfer them back. When we recently tried to re-introduce oats and when I offered them a tiny piece of bread, they both had absolutely adverse reactions to the foods. Multiple diarrhea over the course of one day and the bread caused a near instant reaction.
- Is the lactose-free milk incompatible with the HFI diet? I've been doing LF dairy because of FODMAPs (I know they're not to be used together), however, I do suspect that they might be lactose intolerant as well. I feel like it's okay because the lactase enzyme gets turned into galactose and glucose, unless this isn't compatible either. We did dairy-free for a long time and the non-dairy milks (other than rice milk) caused terrible reactions. I'd love to know more about this. Thanks!
- Should I be concerned about these tolerances? My two seem to react super poorly to even miniscule-sized amounts of oats and bananas. Oats/avenin might be a celiac problem and bananas may be an issue with fructose, so I could be lumping them into the same category unfairly. I make my own GF bread which contains rice/potato/tapioca starches and egg whites.
