Sacred That They Might Have Celiac - Newbie Here

[mykidsmommy]

Hi everyone -

new to this forum and to this whole situation. I have a 2 1/2 year old daughter and an 11 month old. Long story short, the oldest is about 35 inches tall and 28 pounds. She has always had what I call mushy stools. She was exclusively breast feed and then went to the jarred veggies and fruits that babies eat, and eventually the "real" table food. Her stools were never very formed at any stage in her life - She has always had soft to mushy stools, either brown, brownish/orange to greenish, and she has BMs from 3 to 5 times a day (very, very rarely will she poop during the night). My ped does not seem to think anything is wrong but I have a 1st cousin on my father's side that has celiac. that is always in the back of my mind (I just ordered the Enterolab complete panel for her and I'm awaiting the results because I can't stand it anymore). Since i'm a stay at thome mom and always changing the diapers, I'm constantly thinking of this.

Maybe some of you can help me - is it common to stool more frequently when you have celiac disease or not - I can't seem to get an answer - I see that some people actually seem constipated! I wouldn't consider the majority of these stools to be bulky or very foul smelling but occasionally they'll cover an entire diaper and be rank. I have dumped some into the toilet and they don't float. For the past 2 weeks I have done my best to keep her gluten free but I have not noticed a change in her BMs. She is going to a ped. gastro on Sept. 25th so should I put her back on the grains now in case the dr. orders bloodwork?

The other case which has me even more concerned in my 11 month old. Unlike my oldest, she has always had very formed stool and she was/is exclusively on breastmilk up to this point in her life. At the end of July I started introducing the staple cheerio and cracker snacks and some Zweiback toast. Well, her stool has completely changed - which has me worried. It has gone from formed to very mushy and somewhat bulky. We haven't gone to green yet but brownish to yellowish/orangish - etc. I realize that some of the color may be due to the foods I'm introducing into her diet but I have actually cut out all gluten for her as well (easier to do with her because she'll eat anything in front of her - unlike my oldest who is very, very picky). It seems to have gotten worse with the youngest - in the past 2 days she has had the bulkiest BMs and they stink - in fact they smell almost sweet in a way. Since she is so little, she does poop during the night and this morning last nights poop was almost leaking out of her diaper. Since she hasn't had gluten that I know of, i'm wondering where this is coming from!!

Any recommendations on what to ask the dr. when the youngest goes in for her 1 year check in 3 weeks. Should i resume the grains with her as well? they are not in daycare but they do play with other neighborhood kids and of course my oldest can't keep her hands off the youngest and thoes hands get into strange places - could these be symptoms of a parasite infection like giardia (or however it is spelled?) can you have these parastic infections ofr a long time?

Thanks for any advice or insight.

Immy

[Ridgewalker]

Hi everyone -

new to this forum and to this whole situation. I have a 2 1/2 year old daughter and an 11 month old. Long story short, the oldest is about 35 inches tall and 28 pounds. She has always had what I call mushy stools. She was exclusively breast feed and then went to the jarred veggies and fruits that babies eat, and eventually the "real" table food. Her stools were never very formed at any stage in her life - She has always had soft to mushy stools, either brown, brownish/orange to greenish, and she has BMs from 3 to 5 times a day (very, very rarely will she poop during the night). My ped does not seem to think anything is wrong but I have a 1st cousin on my father's side that has celiac. that is always in the back of my mind (I just ordered the Enterolab complete panel for her and I'm awaiting the results because I can't stand it anymore). Since i'm a stay at thome mom and always changing the diapers, I'm constantly thinking of this.

Maybe some of you can help me - is it common to stool more frequently when you have celiac disease or not - I can't seem to get an answer - I see that some people actually seem constipated! I wouldn't consider the majority of these stools to be bulky or very foul smelling but occasionally they'll cover an entire diaper and be rank. I have dumped some into the toilet and they don't float. For the past 2 weeks I have done my best to keep her gluten free but I have not noticed a change in her BMs. She is going to a ped. gastro on Sept. 25th so should I put her back on the grains now in case the dr. orders bloodwork?

The other case which has me even more concerned in my 11 month old. Unlike my oldest, she has always had very formed stool and she was/is exclusively on breastmilk up to this point in her life. At the end of July I started introducing the staple cheerio and cracker snacks and some Zweiback toast. Well, her stool has completely changed - which has me worried. It has gone from formed to very mushy and somewhat bulky. We haven't gone to green yet but brownish to yellowish/orangish - etc. I realize that some of the color may be due to the foods I'm introducing into her diet but I have actually cut out all gluten for her as well (easier to do with her because she'll eat anything in front of her - unlike my oldest who is very, very picky). It seems to have gotten worse with the youngest - in the past 2 days she has had the bulkiest BMs and they stink - in fact they smell almost sweet in a way. Since she is so little, she does poop during the night and this morning last nights poop was almost leaking out of her diaper. Since she hasn't had gluten that I know of, i'm wondering where this is coming from!!

Any recommendations on what to ask the dr. when the youngest goes in for her 1 year check in 3 weeks. Should i resume the grains with her as well? they are not in daycare but they do play with other neighborhood kids and of course my oldest can't keep her hands off the youngest and thoes hands get into strange places - could these be symptoms of a parasite infection like giardia (or however it is spelled?) can you have these parastic infections ofr a long time?

Thanks for any advice or insight.

Immy

I haven't been around nearly as long as some other people here, but I do have a few thoughts... I see that you're doing both Enterolab stool testing and a Ped GI who may do blood work. I know that stool testing is supposed to be far more accurate than the blood test, from what I've read. I've read that stool testing can detect gluten intolerance even if the patient has been on a gluten-free (gluten-free) diet for a while. Blood tests on the other hand, absolutely require that you do NOT cut out gluten. The fact is that blood tests can give back false negatives even when you ARE eating gluten, and this is even more likely to happen with small children!

As for the baby, changes in stool, above and beyond color, are the norm when you introduce new foods. However- the smell you described SOUNDS similar to what I encounter with my 6 yr old when he gets glutened. It's a terrible, sickly sweetish smell. Sometimes it is a little vomitty smelling. Also- does she poop during the night frequently? In my experience (I have a 6 yr old and a 4 yr old), this is very rare once nighttime feedings are phased out. I might be wrong, ask other moms about this too, but frequent nighttime poops (even once per night) seem odd to me if she's not eating during the night anymore. BTW- if she is getting bad rashes from sleeping in poop before you catch it, I highly, highly recommend Aveeno bath powders, which you actually add to the bath water, and Aveeno Diaper Cream. I went through them ALL with my boys, and Aveeno worked the best, by far. Also watch for broken skin in a diaper rash, which often indicates a yeast infection (common from sitting in a poopy diaper, and very common with Celiac kids.) I had this problem several times with my younger son... one more reason why I'm trying to convince their father that BOTH kids need to on a gluten-free diet.

Yeah, celiacs can have constipation as a symptom, among lots of other things. Before he went gluten-free, my 6 yr old did not have crazy diarhea (although he does now if he gets glutened!) It often did have the smell though, and he would have poopy accidents pretty much every day, because it would come on so fast. It would often be thick, pasty, almost sandy in texture. (Like most parents here, I can discuss poop anytime, I am a poop afficianado! )

Going 100% gluten-free is hard to do, I've been struggling like crazy to "get it right." There's so many opportunities for cross contamination, crumbs on the counter, in the toaster, fridge, or microwave, pots and pans, utensils, collanders. Between that, and the body needing time to heal, it took a good month for my son to be feeling completely symptom free.

I've rambled on too long... Bottom line-- lots of people try the gluten-free diet first, then do testing "sometime later," which is what I've done. Others want to do testing first, but if you're going to do blood tests, they need to go back on gluten.

If you want more info on going 100% gluten-free, and tips on avoiding cross contamination, etc, this message board is the best place to be.

-Sarah

[mykidsmommy]

thanks so much for your response. The 11 month old does poop during the night almost every night; I am certain that could be a sign of something but she has not eaten during the night since 5 months old and she still pooped during the night several times a week while she was just on breastmilk. It was always formed so again, i thought it was GREAT compared my older one who was always runny from birth.

I guess I will just resume a "normal" diet with gluten b/c I'm sure the gas.ped. will want bloodwork on my oldest and then a week later we are to the ped. for my youngest for her 1 year . I may try to get the specialist to address my youngest while I am at that appointment and get an order for bloowork for her - some drs will do that, others just won't (see 2 patients at the same time, essentially).

Any tips on what to specifically ask for I'd appreciate. My husband is really on the fence with this because he doesn't want them subjected to invasive tests (i.e., the biopsy) at this age. But I feel like we need to explore this.

Thans again!

[Ridgewalker]

thanks so much for your response. The 11 month old does poop during the night almost every night; I am certain that could be a sign of something but she has not eaten during the night since 5 months old and she still pooped during the night several times a week while she was just on breastmilk. It was always formed so again, i thought it was GREAT compared my older one who was always runny from birth.

I guess I will just resume a "normal" diet with gluten b/c I'm sure the gas.ped. will want bloodwork on my oldest and then a week later we are to the ped. for my youngest for her 1 year . I may try to get the specialist to address my youngest while I am at that appointment and get an order for bloowork for her - some drs will do that, others just won't (see 2 patients at the same time, essentially).

Any tips on what to specifically ask for I'd appreciate. My husband is really on the fence with this because he doesn't want them subjected to invasive tests (i.e., the biopsy) at this age. But I feel like we need to explore this.

Thans again!

Have you looked at some symptom lists for Celiac? Poring over symptoms lists always made me crazy, and yet, they helped and this is why-- My 6 yr old's constant poopy accidents are what initially made me look at Celiac (like you, I have family members who are Celiacs,) but once I started researching it, I found out that he was actually exhibiting other symptoms as well that I hadn't thought of. This may help you decide if the nighttime poops are significant. And like I said, ask other moms (and I will too.) You don't necessarily have to go into a long drawn out story-- just ask something like, "Hey how long did your babies poop during the night?" Moms love you talk about their kids, you'll probably get more detailed answers than you need!

Have your husband look at the symptom lists, too. Maybe after you look at them and get a chance to think them over. I can understand his unwillingness to put the kids through invasive testing, but hey it's not like it's on your top ten list of fun things to do either! In fact, that's one of the reasons I decided to do a trial run with the diet first (which worked so amazingly well, that no one could deny it.)

Let me tell you right now, that you are SMART for paying attention to these things now. Lucas had accidents in his pants for 3 years before I decided that the problem was physical. Boy did I feel like an idiot. Sometimes when you're in the middle of a situation, it's hard to see clearly. Remind your husband that although no one wants to jump at shadows, you'd rather be safe than sorry when it comes to the kids. Undiagnosed Celiac can cause so many problems over the long term, such as anemia, malnutrition, osteoporosis, other autoimmune disorders, and even some types of cancer.

As for what to ask the Dr... I'm not sure! Make sure to take a notebook with you. If it were me, I know I'd ask if they have other Pediatric Celiac patients, which they should, but you never know. ... how long have they been dealing with Pediatric Celiac Disease. You may come up with questions as you look over some symptom lists as well. I would ask specifically how they diagnose Celiac-- i.e. what tests do they do, and then ask for the "normal" parameters of those tests, and write them down. This is info you'll want to have so that A) you can research them while waiting for results, and you'll have an idea of what the results mean when you get them.

Ask under what circumstances would a biopsy be ordered. Then ask what their procedure is when they do biopsies of the small intestine. This is very important, because many doctors still only take one sample during a biopsy, and that is NOT enough when checking for villous atrophy with Celiac. Because Celiac causes "patchy" damage to the small intestine, taking one sample is way too iffy- it's too likely they'll simply miss it. They need to take several samples. A lot of people on this board have mentioned "8 or more" as being safer.

These are questions I know I would ask, but I hope that others chime in, since I have not had my son go through the testing yet. Search through old posts too, both in the Kids and Babies section, and also in the Diagnosis and Testing section. I bet you will find more good questions there, too. I hope I'm helping a little!

-Sarah