Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

An Update On Us...
0

21 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! ;)

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,115
    • Total Posts
      919,447
  • Topics

  • Posts

    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • Finally, proof that non-celiac gluten sensitivity is real. ... for the 30 percent of consumers who choose to buy gluten-free products and the 41 percent of ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined