My Son Is Having Problems.

[Ridgewalker]

Hi. I'm new here and a little nervous about posting. I have 2 sons, ages 4 and 6. It's my 6 yr old that I'm primarily concerned about right now.

When he was born, he immediately became jaundiced, and his Dr suggested putting him on formula because my milk was taking forever to come in. (I let them do this, and ended up pumping for a couple weeks to give him as much as I could. I was young and didn't know much.) The day after he was born, he started gagging and retching, and they ended up suctioning his stomach when he was less than 24 hours old. It only happened a couple more times after that.

After a couple weeks, the jaundice resolved itself, but then a couple weeks later he began having severe diahrrea, pure liquid that would soak right into the diaper. This was about the time my milk started drying up and he started drinking more formula than breast milk. I took him to the family doctor, who said he was probably lactose intolerant and we should try soy formula. We tried him on ProSobee, and it took a few weeks, but the diahrrea (and painful bloating and gas) gradually subsided. After his 1st birthday, we gradually re-introduced dairy, and he didn't seem to have a problem with it.

Fast forward a couple years-- He was what we've always called "a difficult potty trainer." To be frank, he had poopy accidents every day. AND STILL DOES, almost every day. It's extremely sticky, and grainy, darkish in color, though. The smell is appalling. We've tried everything, from rewarding him when he makes it to the potty, to loss of priveleges when he doesn't (It's only been recently that I've considered this may be a medical problem.) Nothing works. I ask him why he poops in his pants, and he either says "I don't know," or most often-- "I didn't know I had to go."

Two years ago, he began getting sick a lot, chronic ear infections, sinus infections, several cases of bronchitis. Also, Strep, pink eye, stomache bugs, you name it, he picks it up like a magnet. He never got sick much before that. His 1st dentist appointment was horrifying to me-- he had 12 cavities, Even though we brush every day without fail, limit sweets, and stress good dental habits.

This year we have noticed his mood has changed some, he has a shorter fuse, and isn't listening or minding as well. He also looks tired often, pale face, dark circles.

I never would have considered Celiac Disease, but my mother was diagnosed with it last December. She's apparently had it for years and years, but she became much, much more severely symptomatic suddenly in the fall. So, Celiac is in our family.

I'm sorry for this post being so long... I can't afford to have him tested. We don't have insurance, and I know insurance doesn't always cover it, and the tests aren't always accurate either. It is almost summer vacation. I think I'm going to do a gluten-free trial for him. It won't be easy. He adores bread, crackers, mac and cheese. Please... if any of you have any thoughts on his symptoms, I would be so appreciative.

-Sarah

[Guest jokamo]

Ridgewalker,

Hi and welcome to the board. I am also very new to this and I am sure that someone will chime in soon to give you some info or opinions. It can get pretty quiet around here sometimes, but I'm sure someone who has alot more experience than me will reply to you soon! I'm so sorry to here that your little one is having so many problems.

Jodi M.

[dionnek]

It does sound like it could be celiac, and since you can't do the testing now trying the gluten-free diet over the summer sounds like your best option. Just remember if you do want testing in the future, he will have to be eating gluten (except for the genetic test - you don't need to be eating gluten for that).

You can get rice pasta (Tinkyada, Orgrans, several other brands) or corn pasta or even quinoa pasta at Whole Foods or any health store, or online (amazon has gluten free foods and they are much cheaper). He won't miss pasta - it tastes just as good. I make mac and cheese with the rice pasta and velveeta and a little milk. Many lunch meats/hot dogs are gluten free. Bread is trickier - I haven't found a good premade bread yet, and whatever you do buy must be kept frozen and toasted before eating. The Gluten Free Pantry has a good mix, and a lot of people here make the Pamela's bread mix (I haven't tried it). I just bake it in the oven (no bread maker) and the GFPantry one turns out great. Also breads by Anna are wonderful, but very expensive. I tend to eat more corn tortillas and rice cakes now instead of bread.

There are several cereals in the grocery store that are gluten free (always read labels though b/c they can change at any time). Fruity Pebbles, Cocoa Pebbles, Dora, Little Einsteins, MIcky Mouse Clubhouse, and I think Trix is recently gluten-free (check though). Rice Krispies are NOT gluten-free (they have malt in them) and neither are regular corn flakes (they do make gluten free brands though - again, I order these on amazon and it is a lot cheaper). There are many decent gluten free crackers/cookies/snacks, and yogurt/pudding/fruit/veggies are mostly gluten free (read labels).

Good luck and keep reading here - you will learn more than anywhere else!

[lonewolf]

Welcome to the board!

You might consider having your son tested through Enterolab ( www.enterolab.com ). Their stool test is only $99 and might be worth the money for you. It also sounds like he might have issues with dairy, which you might also want to try eliminating for the first several months.

Honestly, it's hard for most people, especially a child, to stick with a restricted diet without some type of testing. But it isn't mandatory. Hopefully the gluten-free trial will work wonders and be your answer.

Please stick around and ask lots of questions. People here are very helpful and would love to assist you in getting your son gluten-free.

[Guest maddiesmom]

We found out my daughter has the celiac gene about a month ago and she has been gluten free for about three weeks and I can tell a world of difference... she also has some of the probelms your son has.. pink eye, sinus infections and every time she got a stomach virus she would end up in the hospital for dehydration. I don't know if there is much of a difference in having the gene and having full blown celiac but I know this diet has helped her. I would try it and see.. it can't hurt. We mainly eat more veggies, fruits and lean meat and seafood now. I don't spend that much more on "special foods" and the money we are saving from eating out I put toward the g.f. foods. I am no expert and I am sure there are more people here who know more than I do but I would try him on it and see. After 2 years of seeing her in pain because her belly hurt and trying everything.. no diary, more fiber, veggies, fruits different meds.. we have seen more improvement from this.

[shan]

poor you, and poor son, he must feel so bad every time he dirties himself! My daughter (2) has been on the diet now a few weeks, and she is so much happier! she doesn't miss all her favorite stuff, although at hte beginning , we tried to give her a match for what we are eating. now already, at her daycare, she understands, and she doesn't even try! she also knows what will happen if she does eat it!! Your son is 6, and once he feels better for a few weeks, he won't even miss his old stuff - he knows what will happen and he'll be a happier child for it - he'll have more friends and so on. It is hard at the beginning and you think you have to get all g.f. stuff from the shop, but in the end, you just go healthier and stick more to the fruit and veg, and cut out all the cookies and cakes!! good luck!!

[Ridgewalker]

Thank you so much, for all your caring comments and suggestions. It means a lot to me. Lonewolf, I'll check out Enterolab; $99 is do-able.

Shan, you really hit on it when you said he must feel bad when he has these accidents. This has been going on for 3 1/2 years now, and it's gotten to the point where when it happens, he hides it for as long as he possibly can (until someone catches on to that wretched odor.) If I ask him if he's had an accident, he'll lie. It's become this horrible complex, and that's my fault.

I feel so STUPID. Why didn't I realize before now that this is some kind of medical problem? He doesn't lie about ANYTHING except this. We (his father and I) have said he gets too busy playing and doesn't want to stop to go to the bathroom. It is a common problem while potty training, but he's six and a half now-- why didn't I realize something else was going on? And I would yell at him when it would happen, just thinking, if he would just it through his head that he's not supposed to do that....

For months now... we'll get through the day, and then at night, when everyone else is asleep, I cry, thinking: I've been too hard on him, why does this keep happening... why does he get sick so often, should I have kept him home from school again...

My husband thinks I keep our son home too much, and the school has been climbing my back for it all year. But I can't send him when he's got and ear/sinus infection or is contagious. And if his stomache feels bad, I keep him home too-- because he has these accidents and I don't want them to happen at school!!!

It's already happened a few times. One of the times was bad. Really bad. He had diarhea 3 or 4 times in the bathroom. I was already on my way to come get him. Then he had diarhea again, all over himself this time. He's only in kindergarten. He had thick jeans on, but the other kids smelled it and made typical snotty comments... Eww, you stink, etc. I'm crying again thinking about it. There are so many laws about teachers being in a bathroom with your kid now, that he had to attempt to clean himself up. The teacher gave him wipes and fresh clothes, of course, but he's a little kid! By the time I got him home, it was dried-- all over, from his waist to his feet, and his skin was all red.

It's happened other times at school, and I don't find out about it until he gets home. He manages to hide it well.

I know I got long-winded again, I guess I need to vent. I'm feeling bad. Bad for my son. Bad that I was dumb for so long-- not paying enough attention, or not giving him enough credit, or just not THINKING. I don't know.

[Belinda Meeker]

Thank you so much, for all your caring comments and suggestions. It means a lot to me. Lonewolf, I'll check out Enterolab; $99 is do-able.

Shan, you really hit on it when you said he must feel bad when he has these accidents. This has been going on for 3 1/2 years now, and it's gotten to the point where when it happens, he hides it for as long as he possibly can (until someone catches on to that wretched odor.) If I ask him if he's had an accident, he'll lie. It's become this horrible complex, and that's my fault.

I feel so STUPID. Why didn't I realize before now that this is some kind of medical problem? He doesn't lie about ANYTHING except this. We (his father and I) have said he gets too busy playing and doesn't want to stop to go to the bathroom. It is a common problem while potty training, but he's six and a half now-- why didn't I realize something else was going on? And I would yell at him when it would happen, just thinking, if he would just it through his head that he's not supposed to do that....

For months now... we'll get through the day, and then at night, when everyone else is asleep, I cry, thinking: I've been too hard on him, why does this keep happening... why does he get sick so often, should I have kept him home from school again...

My husband thinks I keep our son home too much, and the school has been climbing my back for it all year. But I can't send him when he's got and ear/sinus infection or is contagious. And if his stomache feels bad, I keep him home too-- because he has these accidents and I don't want them to happen at school!!!

It's already happened a few times. One of the times was bad. Really bad. He had diarhea 3 or 4 times in the bathroom. I was already on my way to come get him. Then he had diarhea again, all over himself this time. He's only in kindergarten. He had thick jeans on, but the other kids smelled it and made typical snotty comments... Eww, you stink, etc. I'm crying again thinking about it. There are so many laws about teachers being in a bathroom with your kid now, that he had to attempt to clean himself up. The teacher gave him wipes and fresh clothes, of course, but he's a little kid! By the time I got him home, it was dried-- all over, from his waist to his feet, and his skin was all red.

It's happened other times at school, and I don't find out about it until he gets home. He manages to hide it well.

I know I got long-winded again, I guess I need to vent. I'm feeling bad. Bad for my son. Bad that I was dumb for so long-- not paying enough attention, or not giving him enough credit, or just not THINKING. I don't know.

[Belinda Meeker]

I know where u r coming from my son missed tons of school cuz all the kids made fun of his "gas" and frequent potty breaks....so my suggestion is before he gets to old and drops out of school like my son did maybe check into Home Schooling they have great sites for this now and we wish we would of known and not put my son through all the fun making the kids did to him while in school here is a name of where we turned to James Madison Highschool they may know more wht for u to do......I feel for ur little guy, been there done that so let me know if u need more venting I'm here to listen for ever concerned Bea

[confusedks]

hey,

i am not a mom, but i am a young adult and i see my mom go through this with feeling so bad about everything i have been through with my health. i have had such severe anemia, and other symptoms (TOO MANY TO LIST!!!) and the good news is that he is only 6. so if he does have celiac, it can pretty much taken care of with a gluten-free (gluten free) diet. and dont feel bad about it, you are doing what you can and personally id be more upset with the doctors. i have had symptoms my WHOLE life and not until about 4 months ago did we realize that i may have celiac. i found out today tho that having the stool test at enterolab (i know you said you cant afford it, but just in case you thought about it) does NOT diagnose celiac. it tells you if you have a gluten intolerance, NOT CELIAC!!! big difference... so, keep venting on this site...its helpful.

I also really understand the missing school thing...i have been back at school after being absent for 7 weeks and i still can barely make it through an entire day. i have faith it will get better tho.

Kassandra

[shayesmom]

Ridgewalker,

I don't think that there's a single parent on these boards that doesn't understand the guilt that you speak of. We've all been there with our kids. I also basically had to self-diagnose my daughter and the diet worked beautifully within 24 hours. Up until then I thought that my child was extremely hyper, had no attention span and was impossible to put to sleep. All those things changed the first week of being gluten-free. So don't be afraid to try it.

You may want to sit down with your son and explain to him that you want to do this diet to see if it helps him. If it does....trust me, he will not care about a "formal" diagnosis. He will do what it takes to remain accident-free.

I understand your need to follow up with this via non-traditional routes (no testing). However, I would highly recommend that you see your child's pedi or GP before starting this diet. Explain your situation and tell him/her that you want to do a dietary trial to see if your son is gluten-intolerant. Ask the doctor if he/she would help you in this matter when it comes to school should your son turn out to be gluten intolerant. That way, you can and will have medical documentation of the problem for the school and it will help in keeping him gluten-free once summer vacation ends.

As for Enterolab....I'd be in favor of it...but I think that the dietary trial would be adequate in your situation. The previous poster was correct in that those tests do not diagnose Celiac. They do tell you if you have gluten intolerance or sensitivity. But I fail to see what the "big difference" is over the long-term? Both require the same treatment in order for symptoms to get better. And having a diagnosis of celiac disease on your record often just makes it more difficult to find medical insurance (due to pre-existing condition). I personally prefer not having the official label.

Good luck with your son! I hope you find the answers you seek for both your sakes.

[Annie/NM]

I really feel for you. My own son is only 4 1/2 but has been diagnosed for a year now. He was such a sickly kiddo. He had asthma, pink eye, ear infections etcc..............all the time. They thought he had leukemia he was so sick all the time, bruised easily had dark circles etc.............He refused to eat most of the time and had diarhea 6 times a day. He is doing great on the diet and feeling good now. Compeltely different personality. Our only problem is he still is not fully potty trained. He is on Miralax because he gets really constipated and then has leakage problems. We are desparately trying to figure out the right dose of medicine and how to train him. He can't have accidents at his new preschool next year and freaking out a alot! This potty training is stressing me out since we've been doing it for 2 years, and I'm sure your son being 6 has made it even more stressful. I would definitely try the diet and see what a difference it makes. But my son and another 4 year old I know with Celiac's have still been struggling with the poop issues and potty training. Does anyone have any ideas or similar situations? We are even seeing a behaviorialist to help us train him. We are still struggling!

[gfgypsyqueen]

Sorry to hear you are going through all these problems. The guilt is just part of having kids with these kinds of issues. I believe other foods are affecting the kids besides just gluten-like that isn't enough! My oldest also was very hard to potty train when it came to poop. Got very constipated, then it hurt, then she would hold it. Created a huge mess. And yes we tried the rewards, punishments, yelling, screaming, you name it and we tried it. We eventually realized that when she ate alot of milk she got worse. SO after one particularily bad episode, I said no more milk. PERIOD. After a few weeks, she had no more poop problems. None. She goes easily, no crying, no complaints, no tummy aches, no fights, and no more mess in the pants. She now gets milk at school with her lunch and occassionally yogurt, but that is it.

for us removing the milk products made all the difference. Maybe keeping a food diary and watching what they eat a lot of would indicate what their bodies just do not handle well.

[Ridgewalker]

Wow... it's amazing how much some of your children sound just like my son. It's kind of eerie to me. As Shayesmom suggested, I sat down with Lucas and talked with him about a gluten-free diet. Since my mom has Celiac, he has some experience with it, knows Grandma sometimes eats different foods, etc.

There were a few frowns on his face (such as when I talked about McDonald's and Pizza Hut,) but all in all, it went very well. I explained to him that we can experiment with new kids of pasta and crackers to replace the old kinds. I made sure to also emphasize his favorites that are naturally gluten-free. He's such a good kid, his end reaction was "Well there's still tons of good stuff I can eat!" Yeah, we may have an incident here and there, but I don't think he's going to give me much trouble over the diet, especially if it helps him!!!

I have been letting family and close friends know that Lucas will be starting the diet next week, and everyone has been amazingly supportive of the plan. I had a conference with his teacher yesterday. Yeah there's only a few days left to the school year, but Luke loves her, and I wanted to let her know what's going on. As soon as the words "trial period gluten-free diet" were out of my mouth, an Ah-ha look came onto her face, and she nodded almost like she'd expected it! She's been a teacher for 30 years, and has been fabulous with my baby and all his absences.

And my (Celiac) mom immediately brought over a bunch of Bob's Red Mill chocolate chip cookie mixes. Grandmas and thier cookies! (I've tried those cookies, by the way, and they're awesome.)

He and his little brother are both already addicted to EnerG's gluten-free pretzels, which my mom got them hooked on. He's also a big fruit and veggie eater, and with having my mom to refer to, I feel very lucky about the practical aspects of him going on the diet. Now I just hope it works!

I'm trying to let go of the guilt stuff. It's hard.

[mamaloca2]

"Fast forward a couple years-- He was what we've always called "a difficult potty trainer." To be frank, he had poopy accidents every day. AND STILL DOES, almost every day. It's extremely sticky, and grainy, darkish in color, though. The smell is appalling. "

This is EXACTLY my daughter. I took her off gluten and within a few weeks she was back to normal. Her expensive blood tests came back negative, but when she went back to eating gluten the symptoms immediately returned. So I took her off again and she seems to be getting better again.My nutritionalist said that she could still have Celiac, despite the negative blood test because sometimes it doesn't show up in kids. He said she could be gluten-intolerant instead, which basically acts just like celiac, but will not show up in the IgG, IgA, ect..blood test. He is having a "cytokine"test (I think thats what it is), it's allergy testing basically, but he says this should show if she is gluten intolerant and test for other food allergies. This test is 350 bucks though-cash. My insurance doesn't cover it, but I figure it's worth it with all the worry and taking this food and that food out of the diet. If your son is suffering that much, it would be worth at least trying the gluten-free diet, for sure. Good Luck!

[mamaloca2]

I really feel for you. My own son is only 4 1/2 but has been diagnosed for a year now. He was such a sickly kiddo. He had asthma, pink eye, ear infections etcc..............all the time. They thought he had leukemia he was so sick all the time, bruised easily had dark circles etc.............He refused to eat most of the time and had diarhea 6 times a day. He is doing great on the diet and feeling good now. Compeltely different personality. Our only problem is he still is not fully potty trained. He is on Miralax because he gets really constipated and then has leakage problems. We are desparately trying to figure out the right dose of medicine and how to train him. He can't have accidents at his new preschool next year and freaking out a alot! This potty training is stressing me out since we've been doing it for 2 years, and I'm sure your son being 6 has made it even more stressful. I would definitely try the diet and see what a difference it makes. But my son and another 4 year old I know with Celiac's have still been struggling with the poop issues and potty training. Does anyone have any ideas or similar situations? We are even seeing a behaviorialist to help us train him. We are still struggling!

You may want to ask the doctor about possible damage to his intestines. Long term diarrhea/constipation can damage the smooth muscle and he may not have much control over his bowels. Be patient with him, as I am sure it is embarrassing for him. Maybe look into pull ups just for school at least, until you get the problem under control.

[johalex]

"Fast forward a couple years-- He was what we've always called "a difficult potty trainer." To be frank, he had poopy accidents every day. AND STILL DOES, almost every day. It's extremely sticky, and grainy, darkish in color, though. The smell is appalling. "

This is EXACTLY my daughter. I took her off gluten and within a few weeks she was back to normal. Her expensive blood tests came back negative, but when she went back to eating gluten the symptoms immediately returned. So I took her off again and she seems to be getting better again.My nutritionalist said that she could still have Celiac, despite the negative blood test because sometimes it doesn't show up in kids. He said she could be gluten-intolerant instead, which basically acts just like celiac, but will not show up in the IgG, IgA, ect..blood test. He is having a "cytokine"test (I think thats what it is), it's allergy testing basically, but he says this should show if she is gluten intolerant and test for other food allergies. This test is 350 bucks though-cash. My insurance doesn't cover it, but I figure it's worth it with all the worry and taking this food and that food out of the diet. If your son is suffering that much, it would be worth at least trying the gluten-free diet, for sure. Good Luck!

Oh yes, this was my son! In fact, he still has the occasional bm accident and he is 8 now. He has both Celiacs and Dairy intolerances, and the dairy will often cause this too if he ingests some. I assure you that testing is the way to go, our GI doc did ours and we have never looked back. He is so much healthier and I am thankful we were able to work on the accidents. It is very hard for a child to deal with the shame of that, so the earlier you can find out if there are food allergies, the better.

[Teacher1958]

Hi Sarah,

I have some ideas here that might shed some light, as I have had symptoms for 42 years and just recently went on a gluten-free diet. First of all, I have been absolutely amazed that normal digestion is a quiet process. For 42 years, I have always felt some type of background discomfort, turbulance, or outright pain after I ate. Also, I have had constant gas all the time my entire life. Now that I am gluten-free, I am finding that when my tummy starts to rumble and the gas begins, this usually means that I need to go # 2 (sorry, I'm a teacher). My speculation is this: Your son is probably having a very hard time distinguishing between the pain/gas that is there in the background all the time and the pain that signals that he is ready to have a BM. He probably just isn't mature enough to make the distinction. Another possibility is that he is holding back his BM's to avoid more pain. For me, when the intestinal symptoms got really bad, it would progress from mild pain over the course of a half hour to an hour, then the cramping would increase with each BM until I was doubled over. To a child, this could easily translate into, "If I go to the bathroom and have a BM, it's going to start hurting worse, so if I hold it in, I can stop it." Of course, eventually, he loses voluntary control, and the body just does what it does. My own son, who didn't have any gluten-related symptoms, would not have a BM at school, because he was just too embarrassed. He kept having small messes in his pants because he could hold it only so long before the body just let go. Hope this helps.

Brenda