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

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


e&j0304

Recommended Posts

e&j0304 Enthusiast

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

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

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

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

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

richard

jenvan Collaborator

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

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
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

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

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

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
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

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

Shannon- Hugs to you and your little guy. Beverly

e&j0304 Enthusiast

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,776
    • Most Online (within 30 mins)
      7,748

    peskywabbit
    Newest Member
    peskywabbit
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
      While hypoglycemia isn't a direct, classic symptom of celiac disease, it's something that some individuals with well-managed celiac disease report, and there may be a few plausible explanations for why the two could be connected. The most common theory involves continued damage to the gut lining or nutrient deficiencies (like chromium or magnesium) that can impair the body's ability to regulate blood sugar effectively, even after gluten is removed. Another possibility is delayed stomach emptying (gastroparesis) or issues with the hormones that manage blood sugar release, like glucagon. Since your doctors are puzzled, it may be worth discussing these specific mechanisms with a gastroenterologist or endocrinologist. You are certainly not alone in experiencing this puzzling complication, and it highlights how celiac disease can have long-term metabolic effects beyond the digestive tract.
    • trents
      Paracetamol, aka, acetaminophen (Tylenol) just does not do anything for me as far as pain relief. It does help with fevers, though.
×
×
  • 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.