When Should We Start Seeing Results?

[mom2two]

My daughter, 4 1/2, was diagnosed with Celiac and casein intolerance at the beginning of Sept. She has since been gluten free and casein light (to the best of my growing knowledge). Her presenting symptoms were a distended belly, severe constipation, and irritability, and being over-emotional (even for a four year old girl How soon should we expect to see results? When is it reasonable to start cutting back on her meds (a daily adult dose of Miralax for constipation, as well as Fletcher's at night)? Her GI specialist is of no help in this area. My husband is anxious to cut back on her meds to make sure the new diet is "working" but she has had a fear of passing painful BMs in the past that can feed into the psychological issue of it all as well. What have other's experiences been? Are we talking weeks or months to see results? Particularly with the distended belly.

[AndreaB]

First of all. Have you checked to make sure her meds are gluten and casein free. Secondly, if she is intolerant to casein/dairy products it would be best to get her totally casein free. Gluten, casein and soy can all cause intestinal problems. Dairy is notorius for causing constipation.

I don't know how long it will take the distended belly to go down but I wouldn't imagine it would take long if she were gluten and casein free. After you remove casein completely, pay attention to her stools and let that guide you as to trimming back her dose of medicine. She needs fiber to help. I don't have any solutions for the stool softener. Some have posted about magnesium helping, maybe you could ask your doctor about that.

[RiceGuy]

I've found prunes to be effective, as well as apples. Just make sure she drinks enough water, especially with prunes, or any high fiber stuff that soaks up water. There are two basic types of fiber - soluble, and insoluble. You might find the info on Open Original Shared Link to be very helpful.

Do look out for casein too, as it is in all sorts of stuff. Many soy cheeses have casein, so it's really still more or less a dairy product anyway. And of course soy is another common one to cause reactions.

Hope your child gets well soon!

[Nic]

Hi, my son's symptom was severe constipation as well. It took about 3 months to start to see results. When he was still eating gluten, nothing worked to get him pooping. Once in the ER they gave him 4 enimas in one day and he still didn't poop. Even that awful drink before a colonoscopy didn't make him poop. So as far as cutting back the meds, I wouldn't yet. The fact that she is going is a good sign because them meds don't work for long if they are still eating gluten (from my experience anyway). I went to one of the best GI's in Jersey for a second opinion and he said that a child can safely stay on a laxative (fletchers) for 6 months and than must be weaned off. The stool softener (Mirolax) can be taken forever if needed, it is harmless. My son is still on the Mirolax (for almoset 2 years now) and istead of the laxative he is taking Yummi Bears fiber which is like gummy bears. I adjust the dosing according to his needs, if he is pooping well I only give him a little, if he is struggling I give him more. If I take it away he struggles. I also give him acidophilus which is a probiotic that is supposed to help him move everything along. I believe it works and can be found at the health food store. From what I understand it takes a long time to heal from constipation that is so severe because everything gets stretched out inside. Well, if I can be of any help, let me know.

Nicole

[C&M]

Hi, my son's symptom was severe constipation as well. It took about 3 months to start to see results. When he was still eating gluten, nothing worked to get him pooping. Once in the ER they gave him 4 enimas in one day and he still didn't poop. Even that awful drink before a colonoscopy didn't make him poop. So as far as cutting back the meds, I wouldn't yet. The fact that she is going is a good sign because them meds don't work for long if they are still eating gluten (from my experience anyway). I went to one of the best GI's in Jersey for a second opinion and he said that a child can safely stay on a laxative (fletchers) for 6 months and than must be weaned off. The stool softener (Mirolax) can be taken forever if needed, it is harmless. My son is still on the Mirolax (for almoset 2 years now) and istead of the laxative he is taking Yummi Bears fiber which is like gummy bears. I adjust the dosing according to his needs, if he is pooping well I only give him a little, if he is struggling I give him more. If I take it away he struggles. I also give him acidophilus which is a probiotic that is supposed to help him move everything along. I believe it works and can be found at the health food store. From what I understand it takes a long time to heal from constipation that is so severe because everything gets stretched out inside. Well, if I can be of any help, let me know.

Nicole

My 3 year old daughter had quite the distended belly as well. She did not have constipation but loose stools instead. Once she was gluten-free, the distension seemed to go down dramatically after about a week (the bacteria had nothing to feed on inside there). After about a month is when she finally got to what we are figuring is her "normal" size. She's been gluten-free for 3 months now and it's amazing to see what a different child she is. Hopefully you will notice the same results with yours.

Michelle

[Michi8]

My daughter, 4 1/2, was diagnosed with Celiac and casein intolerance at the beginning of Sept. She has since been gluten free and casein light (to the best of my growing knowledge). Her presenting symptoms were a distended belly, severe constipation, and irritability, and being over-emotional (even for a four year old girl How soon should we expect to see results? When is it reasonable to start cutting back on her meds (a daily adult dose of Miralax for constipation, as well as Fletcher's at night)? Her GI specialist is of no help in this area. My husband is anxious to cut back on her meds to make sure the new diet is "working" but she has had a fear of passing painful BMs in the past that can feed into the psychological issue of it all as well. What have other's experiences been? Are we talking weeks or months to see results? Particularly with the distended belly.

How did you get the celiac diagnosis? What clued the dr in to testing for celiac?

My son (8 yo) is being treated with Miralax (polyethylene glycol) now for chronic constipation. He's had bowel issues pretty much since he stopped breastfeeding (at about 20 months) that really became a problem earlier this year when he was passing the largest, most solid stools imaginable after a great deal of painful effort. This chronic constipation caused him to wet and soil himself, because he could no longer feel the urge to go due to the distention in his bowel. The Miralax has helped a lot, but if he does not take it regularly, he's constipated again. And he has stomach pain quite frequently. He has come home three times since the start of school this fall...in fact, he's home again today.

We just saw the paed. on Wednesday, and she maintains that it's just slow motility and he'll struggle with it for the rest of his life. I'm frustrated, because I think there is something dietary causing it. Of course, when I mention I want to rule out celiac, drs always ask if any family members have been diagnosed. No one has, because no one has suspected it. I've got a long family history of GI problems, but none of them are "classic" celiac, so of course no one's thought to test! Familial symptoms range from reflux, suspected colitis/chron's, manic depression, multiple allergies, diabetes, cancers, lactose intolerance, IBS, etc.

I brought up my son's emotional symptoms as well: sensitivity (quick to cry), lethargy, irritability. So we're going to do a blood test for thyroid, and run a celiac panel again (my celiac panel came back neg. too.)

I'm still waiting for my own biopsy...and hope that I get some clear answers so that I have "reason" to suspect it with my son (and two other kids...who have different symptoms.) My husband needs to be tested as well...he's got way too many bowel issues that aren't as normal as he thinks they are.

Michelle

[mom2two]

Michi8, your situation sounds so familar. My daughter has been on Miralax, an adult dose and a half, since shortly after stoping breastfeading at 14 months. She was tested for celiac at age 2.5 with a positive blood test and inconclusive biopsy. The Dr. at Children's Hospital told me it was not celiac at that time but simply childhool constipation and withholding. I had a newborn and accepted his diagnosis. Now two years later and having done a lot more research we had her retested with blood work and endoscopy. Again it was inconclusive but I know my child and I know this is NOT just constipation or withholding. We had her tested with Enderol Lab, a private lab that tests for Celiac Disease, and found out she did have Celiac as well as was Casein intolerant. Upon that diagnosis we have cut out all gluten and are attempting to cut out all casein. Her belly distension seems better but we are hesitent to start cutting back on her meds after only three weeks of the diet change. She is on Miralax and Fletchers Castoria and sometimes Mineral Oil. She is also very emotional, somtimes clingy. She has done amazingly well with the diet, especially for a four year old. I am going to have the blood test soon as well as my husband. We'll have my two year old tested if we see clear results from her diet change, which I hope we will. Good luck to you.

[Michi8]

Michi8, your situation sounds so familar. My daughter has been on Miralax, an adult dose and a half, since shortly after stoping breastfeading at 14 months. She was tested for celiac at age 2.5 with a positive blood test and inconclusive biopsy. The Dr. at Children's Hospital told me it was not celiac at that time but simply childhool constipation and withholding. I had a newborn and accepted his diagnosis. Now two years later and having done a lot more research we had her retested with blood work and endoscopy. Again it was inconclusive but I know my child and I know this is NOT just constipation or withholding. We had her tested with Enderol Lab, a private lab that tests for Celiac Disease, and found out she did have Celiac as well as was Casein intolerant. Upon that diagnosis we have cut out all gluten and are attempting to cut out all casein. Her belly distension seems better but we are hesitent to start cutting back on her meds after only three weeks of the diet change. She is on Miralax and Fletchers Castoria and sometimes Mineral Oil. She is also very emotional, somtimes clingy. She has done amazingly well with the diet, especially for a four year old. I am going to have the blood test soon as well as my husband. We'll have my two year old tested if we see clear results from her diet change, which I hope we will. Good luck to you.

Thanks. It's so good to know that we're not the only family going through this. I knew my son wasn't witholding either...but he would just scream and struggle with each bowel movement too. He's not classic celiac, because he isn't thin and hasn't suffered with diarrhea...the abosolute opposite instead: he's a big boned boy with healthy weight gain and growth. But he also projectile vomited breastmilk for 6 months as a baby. We're going to try an elimation diet for sure...starting with milk first. I'll hold off on gluten free until after my biopsy results.

Michelle

[Rusla]

Are you positively sure that she is totally gluten-free? Is there gluten in the house? Have you checked for hidden gluten and have you made sure all lotions, creams, shampoo's , conditioners etc are totally gluten-free? Is she in a day care when she could have contact with gluten? Gluten hides in places you would never expect to find it.

[mom2two]

Michelle, that is interesting you had problems the first 6 months as well. Our daughter was colic the first 6 months, but more like crying 5-8 hours a day and was on meds for stomach issues with gas. Now I wonder if it wasn't colic but celiac!?! She too, has not presented with "classic celiac" so we have yet to have a peds GI take her seriously. She is small but on the growth chart and we are petite people. But the amount of tearing, screaming, and pain that came with just passing a BM was NOT normal. I'm beginning to discover there is no "classic celiac"!

Rusia- I've cut all the gluten that I know to cut. I"ll take any and all hints for whatever I may have missed. I'm only a month into this "adventure". I wish there were gluten detectives that you could hire to come to your house and inspect for you. I've eliminated almost all the glutenous food from the house and the whole family eats 90% gluten free, with the exception of some bread. With that I am VERY careful with cross contamination issues, both with crumbs and condiments and the toster. I've looked at every label but being a newby don't trust myself and usually end up calling as well. I've checked her toothpaste, shampoo, and she nor anyone in the house wears lotion. She does go to preschool but I've made a special snack pack for her, she takes her own lunch which she eats on a mat that is cleaned daily, and her teachers are very clear on the fact to not feed her anything. I even taught a lesson to her class on celiac disease and how the other four year olds can be her friend and keep her safe. I can use all the help I can get though. Is there something I've missed? Is there something that people often miss that has gluten in it?

[mom2two]

It looks like she may have been getting some gluten in her. We were using a Mrs. Butterworth's syrup that we thought was gluten-free but we have been told now that it isn't Apparently they use it as some sort of thickener but you would not be able to tell by any ingredients on the label. We caught that just this week, so we feel like we have gone back to square one. Could even that little bit of gluten cause her to not really show progress? Her BM seem a little bit better now, but her bloated belly is still there, and we had been expecting to see that go down (sometimes the poor little girl looks pregnant). If she had been getting a little bit of gluten would that have caused that to not improve? What about behavior? That hasn't really improved. At times this is incredibly frustrating - it would be so nice to see just a little progress

[FeedIndy]

Yes, even a little bit of gluten can cause prevent progress, cause damage, etc. I have read in my research that for some hypersensitive celiacs even a speck of gluten can cause as much damage as eating a pizza. Luckily for us, DD's diet didn't contain a lot of gluten to begin with so cutting it out was easy. I'm just amazed at how much has improved from removing the once a day gluten she was getting.

[Nic]

How did you get the celiac diagnosis? What clued the dr in to testing for celiac?

My son (8 yo) is being treated with Miralax (polyethylene glycol) now for chronic constipation. He's had bowel issues pretty much since he stopped breastfeeding (at about 20 months) that really became a problem earlier this year when he was passing the largest, most solid stools imaginable after a great deal of painful effort. This chronic constipation caused him to wet and soil himself, because he could no longer feel the urge to go due to the distention in his bowel. The Miralax has helped a lot, but if he does not take it regularly, he's constipated again. And he has stomach pain quite frequently. He has come home three times since the start of school this fall...in fact, he's home again today.

We just saw the paed. on Wednesday, and she maintains that it's just slow motility and he'll struggle with it for the rest of his life. I'm frustrated, because I think there is something dietary causing it. Of course, when I mention I want to rule out celiac, drs always ask if any family members have been diagnosed. No one has, because no one has suspected it. I've got a long family history of GI problems, but none of them are "classic" celiac, so of course no one's thought to test! Familial symptoms range from reflux, suspected colitis/chron's, manic depression, multiple allergies, diabetes, cancers, lactose intolerance, IBS, etc.

I brought up my son's emotional symptoms as well: sensitivity (quick to cry), lethargy, irritability. So we're going to do a blood test for thyroid, and run a celiac panel again (my celiac panel came back neg. too.)

I'm still waiting for my own biopsy...and hope that I get some clear answers so that I have "reason" to suspect it with my son (and two other kids...who have different symptoms.) My husband needs to be tested as well...he's got way too many bowel issues that aren't as normal as he thinks they are.

Michelle

Michelle,

No one suspected my son as having Celiac just based on his symptoms (this was with my original ped gi). He had the distended belly, dark circles, and constipation. Due to my own ignorance at the time, I never mentioned that my dad has Celiac because I knew he had D, I didn't know that constipation was also a symptom. He had been constipated since he was 1 year old and none of the doctors thought Celiac. Once I mentioned my dad (finally ) they tested him just to rule it out. Doc said his antibodies were through the roof. Interesting how the doctors don't want to test unless there is a family history and what is the percentage of Celiacs that go undianosed? Anyway, I know with my insurance I have the right to request a specialist and the primary doc. has to give me a referral to see one. Have you been to a GI yet?

Nicole

[Michi8]

Michelle,

No one suspected my son as having Celiac just based on his symptoms (this was with my original ped gi). He had the distended belly, dark circles, and constipation. Due to my own ignorance at the time, I never mentioned that my dad has Celiac because I knew he had D, I didn't know that constipation was also a symptom. He had been constipated since he was 1 year old and none of the doctors thought Celiac. Once I mentioned my dad (finally ) they tested him just to rule it out. Doc said his antibodies were through the roof. Interesting how the doctors don't want to test unless there is a family history and what is the percentage of Celiacs that go undianosed? Anyway, I know with my insurance I have the right to request a specialist and the primary doc. has to give me a referral to see one. Have you been to a GI yet?

Nicole

No, we haven't been to a paed. GI yet. We were referred to a paediatrician at the children's hospital by our family dr...her reasoning was that it would take too long to get into see a GI directly (the waiting list is quite long) and we needed to help the C right now...so we would start with the paed, and then get referred if we really need to. Problem is that the paed doesn't think it's more than a slow metabolism, and that he'll be constipated for his whole life (meaning he'll need Miralax forever). I, of course, think otherwise, but we'll keep pursuing it! The Miralax was causing some D , so we were told to lower the dose of Miralax. Well, that just resulted in C issues again...my son says he'd rather have D than C! At this point, we've eliminated dairy to see if it helps...we're about 1 week in, and see no improvement yet (just a lot of complaining about not being able to eat cheese!) I think that it's not dairy, but it's good to rule it out.

Michelle

[Nic]

No, we haven't been to a paed. GI yet. We were referred to a paediatrician at the children's hospital by our family dr...her reasoning was that it would take too long to get into see a GI directly (the waiting list is quite long) and we needed to help the C right now...so we would start with the paed, and then get referred if we really need to. Problem is that the paed doesn't think it's more than a slow metabolism, and that he'll be constipated for his whole life (meaning he'll need Miralax forever). I, of course, think otherwise, but we'll keep pursuing it! The Miralax was causing some D , so we were told to lower the dose of Miralax. Well, that just resulted in C issues again...my son says he'd rather have D than C! At this point, we've eliminated dairy to see if it helps...we're about 1 week in, and see no improvement yet (just a lot of complaining about not being able to eat cheese!) I think that it's not dairy, but it's good to rule it out.

Michelle

Michelle,

It took me a while to read the response. How is he doing now? It is funny because when my son would get D from the Miralax he would say, "yay, Diarrhea". We are in another bout of C ourselves right now. Thought we were past it as we had 2 good months (something we haven't seen in over 2 years). Starting the end of Sept. we have gone through 3 cycles of pooping ok, to starting to back up, to no pooping for up to 6 days. Very frustrating and the GI acts as though this is "just" constipation and give him an enima if I have to. I can't imagine he has to live his life receiving enimas every week or so. I can't believe there isn't a way to stop this cycle. Maybe time for another opinion.

Nicole

[Michi8]

Michelle,

It took me a while to read the response. How is he doing now? It is funny because when my son would get D from the Miralax he would say, "yay, Diarrhea". We are in another bout of C ourselves right now. Thought we were past it as we had 2 good months (something we haven't seen in over 2 years). Starting the end of Sept. we have gone through 3 cycles of pooping ok, to starting to back up, to no pooping for up to 6 days. Very frustrating and the GI acts as though this is "just" constipation and give him an enima if I have to. I can't imagine he has to live his life receiving enimas every week or so. I can't believe there isn't a way to stop this cycle. Maybe time for another opinion.

Nicole

He's about the same. We haven't had him come home sick from school since going dairy free, but even so, he still complains of tummy aches. The doctors have told us that, with the degree of constipation and resulting problems, it will probably take about 2 years of treatment with laxatives to get his distended bowel back to normal (what ever that is!) I still think it's related to food, and will keep pursuing it.

Michelle

[azmom3]

My son also has horrible constipation and was recently put on Miralax twice a day. He used to poop every 4-5 days and then have enormous, extremely painful ones, and several in a row. He's now pooping about every other day on average, and even went every single day for 3 days in a row. It's nice that he's going, but it's huge volumes of very soft, (but not liquid), poop.

It's funny how you can look at a leaky, overflowing diaper that requires a half of package of wipes and be so happy about it.

Is this normal though for being on Miralax? He's only been on it about a week and a half or so. Does it take a while for his body to adjust? (He's been constipated for 18 months straight, with one 3 week bout of diahrrea in the middle of it.) Will he ever have "normal" BM's while on Miralax? Everything so far has been very, very soft and looks almost like sand texture mixed in it (if that makes sense). The dr. said she wants him going every day. It is nice to see him not crying and straining every time he goes, though.

[Michi8]

My son also has horrible constipation and was recently put on Miralax twice a day. He used to poop every 4-5 days and then have enormous, extremely painful ones, and several in a row. He's now pooping about every other day on average, and even went every single day for 3 days in a row. It's nice that he's going, but it's huge volumes of very soft, (but not liquid), poop.

It's funny how you can look at a leaky, overflowing diaper that requires a half of package of wipes and be so happy about it.

Is this normal though for being on Miralax? He's only been on it about a week and a half or so. Does it take a while for his body to adjust? (He's been constipated for 18 months straight, with one 3 week bout of diahrrea in the middle of it.) Will he ever have "normal" BM's while on Miralax? Everything so far has been very, very soft and looks almost like sand texture mixed in it (if that makes sense). The dr. said she wants him going every day. It is nice to see him not crying and straining every time he goes, though.

Miralax (polyethylene glycol) simply helps to pull water into the bowel, so it shouldn't affect the stool (colour or texture) other than to soften it. You can adjust the dosage if the stool is too soft or not soft enough...something you'd want to talk to the doctor about first though. We're finding that, for my son, lowering the dosage makes him go from extremely soft (sometimes runny) stools back to extreme constipation. I think we have a long way to go until we see "normal"...and I think we'll need to eliminate some food (possibly gluten) for him to really be "normal."

Michelle

[Nic]

We also have the large volume of soft poop problem. And also the problem where if you lower the dose he get backed up again. It is like this never ending circle. We actually had 2 months of "normal" poop almost daily this past summer. The only thing I changed was I added acidophilus to his diet. He takes it twice a day. Now, since September, we have re entered the world of constipation. The GI had told me that acidophilus really helps people with constipation when they first start taking it but eventually it stops working so well. I was hoping he was wrong because it was nice to have two months where his life did not revolve around pooping or not pooping. Like I said earlier, I can't believe there is not a way to stop this cycle. I have made another appointment with a doctor up at Morristown Hospital here in Jersey. They are supposed to be the best around here. We'll see.

Nicole