I've So Had It With Doctors!

[Guest taweavmo3]

Okay, I took Ben for his 15 month check up yesterday. I didn't necessarily want Ben tested at this point, since I know he is so young (15 months).

BUT, what irkes me is that the doctor actually said "do you really want to do a bloodtest if he's not showing any major symptoms?" He then did start to redeem himself by saying that latest research does say Celiac is common, and that many people have it for years without showing severe symptoms like my daughter had. It is so frustrating.

Ben has grown two inches, and gained one pound. So, on the basis that he is growing, doc won't do the test. He proceeds to tell me that 3+ stools a day with undigested food in them can be normal. Okay, maybe for some children it is. But when there is a HISTORY of celiac in a sibling, this should be a red flag! Ben also has the severe milk intolerance that my daughter also had. His belly is sticking out so far now that his once-an-innie belly button is popping out. Also, just like my daughter's did.

Ben only eats about 1/4 of the gluten that Emmie did at his age. I believe this is the only reason why he is still growing at this point.

I'm just so fed up right now with the overall ignorance about celiac and the inability of doctors to stop talking for a few minutes and actually listen to what parents have to say. I swear I only got one sentence in about my son's stools before I got the common "spiel" that I've heard way too many times before.

The only medical proffesional I have been happy with so far has been a Nurse Practitioner. They have listened to me talk about my children's problems (without having that arrogant "I know everything" attitude) and have been very thorough. Our old NP moved, so we tried this new guy. So far, not impressed!

Thanks for letting me vent.....I just didn't think I'd be heading down this same road again so soon.

[lisabp]

If you have about $400 to spend, go to the Enterolab site and order the stool sample test. You'll just collect (and freeze) at least 1/2 a cup of stool samples and send them off and then 3 weeks later you'll get an email with the test results. Your insurance might or might not may for it (I still havr to send mine in to insurance). With that (or maybe without it) you can get an appointment with a pediatric gastroenterologist (I have a good one here in Austin-but there are only 3 in town and they are all in the same practice). Then get the biopsy done and get the gluten free diet going.

Don't wait for doctors, you need to know for sure.

[Merika]

You can also order direct the complete blood panel from promethius labs in san diego and have any doctor run it. Your insurance may or may not cover it, and for that matter you may or may not want it on your insurance if it comes back positive.

Dh did this for himself - cost $250 or 299 and my midwife did the blood draw (you need lab equipment and the NAME of a licensed doctor).

hth,

Merika

PS. Easier though to just insist on it or find another doctor....

[Carriefaith]

That's too bad He can't refuse. I would be nice about it but say that you want the test done and that your son is showing some symptoms. The fact that celiac runs in the family should be enough for him to order tests.... Doctors are only human and although some of them may think they are all knowing, they don't know everything. I mean you can't possibly know every detail about every medical problem in the world. Don't get me wrong, I highly respect doctors for what they do and all the hard work they have done, but there are always a few that are just well... annoying.

[key]

He should be tested just because he has a blood relative with it. My ped tested my oldest son just because he is only in the 10th percentile for height and weight and has a blood relative with it. HIs brother and his mom. Anyway, I would insist and even show him information about it. The only thing is though, is that I doubt his bloodwork would come back positive at his age, so then it would mean a biopsy. YOu could always just put him on the diet and see how his stools are. Plus you don't necessarily want your insurance knowing. Anyway, I wouldn't go with the blood test at this age, because my youngest son's was negative, but he had a very positive dietary result. We are still waiting on the results of my older son's test.

Goodluck.

Monica

[Guest taweavmo3]

Yeah, I know he's really young to be tested. I think my nerves are just still a bit raw after having such a bad experience with out last ped. Ben was in the hospital back in January w/diarrhea and vomiting, and our former ped said he didn't need to do a stool sample because he just "knew" what it was. The diarrhea/vomiting started after Ben had his first meal of pasta. I don't see how Ben could have such a serious reaction from just that.......but it's always left me wondering.

Just in the past two days I've increased his gluten intake....and the diarrhea kicked in today. I KNOW he has it, it just sucks that if I want him to have the blood test I have to make him sick. He also has his second ear infection in three months, and he's had two strep infections in the past year. The Enterolab seems like the way to go....and I don't have to make him sick to do it.

The past two years of my little girl's life were miserable....my niece saw her today and said "wow, that's the first time I've seen Emmie smile". We are finally getting to really know her personality for the first time...I don't want the same thing to happen with my baby.

I don't mean to flame all doctors, I've just had bad experiences this past year. I've worked in the medical field for the past five years, I know there are good ones out there. There just needs to be more education I think.

Monica...what's the problem with insurance companies? Now I'm worried...do they consider it a pre-existing condition and refuse to cover????

[Guest nini]

A lot of insurance companies WILL consider it a pre-existing condition, I ran into that when my boss dropped our benefits at work. I think that's ridiculous because when someone with Celiac is properly dx and following the diet, then they are healthier than most and LESS LIKELY to have complications from it. It's only those people NOT dx and still eating gluten that are EXTREMELY ill from it! LOL!

[Merika]

Hi,

Depending on your needs, you may or may not want a diagnosis on your insurance and separately you may or may not want an "official" blood test diagnosis. Most physicians will not accept the results from enterolab.

If your child will be attending a typical school and you will need to go in and insist on gluten safety in the future, you will need an "official" blood test to prove your child has celiac. This could be separate from your insurance.

I would, right now, call a ped's office -any ped - or a children's hospital (where they're really good at blood draws) and insist on a blood test Monday or Tuesday. If your child's only been gluten-free for a few days, I think results should be accurate. If you wait another week or two, results will be less accurate.

.02,

Merika

[Kailynsmom]

If your want your child tested, and his ped won't do it, find someone who will. When my daughter's pediatrician said she didn't show the signs of celiac disease and refused to test her, I took her to gastro dr. He said she showed 5-6 signs of celiac disease and wanted her tested immediately! Trust your gut (can we say that here without being corny?) and do what you think is right...not the ped.

[janicelm]

  Kailynsmom said:

If your want your child tested, and his ped won't do it, find someone who will. When my daughter's pediatrician said she didn't show the signs of celiac disease and refused to test her, I took her to gastro dr. He said she showed 5-6 signs of celiac disease and wanted her tested immediately! Trust your gut (can we say that here without being corny?) and do what you think is right...not the ped.

<{POST_SNAPBACK}>

As a pediatrician and Mom of a 5 yr old girl w/celiac disease my first advice is to find a pediatrician who "gets it". If this dr doesn't understand the genetics of this disease and that it is important to pick-up celiac disease before symptoms present then he needs some real education. Perhaps you could download him some articles on celiac disease and diagnosing it in first degree relatives. I routinely check ALL sibs of celiac disease kids and offer testing to their parents too. It sounds as if your son could definitely have it and my opinion is opposite of your dr. What harm can a simple blood test do?

Good luck and I hope you find the answer to your questions and competant, compassonate and thorough medical care

[Guest taweavmo3]

Thanks for your reply.......I thought this ped would be different, he came highly recommended by many parents, and even diagnosed another celiac baby at 18 months. I'm hoping he's more supportive at our next visit, if not I can also ask our pedi GI when I bring my daughter back for her follow up.

I just don't get the reasoning for being so hesitant to do the bloodtest. Could be for insurance purposes I guess, that's what my family keeps saying....but I'm holding onto some thread of hope that doctors, especially peds, don't watch the bottom line that tightly. I've worked with some really great doctors over the past few years, I know that there are those out there that truly care about the well being of their patients. I think that's why I feel so burned this past year, I just didn't expect to be brushed off time and time again, and experience so much ignorance first hand. Like you said, I think it is just a matter of education and finding a doctor who will listen. I'm hoping this ped will come around, my oldest child really likes him and he is great with the kids. Maybe I just need to change my approach.

Thanks again....you are a real gem in your profession!

[janicelm]

  taweavmo3 said:

Thanks for your reply.......I thought this ped would be different, he came highly recommended by many parents, and even diagnosed another celiac baby at 18 months.  I'm hoping he's more supportive at our next visit, if not I can also ask our pedi GI when I bring my daughter back for her follow up. 

I just don't get the reasoning for being so hesitant to do the bloodtest.  Could be for insurance purposes I guess, that's what my family keeps saying....but I'm holding onto some thread of hope that doctors, especially peds, don't watch the bottom line that tightly.  I've worked with some really great doctors over the past few years, I know that there are those out there that truly care about the well being of their patients.  I think that's why I feel so burned this past year, I just didn't expect to be brushed off time and time again, and experience so much ignorance first hand.  Like you said, I think it is just a matter of education and finding a doctor who will listen.  I'm hoping this ped will come around, my oldest child really likes him and he is great with the kids.  Maybe I just need to change my approach.

Thanks again....you are a real gem in your profession!

<{POST_SNAPBACK}>

[janicelm]

  janicelm said:

<{POST_SNAPBACK}>

I am glad to have helped a bit. I just believe in giving parents what they want and need psychologically and emotionally within reason. I also hope most pediatricians aren't motivated by insurance issues. We haven't had any problem w/companies paying for the celiac screen anyway. BUT it needs to be coded appropriately (ie. abdominal pain, diarrhea, etc).

It's good that you have faith in your ped and that you will give him another chance. Perhaps he had a bad day or needed to look into it more. I will say that my daughter really had NO overt symptoms. She is 5, not growing very well and had a big belly (yes with an outie). BUT that's it. TUrns out she had horrendous anemia, lactose intol, gastritis, esophagitis and not a complaint out of her. That taught me such a huge lesson about this illness, it's insidious in some people. To give your ped credit, celiac diagnoses have changed since I was in med school in the early 90s. What an education I just got!

Also, your peds GI should rec all of your kids, you, their dad and cousins get checked...it's in 20-30% of all first degree relatives. You never know what you'll find and who you will help.

Good luck and keep me posted. I hope little Ben doesn't have celiac disease!