Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Trouble With Doctors...

Guest nini

By Guest nini
in Doctors

Recommended Posts

Guest nini
Guest nini
Posted

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????

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

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 Mentor
ravenwoodglass
Posted

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
Guest nini
Posted
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
Guest nini
Posted
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
Guest nini
Posted

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 Rookie
marycubs
Posted
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 ! :angry:

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

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
Guest nini
Posted

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 :angry:

Jnkmnky Collaborator
Jnkmnky
Posted

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 Collaborator
Rachel--24
Posted

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
Guest nini
Posted

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 Collaborator
jenvan
Posted

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

PreOptMegs Explorer
PreOptMegs
Posted

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
Guest nini
Posted

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 Contributor
Merika
Posted

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 :o Really. I would consider it.

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

Merika :D

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin and low vitamin D. I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,341
    • Most Online (within 30 mins)
      7,748
    Eppie
    Newest Member
    Eppie
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin and low vitamin D. I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.