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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748
    Carol Zimmer
    Newest Member
    Carol Zimmer
    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

    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.