Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Tammy Dudley

How Can Doctors Not Know

Rate this topic

Recommended Posts

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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! :)

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!!!

Share this post


Link to post
Share on other sites

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*

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,757
    • Most Online
      4,125

    Newest Member
    Betsy17
    Joined
  • Forum Statistics

    • Total Topics
      112,048
    • Total Posts
      956,574
  • Who's Online (See full list)

  • Forum Discussions

    Thank you so much! and yes, I am aware of other allergies. I have leaky gut as well and have a food allergy to potatoes and corn as well and my mother eats those too. So very stressed out. I went downstairs and found a mini fridge and im going to start using that because like you said, handles, faucets, etc are too much. the stress does not help the body either, ive been getting sick three times a week. its very hard.  I am glad there are people who understand! Sounds like you were concerned too
    The cheese and avocado are fine, the gluten was not aerosolized anything like that. NOW if your allergic to wheat there could be some issues being around it like that (some severe cases of peanut allergies can go off if it is in the room) but you would be anaphylactic.  I get the paranoia, it gets to the point of being almost PTSD. You fear to get sick so bad because the weirdest things have bedridden you. I got glutened touching gluten residue on facets, fridge door handles, etc in my old
Alaskaguy, Here is the research you are looking for they are entitled "Maize prolamins resistant to peptic-tryptic digestion maintain immune-recognition by IgA from some celiac disease patients." and "Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients." respectively. https://www.ncbi.nlm.nih.gov/pubmed/22298027 https://www.ncbi.nlm.nih.gov/pubmed/24152750 It is like Oats ...Corn can bother a subset of celiac's. ...reintroducing
  • Blog Entries

  • ×
    ×
    • Create New...