Jump to content
  • Join Our Community!

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

Rate this topic

Recommended Posts

I've been gluten-free since may with OBVIOUS improvement. My primary sent me to a G.I to see about celiac even though I am gluten-free. The G.I said its not worth putting me through the testing for celiac since I've been gluten-free for so long....

I went back to my primary today for a follow-up and he got VERY upset that the G.I refused to test me. Now he wants me to find another G.I to get tested even after I told him the tests would most likely come back negative; he kept disagreeing with me. He told me all I need to do is go on gluten for 2 weeks and get the biopsy. He agrees that the blood work would still be negative, but he said the biopsy would definitly show damage after 2 weeks of gluten...I disagreed.

I know about the gene test so I asked him (acting as if I didnt know)if there is a gene test I could get done to at least rule it out first and he shook his said and said "NO" !!!!!!!! WT--!!!! Then he went on to say something like "you are so young (22) and I really dont think by the symptoms you told me you have celiac (which btw were C, D, anemia, fatigue, bloating, foul extreme gas to name a few)- you have your whole life ahead of you and there is nothing you can eat b/c gluten is in everything...blah blah blah...you shouldnt have to go through all that if you dont have to"

OMG I was fuming!!!!, but kept my cool.

EVEN IF I DONT HAVE CELIAC I AM STILL FOLLOWING THE DIET!!!!!! I love eating gluten-free. People dont understand that. I have never felt better!! I never thought there would be a day that I would find the cure to my problem and that I would live the rest of my life bloated and miserable. I would much rather go through the "burden" of eating gluten-free than go through the humiliation and discomfort I went through before!!!!!

I dont know what else my problem could be if it isnt gluten sensitiviity/celiac. I mean, what would they do?? give me a medicine??? I REFUSE to take medicine. I KNOW gluten bothers me so I DONT EAT IT!!! and unlike the doctor said there are lots of things I can eat!! GGGRRRR!!!!

also, my blood results from my last test showed my hemoglobin was 13.8- it hasnt been that high in years!!!! I was so happy. and my bp was 100/70. except my potassium was low.....but at least I'm not anemic anymore!!! you think that would tell the doc something..but nooooooo....

anyone have any suggestions??? I just got this doctor, and I like him b/c he actually does care, but grrr!!! celiac is not his specailty!!!! lol. Would it even be worth calling the G.I doc back and telling him what my primary told me?? I mean.. my primary told me "well, the g.i is probably busy and just didnt want to test you, he isnt a diligent doctor" I guess I could at least ask him about the gene test.....ughhhh!!!!!! I would like to know if I have celiac too, but at this point its not so easy to get tested and get true results...

sorry I just spent hours venting about this to my mom!!! and I could still vent forever!!! this seems to be endless.....I had to hold back tears in the doctors office. I mean, why would I even put myself though all of this if i know what the problem is. I would rather spend less money on food anyday and just go out and eat whatever and wherever I want, but i cant b/c it leads me to being bed riddena nd feeling like complete crap all the time!!!!!!!well, you all know what its like... :lol:

Share this post


Link to post
Share on other sites

Been there done that. Going to see GASTRO tomorrow - if anything she will label me with Gluten intolerance. I have already been told I was celiac by a doctor at a urgent care.

Like you I will not be going back to eating gluten to satisfy doctors who don't have to live our life of the pain of celiac, and other health issues that come with it.

I feel I am already been label by the urgent care doctor. The main purpose I wanted the GASTRO to see the damage that gluten, and allergies has done to my esophogus, and stomach. Now I am just courious as to what she says, and scared of the biopsy to my esophogus and stomach.

My doctor said why take something that makes you sick, whether it be pain meds or gluten. I was extremely suprised when he said that.

I know how you feel. So many doctors can tell you how you feel without listening to what your symptoms are!!!!!!! I had a doctor give me a drug that I was allergic too. Their policy is to do no harm. She would not listen.

Some times I like to go into their office with a sheet of symptoms, and test the doctor to see if he would even come close to knowing how I am feeling. I tired of them saying your trying to self diagnose, or I am on the computer to much. I have been more right, and ordered more test from the doctor that come back positive, than the test the doctors have ordered out of the blue. Not everyone can follow a book with their health. Not everyone follows the rules to how they should react with medicine, and definitely not me. When I have breathing problems with a medicine, I don't take it. My doctor was shocked when I told him the increase in Vitamin D caused breathing problems, he didn't push. I know he is getting progressively more scare to prescibe anything. All I want is a diagnoses, for why I am falling apart, like you.

Some doctor, many don't have any positive bed side manner. They push through people, because here in Canada, there is thousands of people without doctors. People who are lucky to have a doctor, are getting less and less quality time with their doctor, because they have taken on many more they should have.

Vent now, and know your not alone.

Hugs

Gerri

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

    • May 29, 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
    • June 01, 2019 Until June 02, 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 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...