celticmom Posted January 7, 2013 Share Posted January 7, 2013 :grouphug: I hope your son feels better and you get a good diagnosis. I might have to start looking into testing dd for celiac based on some of the posts here. We did an elimination test and she went bonkers when we added wheat back in. She is very slender and prone to constipation. However, an allergy skin test did not test positive for wheat allergy. I am not entirely certain I care why; she says she feels so much better with no wheat that she refuses to eat wheat now. Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 7, 2013 Share Posted January 7, 2013 The problem with dairy may actually be the casein protein rather than the lactose sugar. Casein has a very similar chemical structure to gluten, so many people react badly to both. Soy protein is another one with a similar chemical structure. In either case, the "cure" would be not to have dairy at all, right? :-) Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 7, 2013 Share Posted January 7, 2013 In either case, the "cure" would be not to have dairy at all, right? :-) Lactose intolerant individuals may be able to tolerate small amounts of dairy in baked goods and processed foods, while casein intolerant individuals can't have any dairy whatsoever. My mom has lactose intolerance and she doesn't have to scrutinize labels the way I do with my youngest DD. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 7, 2013 Author Share Posted January 7, 2013 Lactose intolerant individuals may be able to tolerate small amounts of dairy in baked goods and processed foods, while casein intolerant individuals can't have any dairy whatsoever. My mom has lactose intolerance and she doesn't have to scrutinize labels the way I do with my youngest DD. How did you find out which part she is intolerant to? Quote Link to comment Share on other sites More sharing options...
besroma Posted January 7, 2013 Share Posted January 7, 2013 Lactose intolerant individuals may be able to tolerate small amounts of dairy in baked goods and processed foods, while casein intolerant individuals can't have any dairy whatsoever. My mom has lactose intolerance and she doesn't have to scrutinize labels the way I do with my youngest DD. We had this in our family also. DH is lactose intolerant, but can consume soured milk products and baked products with milk as an ingredient with no negative health effects. He can also eat ice cream when he takes Lactaid. DD was sensitive to casein when she was younger and could have no dairy at all. The milk protein takes months to clear your system, whereas the effects of the lactose are gone soon after digesting the milk product. Quote Link to comment Share on other sites More sharing options...
besroma Posted January 7, 2013 Share Posted January 7, 2013 I hope your son feels better soon and that you get some definitive answers. Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted January 7, 2013 Share Posted January 7, 2013 I hope your little one feels better. I have found with ALL of the different GI specialist we have seen that they know everyting and we know nothing and sometimes can careless what your dr thinks because well they know everything. My little on is allergic to dairy and soy (athough does not show up on allergy testing anymore she got in to my cream cheese and now has belly issues and a rash on her face to prove her guilt er allergy. We have had glutten in the house recently due to the holidays and am regretting it. While we didnt cook anything with it it still was on the counters (thankfully only on paper plates) so I am going to have to do a deep clean and pray I get it mostly out of the house. Good luck on this journey. It is always an interesting ride. Quote Link to comment Share on other sites More sharing options...
SMRB Posted January 7, 2013 Share Posted January 7, 2013 We have a very similar experience, and I totally understand your frustration. My DS is also 5 1/2 and had problems from infancy. Lots of throwing up, small size, food allergy testing, backtracking to first baby foods looking for sensitivities, eczema (lots of clues we missed in retrospect). We found out he was constipated when I finally got fed up with daytime accidents and bedwetting and had him x-rayed. Despite 2 BM's a day, he was totally backed up, and he was falling from the 50th to the 10th percentile in height and weight. The pediatrician put him on a small daily dose of Miralax. I decided to just take him to the GI after doing more research, and she jumped on his x-ray right away and planned a full cleanout plus daily miralax for maintenance. She explained that you really do need a full cleanout, and that the daily miralax the pediatrician had prescribed would just mask the problem. It took 4 days on a liquid diet with massive miralax plus other laxatives, and we're still not positive he was cleaned out. Had him x-rayed again a week after that, and he was all backed up again despite huge soft BM's 3+ times a day. Took him off of dairy, and we saw some improvement and he started to grow again. Back to the GI again last month (who is at a celiac center by the way), and she says he's still backed up. He also sees an allergist, had the full celiac panel twice a couple of years apart, was scoped 2 years ago, and has had many other tests. When I asked in desperation, the GI said yes, it could still be gluten despite all of the negative celiac testing, and suggested doing a month off of gluten plus weekly mini-cleanouts and monthly full cleanouts (ugh!). We're in week 2 of gluten-free now and really struggling with feeding him, getting all of the laxatives into him, and getting him to the bathroom after every meal, but we do think GF might be making a difference. We've been chasing this with him for years now, and It is exhausting. Now we're thinking he may be non-celiac gluten intolerant and dairy intolerant. But soy is also a big constipation offender, so that might be next on our list if GF doesn't do it... If the x-ray showed constipation, make sure you get him totally cleaned out, and then make sure he tries to go after every meal (that's when the natural urge is strongest). Keep up the miralax and titrate the dosage until you hit a pudding consistency, or else you'll be back where you started quickly. Try keeping a food journal and see if you can find any connections. :grouphug: I hope your journey to an answer is a short one! Quote Link to comment Share on other sites More sharing options...
Parrothead Posted January 7, 2013 Share Posted January 7, 2013 Update- L is doing good. He didn't start going to the bathroom from the Miralax until this morning. I don't think that is normal at all. He must be really blocked up! Otherwise, he is happy and playing- with an occasional run to the bathroom. ;) We hope to find out more this week from his doctor about what to do next. Ellie- He definitely seems to have a problem with dairy and as a result we very rarely let him have a little bit. Thank you! I'm glad he is doing well. It may take a while for him to get thoroughly cleared out. Hopefully this will be the end of his problems. Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted January 7, 2013 Share Posted January 7, 2013 One of the issues I have discovered in gluten free living is in the GI drs really don't comprehend how to do the diet. Even the best specialist have a very simplistic view of it. Just go gluten free Take out wheat rye, barley! Life will be great! Well they are wrong. it is not that simple and then they wonder why the diet doesn't work that well or very quickly. I'm slowly pulling together a diet plan for GF . One day I hope to be a gluten free educator. Gluten issues whether it is Celiac or just the intolerance or my new favorite label :rolleyes: non positive Celiac, the diet really should include in the very first weeks a complete fast of everything gluten, dairy, and soy. Dairy and soy are similar in size to gluten When the body is in full attack mode, your antibodies are just on all out attack. And a lot of things come under friendly fire. Dairy and Soy are those shot down by friendly fire and are causalities of this internal war. Your body recognizes the shape, immediately thinks gluten and kills. And the recovery takes so much longer because the inflammation and damage continues as the body still thinks it is under attack. Go gluten free, go dairy free, go soy free. Don't feed the child anything in the house that was opened before gluten free days. If you were a heavy baker before, then remember flour is saturated in your home. It is everywhere. the fine dust coats walls, furniture, dishes, everything. The bread crumbs are crumbled in spots everywhere - drawers, toaster ovens, toasters, knife handles (pull out your knife blade for a steak knife and be prepared to be GROSSED OUT.) The gluten "gunk" from when you cook pasta lodges in the holes of strainers despite even the best of dishwashing, flings around in the dishwasher, hides out in nooks, crannies, and nicks in non stick pan ware. IT is a beast. And even though it is minute tiny amounts that don't amount to enough to upset a healthy person, WHEN YOU ARE IN THE ACUTE stage, those little amounts keep the attack going. I recommend that people go completely GF, dairy free, soy free. Either make the whole house 100% gluten free including replacing plastic, strainers, nicked and marred non stick, replacing the toaster, toaster oven and can opener (DO NOT OPEN CAT FOOD ON THE CAN OPENER - major source of contamination for pet owners) OR make dedicated cookware, kitchen space and food items for the gluten free person. Even though it is not an allergy, in the beginning you really should treat it like a deadly allergy. think of it like peanut oil. It is everywhere and it sticks unless you are purposely scrubbing it off. The parents I've helped IRL with this have kids that get well very very quickly this way. It lasts for 2-6 months and then the child is healed enough or completely to be able to tolerate tiny cross contamination amounts. in other words, you can relax and not panic if you see your DH( bless his heart) rub the butter knife across his gluten bread and then stick it back in the tub of butter. ( yea I scoop out where the knife went but before I would have just thrown the brand new tub away!!!) Then dairy can be added back in small amounts. Most report no problems with adding it back. Then the experiment stage of gluten free flours begin and you learn what flavors you like, what works with your family and how you all will react. Sometimes, intestines still can't handle heavy grains/flours and some foods have to be slowly over time reintroduced or careful combos. (like pancakes for breakfast but no more bread for the day or corn and biscuits but not pancakes or toast that day) A food diary is really important. Keep up with number of bowel movements , types of foods eaten and what time and the trends can be seen rather easily then. For the diarrhea queen ( she was 18 months old when we started GF), it took 2 months of this extreme strictness and she was well, gaining weight and suddenly growing. It took another 6 months of careful balancing and reintroducing foods before we quit having episodes of diarrhea. The GI system just takes a long time to heal. I don't know why. It shouldn't. But it seems to For the constipated kid (he went once a week!), he was 10. IT took more like 6 months (we were never given anything to fix his constipation. So we didn't have clean outs or daily doses of meds to help. That may have sped things up.) He just gradually went from once a week to suddenly pretty much every day. He grew 6 inches, realized that he had always felt sick after eating but didn't know that wasn't normal. he just reacted with being a picky eater. But with both of them, we saw (being that strict) changes within 2 weeks. Enough to keep going, to know we were on the right path. Especially since we didn't have that gold standard biopsy and the specialists were convinced I was going to kill the whole family by removing wheat without that positive biopsy. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2013 Share Posted January 7, 2013 We have a very similar experience, and I totally understand your frustration. My DS is also 5 1/2 and had problems from infancy. Lots of throwing up, small size, food allergy testing, backtracking to first baby foods looking for sensitivities, eczema (lots of clues we missed in retrospect). We found out he was constipated when I finally got fed up with daytime accidents and bedwetting and had him x-rayed. Despite 2 BM's a day, he was totally backed up, and he was falling from the 50th to the 10th percentile in height and weight. The pediatrician put him on a small daily dose of Miralax. I decided to just take him to the GI after doing more research, and she jumped on his x-ray right away and planned a full cleanout plus daily miralax for maintenance. She explained that you really do need a full cleanout, and that the daily miralax the pediatrician had prescribed would just mask the problem. It took 4 days on a liquid diet with massive miralax plus other laxatives, and we're still not positive he was cleaned out. Had him x-rayed again a week after that, and he was all backed up again despite huge soft BM's 3+ times a day. Took him off of dairy, and we saw some improvement and he started to grow again. Back to the GI again last month (who is at a celiac center by the way), and she says he's still backed up. He also sees an allergist, had the full celiac panel twice a couple of years apart, was scoped 2 years ago, and has had many other tests. When I asked in desperation, the GI said yes, it could still be gluten despite all of the negative celiac testing, and suggested doing a month off of gluten plus weekly mini-cleanouts and monthly full cleanouts (ugh!). We're in week 2 of gluten-free now and really struggling with feeding him, getting all of the laxatives into him, and getting him to the bathroom after every meal, but we do think GF might be making a difference. We've been chasing this with him for years now, and It is exhausting. Now we're thinking he may be non-celiac gluten intolerant and dairy intolerant. But soy is also a big constipation offender, so that might be next on our list if GF doesn't do it... If the x-ray showed constipation, make sure you get him totally cleaned out, and then make sure he tries to go after every meal (that's when the natural urge is strongest). Keep up the miralax and titrate the dosage until you hit a pudding consistency, or else you'll be back where you started quickly. Try keeping a food journal and see if you can find any connections. :grouphug: I hope your journey to an answer is a short one! I hate to admit how long we were on daily doses of Miralax before we realized it was thoroughly masking the problem...4 months. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 7, 2013 Author Share Posted January 7, 2013 Supertechmom- What a journey! I feel like I have so much to learn. Even though we haven't been given a diagnosis yet, my husband and I can cleary see what a difference gluten makes for him. I am going to have to be super careful for him with everything. We found soy in his probiotics and flaxseed oil! (These were recommended to him by a nutritionalist.) We found some to replace them with that are safe. FYI- His GI did call today to check on him. I do appreciate that. And he did ackowledge that he understands that I want to find out why this is happening; he just wants to focus on cleaning him out first. I agree with cleaning him out first. I just think we could multitask and try to find the cause at the same time! ;) Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 7, 2013 Author Share Posted January 7, 2013 We have a very similar experience, and I totally understand your frustration. My DS is also 5 1/2 and had problems from infancy. Lots of throwing up, small size, food allergy testing, backtracking to first baby foods looking for sensitivities, eczema (lots of clues we missed in retrospect). We found out he was constipated when I finally got fed up with daytime accidents and bedwetting and had him x-rayed. Despite 2 BM's a day, he was totally backed up, and he was falling from the 50th to the 10th percentile in height and weight. The pediatrician put him on a small daily dose of Miralax. I decided to just take him to the GI after doing more research, and she jumped on his x-ray right away and planned a full cleanout plus daily miralax for maintenance. She explained that you really do need a full cleanout, and that the daily miralax the pediatrician had prescribed would just mask the problem. It took 4 days on a liquid diet with massive miralax plus other laxatives, and we're still not positive he was cleaned out. Had him x-rayed again a week after that, and he was all backed up again despite huge soft BM's 3+ times a day. Took him off of dairy, and we saw some improvement and he started to grow again. Back to the GI again last month (who is at a celiac center by the way), and she says he's still backed up. He also sees an allergist, had the full celiac panel twice a couple of years apart, was scoped 2 years ago, and has had many other tests. When I asked in desperation, the GI said yes, it could still be gluten despite all of the negative celiac testing, and suggested doing a month off of gluten plus weekly mini-cleanouts and monthly full cleanouts (ugh!). We're in week 2 of gluten-free now and really struggling with feeding him, getting all of the laxatives into him, and getting him to the bathroom after every meal, but we do think GF might be making a difference. We've been chasing this with him for years now, and It is exhausting. Now we're thinking he may be non-celiac gluten intolerant and dairy intolerant. But soy is also a big constipation offender, so that might be next on our list if GF doesn't do it... If the x-ray showed constipation, make sure you get him totally cleaned out, and then make sure he tries to go after every meal (that's when the natural urge is strongest). Keep up the miralax and titrate the dosage until you hit a pudding consistency, or else you'll be back where you started quickly. Try keeping a food journal and see if you can find any connections. :grouphug: I hope your journey to an answer is a short one! Keep me informed on your progress with your son! How wild that they are both 5 1/2 and have had such a similar journey! Let's pray for an end to this and a beginning of healing! Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2013 Share Posted January 7, 2013 Supertechmom- What a journey! I feel like I have so much to learn. Even though we haven't been given a diagnosis yet, my husband and I can cleary see what a difference gluten makes for him. I am going to have to be super careful for him with everything. We found soy in his probiotics and flaxseed oil! (These were recommended to him by a nutritionalist.) We found some to replace them with that are safe. FYI- His GI did call today to check on him. I do appreciate that. And he did ackowledge that he understands that I want to find out why this is happening; he just wants to focus on cleaning him out first. I agree with cleaning him out first. I just think we could multitask and try to find the cause at the same time! ;) Our GI was the same. One thing at a time. I think they do this because they want to make sure what's the cause of what or what change helped what. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 8, 2013 Share Posted January 8, 2013 How did you find out which part she is intolerant to? We don't actually know for sure that she is casein intolerant. However, she does have non-celiac gluten intolerance and the chemical structures of casein and soy are similar enough to gluten that our neurodevelopmental pediatrician recommended taking them out of her diet as well. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 9, 2013 Author Share Posted January 9, 2013 Just a quick update. The doctor that we have been waiting to see (we have a Mach 6th app. but were also on a waiting list) just got us in for MONDAY!!!! WOOHOO!!!! They are known for their testing and really thinking outside the box to really HELP! This is great, because L hasn't had a bm in a couple of days, even with the Miralax. Thank you all for all of your help and concern! It has felt so good to be able to vent on hear and not feel so alone in this!!!!! Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 9, 2013 Share Posted January 9, 2013 You may want to try a glycerin suppository. I'm in the middle of potty-training my little one, and she has had issues with holding #2 in order to avoid going in the potty or her underpants. Our pediatrician recommended using the glycerin suppositories when she does this because it will typically cause a movement within about 15 minutes. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted January 10, 2013 Share Posted January 10, 2013 Maybe it isn't strong enough, but I wonder if epsom salt baths and taking lots of magnesium would be helpful? Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 10, 2013 Author Share Posted January 10, 2013 Hmm, worth a try! Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 10, 2013 Share Posted January 10, 2013 It's possible to increase the Miralax dose but he's so little. We were also given the option to add a tablespoon of milk of magnesia as a very occasional add on to the Miralax, but you might want to try a teaspoon. The glycerin suppository might be the safest bet, though. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 10, 2013 Author Share Posted January 10, 2013 It's possible to increase the Miralax dose but he's so little. We were also given the option to add a tablespoon of milk of magnesia as a very occasional add on to the Miralax, but you might want to try a teaspoon. The glycerin suppository might be the safest bet, though. I'll definitely be making a run to Rite Aid in the morning if he's not feeling better. I saw you had posted something about your daughter earlier. I haven't had a chance to look at it yet. I started a new job today. But, I hope she is okay. I'll check your post out tonight. Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted January 10, 2013 Share Posted January 10, 2013 we have had to do LOTS of fleet ped enema's NOT NOT fun but works as well as a warm tub Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted January 10, 2013 Share Posted January 10, 2013 There is such a thing as non-celiac gluten intolerance. My youngest has it. She had no obvious GI symptoms and tested negative twice for celiac (second time the extended panel) and wheat allergies. She was off-the-charts small but as the doctor couldn't find anything wrong and my whole family is petite, our pediatrician chalked it up to genes. When she got diagnosed with autism in December 2011 she was wearing a size 18 mos. at 2 yrs. 11 mos. My other kids were small but not that small. Anyways, I decided to do a trial of the gluten- and dairy-free diet to see if it might help with the autism. Within 6 weeks, DD experienced a dramatic "catch-up" weight and height gain. She went from being <3rd percentile for both height and weight to 5th for height and 25th for weight. By April, she was wearing a size 4T. Our pediatrician says she sees this kind of "catch-up" gain frequently in gluten-intolerant kids who go GF. I'll be curious to see at her 4 year checkup what the percentiles are. She's still on the smaller side for her age, but it's a normal small like her siblings and me. We had a similar outcome for my now 5 yo. But she had major GI issues, too. My now 8 yo was tiny (not even on the chart-bone growth scan of 3.5 year delay) that we found out was due to Hashimoto's. we cut gluten and her GI issues went away (that even Synthroid didn't fix) and her weight/height jumped due to what our doc thinks is a combination of her autoimmune issues fueled by the on-Celiac gluten intolerance. She was tested via bloodwork, but her IgG was off the charts and her IgA was borderline low. So we just cut the gluten. OP-see a new pediatric GI and ped Allergist. Do GAPS or a FULL elim diet. Good luck! Quote Link to comment Share on other sites More sharing options...
besroma Posted January 10, 2013 Share Posted January 10, 2013 Just a quick update. The doctor that we have been waiting to see (we have a Mach 6th app. but were also on a waiting list) just got us in for MONDAY!!!! WOOHOO!!!! They are known for their testing and really thinking outside the box to really HELP! This is great, because L hasn't had a bm in a couple of days, even with the Miralax. Thank you all for all of your help and concern! It has felt so good to be able to vent on hear and not feel so alone in this!!!!! Wonderful! How exciting! Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 16, 2013 Author Share Posted January 16, 2013 UPDATE- Saw the new doctor Monday. We liked her; L really liked her. She recommended something new for his constipation that would be easier on his system. And hopefully works. (The Miralax has been constipating him worse.) She definitely thinks he has some food issues and possibly other allergies. She said, after examining him, that it looks like he is allergic to some inhalents (things you breathe in). This was new to us; neither my hubby or I have those kinds of allergies in our families, so we missed the signs. The doctor didn't like how swollen his lymph nodes are. I told her that this was nothing, they often get so bad that you can see them bulging out of his neck! Allergy testing will commence in February. Much more detailed than I have seen before. Told us to definitely keep him away from gluten in the meantime, since it is obviously a problem for him. Thank you all so much for your support! And for all of you whose little ones are suffering- I'm so sorry. I hope e all can find the help they need. Jessica Quote Link to comment Share on other sites More sharing options...
Reya Posted January 16, 2013 Share Posted January 16, 2013 Celiac tests are sometimes inaccurate, I believe, depending on the lab that does them. If he is celiac, then the intestinal damage can make sensitivities occur with other things that wouldn't normally cause a problem. If the gut heals, often the other sensitivities disappear, as they may have really been triggered by the damage. Quote Link to comment Share on other sites More sharing options...
besroma Posted January 16, 2013 Share Posted January 16, 2013 Thanks for the update. It is good to hear that you are making progress. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 16, 2013 Author Share Posted January 16, 2013 Besroma- THANK YOU Reya- I'm leaning towards this. The doctor said he probably has so much damage to his gut that it going to take a long time to heal. And then he can maybe add some more foods in. Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted January 16, 2013 Share Posted January 16, 2013 Great. But remember that tests for Celiacs will be incorrect if you go off gluten. I would look into the GAPS diet. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 16, 2013 Author Share Posted January 16, 2013 Great. But remember that tests for Celiacs will be incorrect if you go off gluten. I would look into the GAPS diet. Thank you- I will! Quote Link to comment Share on other sites More sharing options...
besroma Posted January 16, 2013 Share Posted January 16, 2013 Besroma- THANK YOU Reya- I'm leaning towards this. The doctor said he probably has so much damage to his gut that it going to take a long time to heal. And then he can maybe add some more foods in. You are welcome. :D Is he able to have dairy? Would the probiotics in yogurt help to heal his gut? Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 16, 2013 Author Share Posted January 16, 2013 You are welcome. :D Is he able to have dairy? Would the probiotics in yogurt help to heal his gut? He is not able to have too much dairy. So, I found probiotics at the healthfood store. I make my own yogurt and once in a while give him a little bit of that. I am thinking of more fermented and cultured foods, but so far he is very suspicious of them. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 16, 2013 Share Posted January 16, 2013 I make sauerkraut but have hardly eaten a bite because I'm suspicious, too. :o I give it to dh, though. :coolgleamA: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted January 16, 2013 Share Posted January 16, 2013 He is not able to have too much dairy. So, I found probiotics at the healthfood store. I make my own yogurt and once in a while give him a little bit of that. I am thinking of more fermented and cultured foods, but so far he is very suspicious of them. With the issues you describe, you should seriously consider taking him completely off all the big allergens for six weeks, and then try introducing one by one. Often if a child has more than one allergy/intolerance, but is taken off only one food, the symptoms remain because of the other foods that are still in circulation in the system. In your shoes, I would go over to a hard-core paleo-style diet or meat, fruit, and veggies. Completely eliminate dairy, gluten, and soy. At the very least, you know already that he cannot have much dairy. In other words, he has a problem with dairy. So, since you know he is so sick, take him ruthlessly and completely off ALL dairy and gluten (as has been discussed). Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted January 17, 2013 Share Posted January 17, 2013 what did she recommend or the constipation? Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 17, 2013 Author Share Posted January 17, 2013 Mag Calm or Natural Calm. She said that a lot of people who are severely constipated are magnesium deficient. Quote Link to comment Share on other sites More sharing options...
SMRB Posted January 17, 2013 Share Posted January 17, 2013 Did you ask about celiac testing? It's absolutely true that if you take him off of gluten and he improves, you'll never know if it's celiac vs. intolerance without putting him back on it again for testing. It's easiest to get at least the celiac blood test out of the way before you go gluten free. If the Miralax didn't work, how are you getting him cleaned out? Unless you use liquid magnesium citrate, magnesium alone won't do it. It might make things move more regularly, but it won't clean out the backup. Think of it as a sock with a hole in the bottom, filled up with ping pong balls. One might come out the bottom if you push another one in the top, and it might even come out softer or easier, but the sock is still full. Glad you found a doctor you like! Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 17, 2013 Author Share Posted January 17, 2013 Did you ask about celiac testing? It's absolutely true that if you take him off of gluten and he improves, you'll never know if it's celiac vs. intolerance without putting him back on it again for testing. It's easiest to get at least the celiac blood test out of the way before you go gluten free. If the Miralax didn't work, how are you getting him cleaned out? Unless you use liquid magnesium citrate, magnesium alone won't do it. It might make things move more regularly, but it won't clean out the backup. Think of it as a sock with a hole in the bottom, filled up with ping pong balls. One might come out the bottom if you push another one in the top, and it might even come out softer or easier, but the sock is still full. Glad you found a doctor you like! Unfortunately, he has been glutenfree for awhile now. It makes him feel so much better. He'd have to go on it for awhile to get retested. Nartual calm is ionic magnesium citrate that is added to hot water. Your sock illustration gave me a chuckle. I know waaay more about poop than I want to. But, it makes sense what you are saying. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted January 17, 2013 Share Posted January 17, 2013 I second the recommendation to go off all dairy and other allergens. It is very common for people with gluten intolerance to have trouble with dairy as well. I have to avoid both. I think a paleo diet would be a good place to start. Try Robb Wolf's book and website. Remember, paleo means gluten/grain/dairy/soy-free, but doesn't have to be low-carb. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted January 17, 2013 Share Posted January 17, 2013 I just had another idea. I believe I've read that the GI system uses large amounts of serotonin to function properly. I wonder if taking tryptophan or 5-HTP to boost his serotonin would help. The Diet Cure is a great book about how to use amino acids to help various ailments. Quote Link to comment Share on other sites More sharing options...
SMRB Posted January 17, 2013 Share Posted January 17, 2013 I'm intrigued by the Natural Calm. We've tried liquid magnesium citrate, but it tastes so ghastly that we absolutely could not get it into him. Is Natural Calm a liquid or a pill? I thought it was a vitamin supplement. I'm wondering how it compares to the mag cit liquid bottles you can get at the grocery store. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 18, 2013 Share Posted January 18, 2013 Inner Eco makes a non-dairy coconut kefir probiotic. I recently re-started my DD on it because her integrative pediatrician is treating her for yeast with Nystatin and he told me that she really ought to be taking a probiotic even if before it hadn't seemed to make any difference. Since re-starting the probiotic and starting the Nystatin, DD has made major improvements in terms of her potty-training. :hurray: Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 18, 2013 Author Share Posted January 18, 2013 I'm intrigued by the Natural Calm. We've tried liquid magnesium citrate, but it tastes so ghastly that we absolutely could not get it into him. Is Natural Calm a liquid or a pill? I thought it was a vitamin supplement. I'm wondering how it compares to the mag cit liquid bottles you can get at the grocery store. Natural Calm is sweetened with stevia and ours has a raspberry lemon flavor (I think there is an orange also). It's not bad! I haven't tried the other stuff before. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 18, 2013 Author Share Posted January 18, 2013 Inner Eco makes a non-dairy coconut kefir probiotic. I recently re-started my DD on it because her integrative pediatrician is treating her for yeast with Nystatin and he told me that she really ought to be taking a probiotic even if before it hadn't seemed to make any difference. Since re-starting the probiotic and starting the Nystatin, DD has made major improvements in terms of her potty-training. :hurray: I want to try that coconut kefir for L. YAY on the potty training!!!!!!!! :hurray: :hurray: :hurray: Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted January 18, 2013 Author Share Posted January 18, 2013 I second the recommendation to go off all dairy and other allergens. It is very common for people with gluten intolerance to have trouble with dairy as well. I have to avoid both. I think a paleo diet would be a good place to start. Try Robb Wolf's book and website. Remember, paleo means gluten/grain/dairy/soy-free, but doesn't have to be low-carb. I keep hearing about the paleo diet. I definitely have to look into it. I have to say I'm nervous to try something new. Even though he is gluten, soy, nut free (and mostly dairy) already, he is starting to get frustrated with all the changes. But, if it's so much better for him, maybe we have to try it. I hear a lot of praise for it. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 19, 2013 Author Share Posted February 19, 2013 My son was tested today for more food allergies- 21 out of the 30 were positive. TWENTY-ONE OUT OF THIRTY!!!!! Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted February 19, 2013 Share Posted February 19, 2013 :grouphug: I missed this thread when it began. I see you have received advice similar to what I would have said and that you're way past the initial visit. Please KUP about your son. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 19, 2013 Author Share Posted February 19, 2013 He has an appointment with his GI on Thursday. But, today... that was not fun. He was allergic to some of the craziest stuff. Grapes, apples, chicken, beef. Sunflower seeds were really bad. I am going to have to do some research to see what other protein options are out there for him. We haven't even tested him for beans yet. I soooo hope he can at least have those safely. Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted February 19, 2013 Share Posted February 19, 2013 He has an appointment with his GI on Thursday. But, today... that was not fun. He was allergic to some of the craziest stuff. Grapes, apples, chicken, beef. Sunflower seeds were really bad. I am going to have to do some research to see what other protein options are out there for him. We haven't even tested him for beans yet. I soooo hope he can at least have those safely. You might want to check on venison. I hear that people with allergies to other meats tolerate venison well. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 19, 2013 Author Share Posted February 19, 2013 You might want to check on venison. I hear that people with allergies to other meats tolerate venison well. VERY good idea!!!! We have a friend who loves to hunt- I'll have to raid his freezer and try some for L. Quote Link to comment Share on other sites More sharing options...
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