Questions About After Gluten Free And Poops

[LOney]

Hi there, I am hoping someone can give me some insight on what is going on here. My son was diagnosed 4 months ago with celiac, and he immediately got better. Stomach distention went down, he had tons of energy, his appetite increased, and he gained weight immediately. There have been a few slips, we think he got glutened from an old strainer, I gave him dannon drinkable yogurts that I think made him sick, and he used paper mache without my knowledge at preschool. So - we assume that is how he got sick those times. The problem is, when he gets sick, we are only noticing because his poops aren't completely normal. They seem to be bigger and not as well formed, but definitely not diarrhea. He never complains of feeling sick, and his energy level has not decreased during those times.

My question is:

How long do symptoms of being glutened last?

Can you always tell when your child has gotten something they weren't supposed to?

Do poops that are not dark and "100%" normal always mean they got gluten?

If there is something to wipe and it is light color when my son goes to the bathroom, does that mean he got gluten?

Sorry for the descriptive questions, but I am definitely new to this and don't always know what is normal.

Also - My son has a fever right now and has been taking tylenol and motrin. Do medicines ever change a child's stool? He went #2 this morning, and while it was formed it was not as solid as usual, but there was nothing to wipe. Is that normal???? I am in constant fear that he is getting glutened

Thanks and I hope to hear from someone soon!

[Ridgewalker]

How long do symptoms of being glutened last?

This varies with every person. There's really no standard. Also, some symptoms may last longer than others. (Example, for me-- the diarrhea lasts longer than the heartburn, and the fatigue lasts longer than the diarrhea.)

Can you always tell when your child has gotten something they weren't supposed to?

Sometimes it's hard, but it gets a lot easier with time. And don't be surprised if his glutening symptoms worsen the longer he is gluten-free. This happens to a lot of people.

Do poops that are not dark and "100%" normal always mean they got gluten?

Nope.

If there is something to wipe and it is light color when my son goes to the bathroom, does that mean he got gluten?

Not necessarily.

Sorry for the descriptive questions, but I am definitely new to this and don't always know what is normal.

Also - My son has a fever right now and has been taking tylenol and motrin. Do medicines ever change a child's stool? He went #2 this morning, and while it was formed it was not as solid as usual, but there was nothing to wipe. Is that normal???? I am in constant fear that he is getting glutened

Thanks and I hope to hear from someone soon!

Don't worry about the descriptive questions. In fact, the more descriptive, the better! Yes, medicines can change a child's stool-- anything they ingest can. It's another thing that is completely individual. Having nothing to wipe after a bowel movement is no cause for alarm. I call it a "stealth poop." Everyone gets those sometimes, it's no biggie.

Whatever illness or infection is causing his fever, can also cause changes in his bms. Having said that, my oldest son often gets a low-grade fever when he's glutened. Is he on an antibiotic? Antibiotics are notorious for causing loose bms.

It's not unreasonable to expect his original symptoms (that went away when he went gluten-free) to resurface when he gets glutened. They may be more or less severe, and he may get new ones. He may not be getting glutened nearly as much as you fear.

Do you think it might help you to keep a daily journal of what he eats and what his bowel movements are like for a month or so? Whether you decide to do that or not, you've just got to give yourself more time to settle into this.

And if it makes you feel any better, ALL of us parents of Celiac kids are paranoid to some extent or another! Yet another reason why these forums are so great--- so we can all talk to people who understand!

[crittermom]

The journal idea is key. If you are concerned about glutenings, keep a food journal. Write down what he eats, when, and his bowel movements. After a couple of weeks you will begin to see a trend. I used this to find gluten being the problem with my son. The dr. loved it! I also used the technique to narrow down that he had a dairy and soy allergy when he was an infant and I was breast feeding. It is a great tool. I just kept a small spiral notebook in the kitchen and at each meal or snack wrote it down. It really isn't as difficult or time consuming as it might sound! Good luck!

[CeliacMom2008]

I could've written your post 6 weeks ago! Here's what I've learned since:

I finally called the gastro about the loose stools. It was making me crazy and when we were on vacation in FL they hardened right up. I got to thinking that while on vacation he ate a lot fewer fresh veggies and fruit than at home. So we did a trial one weekend - no produce for 2 days. Yep, hardened poop. So I called the gastro and the nurse told me to relax that they actually strive for "soft serve ice cream" like poops with kids with constipation. So my son's "soft serve" was actually just fine. And of course she confirmed that lots of fruits and veggies do a great job of keeping things flowing!

I was convinced our son was being glutened regularly (if you check my posts, you'll see I suspected EVERYTHING). Two weeks ago he ate some white cheddar popcorn salt he found and thought was OK because our house is gluten-free. But in fact, I didn't know the salt was in the house and it was confirmed by the manufacturer to have gluten in it. Although I was devastated at the time, it was a valuable learning tool. We knew the exact moment the glutening occured - no guessing when or what. We then watched and learned. The fatigue started the next day we believe (although this was hard to be sure of because he'd had a friend sleep over the night of the glutening and they stayed up late and got up early). It continued for a full week. Stools got looser each day with a very watery stool (just once a day) on days 5 and 6. Mood went downhill all week. Day 6 came the awful looking and painful white blister on the tip of his tongue (which he has had only one other time in his whole life - a couple months ago when we thought he got glutened somehow). So now we have better understanding of what glutening does to him. It's so hard with so many varied symptoms between people!

If you google "bowel movements", there are some great descriptions of "normal" and "not normal" poops. I found them very helpful.

Ahhh what a group we are! Poop is such a big part of our lives we are forced to treat it like we would any other symptom or common ordinary thing. I used to worry I was going to give my son a complex because I have to "check" every morning. But how else am I to know what's going on?? He spent his whole life "abnormal". It wasn't until a few weeks gluten free that he knew what life was like without a stomach ache. I had no idea it hurt his stomach when I soaped up his stomach when he bathed! He had no idea it wasn't supposed to hurt! And he used to tell me the poop came out nice and easy. Sounds positive right? Well until you look in the toilet and see the brown water and realize of course it came out easy - it was all water!

I know from very recent and personal experience that it is really difficult to keep chasing gluten ghosts. But hang in there! It sounds to me like your son may not be getting glutened as often as you think...

[LOney]

Thank you thank you thank you Your posts are so helpful, it is so nice to be on a site where everyone knows what you are dealing with. I appreciate the idea of the food journal - I will definitely start one and TRY to keep up with it. I agree too that the poops don't always have to be the same every day. I don't have celiac disease, and mine are not the same, so why should I expect his to be ! I seem to remember the day after he worked with paper mache at preschool he complained that he didn't want to eat because he was tired. That is the one and only time he has mentioned being tired since going gluten free, and before diagnosis he would say it about 7 times a day. Maybe that is my clue of when he is glutened. It is so hard because my son didn't complain of his belly hurting - he too thought it was normal to have a hurt belly that was hard as a rock, and to have no energy. He used to whine and ask us to carry him upstairs and we never knew why.

I will remember that about antibiotics too and diarrhea. He is on antibiotics now (as of last night) because of an ear infection now. He has been stuffy for about two weeks, and just in the last couple days came down with a fever and ear infection. So - I am hoping that after this round of antibiotics, we can get him back to normal!!

I have another question in case any of you are still lurking. Do your kids have cousins close in age or family with kids close in age that live nearby? I ask only because I just assumed that my family would be very supportive of the gluten free thing, and that it would not be as easy with my in laws. Boy was I wrong. My in laws have made it so easy (although we see them very rarely) and had a birthday party for my nephew and even made his cake gluten free. My son was so excited to be able to eat the same thing as everyone else, it was so nice. My family, however, is a little different. While they say all the right things and act like they are trying to have sympathy - they don't. My nephew's birthday parties I bring another cake for my son because even though my sister tells me she is going to make a gluten-free cake, somehow that plan is dropped about 3 days before the party. Also - just on regular get togethers the boys will have hot dogs for lunch, for example, and instead of the kids all eating the same thing, my sister will make sure her son has a hot dog bun.

I am not saying that they have to eat gluten-free everytime we are around, but I guess I am just surprised. Surprised because I don't think it would kill them to have their kid eat a hotdog without a bun (he's only 4 and honestly this is the first time he has eaten a bun). Also - if you don't want to make a gluten-free cake, then don't say you are going to. I honestly don't think a 4 year old or a 1 year old would notice, and if they knew the joy my son would get out of eating a piece of cake from "the birthday cake" maybe they would think twice. I am constantly trying to put myself in someone else's shoes now that gluten free is our reality. I now know I will make every effort for someone to have a nice time at our house - and if I have to change the menu for one day to make someone happy and comfortable, I am all the more willing!

I certainly don't expect people to make exceptions, but I thought within the immediate family and with him only being 3.5 years old, people would be a bit more receptive. My son is such a trooper and doesn't complain about eating gluten free. He is so happy now, I am thrilled he is gluten free if it means he feels good. How lucky am I that the only thing different about my son is that he can't eat gluten? He doesn't have to take medicine and he won't need surgery down the road!

Sorry for the vent - I guess I am just surprised by the way my family has reacted to all of this!

Thanks again for the advice, it is so helpful!!!

[CeliacMom2008]

I completely understand what you want for your son. I have th same feelings. Let me tell you school offers up a whole new world of "being different". Every birthday party or school treat event means you're heading to the kitchen or the store in hopes that your child can at least HAVE cake, forget about it actually being the same as everyone elses. My son too has been terrific about it all. I know it's hard to be different. I wish we could make them not different, but we can't. The reality is they are different. And we do have to feed them differently. And I completely agree that we are more compassionate now that we are Celiac parents. I never gave a second thought to the girl with a peanut allergy at my son's school. Now I am very conscious of everyone's special circumstances.

As for your family, I think you need to lower your expectations and maybe change your approach. Instead of letting your sister offer to make a gluten-free cake, say "It thrills my son so much to be able to eat the same birthday cake as everyone else, do you think I could make the cake for your child's party?" This clues her into how important it is (which may or may not lead her to be more considerate) and gives you the power to make your kid's day. And it also controls the environment the cake is made in (so there's less chance of a glutening). Your sister may be afraid to make a gluten-free cake. Not for fear of it tasting different, but because she might poison your son. Or maybe she's lucky enough to never had to see her child's disappointment and she really is just clueless - not in an uncaring way, just in a "you don't know what you don't know" way.

And the kids are little now, but as they get older they could resent having to restrict their diet because of your son. I have no idea if that would really happen, but I've seen kids be pretty darn mean. And unfortunately your son is going to have to learn that his world is different. But if you have the right attitude (which it sounds like you really do) it doesn't have to be a bad world. Sometimes it's an even better world! My son was thrilled to be able to eat chocolate cake at a brithday party this weekend where the birthday cake was yellow cake. He hates yellow cake. :-) And he never liked hamburgers. Now when we have burgers I grill him his favorite - shrimp. Danna Korn suggested the "make it better" kind of thing. We do that regularly. In fact at the party this weekend they had popcorn (it was at the movie theater). He doesn't like movie popcorn. It's probably gluten free, but I asked him if he wanted me to check so he could be like everyone else or did he want to take his cheddar popcorn (cheddar it was) and the boy next to him asked if he was going to finish it or could he have some of the good stuff!

Just remember your family still loves you and your son. This is just different for them too.

Good luck!

[Ridgewalker]

I know it's hard to be different. I wish we could make them not different, but we can't. The reality is they are different. And we do have to feed them differently.

I think this is key, right here. We want our kids to not be different, and not feel bad about the disease. The thing is- those are really two different things. The facts can't be changed. Celiac kids have to eat different foods than other kids. It stinks, but it is not the end of the world. I feel like the sooner our kids accept that comfortably, the sooner they will not feel bad about having Celiac.

I know there are parents here who disagree with me on this, but I feel that covering up the issue by always making sure our kids eat the same thing as other kids just confuses things and drags out the adjustment period.

Don't get me wrong- I always make sure my kids have great things to eat on outings and visits. If somebody grills burgers, I bring gluten-free buns. If there will be a dessert, I bring a gluten-free dessert. But it's not necessarily the same dessert other people are having. I do not go crazy trying to match the entire menu.

These kids really need to know that there are foods out there that they must avoid, even if their best friend is eating it right in front of them. I think that learning this early can only help avoid trouble when they get older, and peer pressure really kicks in.

This is a major reason why diagnostic methods need to be improved. The younger that kids are diagnosed, the easier it will be for them to adjust.

Whenever we go to someone's house, I consider it a given that we're going to have to take food. The only time I don't, is when we go to my mom's (she has Celiac, too.) My mother-in-law has been extremely supportive, has done a lot of reading and questioning me about safe foods and cross contamination, and usually the only thing I need to take to her house is bread.

I do often use the "make it better than" method. A couple weeks ago, my older son's school had a Heritage Day. All these school functions involve food, and there were two items he couldn't eat-- handmade bread, and banana pudding. I sent a gluten-free chocolate pudding cup and a chocolate chip muffin for him to have instead.

Also, as time goes by, you'll develop a list of dependable on-the-go snacks and easy-to-carry food that you'll use often. Extra work, yes, but it will become less of a big deal.

Having said all that, there will still be snags in the future. The hot dog bun incident irritated you, and I don't blame you. At the last party I had, I made sure there were plenty of gluten-free crackers and corn tortilla chips for the dip, but my own best friend brought a roll of Ritz crackers for herself because she knew I wouldn't have any. It annoyed the crap out of me at the time, and I told her to watch her crumbs!

[LOney]

Thanks again for the responses. I totally agree with both of you. On the one hand I feel like my sister should be a bit smarter and just "get it" and try to make an effort. On the other hand, I also know that my son is going to have to get used to it, so we should dig in and get started. I have already started the idea of letting him know that his food is better - not just because he gets special treats sometimes, but also because he is so lucky he has so many things he can eat that don't hurt his belly. He is fully aware of what is going on - when he sees someone eating something that he either doesn't recognize or knows it isn't good for him, he will look at it, and then at me. Sometimes he will ask, other times he will continue on with what he is doing. It is a tough balance trying to make him see that he will always get good food that mom makes or brings, but yet try to make him realize "it is just food".

I guess my thought is that he should be comfortable at least at his relatives house. I will always look out for my son no matter where we are, but I at least thought that we could count on the family to support him and make it a "non issue". I think it is all still so new to me that little things irritate me. The ritz cracker thing would irritate me too, and the hot dog bun really ticked me off. But - my son doesn't make it an issue so why should I. I have never said anything to them, just vent to my husband and now to you guys!

I have started just asking my son what he wants me to bring instead of trying to match what everyone else is having. I am glad to hear that others do the same. I think this way is definitely better, and glad to hear it works for your kids.

Thanks again for the tips and letting me know what works for you!

[CeliacMom2008]

Looney,

We all sound so strong and wise right now, don't we? Well rest assured we'll need you to help us through a tough time, a sad time, a mad time or whatever down the road. I've learned that being a Celiac mom has a lot of ups and downs. Coming here is an awesome way to make it through both!