Is It Celiac? Please Help

[justkaty]

Hope you can help me. My daughter was a normal birth weight, nearly 7lbs, normal baby until around 9 months of age. She got a couple of "viral illnesses" and ever since has had chronic diarrhea. She has been small since I stopped breastfeeding around 3-4 months of age, but just continues to go down on the growth chart. She is growing, but it is a very slow progression and she has gone from just above the 5th percentile to around the 2nd percentile weight for age and has been there for many months. I work for her doctor who diagnosed her with Failure to Thrive and referred her to a pediatric GI. In the meantime he had asked that I take her to a pediatrician since he was General Family Practice and a Pediatrician would have more knowledge about kids. She had a new pt exam with the Ped and he was concerned, but since I already had an appt with GI said he would let them do the tests. Then a few weeks later she started vomiting again in addition to the chronic diarrhea and she lost weight so he put her in the hospital. The celiac blood test is still pending. She spent 2 days in the hospital and most of the tests came back normal. She is anemic, but other than that everything seems fine. We saw Ped GI yest and I was so disappointed. He said that she seems normal and that he has neurotic moms come in all the time and he has to talk them out of diagnosis. He said he thinks she has "toddler diarrhea" and that it would pass around the age of 3-5 and not to worry about it. When I questioned why she is so tiny, at 15 1/2 months old she is still less than 19lbs, he said that since I'm 5'4 and dad is 6'1 that is just average and she would probably just be a small person. When I asked about the anemia he said it was borderline and to "give her a vitamin supplement with iron and that would bind her all up and solve all the problems". He acted like her family doc and pediatrician just didn't understand GI in kids and seemed to dismiss us. When I look up Toddler Diarrhea it seems that this is only an accurate diagnosis if the child is growing normally and she isn't. Most of the information I found also indicated that in Toddler Diarrhea fruit juice, especially apple is frequently the culprit. My child doesn't even like fruit juice. The only one we have found that she likes at all is white grape and she drinks less than 4oz per day. Oh, he also told me that her disposition was too good for celiac, because children with celiac are cranky and irritable and she was too pleasant. I am so confused. I don't want to self-diagnose my child, but I also don't want to ignore a problem and I seem to be getting conflicting information. I have also found many stories about celiacs whose blood tests came back negative at least once and so I don't want to just hold out for the test results and simply go with that. I'm concerned that if it is celiac and it goes untreated she is going to continue to have stunted growth and perhaps more serious problems down the road. Any help or advice would be appreciated.

[JennyC]

From what I've read here, blood tests are very inaccurate in young children. Many of her symptoms sound like Celiac. To me, it seems like you have two immediate options. You keep her on gluten and keep searching for an adequate doctor. (Which may take a lot of time. My son's 2nd opinion app with a pediatric gastro is 3 months from when I got his blood work results.) Or you take your child off of gluten now and see how it goes. If you do this and it's a success, you will probably not want to put her back on gluten for a diagnosis. Many people here feel that dietary response is adequate diagnosis, while others want the official diagnosis. That is totally up to you. Your situation does sound pretty desperate though. If she does have celiac disease then she is also lactose intolerance, at least temporarily. If you do decide to go gluten free leave me a personal message with your email and I'll email you a couple really long lists of gluten-free foods.

Best of luck.

[Juliet]

My son's disposition when he was EXTREMELY sick (by looking at him you could tell he was starving to death - he looked like the starving babies you see in pictures) and only awake for a total of 3 hours a day was still friendly and very loving. He was in a lot of pain whenever things started moving in his bowels and would just put himself to sleep when it happened. He wasn't cranky, mean, or hyper (although that is now some of his symptoms when he does get exposed to gluten). We were getting told over and over that it was all in our heads, that it was just toddler diarrhea, that his teeth were getting discolored from a lack of fluoride, that some kids just aren't that active, that his distended belly was within a normal range (even when he lost almost 4 pounds in a month and a half), and that there was NO WAY it was a problem with his bowels by his regular pediatrician. It wasn't until we ourselves insisted on being referred to a pediatric G.I. (who luckily knew something about Celiac Disease as well as other possible problems) and that he be tested for other things as well (they ended up doing an ultrasound around his stomach, lungs & heart and found fluid around there) that they decided to have him hospitallized and tested for several things. That doctor does not sound knowledgeable at all about Celiac Disease if he can just dismiss the failure to thrive and diarrhea issues just because your daughter isn't cranky. And 5th percentile in growth is very low for someone whose parents are 5'4 and 6'1. The general rule of thumb means that your child would be in a height range of around 5'6 with parents of your heights, the average height for females, so she should be much closer to the 50th percentile height range. My sister who is actually smaller than you (5'-3") was always around the 50th percentile in growth (plus or minus about 20% at times) and never below 10%.

Try to find a better doctor who will take your concerns seriously whether or not you feel that your daughter actually has Celiac Disease. After what we went through, I feel that no parent should ever be dismissed like that. If you were jumping to conclusions such as "my daughter has diarrhea, therefore she has cancer" I could see why a doctor would tell you that you're possibly being a bit neurotic. But your daughter is small and has diarrhea, therefore your concern is not unfounded and unreasonable. Even if everything turns out to be "normal", some additional testing or discussion about Celiac Disease or gluten intolerance (beyond that your child should be "cranky" if it's a problem) or even other food intolerances should be done. As for the testing for Celiac Disease at this age, as the previous poster stated, it can be unreliable. Often if your child does test positive at this age, the damage is very extensive and probably has been going on for a very long time (which was the case for our son). You may want to try the diet on your own since that is probably the best indicator at this age. But do what you feel you need to do, and like I said, get a better doctor! I'm so sorry you had to deal with doctors like that.

[Danno]

My son's disposition when he was EXTREMELY sick (by looking at him you could tell he was starving to death - he looked like the starving babies you see in pictures) and only awake for a total of 3 hours a day was still friendly and very loving. He was in a lot of pain whenever things started moving in his bowels and would just put himself to sleep when it happened. He wasn't cranky, mean, or hyper (although that is now some of his symptoms when he does get exposed to gluten). We were getting told over and over that it was all in our heads, that it was just toddler diarrhea, that his teeth were getting discolored from a lack of fluoride, that some kids just aren't that active, that his distended belly was within a normal range (even when he lost almost 4 pounds in a month and a half), and that there was NO WAY it was a problem with his bowels by his regular pediatrician. It wasn't until we ourselves insisted on being referred to a pediatric G.I. (who luckily knew something about Celiac Disease as well as other possible problems) and that he be tested for other things as well (they ended up doing an ultrasound around his stomach, lungs & heart and found fluid around there) that they decided to have him hospitallized and tested for several things. That doctor does not sound knowledgeable at all about Celiac Disease if he can just dismiss the failure to thrive and diarrhea issues just because your daughter isn't cranky. And 5th percentile in growth is very low for someone whose parents are 5'4 and 6'1. The general rule of thumb means that your child would be in a height range of around 5'6 with parents of your heights, the average height for females, so she should be much closer to the 50th percentile height range. My sister who is actually smaller than you (5'-3") was always around the 50th percentile in growth (plus or minus about 20% at times) and never below 10%.

Try to find a better doctor who will take your concerns seriously whether or not you feel that your daughter actually has Celiac Disease. After what we went through, I feel that no parent should ever be dismissed like that. If you were jumping to conclusions such as "my daughter has diarrhea, therefore she has cancer" I could see why a doctor would tell you that you're possibly being a bit neurotic. But your daughter is small and has diarrhea, therefore your concern is not unfounded and unreasonable. Even if everything turns out to be "normal", some additional testing or discussion about Celiac Disease or gluten intolerance (beyond that your child should be "cranky" if it's a problem) or even other food intolerances should be done. As for the testing for Celiac Disease at this age, as the previous poster stated, it can be unreliable. Often if your child does test positive at this age, the damage is very extensive and probably has been going on for a very long time (which was the case for our son). You may want to try the diet on your own since that is probably the best indicator at this age. But do what you feel you need to do, and like I said, get a better doctor! I'm so sorry you had to deal with doctors like that.

I agree with the idea of just totaly avoiding gluten, and perhaps dairy, they seem to go hand in hand. The results should be very obvious and happen quickly. A mother's instinct outweighs any doctors "opinon". Good luck!

[ptkds]

Yep, you need to find a new dr. My dd's pedi GI told us she had "toddler diarrhea," even after the blood work was positive for celiac disease. So I ignored him and put her on the gluten-free diet, and she has done great! I can definetly tell when she has had some gluten, because she gets cranky, a bloated tummy, and diarrhea. She never really acted sick before we started the diet. She would get grumpy at times, but it wasn't all the time.

Please either get a second opinion or start her on the diet. It won't hurt her to be on the diet.

ptkds

[Nantzie]

As sick as she is, I wouldn't wait for a second opinion. I'd try the gluten-free diet (dairy free too for now) and see how it goes. You should see at least some difference within a few weeks.

I agree that you should find a new ped GI, but I think that's secondary to getting her healthy. Start her on the diet. Worry about finding a new doctor later.

An official diagnosis really doesn't give you anything more than just trying the diet at this point. There aren't any prescriptions. You don't get any price cuts on food in the US by having a doctor diagnose it.

I'm glad you found us. This is the best place in the world to learn about celiac and the gluten-free diet.

Welcome to the board.

Nancy

[justkaty]

As sick as she is, I wouldn't wait for a second opinion. I'd try the gluten-free diet (dairy free too for now) and see how it goes. You should see at least some difference within a few weeks.

I agree that you should find a new ped GI, but I think that's secondary to getting her healthy. Start her on the diet. Worry about finding a new doctor later.

An official diagnosis really doesn't give you anything more than just trying the diet at this point. There aren't any prescriptions. You don't get any price cuts on food in the US by having a doctor diagnose it.

I'm glad you found us. This is the best place in the world to learn about celiac and the gluten-free diet.

Welcome to the board.

Nancy

So where do I start with the gluten free. I'm feeling very overwhelmed right now. I have read about all the things that have gluten and don't even know where to begin. I'm also a single mom of 3 kids and I'm not getting any support. The expense of a lot of these products is scaring me to death. I work full time and don't have a lot of free time, but any ideas about making foods for her at home would be appreciated as well. Also, do you just never eat out again? I just want to do the right thing for my baby.

[shayesmom]

So where do I start with the gluten free. I'm feeling very overwhelmed right now. I have read about all the things that have gluten and don't even know where to begin. I'm also a single mom of 3 kids and I'm not getting any support. The expense of a lot of these products is scaring me to death. I work full time and don't have a lot of free time, but any ideas about making foods for her at home would be appreciated as well. Also, do you just never eat out again? I just want to do the right thing for my baby.

The initial switch is overwhelming in the beginning. Probably because we have a tendency to focus on all the things we can't have as opposed to looking at all of the things we can have. I would first sit down and make a list of meals that your family likes that are naturally gluten-free or that can easily be converted. Some of the meals I came up with are: cabbage rolls and mashed potatoes, tacos, shish kabobs, meatloaf (easily made gluten-free), steamed veggies, sweet potato fries, baked potatoes, salads of all kinds (with the right dressing), roasts, pork loin, baked chicken wings, ribs (there are plenty of gluten-free BBQ sauces), and pretty much any form of lean meat, vegetable and fruit combo you can come up with. To stay within budget, shop the perimeter of the grocery store and take advantage of sales.

Snack items are a bit trickier on diet. Fritos, Lay's potato chips and tostitos are gluten-free. And there are many other varieties of chips that are safe. Other items, such as cookies, brownies, cakes, etc. are more expensive to purchase packaged or pre-made. I have found that Living Without magazine is the best resource for gluten-free recipes that offer home-made and economical substitutions for regular foods.

You can also find a lot of recipes that are naturally gluten-free on paleo diet sites, raw food sites or whole food recipe sites.

The point being....there are ways to keep this economical when it comes to finances AND time. But I did find that it took some serious re-thinking of our menu as well as a bit of organization. Make bigger batches of food and learn to freeze leftovers in individually sized portions. It saves a lot of time and thought. Not to mention it comes in handy on days when you're just tired of cooking.

[gfp]

This is IMHO not that simple....

The blood tests were -ve... but they are unreliable in toddlers anyway...

A biopsy is likely to be -ve as well...

At least the blood tests are pretty minor... and hence can be repeated... whereas what would you do if you also have a -ve biopsy knowing they are unreliable and esp in toddlers.

I honestly think far too many people stress out over the size of their kids...

The general rule of thumb means that your child would be in a height range of around 5'6 with parents of your heights, the average height for females, so she should be much closer to the 50th percentile height range. My sister who is actually smaller than you (5'-3") was always around the 50th percentile in growth (plus or minus about 20% at times) and never below 10%.

Both my brother and I were in the lower 10% throughout school. My mom is 5'2" and my Dad 6"1'...

I'm 5'10" now and my bother 5'11"... I have celiac disease he definately doesn't.... (as both my mom and I do he's been thoroughly tested)...

The thing is we were in the UK 10% in the 70's.... the fact is today that a UK or US child in the upper 50% is statistically very likely to be obese... in later life.. (not because of this... )... What I mean is that those percentiles are taken from the general population and a very large proportion of the general population will end up being obese ...

I don't know if there are actually any figures available for "a healthy population".... that is removing all the figures collected on growing kids and then throwiong out the ones who are clinically obese by the age of 30.

(there actually might be in the ALSPAC study)...

Now the question is did my undiagnosed celiac disease stop me being 6'1" like my Dad? Given my brother is only an inch taller?

However... more importantly... does it matter in the slightest... what if I had turned out to be 5'6"...??? erm sure it cuts down employment opportunities for being a professional basketball player but in what other ways might it limit me???

It seems your medical "team" (GP, GI, PD) can't decide...?

So they took the easy option.... tests are -ve...

Its really not going to hurt one bit putting her on a gluten-free diet...

The crankyness... I sorta disagree about it not being relevant... that doesn't mean it dismisses celiac disease... but at least having a GI that recognises this as a symptom and doesn't just slavishly say the biopsy is all that counts is at least a start...

The expense of a lot of these products is scaring me to death.

It really doesn't need to...

My gluten-free costs for eating at home are not really any different...

90% of what I eat is just fresh fruit, veg, meat, fish.... Maybe once a month I might have gluten-free bread or pasta ...

There are some incremental expenses... for instance I tend to have to buy better brands ... for items that are stock... not always but just stuff like canned beans or canned chick peas... taco shells etc. but its not huge... they aren't special gluten-free just good brands making corn taco's from what they should be... corn...

Eating out it does cost me more... when Im somewhere I don't know I tend towards a high quality resto... somewhere you can actually talk to the chef or sous chef... however you can also do this locally with cheaper resto's you just need to do the work.

However... the whole catering industry is getting much better year by year... we have far more options and by the time your daughter is at that point then choice will be much better...

We have a thread somewhere with over 100 recipees all take less than 30 mins to cook... or the time it takes to cook real rice or gluten-free pasta... I usually cook larger portions and freeze them as convenience food.

It really doesn't need to take that much time or be that hard...

I can honestly say the biggest loss of time cooking gluten-free is actually doing the shopping... not cooking time or prep time...

This actually starts off taking forever... a few of us will tell you how we have been reduced to tears in a supermarket at 1st..

It very quicjkly becomes much quicker... it can still take more time simply because the brand you're looking for is out of stock or not carried by that shop... but its not THAT bad.

Also.. not being funny but just switching to a "healthy" diet might solve this al by itself... if you currently as a busy single mom rely on convenience foods... and you will be surprised just how quickly convenience foods become not that convenient...

The biggest convenience I find is just having a well stocked larder of basics... just from brands that do gluten-free stuff of taco mix to curry paste etc. The real thing I do miss is not being able to grab a sandwich or pizza when I'm out with my mates... especially unplanned or when one of them suggests "lets grab some food"... but your daughter is a ways off that and I fully expect the situation to be very much improved by the time she is.

[taweavmo3]

Regarding size of children......after the first year, if a child is consistantly small on the growth chart, that very well may just be genetics. However, a pattern of falling back on the growth chart is a red flag and the primary reason for charting growth and weight in the first place.

This is not a matter of just having a small child, we heard the same load of BS for two years with my daughter. But I am much shorter than you, I am only 4'11", so I heard the same thing. Everyone said my dd was just going to be small. I finally talked to one of the pulmonoloigts that I worked with about this, and he said the pattern on a growth chart should be consistant, and if the numbers start dropping, that's a big red flag. That led me to find new doctors, and finally a diagnosis. My daughter is still small, and has once again fallen off the growth chart, but NOT in weight. But our new ped is not taking any chances and is following her closely for other issues. He said only after we've checked her thoroughly for anything else going on, will he chalk it up to genetics. It is too risky to just blow off very slow growth as simply taking after mom. I've also started her on Cod liver oil (thanks Ursula!) to see if this might help.

Anyway, everone else said it well......I would not listen to this doctor for one second. Find a new one, or just try to diet and see what happens. I can't imagine that your pediatrician or GP would be too happy with the GI's response either, so maybe you can get some support from them. Something major is going on if she was in the hospital for weight loss, and you need to get her well ASAP. Come here with any questions, this is a wonderful community!

[justkaty]

Regarding size of children......after the first year, if a child is consistantly small on the growth chart, that very well may just be genetics. However, a pattern of falling back on the growth chart is a red flag and the primary reason for charting growth and weight in the first place.

This is not a matter of just having a small child, we heard the same load of BS for two years with my daughter. But I am much shorter than you, I am only 4'11", so I heard the same thing. Everyone said my dd was just going to be small. I finally talked to one of the pulmonoloigts that I worked with about this, and he said the pattern on a growth chart should be consistant, and if the numbers start dropping, that's a big red flag. That led me to find new doctors, and finally a diagnosis. My daughter is still small, and has once again fallen off the growth chart, but NOT in weight. But our new ped is not taking any chances and is following her closely for other issues. He said only after we've checked her thoroughly for anything else going on, will he chalk it up to genetics. It is too risky to just blow off very slow growth as simply taking after mom. I've also started her on Cod liver oil (thanks Ursula!) to see if this might help.

Anyway, everone else said it well......I would not listen to this doctor for one second. Find a new one, or just try to diet and see what happens. I can't imagine that your pediatrician or GP would be too happy with the GI's response either, so maybe you can get some support from them. Something major is going on if she was in the hospital for weight loss, and you need to get her well ASAP. Come here with any questions, this is a wonderful community!

Thanks for the reply. If it was just her weight I probably wouldn't be so concerned. My concern is that she was at a normal spot on the weight graph and then dropped below 10% and then below 5% and now we are barely on the chart. That, in combination with the anemia and the chronic diarrhea causes me concern. She also sleeps more now than she used to and seems to get tired, she gets uncoordinated when walking and playing much quicker than she used to. This should be getting better, not worse. I just don't want to let a condition go because my child is still hitting her milestones and is a pleasant little person. I will see her previous doc tomorrow at work and the Ped on Friday and go from there, but it seems to me that the only way to see if I can help her on my own is to start the diet and hope it helps. I work in the medical field and adore the doc I work for, but have enough experience to know that doctors aren't always right and especially to not even properly examine my child and dismiss her and say come back in a year and we'll see how she is doing.

[melf]

I could use some insite!! I just found out about Celiac yesterday. I have an 11 month old, who throws up rice cereal, oatmeal, any food with rice flour in it, cheerios, formula(even soy). Is this celiac? My doctor has been blowing me off everytime I bring up my concern that something is wrong, he dismisses it as "he just doesn't like it." He started out in the 75th percentile for his weight, as of his last check up he is in the 25th percetile. Are these all signs? I would love to have something specific to give to my doc.

[Ursa Major]

The 'diagnosis' toddler diarrhea is every bit as dubious as IBS. Those are symptoms of something else, and should never be a diagnosis in themselves.

I completely agree that you need to start the gluten-free diet immediately, as well as dairy free. Some parents here have seen miraculous results within days after starting the gluten-free diet, despite negative tests.

I hope your little one will improve quickly!

[Nantzie]

90% of what I buy is regular stuff. The specialty stuff I buy are bread, crackers, pasta and occasionally premade cookies and ice cream cones. I buy other things every once in a while, but these are our main replacement products.

A few of the major food manufacturers make it a lot easier for us. Kraft, Frito Lay, McCormick and ConAgra all have policies that they will clearly label any gluten, or any other major allergen such as dairy or soy. You have to read the entire ingredient list, but with these manufacturers if you're not seeing the words wheat, rye, barley, oats or malt (barley) then it's gluten-free. They won't hide it behind a latin name or in natural flavors.

You'll be shocked at how many brands are actually made by Kraft. Just look on the back of packages as you go to read the ingredients and it will tell you who the manufacturer is.

For example, Oscar Meyer is made by Kraft. We buy the regular hot dogs by them.

My daughter was always really picky. One thing I found that she liked that I was able to use to replace chicken nuggets is plain chicken cooked in a pan with a little oil and add a little bit of butter and. The butter gives it a richer flavor, but you don't have to use much of it because you're using the oil at the same time. I make a bunch of tenders like that or cut up some chicken breasts and it gives me stuff to munch on or give the kids for a quick lunch.

We also get the McCormick Original Taco Seasoning and make tacos. My daughter eats just the taco meat.

A couple of our members have great information for newbies - one is Nini's - Open Original Shared Link Go to the bottom of the page and download the Newbie Kit.

Also, PM NoGluGirl . She has a great list too.

Nancy

[Izak's Mom]

Thanks for the reply. If it was just her weight I probably wouldn't be so concerned. My concern is that she was at a normal spot on the weight graph and then dropped below 10% and then below 5% and now we are barely on the chart. That, in combination with the anemia and the chronic diarrhea causes me concern. She also sleeps more now than she used to and seems to get tired, she gets uncoordinated when walking and playing much quicker than she used to. This should be getting better, not worse. I just don't want to let a condition go because my child is still hitting her milestones and is a pleasant little person. I will see her previous doc tomorrow at work and the Ped on Friday and go from there, but it seems to me that the only way to see if I can help her on my own is to start the diet and hope it helps. I work in the medical field and adore the doc I work for, but have enough experience to know that doctors aren't always right and especially to not even properly examine my child and dismiss her and say come back in a year and we'll see how she is doing.

My 2 cents are to trust your own intuition. From what you've described, it sounds like something's awry. I don't buy the whole 'it's just toddler diarrhea' bit either...yes, kids put nasty things in their mouths, but that doesn't mean there can't be something else going on. My Izak is the sweetest, cutest, most pleasant little guy to be around - and I've had him gluten-free since he was 9 months from pretty much the same reasons - he was dropping in height & weight, and had chronic explosive disgusting diarrhea. I don't have an 'official' diagnosis - although his ped and the ped GI doc we saw both support my opinions and agree that if the diet works, then that's what's best. From all I've read, testing in kids is a hit or miss thing - very unrealiable - and I'm personally not willing to subject my son to pokes & prods and invasive stuff when I already have a solution. When he's older, I'll likely do more extensive allergy testing, but for right now - he's just a happy gluten-free 21 month old. As someone else pointed out, a gluten-free diet won't hurt and may help. So you may want to give it a go. It's definitely more of a pain in the you-know at first, but as you get used to reading labels, calling companies & build up your own internal list of what's OK & not, it's really not bad at all. Snackwise, there are all kinds of crunchy rice/corn/soy chips these days that a toddler will love, and gluten-free cookies & cake mixes you can buy. Rice pasta is available pretty widely & tastes great, and Van's brand gluten-free waffles are awesome. I even noticed in my local Price Chopper the other day a regular store-brand buckwheat gluten-free waffle - in the regular aisle! Seems like more & more stores are carrying organic and non-allergen containing food, so unless you're way way out on the boonies, shopping shouldn't be too bad. And again, like someone else said - gluten-free really just means no processed crap, which isn't good for you anyway. Meat, fish, veggies, fruit - all good! Eggs, dairy, soy are all good too, assuming there are no other allergy issues. Izak drinks Silk Vanilla flavor kid-fortified soy milk & loves it. Anyway, I'm sure you'll figure out a plan that works best for you and your daughter. Best of luck - and definitely snoop around on this message board. There's really some great stuff here from a lot of great people! Oh - one more thing - if you do go gluten-free, make sure you also check things like shampoo & beaty products - my toddler is a bathwater connaisseur (sp?) and I wound up switching to an all natural shampoo/cleanser so that when he drinks the bathwater, he's not drinking poison. Same with toothpaste - we use Burt's Bee's (although the Baby brand is being discontinued...man, just when you find something you like!)

Best,

E