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

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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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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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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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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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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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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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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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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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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?

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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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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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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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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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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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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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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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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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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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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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    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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