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

Help!


md395

Recommended Posts

md395 Newbie

I live in rural wisconsin and was diagnosed with celiac disease and tested positive for Crohn's disease also. Still ill, (enlarged lymph nodes, biopsy/neg, night sweats, etc) I see that a lot of celiac's on this site have a lot of other diseases/conditions and /or have tests done to verify their health status. Most of these tests I have never heard of, let alone had done on me. What is a must as a "newly diagnosed" celiac to ask for from a doctor, to make sure my body doesnt have associated diseases/disorders, due to nutrition or from the celiac itself? I already undergo iron infusions, because my body is unable to absorb iron via supplements etc. Any suggestions or direction would be most helpful going on 6 months of chronic illness, been gluten-free that long also. Thank you all for you input. -mary :(


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Arm yourself with information and research when you go to your doctor. That he will know much about Celiac disease is highly unlikely. Avoid being a know it all but try to educate him/her with lead in questions and comments like, "Doctor, I read that . . ." "Should we look at . . .?" "Do you think . . .?" Occasionally bring something in print to show him. If your doctor is closed to education get another one. Actually, your best bet might be to go to a gastro enterologist since he specializes in diseases of the gut. Even then, however, there is no guarantee that a given gastro doc will be really up on Celiac disease. Your insurance might require you to get a referral from your GP for appointments with specialists, however.

ravenwoodglass Mentor
I live in rural wisconsin and was diagnosed with celiac disease and tested positive for Crohn's disease also. Still ill, (enlarged lymph nodes, biopsy/neg, night sweats, etc) I see that a lot of celiac's on this site have a lot of other diseases/conditions and /or have tests done to verify their health status. Most of these tests I have never heard of, let alone had done on me. What is a must as a "newly diagnosed" celiac to ask for from a doctor, to make sure my body doesnt have associated diseases/disorders, due to nutrition or from the celiac itself? I already undergo iron infusions, because my body is unable to absorb iron via supplements etc. Any suggestions or direction would be most helpful going on 6 months of chronic illness, been gluten-free that long also. Thank you all for you input. -mary :(

It is best to wait to explore whether you have other disorders related to celiac if you do not have glaring symptoms of any. The reason why I say this is that many things will 'disappear' on the gluten free diet and celiac impacts so many systems that many problems will clear on their own. Many of the diseases related to celiac are present because the celiac was never diagnosed and the antibodies have had a severe impact. There are some blood tests you should have done though, your vitamin and mineral levels should be checked and then it is a good idea to recheck again after 6 months to a year gluten-free to see if you are absorbing nutrients properly again.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748

    Rockette47
    Newest Member
    Rockette47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.