Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

How Do I Get My Son's Lab Results And Copies Of Biopsy Results?

e&j0304

Recommended Posts

e&j0304 Enthusiast
e&j0304
Posted

I don't want his GI to think that I don't trust what he told me, but we had a really bad experience with bad drs. before we found out that my daughter was gluten intolerant and I would really like to read all the lab reports with the actual numbers and read what the pathologist wrote about his biopsies with my own eyes.

Is this a common thing to ask and should I expect them to hand it over without questioning me? I don't want to cause a rift...just want to see the results.

What do you think? How can I approach it without sounding as though I think they're all lying to me? <_<

He was gluten-free for a little while before testing and I want to know if his results were even close to boarderline.

Thanks for any advice.

Shannon

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

Celiac.com Sponsor (A8-M):


pixiegirl Enthusiast
pixiegirl
Posted

Well in this state (MA) we have the legal right to have all that stuff. I have mine and I always say that I'm just keeping my own records of my medical history together... I've never had a doctor's office act offended in the least. One or two made me sign a release but most just go to the copier and bingo I've got it.

Susan

redheadheather Explorer
redheadheather
Posted

2nd - I always ask for test results - my own and my families and I've never been questioned about it at all. Im' sure this is something the doctor's office is used to.

VydorScope Proficient
VydorScope
Posted

Every test my doc does I call up and ask (politely) for them to send me the results. I see no problem with this. I like my doc set, and I still do. I have almost an exact dulplicte of all my medical records.

If your polite and repsectful, they should not be offend and they shoul dhave no problem with it.

lovegrov Collaborator
lovegrov
Posted

I've never had a doctor be offended. You paid for these tests; you have a right ot the results.

richard

jenvan Collaborator
jenvan
Posted

You absolutely have a right to it. Most likely they will hand over copies and think nothing of it. If they give you ANY issues, insist and remind them its your legal right. I get copies of all my labs etc. and keep them in a file to take to other docs, to track my own progress. I think it is a must with a chronic illness or disease. I have never had an issue with a doc giving me my results. I always just have them fax them to my office.

taweavmo3 Enthusiast
taweavmo3
Posted

How's Jack doing? I'm assuming the biopsy came back negative too? You must be so frustrated at this point. I was hoping you'd get some sort of answer with all the testing. Keep us posted on your little guy!

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

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted
I've never had a doctor be offended. You paid for these tests; you have a right ot the results.

richard

DITO, DITO, DITO, DITO, to all who wrote.

I have ALWAYS asked for copies of all test results. Have a big folder at home from 1975.

Trust me, you never know when you might need them. When my drs begged me to apply for SSD I was glad i had a 4" thick folder to send them all the documentation along with those 'zillion' pages of their forms to fill out. I was approved in 4 months. They didn't want to deal with me I guess.....

It's your right to have them.

Judy in Philly

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thank you all so much for the advice. I will definitely call there today and see if I can stop by for his results. They want us to keep him eating gluten for the next month to see if he grows appropriately (he hasn't gained anything and has lost a little the last 5 months) and I just don't agree with that. My husband thinks that what the drs say is gospel and wants to do what they want. The GI said that Jack "does not have celiac disease." He is convinced that it's "toddler diarrhea" and he will outgrow it. I don't think toddler diarrhea is supposed to smell rancid like Jack's stools do. I took a diaper in and his ped. actually called for every parasite test known to man because she said "I have never smelled a more foul diaper." This child has been having diarrhea since he was 6 months old and is now 14 months. Athough I will say, yesterday and today he has not had diarrhea and it went to the other extreme and he's stuggling to get it out and it's very constipated. Who knows?

Anyway, I just want to know for sure what his results are and then I guess we'll just see what happens and hope that he outgrows this.

Thank you again!

Shannnon

VydorScope Proficient
VydorScope
Posted

Did they do the BLOOD TEST? I would not be surprised for a biopsy to be wrong in some one so young.

Also have you tried the gluten-free diet yet? I would.

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Vincent,

Yes, they did the blood test and I was told it was neg. He said the did the "celiac panel" I am just wondering what the actual numbers were because my son had been gluten-free for about 2 weeks prior to testing, which shouldn't make that big of a difference, but who knows? His GI said that 2 weeks gluten-free would make no difference. During the gluten-free time, we saw some improvement, but it was not totally better.

I am struggling here because as much as I don't want my son to be gluten intolerant, I do want to know what is wrong and how I can help him to feel better. For some reason I'm having a hard time accepting such a vague "toddler diarrhea" diagnosis.

Anyway, thanks for your help and I'm sure we will have him gluten-free again soon.

Shannon

Judyin Philly Enthusiast
Judyin Philly
Posted
For some reason I'm having a hard time accepting such a vague "toddler diarrhea" diagnosis.

Anyway, thanks for your help and I'm sure we will have him gluten-free again soon.

Shannon

:huh: Shannon...never heard of that dx. After smelling the diaper, I'm shocked they didn't see a connection unless they don't see or treat celiac disease that often.

Your poor little guy.

Judy

debmidge Rising Star
debmidge
Posted

Normally if you ask for copies of test results, they don't flinch anymore. Years ago you'd have to have a good reason and they would decide (I'm talking 20 years ago or more) if they wanted to give them to you or not.

Guest BERNESES
Guest BERNESES
Posted

Shannon- Hugs to you and your little guy. Beverly

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thanks to you all. The office was not open when I called today, so we'll have to wait until Monday. I am happy to hear that you all had good experiences when asking for copies of your results. I am not sure why I thought they'd be offended. I really don't think that they're lying to me or anything, I just want to read it all and absorb it myself because when I was sitting there listening my mind was racing and I don't think I even heard all of what he said. He did say that Jack had some damage to his esophagus from reflux and that I should give him immodium. Then someone told me that immodium was for diarrhea??

I was also a little taken aback because when I told him Jack was still having diarrhea at the beginning of the appointment he said, "Well maybe we need to do a colonoscopy." I said, "Didn't you already do a colonoscopy?" He then had to look at the chart and said, "Oh I guess I did." How in the heck do you FORGET that you did that procedure on a 14 month old baby less than a week ago??? He also had told us on the day of the colonoscopy that Jack likey had encopresis due to the amount of stool left in his colon, but when I asked him about that at the follow-up he stated that there was no impaction and that he just has toddler diarrhea.

Drs...I know they're busy people, but it's so frustrating to me when they don't really seem to know what they're doing when it comes to my baby. I mean, review the chart before you walk in the room for crying out loud!!

thanks for letting me vent!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,739
    • Most Online (within 30 mins)
      7,748
    gexewib
    Newest Member
    gexewib
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Feeling of Phlegm and thickness in throat

      By nanny marley · Posted

      Has anyone had any feeling in the throat like Phlegm , thick throat feeling after eating gluten ? Just wondering if this could be a symptom ?
    • nanny marley
      Feeling of phlegm and thickness in throat

      By nanny marley · Posted

      Has anyone had any feeling in the throat like plemb, thick throat feeling after eating gluten ? Just wondering if this could be a symptom ?
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      If you're more comfortable starting slow, that's fine, but do increase your dose to 500 mg per day as quickly as possible.  The World Health Organization recommends 500 mg thiamine HCl per day when deficiency is suspected.  Dr. Lonsdale had researched high dose thiamine for decades, and he has used higher doses, 1 to 3 grams in some cases.   Like I explained above, it's at that 500 mg level or higher that passive diffusion happens and thiamine can get into cells.  Inside the cells, thiamine turns the mitochondria back on.  Mitochondria produce energy the cells use to function.  I had been taking a multivitamin containing thiamine HCl regularly and still had become deficient.  Malabsorption of celiac disease really affects vitamin absorption.  I bought a bottle of thiamine HCl.  I was skeptical, too. I thought it couldn't be that easy.  I took 500 mg all at once.  I had improvement within minutes.  I couldn't believe the sensation of energy spreading to all parts of my body.  My brain felt like it was lifted out of a sub-sub-basement by an elevator and lights were coming on, floor by floor, of a skyscraper.  It was mental improvement, mental clarity.  Thiamine is needed for nerves to transmit electrical impulses, so the more nerves transmitting electrical impulses, the more my brain started working better.  The better my brain started working, the better I felt physically.  My muscles had more energy.  I wanted to get up and do stuff.   P.S. Questions are welcome.  "there's no poverty like ignorance, no wealth like knowledge". Keep learning!
    • badastronaut
      Still unsure.....

      By badastronaut · Posted

      Thanks! I think I'll start slow. See what happens. Should I notice the thiamine working almost straight away if I'm really deficient? What kinda of difference did you notice? More mental? Of also physical in the sense of more energy?    Sorry for all the questions! 
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      Absolutely no danger of overdosing on the stuff.  Thiamine is nontoxic, and safe.  I had gotten to 1000 mg of Thiamine HCl a day at one point.   Do continue taking the multivitamin with the other B vitamins.  You may want to add a magnesium supplement because magnesium and thiamine make enzymes together.  I like Magnesium l-Threonate (Neuro-Mag by life extension).  You may want to add a B Complex in addition to the multivitamin (take them at different times).  All the B vitamins are water soluble.   With Thiamine HCl, there's a "magic moment" about 500 mg, where sufficient thiamine can get into the cells by passive diffusion, and the difference is amazing.  In thiamine insufficiency, the thiamine transporters (special gates into the cell) shut down.  Thiamine cannot get into the cells until there's a higher concentration outside of the cell.  Once that happens, the  thiamine can get through and go to work inside the cells.   If you're brave, start with 300 mg at one meal and 200 mg at the next meal.  Increase as you feel comfortable.  You may want to stay at one amount for a few days before increasing again.  Just keep adding another 100 mg as long as you keep feeling improvement.  If you feel uncomfortable, skip the next dose.  Thiamine HCL is water soluble and excess is easily excreted.  Don't take thiamine close to bedtime because you may feel too energized to sleep.   Thiamine HCl may feel like riding in the back of a pick up truck on a gravel road.  Benfotiamine feels like you're in a chauffeur driven Rolls Royce.  TTFD feels like you're driving a Lamborghini.  You'll get there no matter what kind of thiamine is taking you there.  Just keep taking it.  The health improvements can be very subtle, but you'll notice in the long run.   I started with 500 mg of Thiamine HCl, to see what would happen and had amazing improvement within an hour.  I took 300 mg with each of two meals and 100 mg with snacks.  I eventually added in Benfotiamine (250 mg  a couple of times a day) and reduced the thiamine HCl.  Later I added in TTFD (50 mg) several times a day.  Just experiment and see what feels right for you. Everyone is different and has a different level of deficiency.   I kept having additional improvement with each type of thiamine.  I've taken thiamine for almost fifteen years now.  I still take all three kinds on maintenance doses.  You have to experiment and see which ones work best for you in which combination.   I'm right here if you need anything.   You'll be fine.
×
×
  • Create New...