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#16 beachbirdie

 
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Posted 12 July 2012 - 12:52 PM

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.


You certainly have your hands full! And as you are getting later into your pregnancy you probably don't have a lot of energy to spare for dealing with all this stuff. My heart goes out to you. It really saps your strength to be fighting with dumb doctors and trying to do their job for them. I've had to do that more than a few times. :(

Your son has been on my mind these last few days, I went to see your earlier posts and now I understand a little better.

I'm wondering if it would be just fine, for a while, to let him eat lots of what he loves. But hold off on the starches...even gluten free ones. I can't imagine why nuts are not okay, nuts are a good source of protein and also good fats. Sounds like he tolerates them just fine! Since he is not having good, formed, bowel movements, it's probably even okay to let him do without a lot of fruit though the fruit sugar is not a negative even if you are dealing with a bacteria problem.

I see you are a chef! That's awesome! You know the nuts and bolts of food! There are some quick-to-make breads that aren't grain-based that make good snacks, maybe you could poke around the "No More Crohn's" site, there are some folks who have figured out good things to eat without using grains. I apologize if I've already passed this one on to you. I love their stuff. Here's a link to their recipe page. Their Fun Food For Kids page has kid-tested ideas!

Can you give a little more detail about the probiotic you are using? It is possible that any FOS (fructo-oligosaccharides, also known as PRE-biotics) might be hindering healing. They give me terrible cramps, I can't take them.

Sometimes the mix of organisms can make a difference. Which organisms does yours contain? Does it have Saccharomyces Boulardii? That is not really a bacteria, it's in the family of nutritional yeast, but some studies show it can often be very helpful in intestinal issues.
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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

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#17 Sesara

 
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Posted 13 July 2012 - 06:29 AM

You certainly have your hands full! And as you are getting later into your pregnancy you probably don't have a lot of energy to spare for dealing with all this stuff. My heart goes out to you. It really saps your strength to be fighting with dumb doctors and trying to do their job for them. I've had to do that more than a few times. :(

Your son has been on my mind these last few days, I went to see your earlier posts and now I understand a little better.

I'm wondering if it would be just fine, for a while, to let him eat lots of what he loves. But hold off on the starches...even gluten free ones. I can't imagine why nuts are not okay, nuts are a good source of protein and also good fats. Sounds like he tolerates them just fine! Since he is not having good, formed, bowel movements, it's probably even okay to let him do without a lot of fruit though the fruit sugar is not a negative even if you are dealing with a bacteria problem.

I see you are a chef! That's awesome! You know the nuts and bolts of food! There are some quick-to-make breads that aren't grain-based that make good snacks, maybe you could poke around the "No More Crohn's" site, there are some folks who have figured out good things to eat without using grains. I apologize if I've already passed this one on to you. I love their stuff. Here's a link to their recipe page. Their Fun Food For Kids page has kid-tested ideas!

Can you give a little more detail about the probiotic you are using? It is possible that any FOS (fructo-oligosaccharides, also known as PRE-biotics) might be hindering healing. They give me terrible cramps, I can't take them.

Sometimes the mix of organisms can make a difference. Which organisms does yours contain? Does it have Saccharomyces Boulardii? That is not really a bacteria, it's in the family of nutritional yeast, but some studies show it can often be very helpful in intestinal issues.


Well, I'll be damned, my probiotic, Nature's Way, does contain FOS. He only gets 1/2 tsp per day, I hadn't eliminated it because we weren't full into the introductory GAPS diet yet. I was just reading about FOS the other day, but I didn't think to check it. We only have 2 doses left anyways. And my new one contains inulin, which is only marginally better, I see. I guess the bacteria have to eat something. I think that children's probiotics generally have a different mix than adults - this one has five different strains of Lactobacillus and five of Bifidobacterium strains. I haven't seen any that contain other types of bacteria in the mix sold locally at my health food and supplement stores. I will keep looking though, thanks for the advice!
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#18 beachbirdie

 
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Posted 13 July 2012 - 10:59 AM

Well, I'll be damned, my probiotic, Nature's Way, does contain FOS. He only gets 1/2 tsp per day, I hadn't eliminated it because we weren't full into the introductory GAPS diet yet. I was just reading about FOS the other day, but I didn't think to check it. We only have 2 doses left anyways. And my new one contains inulin, which is only marginally better, I see. I guess the bacteria have to eat something. I think that children's probiotics generally have a different mix than adults - this one has five different strains of Lactobacillus and five of Bifidobacterium strains. I haven't seen any that contain other types of bacteria in the mix sold locally at my health food and supplement stores. I will keep looking though, thanks for the advice!


I'm going to be mail-ordering from now on. I've been very frustrated with what I find in the stores because of all the pre-biotics, and the limited assortment of strains in the ones without pre-biotics.

IrishHeart has shared about the company Custom Probiotics and I like the look of their stuff. The owner, who developed his different mixes because of his own intestinal problems, is very willing to speak with customers by phone and help them figure out what might suit their needs. I like the look of their yogurt culture as well. They are expensive, but you get a lot of "bang for your buck". They have strains that I've not seen in other places, they come in powder or capsules so you can personalize the dose, they have a nice pediatric-specific offering.
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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

#19 Takala

 
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Posted 17 July 2012 - 04:31 AM

While I am a huge fan of the SCD for adults, having done it myself (modified version, as I didn't do dairy in the beginning, years ago) children need more carbohydrates than those of us who respond to a low- carb, high fat, high protein diet.

If nuts don't bother him, and they are gluten free, let him eat them. Some of these diets are written up by adults with major, major digestive issues and they can be too rigid in their thinking that what works for themselves must work for everyone else.

Try putting some cinnamon on the broccoli. Broccoli, and some greens, REALLY vary in taste from early in the season to mid summer, because they become more bitter tasting in the heat, then sweeter tasting in the spring and fall when the nights are cooler. And you don't know where your greens come from, unless you are buying from a farmer's market, or ask the store. We have been having some freakishly cooler summer weather here, and I was just reminded of this because of some home grown chard we had last night which tasted unusually good for mid summer. On the other hand, this is so not the time of year for brussels sprouts, which need a frost to taste sweet. B)
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#20 Sesara

 
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Posted 18 July 2012 - 04:27 AM

While I am a huge fan of the SCD for adults, having done it myself (modified version, as I didn't do dairy in the beginning, years ago) children need more carbohydrates than those of us who respond to a low- carb, high fat, high protein diet.

If nuts don't bother him, and they are gluten free, let him eat them. Some of these diets are written up by adults with major, major digestive issues and they can be too rigid in their thinking that what works for themselves must work for everyone else.

Try putting some cinnamon on the broccoli. Broccoli, and some greens, REALLY vary in taste from early in the season to mid summer, because they become more bitter tasting in the heat, then sweeter tasting in the spring and fall when the nights are cooler. And you don't know where your greens come from, unless you are buying from a farmer's market, or ask the store. We have been having some freakishly cooler summer weather here, and I was just reminded of this because of some home grown chard we had last night which tasted unusually good for mid summer. On the other hand, this is so not the time of year for brussels sprouts, which need a frost to taste sweet. B)


Right now, we're still working on diet overall. Half his problem, I'm sure, is that he's a toddler. He'll eat a lot of veggies raw but if you offer them cooked, he won't touch them - I think it's a texture thing and also a "ew, my food is all touching" thing because he doesn't like mixed up foods all that much. I also know that children have a higher need for carbs, so I try not to cut too much out. Honestly, all I want is to get his results back regarding malabsorption, maybe get him tested for SIBO, and then work with the dietician about what I should feed him while his gut heals from that, if it turns out positive.

I think he got glutened this weekend, as his diapers have been copious and gritty the last couple days and we were in a toddler group where there was gluten and he may have gotten ahold of something, despite my trying to be vigilant.

On a plus note, we had an appointment with his new pediatrician today, and she seems like she really wants to be our advocate. She really and truly listened to his history, our experiences with other doctors and tests so far, and was just great with him. She wants to be able to fully review all of his information (some of it was not yet in his chart, like the dietician's report), speak with his other doctors, develop a full picture of what is going on, and have us follow up in a couple of weeks. She mentioned repeating his blood work and testing for other malabsorption issues, and so even while we're not officially switching pediatric GI's yet, I feel so much better knowing that she is going to be working with us, rather than just throwing up her hands and brushing us off to the GI. I will probably eventually get to the new GI, but feeling like I finally have a medical professional in my corner has left me feeling a lot more relaxed.
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#21 Sesara

 
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Posted 19 July 2012 - 12:06 PM

Well, more news today...I'm not sure how I feel about it honestly. My son's fecal tests for malabsorption came back negative. Now, this was one of his better stools, so I'm sure a different stool might have yielded different results. But regardless, it does make me feel encouraged that healing is taking place, even if it is slower than I would have preferred.

The one test that the GI now wants to do, which makes me wonder if our new pediatrician has been in consultation with him, is a fecal elastase test, for pancreatic insufficiency. I've been reading, and there does seem to be a connection between pancreatitis and celiac disease, and it *could* explain our symptoms. I'm still researching, so I'm unsure exactly what this would mean for him if it's true - it may put him at higher risk for diabetes and pancreatic cancer, and he may have to be supplemented for life with pancreatic enzymes, or he may heal...I'm not clear yet. So off to do more research and hope that maybe this next test will finally yield some answers.
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