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#1 Sesara

 
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Posted 10 July 2012 - 06:50 PM

We have now been gluten free for 6 weeks, and I have been gluten free for 2 weeks, and we're still not really seeing a huge improvement in his stools. And today, his poop was a little bit gritty/sandy again, so I'm not sure if he got glutened or reacted to something else.

I've been researching gut healing diets and SIBO because I wonder if that's hindering healing. I've been thinking about it, and wonder how much of a role antibiotics have played in all his gut problems. I had routine antibiotics in the hospital because I was GBS positive. Then I had a ton of antibiotics when I had pneumonia, which I know affected him based on his stools. And finally, he had a round of antibiotics for an ear infection the week before he caught the tummy bug that kicked off his chronic diarrhea and full blown symptoms. I think we have a lot of work to do to really get his gut bacteria back into a healthy working order before his stools finally resolve and his belly bloat goes away entirely.

And finally, I got my test results back from Prometheus today. All my antibody tests were negative, which I can't say I'm not relieved about (though I know they're not foolproof), but I did learn a surprising fact - I am positive for DQ8, not DQ2.5. Which of course means that DH must be, so he is going to get antibody testing himself, and I encouraged his parents to get screened. And it definitely cements my enthusiasm for getting this new baby screened sooner than later, since they run the risk of being a DQ2/DQ8 heterozygote, which is one of the worst combinations, though hopefully they'll luck out and avoid one or both genes.

So I'm still processing all this, and doing lots of research. I did find out that I have to get a referral to see the other hospital's pediatric GI, but I managed to get my son's well visit moved up to next week, rather than a month from now, so hopefully they will switch us without too much hassle. I just want to get my son healing, and the sooner the better, especially with this baby coming in the next few weeks.
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#2 Lfrost

 
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Posted 10 July 2012 - 08:53 PM

I am really hoping you find some answers soon! Will you be pushing for allergy testing at this appointment?
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#3 Mom2J112903

 
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Posted 11 July 2012 - 06:23 AM

I would push for more GI testing as there seems to be something more going on. A UGI with SBFT (UpperGI with SmallBowelFollowThru) is a simple radiological exam which will show how the stomach empties, if there is reflux, and what length of time it takes the barium (yummy! :P ) to go thru the small bowel. It will also show any anatomy issues, if there is any. We were able to get A LOT of answers from this testing and led us to others but we didn't have to *start* with the more invasive testing.

(((hugs))) Hope you find some more answers and your LO starts feeling better!
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#4 Sesara

 
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Posted 11 July 2012 - 10:34 AM

I would push for more GI testing as there seems to be something more going on. A UGI with SBFT (UpperGI with SmallBowelFollowThru) is a simple radiological exam which will show how the stomach empties, if there is reflux, and what length of time it takes the barium (yummy! :P ) to go thru the small bowel. It will also show any anatomy issues, if there is any. We were able to get A LOT of answers from this testing and led us to others but we didn't have to *start* with the more invasive testing.

(((hugs))) Hope you find some more answers and your LO starts feeling better!


I do want to find what else is going on, because I agree, it's something, but I don't even know how we would get him to drink the barium, so I don't know how we could do that test - I had it when I was 18 and it was not easy for me, and you can't reason with him that it's for his health at 23 months, kwim?

And at least they didn't see any anatomy issues with his upper GI endoscopy.

But yes, once I can get in to see the other ped GI, hopefully they will be able to look at more than lack of calories as the root of our problems. There are definitely a number of tests that they could potentially run, and I'd be happy if a doctor would look at his chart and actually see what was going on with him and use his expertise to determine which tests would give us answers that would be most helpful in getting a diagnosis for him.
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#5 Mom2J112903

 
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Posted 11 July 2012 - 10:52 AM

My son had his first UGI at 5wks, his last one was when he was 7.

A good pedi GI will look at his chart and *all* of his symptoms, if they don't well they are not good! ;)
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#6 StephanieL

 
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Posted 11 July 2012 - 12:40 PM

After 3 months gluten-free and not seeing a lot in the way of results, we put DS on a probiotic. Within 3 days he was having normal BM's for the first time in 4 years. There may be something else going on but 6 weeks isn't a ton of time either.
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#7 beachbirdie

 
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Posted 11 July 2012 - 01:27 PM

We have now been gluten free for 6 weeks, and I have been gluten free for 2 weeks, and we're still not really seeing a huge improvement in his stools. And today, his poop was a little bit gritty/sandy again, so I'm not sure if he got glutened or reacted to something else.

I've been researching gut healing diets and SIBO because I wonder if that's hindering healing. I've been thinking about it, and wonder how much of a role antibiotics have played in all his gut problems. I had routine antibiotics in the hospital because I was GBS positive. Then I had a ton of antibiotics when I had pneumonia, which I know affected him based on his stools. And finally, he had a round of antibiotics for an ear infection the week before he caught the tummy bug that kicked off his chronic diarrhea and full blown symptoms. I think we have a lot of work to do to really get his gut bacteria back into a healthy working order before his stools finally resolve and his belly bloat goes away entirely.

And finally, I got my test results back from Prometheus today. All my antibody tests were negative, which I can't say I'm not relieved about (though I know they're not foolproof), but I did learn a surprising fact - I am positive for DQ8, not DQ2.5. Which of course means that DH must be, so he is going to get antibody testing himself, and I encouraged his parents to get screened. And it definitely cements my enthusiasm for getting this new baby screened sooner than later, since they run the risk of being a DQ2/DQ8 heterozygote, which is one of the worst combinations, though hopefully they'll luck out and avoid one or both genes.

So I'm still processing all this, and doing lots of research. I did find out that I have to get a referral to see the other hospital's pediatric GI, but I managed to get my son's well visit moved up to next week, rather than a month from now, so hopefully they will switch us without too much hassle. I just want to get my son healing, and the sooner the better, especially with this baby coming in the next few weeks.



Have you looked into the GAPS or Specific Carbohydrate Diet? The SCD was developed for people with Crohn's, IBS, other digestive disorders. It might help while you work with your new doc to get things sorted out.

Another poster mentioned probiotics, I would second the recommendation if you are not already doing them. I think Culturelle makes a good pediatric product. Look for one without FOS. If there IS bacterial overgrowth, the FOS will feed the bad as well as the good bacteria. Also, according to the woman who renewed interest in the Specific Carbohydrate Diet, it is recommended to wait until a child has been on the diet for a few weeks before starting probiotics.

If his gut is sensitive, you might need to start with partial doses and work up slowly.

Check out the Pecanbread site. Lots of good ideas and lots of support for parents of kids with GI issues.

Glad you were able to get your appointment moved up. Thanks much for the update, I was wondering how things were going for you.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#8 Sesara

 
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Posted 11 July 2012 - 03:19 PM

He has been on probiotics for gut healing for months now - a good one, with 8 billion live cultures. When it runs out in a few days, I have a better one with 10 billion live cultures waiting in the wings. He also gets an EPA supplement. I also just picked up a cod liver oil supplement, as I've read good things about that addressing vitamin D and B12 deficiencies, a common problem for malabsorbers that can help speed healing.

I've looked into the GAPS and SCD diet, as well as low FODMAP's. SCD doesn't seem feasible, as it has extremely lengthy requirements for how long you should stay off certain foods - 6 month minimums - and while that's fine for an adult, there's only so much I can realistically cut from my son's diet for so long. It also seems to be based on older nutrition science. GAPS is great in theory, but the one textural aversion he seems to have is to purees, and I have a hard time getting him to drink broths. He's also not a huge fan of any of the veggies that you can use when they are simmered - some of them he'd eat raw, but won't touch cooked. So we are sort of GAPS-lite at present - I'm making lots of soups and he's mostly eating the meat from them, but at least he's getting a little broth in with that and some of the vegetable benefits, but I'm also still feeding him some fruit and nuts. I'm sure if I offered him nothing else, he would eventually crack and eat it, but until I can switch to a pediatric GI who isn't convinced that I'm either too stupid or malicious to feed my son properly, I'm a little hesitant to "force" him onto a diet that may result in a temporary setback in weight gain, or even short-term loss.
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#9 Sesara

 
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Posted 11 July 2012 - 03:20 PM

Mom2J112903...how do they get your child to drink the barium without forcing it down their throat? I'm not trying to be rude or anything, but I don't think I could subject him to someone force-feeding it to him and I can't see how else they would get the barium into him.
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#10 Mom2J112903

 
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Posted 11 July 2012 - 03:56 PM

Mom2J112903...how do they get your child to drink the barium without forcing it down their throat? I'm not trying to be rude or anything, but I don't think I could subject him to someone force-feeding it to him and I can't see how else they would get the barium into him.



No worries and no offense taken. I know I have a strange child :P He WILLINGLY took the bottle of barium at 5wks of age. It was WAY past feeding time (had to be NPO for 4hrs? before the test) and I just think he was hungry, he didn't care what was in it. As he got older, they started flavoring it and telling him it was a strawberry milkshake. The techs make a huge fuss over the kiddos, making it something not so horrible and that really helps as well. I have heard of techs putting an NG down if the child will not take it :( Now my son *hates* IVs and when he had his NG placed (GI issues, never for a test) it went better than placing an IV. It takes at least 4 nurses plus myself to get an IV in him...only 2 nurses to get the NG in. So yeah, I have a strange child :P
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#11 beachbirdie

 
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Posted 11 July 2012 - 06:57 PM

He has been on probiotics for gut healing for months now - a good one, with 8 billion live cultures. When it runs out in a few days, I have a better one with 10 billion live cultures waiting in the wings. He also gets an EPA supplement. I also just picked up a cod liver oil supplement, as I've read good things about that addressing vitamin D and B12 deficiencies, a common problem for malabsorbers that can help speed healing.

I've looked into the GAPS and SCD diet, as well as low FODMAP's. SCD doesn't seem feasible, as it has extremely lengthy requirements for how long you should stay off certain foods - 6 month minimums - and while that's fine for an adult, there's only so much I can realistically cut from my son's diet for so long. It also seems to be based on older nutrition science. GAPS is great in theory, but the one textural aversion he seems to have is to purees, and I have a hard time getting him to drink broths. He's also not a huge fan of any of the veggies that you can use when they are simmered - some of them he'd eat raw, but won't touch cooked. So we are sort of GAPS-lite at present - I'm making lots of soups and he's mostly eating the meat from them, but at least he's getting a little broth in with that and some of the vegetable benefits, but I'm also still feeding him some fruit and nuts. I'm sure if I offered him nothing else, he would eventually crack and eat it, but until I can switch to a pediatric GI who isn't convinced that I'm either too stupid or malicious to feed my son properly, I'm a little hesitant to "force" him onto a diet that may result in a temporary setback in weight gain, or even short-term loss.


Ahh, I see!

Wondering now if you could modify a diet like SCD for your situation. When my daughter-in-law started it, she did not follow the prescribed timing, she just jumped right to the "legal-illegal" list, and started eating the foods that were legal. Since your son doesn't have Crohn's, he wouldn't need to follow the timetable. But eating the "legal" foods would protect him from all the saccharides that feed the bad bacteria if he is suffering from overgrowth. That part of the science is still good.

Antibiotics are what messed up my DIL's intestines, sounds like you all have been badly affected by them too. :(

It basically boils down to being semi-paleo/primal!

What kinds of food does your son seem to enjoy best?
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#12 Sesara

 
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Posted 11 July 2012 - 07:45 PM

No worries and no offense taken. I know I have a strange child :P He WILLINGLY took the bottle of barium at 5wks of age. It was WAY past feeding time (had to be NPO for 4hrs? before the test) and I just think he was hungry, he didn't care what was in it. As he got older, they started flavoring it and telling him it was a strawberry milkshake. The techs make a huge fuss over the kiddos, making it something not so horrible and that really helps as well. I have heard of techs putting an NG down if the child will not take it :( Now my son *hates* IVs and when he had his NG placed (GI issues, never for a test) it went better than placing an IV. It takes at least 4 nurses plus myself to get an IV in him...only 2 nurses to get the NG in. So yeah, I have a strange child :P


I guess I just have a hard time picturing it because I had such a horrible experience drinking the barium myself when I had to do that test, and I'm pretty sure it was flavored, but I spent the whole time wanting to vomit it up - I couldn't even finish the amount they wanted me to. My son is a classic "spirited" child, which means "stubborn" in many ways, and if he doesn't want to eat something, he will not eat it, especially repeatedly, and he fights like hell against getting a simple blood draw, so an NG tube would probably be extremely traumatic for him. If it were absolutely necessary, I would consider it, but probably only as a last resort given his personality.
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#13 Sesara

 
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Posted 11 July 2012 - 07:59 PM

Ahh, I see!

Wondering now if you could modify a diet like SCD for your situation. When my daughter-in-law started it, she did not follow the prescribed timing, she just jumped right to the "legal-illegal" list, and started eating the foods that were legal. Since your son doesn't have Crohn's, he wouldn't need to follow the timetable. But eating the "legal" foods would protect him from all the saccharides that feed the bad bacteria if he is suffering from overgrowth. That part of the science is still good.

Antibiotics are what messed up my DIL's intestines, sounds like you all have been badly affected by them too. :(

It basically boils down to being semi-paleo/primal!

What kinds of food does your son seem to enjoy best?


Well, we've been eating mostly Paleo for several weeks now, transitioning more and more, but I've transitioned my son more slowly because lets face it, when you have a toddler who is *always* hungry the way he is, snacks on the go are important, and it's hard to find things that travel well or quick foods - so I'm guilty of the morning gluten free waffle or occasional peanut butter sandwich on gluten-free bread - we've been eating less and less of it lately. He is a little carnivore and will happily scarf down almost any meat we've given him - most fish, shellfish, beef, pork, lamb, and chicken are all hits. He also loves fruit, but that's something I think I would have to cut out entirely for a bit, and that's one of the toughest ones to imagine doing, since he will devour most fruits and they are good "on the go" snacks. Same with nuts - outlawed by most healing diets, at least in the beginning, but something that he loves and always wants to eat. Vegetables seem to be a hit and miss with him - one day he loves broccoli, and the next day he won't touch it, he will eat carrots raw but dislikes them cooked, he will eat some vegetables like sweet potatoes crispy, but not mashed or steamed - I think a lot of it is textural aversion to "mushy" foods, not that I massively overcook them, but he is just very particular about it and unpredictable.

Tonight I made a ham shank soup and he ate all the meat out, but barely touched the vegetables - I think I got one bite of zucchini in him - though the two raw carrots he ate earlier in the evening were probably partially responsible - however, most of these diets want veggies all fully cooked. It's slow going to transition him and I'm sure it would be easier if I was less pregnant and trying to juggle that with all of his needs. Some days I feel bad for this baby, because I don't feel like I think about him/her at all, I'm so busy researching ways to heal my son.
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#14 Mom2J112903

 
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Posted 12 July 2012 - 03:52 AM

I guess I just have a hard time picturing it because I had such a horrible experience drinking the barium myself when I had to do that test, and I'm pretty sure it was flavored, but I spent the whole time wanting to vomit it up - I couldn't even finish the amount they wanted me to. My son is a classic "spirited" child, which means "stubborn" in many ways, and if he doesn't want to eat something, he will not eat it, especially repeatedly, and he fights like hell against getting a simple blood draw, so an NG tube would probably be extremely traumatic for him. If it were absolutely necessary, I would consider it, but probably only as a last resort given his personality.



I understand! My son has a longer medical hx than the typical elderly adult. We have had some rough experinces with him but they all led to answers (whether good or bad) and a path, which for us is what we need to give him a quality of life. Every parent chooses what is best for *their* child and to me that is what is ultimatly the most important factor.
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#15 Sesara

 
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Posted 12 July 2012 - 04:59 AM

I understand! My son has a longer medical hx than the typical elderly adult. We have had some rough experinces with him but they all led to answers (whether good or bad) and a path, which for us is what we need to give him a quality of life. Every parent chooses what is best for *their* child and to me that is what is ultimatly the most important factor.


I can't disagree with that! Some people have acted like I was a horrible person for testing him because "it's just wrong" to scope a 21-month old. Some people think I'm stupid for wanting some kind of official diagnosis for him because "their child had allergies and the school always worked with them". But yes, we are all just trying to advocate for our children in the best way we know how and take their needs and limitations into account when deciding on the best course of treatment for them.
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