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We Saw The Pedi Gi Today...need Opinions...

Momof2cuties

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Momof2cuties Apprentice
Momof2cuties
Posted

Well, today was a very frustrating day...I took Allison to the Children's Hospital in Omaha today and I feel like we're back to square one. He said he doesn't think that Ali has Celiac (only based on the fact that her blood work wasn't positive). He tried to tell me that he thinks she's just small and that she's totally fine. So, now we've got the diagnosis of "Toddler's Diarrhea" which to me seems like a total crock! (Sorry if that's vulgar, but I'm so steamed right now!)

As for a diet...he wants her back on gluten and told me that I'm doing damage to her by removing gluten from her diet and that she's lacking nutritionally. WHAT?!?! What is she lacking? If you know...please tell me! He told me to keep her off dairy and now off of ALL fruits, juices and any form of sugar for two weeks. I can then add back the fruits, but keep her off of dairy. Ugh.

Then I'm supposed to bring Ali back to see him in two months and have her weighed and measured to see if she's been growing at all. At that point he said he consider running another blood pannel if she's back to having chronic diarrhea and rashes. But, he's "certain" that's not what this is. How is he so certain? My sister and neice both have Celiac and I have some sort of allergy or intollerance to gluten. But, if mister doctor man says he sooooo certain...ARGHGGH!!

ARHGHGHGH!! Now what?! She's been GREAT since I took her off all dairy and gluten! I'm supposed to leave on Friday to go visit family in Minnesota for two weeks and I really don't want to change her diet and then take her away from home and her usual pediatrician. Do you think it would be ok to wait to change her diet until after we get back? I'm going to call her doc in the morning and see if I can get her thoughts. She's been so supportive of all of this so now I'm totally confused. If you can add any thoughts or share any experiences I'd be so grateful!

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Teacher1958 Apprentice
Teacher1958
Posted

I used to have such admiration for doctors until I found out that I had been misdiagnosed for 42 years!!! "Toddler's diarrhea" is just as lame as the term the doctor's gave my parents in 1965 when I was diagnosed with "nervous stomach" at the age of 7. Of course, I was nervous! I was in serious pain! Who wouldn't be nervous?

I don't know what to tell you to do. From what I understand on here, there are doctors who will accept anecdotal evidence. One of the parents here will give you some good advice. I still do not have an official diagnosis myself. I want to wait until I get my colonoscopy results, then look for just the right doctor, because if anyone thinks I am going to go back on gluten for six weeks to get a positive diagnosis, they are barking up the wrong tree.

I hope you find some answers, as your little one should not have to eat something which makes her sick.

chrissy Collaborator
chrissy
Posted

i would think it would be fine to wait 2 weeks to change your daughter's diet. who wants to make a diet change when going on vacation??!! what symptoms is your daughter having? did you ever get a copy of your daughter's tests from the clinic to be sure of what it is they actually tested. i know i asked you this before, but i have not been on this site much for awhile, so i didn't see if you had answered----sorry!!

a gluten free diet can be a healthy diet, but i would want to be sure of the diagnosis before i put my child on a gluten free diet----but that is just me---there are plenty of people that try the diet without a definitive answer.

if you are seeing a ped gi, though, you may want to give his advice a try----he sounds like he is willing to test again for celiac if other measures don't work.\

what about having your kids gene tested?

taweavmo3 Enthusiast
taweavmo3
Posted

You know, I work in the healthcare field, and on a daily basis I find it harder and harder to continue what I do. I know there are some great doctors out there, but sometimes you really have to search high and low for them.

The blood tests for children, especially as young as your daughter, are extremely innacurate. Truth is that testing for Celiac still has a LONG way to go....and in my opinion, the only true gold standard test for Celiac is dietary response. You are not nutritionally depriving your child. I just love how doctors don't hesitate for one second to tell a parent they are depriving their child on the gluten free diet, but the parents who fill their kids up with fast food, Cheetos and Kool Aid are apparently doing a superb job. Nothing frustrates me more than these sort of ignorant comments. Most doctors do not have the first clue what kind of food is actually available on this diet........and are still speaking from ancient and outdated information.

If your little girl is doing better on the diet, then I would continue with it. Priority number one right now is getting her well and happy......you can always do a gluten challenge later on. Right now she needs to be as healthy as possible to reach her speech and motor milestones. I really don't think docs think about this when they urge parents to "wait it out" until they are sick enough to test +. It's alot harder to play catch up after the age of three if alot of damage has already been done.

Anyway, that's my two cents for now, lol. Just remember that is is ultimately up to YOU, educate yourself and do what feels right for you. Trust your instincts.....I have found that they are right on 99% of the time. Good luck!

AndreaB Contributor
AndreaB
Posted

If you want to try and get an official diagnosis you need to wait it out.

With celiac in the family though, I would leave her gluten free and leave it at that. You have positive dietary response so you know gluten is a problem whether it's celiac or gluten intolerance at this point.

loraleena Contributor
loraleena
Posted

I say keep her gluten free. You could also have the stool test done by entero labs. It shows gluten intolerance and casein intolerance. You can do the test even off gluten.

Juliet Newbie
Juliet
Posted

One of the ways you could actually get a diagnosis that may seem a bit more "certain" without being on gluten is to do the gene test. If she has a celiac gene, with the inaccuracy of blood tests for IGA & IGG (particularly under the age of 7), your family history, and the positive dietary results, many doctors (possibly even this g.i. doctor) would say it's definitely Celiac Disease without having to put her back on gluten to re-test her. Kimball Genetics offers a swab test that's easy to do and Prometheus Laboratories does the gene test with a blood draw that many insurance carriers will cover. If your insurance carrier does not cover the gene test (ours did through Prometheus, but we couldn't find someone to do the blood draw on our daughter and then send it to Prometheus, so it was a bust going through them), Enterolab also does the gene test through a reputable testing laboratory, www.enterolab.com. The cost of the swab test through Enterolab is by far the cheapest - $149. They also do fecal testing for Celiac Disease, gluten intolerance, and dairy/casein intolerance, but many doctors and insurance carriers do not recognize the validity of their tests. I personally do not have a negative opinion about their testing, but I don't know all of the evidence that supports it. I just know that with my personal experience with doctors and the absolutely certainty that they do NOT know everything and most now know less than I do at least about Celiac Disease, just because most doctors are skeptical about Enterolab, in my humble opinion, does not mean much at all.

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Eriella Explorer
Eriella
Posted

To quote my mother: "if it makes you sick, why are you eating it?" If your daughter feels better off of gluten, keep her off. It won't become an issue until she is in college and needs a diagnosis to get an acceptable meal plan-- and that is a long way off!!! First of all, you are not malnourishing your child as long as you are feeding her a balanced diet. Second of all, your doctor is not the one who has to clean up your daughter's messy diaper for the next two months. You are her mom, and you do what is best.

What I would do is compromise: take her off of fruit, juices, gluten, and dairy for 2 weeks, then start adding the fruit in. See if that helps. If she can take the fruit, and her stomach problems go away, tell your doctor that this has made her better and would "like a diagnosis of gluten intolerance based off of positive dietary response". This is what a doctor (not mine, but one who had celiacs) told me to do to get my doctors to listen to me. Sometimes being blunt gets your way. Worst case, stop going to that doc and do what it takes to get your baby healthy.

Momof2cuties Apprentice
Momof2cuties
Posted
  • Author

Thank you so much for all of your help! It does help to hear from other parents who have waded through these waters before. I think we decided we're not going to change anything until we talk with her regular pediatrician and get a second opinion. We'll see what happens from there. At any rate we will most certainly wait until we're back from vacation until we start to change anything.

Thanks again!

Stephanie

EmmaQ Rookie
EmmaQ
Posted

You may not get answers until the kids are older. WE took our 2nd gluten-free after the blood tests, he is IgA deficient but the IgG test was positive and the gene. We will do the biopsy later, if need be, he was too little and too sick and we didn't know about all the testing, no one told us until is was too late to reverse what we had started.

If your child is better of GFDF, then I woudl leave well enough alone. gluten-free is nutrtitious and so it not having diarrhea while potty learning. That crushed our child's spirit, he could not control it and it was not his fault. He was therefore in diapers until age 3 1/2 when we figured out what was wrong w him.

You can always go back later and redo the blood tests and have a biopsy done. In the mean time, no one wants their child to be suffering unnecessarily.

That's my 2Cents worth... HTH

EBsMom Apprentice
EBsMom
Posted
Well, today was a very frustrating day...I took Allison to the Children's Hospital in Omaha today and I feel like we're back to square one. He said he doesn't think that Ali has Celiac (only based on the fact that her blood work wasn't positive). He tried to tell me that he thinks she's just small and that she's totally fine. So, now we've got the diagnosis of "Toddler's Diarrhea" which to me seems like a total crock! (Sorry if that's vulgar, but I'm so steamed right now!)

As for a diet...he wants her back on gluten and told me that I'm doing damage to her by removing gluten from her diet and that she's lacking nutritionally. WHAT?!?! What is she lacking? If you know...please tell me! He told me to keep her off dairy and now off of ALL fruits, juices and any form of sugar for two weeks. I can then add back the fruits, but keep her off of dairy. Ugh.

Then I'm supposed to bring Ali back to see him in two months and have her weighed and measured to see if she's been growing at all. At that point he said he consider running another blood pannel if she's back to having chronic diarrhea and rashes. But, he's "certain" that's not what this is. How is he so certain? My sister and neice both have Celiac and I have some sort of allergy or intollerance to gluten. But, if mister doctor man says he sooooo certain...ARGHGGH!!

ARHGHGHGH!! Now what?! She's been GREAT since I took her off all dairy and gluten! I'm supposed to leave on Friday to go visit family in Minnesota for two weeks and I really don't want to change her diet and then take her away from home and her usual pediatrician. Do you think it would be ok to wait to change her diet until after we get back? I'm going to call her doc in the morning and see if I can get her thoughts. She's been so supportive of all of this so now I'm totally confused. If you can add any thoughts or share any experiences I'd be so grateful!

The part that burns me up about what that doc told you is that you're "damaging" her by withholding gluten. I'm with you - WHAT?!?! That's just gross misinformation. There's nothing she needs nutritionally that is *only* present in wheat, rye or barley. I also agree that the toddler diarrhea "diagnosis" is a crock. If she's having diarrhea, there's a reason for it! That's just a ridiculous "umbrella" under which they lump the toddlers whose cases they can't figure out. That certainly doesn't make it acceptable, just because they put a name to it! Ooh, I'm getting hot under the collar just typing this!

If your dd is better off the gluten, then she should stay off the gluten, IMHO. It doesn't matter what anyone calls it, or even if an "expert" signs off on it. If you see the difference in her, then trust your instincts. And, yes, I'd wait to make the other changes....vacation is not the time (or usually the place) to be making big changes. Good luck to you. I think the second opinion is the way to go....that, AND trusting what you see with your own eyes!

Rho

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