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 Can Doctors Not Know

Tammy Dudley

By Tammy Dudley
in Doctors

Recommended Posts

Tammy Dudley Newbie
Tammy Dudley
Posted

This past fall I was tested for celiac disease and the doctor said I don't have it. All of my symptoms say I do. I went off of gluten for 2 weeks and my symptoms all but mostly disapeared. How is it that they can tell you no you don't have a problem when clearly a person can almost diagnose themselves?

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

TAmmy

testing for Celiac is not precise. There are many false negatives. You could also have non Celiac gluten intolerance. Same thing though, the cure is a life long gluten free diet. If it works for you, go with it. Doctors will catch up some day.

janie

bluebonnet Explorer
bluebonnet
Posted

from my own reading and learning about celiac through various books, websites etc. the concensus seems to be that many doctors don't know because there is not as much research being done due to no money/interest in pharmecuetical companies? there are doctors out there willing to help though. best wishes! :)

ksangie Rookie
ksangie
Posted

I tested negative for celiac back in '06, through both blood and biopsy. Well, it turns out the just tested EMA and I'm IGA deficient, so throw that out! They also biopsied the large intestine (as we all know it should have been the small intestine!!) Fast forward four years and I have a doctor that knew what to order (the FULL celiac panel) and a GI who is willing to (after seeing IGG of >100) do the biopsy right! Doctors are not gods, even if some think they are. If the diet is working for you, stick with it. I wish I hadn't thought the doctor was right so many years ago!

Johnstan Newbie
Johnstan
Posted

I agree. If the diet is working, don't question it, stick with it. You are the only one that truly has to live with the symptoms. Trust your instinct.

reeetz Rookie
reeetz
Posted

Tammy, I am having the same problem right now! I was also told that I would be tested for Celiac (through a colonoscopy) which came back negative. Although I should have been having my small intestine tested! Of course it came back negative! The doctor didn't even run the blood panel to test, he just said that he thinks my symptoms are too severe and that there is no treatment for Celiac so it's not that. Going on a gluten free diet is the ONLY thing that has helped me. I feel about 90% better now and have been on the diet for 4 weeks. Still have some bad days though. I am going to see another doctor next week to see what she says though. But if the diet works, the diet works. Don't make yourself sick because doctors don't always know everything.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Tammy, I am having the same problem right now! I was also told that I would be tested for Celiac (through a colonoscopy) which came back negative. Although I should have been having my small intestine tested! Of course it came back negative! The doctor didn't even run the blood panel to test, he just said that he thinks my symptoms are too severe and that there is no treatment for Celiac so it's not that. Going on a gluten free diet is the ONLY thing that has helped me. I feel about 90% better now and have been on the diet for 4 weeks. Still have some bad days though. I am going to see another doctor next week to see what she says though. But if the diet works, the diet works. Don't make yourself sick because doctors don't always know everything.

Every doctor who says there is no treatment for celiac should lose their license. That is appalling and every time I read on here that a doc said that I want to scream. There is a treatment. Gluten free diet. Just like the treatment for peanut allergy is no peanuts, or dairy allergy is no dairy. He should not be practicing medicine.

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

Celiac.com Sponsor (A8-M):


CarolMil Newbie
CarolMil
Posted

This past fall I was tested for celiac disease and the doctor said I don't have it. All of my symptoms say I do. I went off of gluten for 2 weeks and my symptoms all but mostly disapeared. How is it that they can tell you no you don't have a problem when clearly a person can almost diagnose themselves?

I am going thru this as well. My Dr. has celiac. She tested me in 2003, and I was negitive. So I lived my life sick all the time and figured I had no choice... I started reading about having a gluten intolarance and gave up gluten. I was like I waived a magic wand and was cured. I went back to mr Dr. and told her, and she agreed that o have an "intolarance".

With that said if you feel better give it up!!!! Yes it's a HUGE life change, but it sure is amazing to feel cured!!!

nixie-nox Newbie
nixie-nox
Posted

from my own reading and learning about celiac through various books, websites etc. the concensus seems to be that many doctors don't know because there is not as much research being done due to no money/interest in pharmecuetical companies? there are doctors out there willing to help though. best wishes! :)

That actually doesn't surprise me as the cure is easy, diet change. There is no money to be made for pharma.

UNLESS, they wanted to come up with a gluten blocker pill that would let celiacs eat gluten. *smiles*

nixie-nox Newbie
nixie-nox
Posted

I am not bashing doctors but lately I wonder what they would of done if they didn't have blood tests. How did they ever diagnose anyone before blood tests? I h ave had wacky symptoms and tests lately on different levels but one little test comes up and I am declared as nothing wrong. My mother prompts me to ask: if there was no such thing as blood tests, what would you think?

The doctor I have come to trust the most? Pediatrician. They always seem to nail it and barely look at my kid. I went to my doc and the er when I was vomitting for days and felt like death warmed over. I got a stomache virus. I brought my kid in, told her the symptoms. She goes: lyme disease. Went back to my doc for tests, we both had lyme disease. She got my full respect.

Sorry, little tyrade. :)

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 (3) and low vitamin D (10). 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...
    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
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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 (3) and low vitamin D (10). 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.