Do I Confront The Pediatrician With Our Discovery?

[MommyStina]

we have two wonderful toddlers (boy 34 months, girl 17 months). They have been as different as night and day since day one, but some things were odd to me that I saw in our daughter and didn't like the answers I was getting from the dr. He is really nice and has always hit the nail on the head developmentally with our son, and in general we really like him, however....

Since started on some solids, our daughter would cry and cry in the afternoon and evening hours and nothing made it better. We were told it was colic and she would outgrow it eventually. She would sleep a full 12hr night and take 2 2hour naps in the day time after she was a year old. when she was awake, she wanted to be held or carried around most of the day. (also told that was normal). And she didn't talk very much (she preferred to cry or scream). I was told that was normal, too. she was just on a different developmental track than her brother, but not to worry since she wasn't 18 months yet. She was always whiny and tempermental and just seemed permanently out of sorts. she was a very fussy eater, too. And the constipation......she seemed to have such a hard time and would cry with every movement and they were so infrequent and huge! I was told that too was a stage and she would get over it. She has always been long and skinny, and when she only gained 3oz. in between her 12month and 15month checkups, I asked if that was ok, and was told she was just tall and slender for her age (odd to us because our son is such a bruiser).

I was diagnosed with celiac in late november and by default, the whole family has been eating gluten-free. We have noticed a huge difference in our daughter's behavior and demeanor. She is picking up new words right and left (three weeks and she has added maybe a dozen new words....she had three before), she has not had any constipation issues, she eats constantly now, is visibly gaining weight, is happier, sleeps less (maybe not such a great thing for the rest of us ) and she doesn't have wierd dark circles under her eyes anymore....

My question to all of you: do I confront her pediatrician with this or just keep her gluten-free and let it go? I am kind of tossing the ball around on this one. Any new perspective you can give is appreciated.

Christina (-:

[Ursa Major]

Hi Christina, and welcome to our boards. Well, all the things you were told were supposed to be normal were definitely NOT normal, and should have prompted the pediatrician to do testing on her. Every one of those symptoms are very common in kids with celiac disease. I am glad you figured it out by default, and that she is doing so much better. Good thing she is gluten-free so young, and before she became deathly ill.

If you don't tell the pediatrician, he will tell the next mother who's kid has the same symptoms, that those are normal, too, instead of testing for celiac disease. You won't do him or his other patients a favour by keeping your discovery to yourself.

Try not to sound like you are blaming him when telling him. But I think you need to go in and tell him that because you have been diagnosed with celiac disease (and it is hereditary), you figured out that your daughter has it, too, and that she is amazing you every day with how much better she is doing, and the new things she is suddenly doing.

And see if you can give him a brochure or literature on kids with celiac disease, so he knows how to recognize the symptoms in the next kid.

Also, if you plan on keeping this pediatrician, you will eventually have to see him with your daughter for something, and it will be much better if he knows what is happening with her.

But definitely DON'T let yourself be talked into feeding your daughter gluten again for 'official' testing. You know what you know, and you have the evidence to prove it. No more testing needed!

[mommida]

Tell the ped. about your diagnoses. If the ped. knows that your children need to be screened for Celiac, then tell about their gluten free diet and how blood testing and endoscopy w/ biopsy would be negative. The only testing available in this situation is the genetic testing and may not be accepted as a valid diagnoses. Genetic testing may not even be covered by your insurance.

It's a sticky situation and the ped. Dr. should probably refer you to a pediatric gastroenterologist.

A gluten challenge is a very serious risk. If I knew then what I know now I would have never risked my daughter's health for a blood test. She was hospitalized for dehydration after a two week challenge when she was 17 months old. I wouldn't allow further gluten for the endoscopy. Her genetics test was positive for DQ2 and DQ8 Celiac genes. Her medical file reads "probable Celiac"

[dandelionmom]

I would definitely tell your pediatrician. You're raising awareness by telling him and maybe his next patient won't have to suffer any longer than necessary.

[Belinda Meeker]

Christina,

Well Gratz on finding out the problem

With most doc's they have no clue to this gluten-free world so if it were me I'd just keep on doing wht u r doing and if the opportunity ever comes up while visiting this doc I'd sure get the point across lol

I'm so Happy for u and ur's that the gluten-free world was your answer

Good Luck !

Bea

[home-based-mom]

When I was a customer service supervisor, I would on occasion get calls from people who would begin, "I don't want to get anybody into trouble, but . . . . ."

I always told them that nobody was going to get into trouble, and if customers don't tell us there is a problem, we think everything is just fine!

With that in mind, load up on as much printed info and reference material as you can, and then kindly and gently let your doctor know what you have discovered, how you discovered it, and what the improvements are that you are seeing.

The others are right - if you don't let your doctor know, you doctor can't help anyone else with the same problem.

Your doctor might have been taught the same as others have posted, that Celiac is extremely rare and only seen in Irish people with fatty, smelly stools.

You have a great opportunity to turn a nice pediatrician into a great pediatrician!

[kbtoyssni]

I would tell him. I agree with helping to get awareness out there. I think you also want a doc to know that because there are health issues a doctor of a celiac patient might want to look out for. For example, celiacs are more likely to have other autoimmune diseases, and I'd want my doc to know that and be on the lookout for them. If she did ever have another autoimmune issue, it's going to be quicker and easier to diagnose. And I wouldn't necessarily assume your doctor will be defensive and blow you off when you tell him she's got celiac. There are good docs out there.

[Worriedtodeath]

Tell him. But decided before hand if you want an official dx on her. If you do, it will involve gluten challenge of 2-3 months at least and then a biopsy - no small test and risky. If you would rather wait and do that when she is much older or never do it, then be ready to tell the dr that so he won't start pushing for it. But I agree with the others, he should know so he can know for other kids. Ped Gi is a waste of money if you aren't going to do a challenge and biopsy because that is the only thing they will want to do. So I wouldn't even go that route unless you are going to do the full test.

Stacie

[FeedIndy]

I had a similar situation. My daughter started slipping on the growth chart at the same time as solid introduction. There were a few other symptoms that we didn't quite connect at first. Due to her growth issues, celiac was one of the things her ped tested. Since it wasn't a common test, it took over a week for results.

She had her blood drawn on Friday. I spent all day Saturday researching celiac disease and discovering the host of other symptoms we had written of as "just how she is." We made the decision to go gluten free after reading that the tests weren't reliable in infants. I figured even if it was negative, I would still wonder

By day 2, she was standing-something she had never done before. By day 4, she was crawling which was a milestone she was behind. Her nap schedule went from 2 2-hour naps plus 1 1-hour nap to a short morning nap and a 2-hour afternoon nap. Her energy levels were clearly way up!

She was sick later that week (older sisters in school!) so she was seen at the doc and weighed. She had gained 5 ounces in 5 days of gluten free! When the doctor called the next day to tell me her test results were negative, I told him what we had experienced. He said to keep her gluten free and see what happens. 2 1/2 months later at her 1-year checkup he was amazed at her progress and declared the gluten free diet a success.

He still would like to do a challenge when she is 4 or 5, but we've had enough accidental challenges before her older sisters went gluten free to decline that with clear conscience. I would just let him know what you have seen and inform him that your family is officially adopting the gluten free lifestyle. He can take what he wants out of that.

[Jodie2DQ2]

The similar thing happened with our family. I had quit nursing and wanted to lose weight and lower my cholesteral and changed our diet to completely whole wheat. My then 1 year old was just starting to eat people food and we both just kept getting sicker and sicker. Both suffering from severe constipation. After I figured out what was wrong...only through genetic testing because I had been off gluten when they testing me for celiac..found out I have DQ2/DQ2 which is a major risk factor,Nowing they at least have the one gene from me, I took all of my kids off gluten. My son had turned 2 by the time I had figured this all out. He just would not eat...devolped a tree nut allergy and both my boys were just sick all the time. The pediatrician knew we were all having problems and saw the difference in their health and told me we would maybe challenge them when they were old enough to understand how it made them feel and could really talk about it. My boys have always been big..born at almost 10lbs..so they would have not even thought to test for celiac. The Dr. said they can eat perfectly healthy on a gluten free diet. So we will cross that bridge when it becomes neccessary. Now he eats relly good too. I would definitely talk to the pediatrician about it and maybe it will help her recognize it for other families. Jodie

[ryebaby0]

I think her doctor would be thrilled to find out about this! It's great news! There's no reason not to say "Hey, guess what happened?! After I was dx with celiac, we all went gluten free and it has made such a big change...etc..." Doctors get a bad rap for being ego-centric, but if he's going to care for her, he should know. If she's not due for a checkup, I'd stop by the office and drop off a "FYI" note.

Even if he had suspected celiac, at 17 mos. there's no point in testing and best case he would have advocated --- a gluten-free diet!

[taweavmo3]

It wouldn't hurt to tell your doctor.....hopefully it will help another family down the road. But, and I hate to sound like a wet blanket here, be prepared for him/her to downplay the positive results you are seeing.

This has happened to me with out last two pediatricians....not all doctors are receptive to being educated by their patients. I was so dissapointed, b/c I was really excited that the diet was helping my youngest son, even though he had tested negative (this was a year after my dd was diagnosed). The doctor completely blew off all the positive things I saw....and told me it was just coincidence, and he would be fine on regular food.

I moved on to a new pediatrician after that...and even this new one thinks I'm nutty for taking milk out of the kids diet. He's always hounding me about their calcium intake, but doesn't take a single minute to ask me what they actually eat. There was one time I was determined to get a word in about how they drink Hemp milk, and I have done my research on calcium rich foods, etc....but he just turned the conversation back to why I have them off dairy in the first place. ARGH!

Sorry, didn't mean to go off on a vent there! Hopefully your doctor is different, and will take your words seriously. We do have to keep trying, in order to help other families. Just be prepared, that's all. Good luck!

[tarnalberry]

Confront? No. Bring her up to speed and let her know what's going on? Yes.

Tone is everything, and you just want her to know, not harass her. That'll help her take you seriously on this one, and maybe others more seriously in the future as well. And if she doesn't believe you... no skin off your back, you still know what you need to do.

[Lizz7711]

I agree with telling the doc. But i'm also wondering why others are not recommending a blood test. The IgG antibodies stay in the system up to 6 months I think... It won't change anything, but can't hurt either. But I totally agree with not eating gluten beforehand or anything.

Glad to hear how good she is doing!

Liz

we have two wonderful toddlers (boy 34 months, girl 17 months). They have been as different as night and day since day one, but some things were odd to me that I saw in our daughter and didn't like the answers I was getting from the dr. He is really nice and has always hit the nail on the head developmentally with our son, and in general we really like him, however....

Since started on some solids, our daughter would cry and cry in the afternoon and evening hours and nothing made it better. We were told it was colic and she would outgrow it eventually. She would sleep a full 12hr night and take 2 2hour naps in the day time after she was a year old. when she was awake, she wanted to be held or carried around most of the day. (also told that was normal). And she didn't talk very much (she preferred to cry or scream). I was told that was normal, too. she was just on a different developmental track than her brother, but not to worry since she wasn't 18 months yet. She was always whiny and tempermental and just seemed permanently out of sorts. she was a very fussy eater, too. And the constipation......she seemed to have such a hard time and would cry with every movement and they were so infrequent and huge! I was told that too was a stage and she would get over it. She has always been long and skinny, and when she only gained 3oz. in between her 12month and 15month checkups, I asked if that was ok, and was told she was just tall and slender for her age (odd to us because our son is such a bruiser).

I was diagnosed with celiac in late november and by default, the whole family has been eating gluten-free. We have noticed a huge difference in our daughter's behavior and demeanor. She is picking up new words right and left (three weeks and she has added maybe a dozen new words....she had three before), she has not had any constipation issues, she eats constantly now, is visibly gaining weight, is happier, sleeps less (maybe not such a great thing for the rest of us ) and she doesn't have wierd dark circles under her eyes anymore....

My question to all of you: do I confront her pediatrician with this or just keep her gluten-free and let it go? I am kind of tossing the ball around on this one. Any new perspective you can give is appreciated.

Christina (-:

[MommyStina]

so here's the update now.....

had the 18 month check up a couple of weeks ago and I brought up what we had discovered (no more constipation, better demeanor, more growth and socialization since going gluten free.) Her doctor baisically told me that it may just be a coincidence and that it will probably be like our son's egg intolerance (which he outgrew) and it was most likely a temporary thing. we'll just wait and see what happens, but if we "slip up" here and there it shouldn't be a big deal.

We have made mistakes a couple of times and notice that when there has been a deviation from the gluten-free diet by accident that she gets terrible diarrhea the next day (weird since it was constipation that seemed to plague her before).

[Ridgewalker]

so here's the update now.....

had the 18 month check up a couple of weeks ago and I brought up what we had discovered (no more constipation, better demeanor, more growth and socialization since going gluten free.) Her doctor baisically told me that it may just be a coincidence and that it will probably be like our son's egg intolerance (which he outgrew) and it was most likely a temporary thing. we'll just wait and see what happens, but if we "slip up" here and there it shouldn't be a big deal.

We have made mistakes a couple of times and notice that when there has been a deviation from the gluten-free diet by accident that she gets terrible diarrhea the next day (weird since it was constipation that seemed to plague her before).

I am so glad your daughter is doing and feeling better!!! But...

Celiac can't be outgrown, and since you have it, and your daughter shows symptoms of it (including when she's accidentally glutened) there's really no reason to expect that she doesn't have Celiac Disease. He had no basis for telling you otherwise.

Accidental glutenings do happen, but he should NOT have said that slipping up (cheating?) isn't a big deal. It is.

It is not uncommon, however, for Celiacs to become asymptomatic at some point in their lives, especially during adolescence. This is why doctors used to think that Celiac was a childhood disease that was grown out of. Please remember that it's not, even if she becomes asymptomatic at some point.