Trouble With Doctors...

[Guest nini]

ok, my daughters pediatrician sent her to a ped. GI 2 years ago... he dx her with IBS (WRONG) and sent her back to her pediatrician, we tried IBS diet (3 day diet) it DID NOT help at all... after discussion, her ped. agreed to try the gluten-free diet and see if it would help her symptoms. IT DID 100%. So her ped. dx her with Gluten Intolerance.

Her ped. then retired and is no longer in practice. The Dr. that she has been seeing for the past year and 1/2 since then (and only for well visits because she's never sick enough to go to the Dr. because she is so healthy being gluten-free) Has JUST NOW DECIDED that she wasn't ever officially dx with Celiac therefore they can't continue to write notes for school or such even though her pediatrician dx her with a Gluten Intolerance and yes it's on record... SOOOOOO... they told me today that they want her to go back to the (IGNORANT) GI doc that misdiagnosed her in the first place and get him to change his mind and miraculously say that OH SHE DOES HAVE CELIAC based on her positive response to the diet. LIKE THAT IS GOING TO HAPPEN.

So... I call said idiot Dr. and what do they want her to do? Go back to eating Gluten so that they can run tests. NOOOOOOO I am NOT going to do that to my child. We already know she reacts very badly when exposed to gluten, and she is so healthy right now, why on earth would I do this to her? When is the medical community going to catch up to what most of us already know????? I don't NEED her to be dx with Celiac. I just need them to say that Gluten is bad for her and makes her sick. They've already seen the proof... what more do they need????

[ianm]

They will never wake up because if they are not ordering tests and pushing pills they aren't making any money. A healthy patient is not a paying customer.

[ravenwoodglass]

Here is what I would do. I would order complete copies of my daughters records from the retired doctors office. I would schedule an appointment with a different GI doctor and send copies of the first doctors records. Then I would explain the situation. If the school did not listen to me I would make sure I sent her lunch with her every day, which you will most likely do anyway. I would also make sure each of her teachers is told about the sensitivity, bypass admin at this point. I would send nonpowdered gloves with her so she can paint and use clay, glues and stuff without fear. I would also ask that if possible,I could I be notified when another child has a birthday if they do cupcakes or treats so I could send something she can eat. Teachers can be more understanding than the admin staff because they don't have to worry about all the regulations and the paper work. Oh and I would find another pediatrician.

[Guest nini]

They will never wake up because if they are not ordering tests and pushing pills they aren't making any money. A healthy patient is not a paying customer.

<{POST_SNAPBACK}>

exactly. this is why I work in an alternative health field. (I'm a massage therapist in a chiropractors office)... one of the things we talk about all the time is taking care of people regardless of ability to pay and getting people healthy instead of keeping them sick and injured.

I'm just so incredibly aggravated with the medical community at this point. What really gets me is this insistence that they have to definitively dx someone with a "disease"... I mean really... If Gluten makes people sick (AND IT DOES) regardless of genetics or triggers or what not... then stop feeding people gluten. Just look at the state of un-health in the U.S. We are a nation of sick and diseased people and WHY????? Because the pharmeceutical industry doesn't make any money off a Gluten Free diet... the pharmeceutical industry doesn't make anything off of any dietary changes that make people healthy. They American diet is so horrendous no wonder there are so many people with Cancer, Diabetes, Obesity, Hypertension, Heart Disease and on and on...

[Guest nini]

Here is what I would do. I would order complete copies of my daughters records from the retired doctors office. I would schedule an appointment with a different GI doctor and send copies of the first doctors records.  Then I would explain the situation. If the school did not listen to me I would make sure I sent her lunch with her every day, which you will most likely do anyway. I would also make sure each of her teachers is told about the sensitivity, bypass admin at this point. I would send nonpowdered gloves with her so she can paint and use clay, glues and stuff without fear. I would also ask that if possible,I could I be notified when another child has a birthday if they do cupcakes or treats so I could send something she can eat.  Teachers can be more understanding than the admin staff because they don't have to worry about all the regulations and the paper work. Oh and I would find another pediatrician.

<{POST_SNAPBACK}>

yeah, I'll be finding another pediatrician.

her teacher has been really helpful and supportive and so has the principal... just needed to have another note on file for the nurse and this is what I get...

[Guest nini]

oh get this... I went back to the Dr. and got copies of what tests they ran... The ONLY did TTG and IgA, that's IT...

And the supposed expert Dr's comments that he sent to her pediatrician were flat out LIES... I'm so mad right now. He said that she was healthy, and her growth parameters were within normal ranges (albeit small for age) and that he" ONLY RAN THE TESTS BECAUSE MOTHER INSISTED"

[marycubs]

oh get this... I went back to the Dr. and got copies of what tests they ran... The ONLY did TTG and IgA, that's IT...

And the supposed expert Dr's comments that he sent to her pediatrician were flat out LIES... I'm so mad right now. He said that she was healthy, and her growth parameters were within normal ranges (albeit small for age) and that he" ONLY RAN THE TESTS BECAUSE MOTHER INSISTED"

<{POST_SNAPBACK}>

Nini - Just a word of sympathy for you. I went through such frustration with my own diagnosis..It took me 4 doctors (including a GI) before I found one that knew about celiac disease and agreed with my self diagnosis - and didn't just tell me its stress related or emotional. I can't imagine how much worse it must be for you when your dealing with your daughters' health !

Hang in there and I hope you find a good Dr. out there !!

[Rachel--24]

Just curious. I've seen 2 doctors at my HMO since I got my Enterolab results back...they are both supportive of this diagnosis based on my history and symptoms. IMO...they would probably be happy to dx me with *anything* at this point. I think they are tired of seeing me! Well I am scheduled to see the GI on the 13th...if he is not so supportive...will this cancel out what the previous doctors felt? Does it matter? Is there any reason its better to have a dx on file?

[Guest nini]

The only reason to have a dx on file IMO is for Dr.s notes to school ... I'm going to keep her on a gluten free diet regardless of what any Dr. says...

I don't really want her to have the dx of Celiac on her permanent record because of possibility of being denied insurance coverage in the future due to pre existing conditions.

All I want them to admit is that she has a Gluten Intolerance based on positive dietary response, and her previous Dr.s observations, but they won't even do that. They will support me keeping her on the gluten-free diet because it's obvious that she's healthy on it, but they won't admit anything else without conclusive test results. PFFFFTTTT.

I found ONE pediatrician in my area that CLAIMS to be knowledgeable about Celiac, BUT she will not talk to me without me scheduling an appointment where I have to pay my $40 co pay and she gets to bill insurance. So I can't even find out how knowledgeable she actually is, without paying to see her. GRRRRRRRR

[Jnkmnky]

Why do they need a dr's dx on file at the school? My school doesn't require it. There's NOTHING that the school does to manage this disease. I go in and tell them my son has celiac disease and that as a result, NO ONE has my permission to feed my child anything other than water. Do schools even give out tylenol? My school listens to me, and tells me they will not feed my child anything. They don't even want to know about celiac disease, they like my simple instructions and like not having to be involved any further than that.

[Rachel--24]

I would find a new doc....theres gotta be someone who's smart enough to give the dx based on you being a Celiac and her having a positive response to the diet.

As far as having a dx on file...what about for work? What if you get glutened bad enough to call in sick? Wouldn't it be beneficial to have a dx?

[Guest nini]

Well, she's five. She doesn't need a work excuse yet! (J/K)

As for me, I do have a positive dx from my GI doc on record and my GP doc has to abide by it. So... if in the future when my daughter is older and has a job, I would hope that the medical community and the community at large will have accepted a dx based on positive dietary response.

[jenvan]

There's already some good advice here, so I'm just joining in to say that "flippin idiot" doctor!

[PreOptMegs]

I know exactly what you are going through, so hang in there. I was originally diagnosed with IBS basically because I was a "gainer" and didn't look "sick enough" to really have celiac even though blood results very positive, but after 1000% difference being totally away from gluten, it was obvious I was intolerant. I don't go to GI doc anymore because I didn't feel like paying him big bucks for me to diagnose myself! Don't go back to Gluten.... it is EVIL!

[Guest nini]

Thank you all... yes gluten is evil!!!!

I've kinda let it drop for now. If the issue with the school nurse comes up before I have a chance to follow through on this, I'll try to find out exactly why they need this on file. If it was for religious reasons all I'd have to say is that it's for religious reasons!

hey, maybe that's not a bad idea! My husband and I have a Ministry and we very well could start spreading the evils of Gluten!! (LOL) I'm just kidding. I wouldn't want to trivialize religion...

[Merika]

Hi Nini,

Ouch, that sucks! It sounds like you might be able to talk with the school - they seem supportive. One letter should be sufficient! Even if it's from last year. If they absolutely have to have a fresh one every year, in a pinch I would consider the devious and dishonest forgery of last years letter with a little white out and a xerox copy Really. I would consider it.

And in the meantime, get a new ped, yadda yadda...

Merika