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

Please Help Me With Diagnosis


sadsickgirl

Recommended Posts

sadsickgirl Newbie

Hello everyone,

I'm mainly after Australians advice, specifically those in Sydney that can recommend some doctors that understand coeliac disease. I'm having a terrible time at the moment. Basically I've tested negatively for the blood test a number of times but I feel like I may still have coeliac disease and want to potentially have a biopsy done. The problem is there are no doctors that will take me seriously when I suggest this and say that if the blood test is negative then I don't have coeliac disease and theres nothing to worry about as I'm not really skinny.

I don't think my symptoms are classically coeliac disease but I'm so sick of feeling awful all the time I want to get this investigated.

- Severe hair loss - last 8 months.

- I have severe fatigue, tired all the time for the past 3 years.

- Severe depression for the past seven years, haven't responded to antidepressants at all.

- Moderate - severe back and neck pain for the past 8 months. I've been seeing a PT and have experienced no relief.

- Moderate joint pain which seems to be getting worse, for the past 8 months.

- Mild to moderate to occasionally severe GI symptoms, but these seem very random and I can't really find a pattern or connection with what goes on.

- Mild tingling/ numbness in hand and feet which like the GI symptoms is really random and follows no pattern. (I haven't told anyone about this as I pretty sure they'd think I'm mad).

Basically I feel like I'm in my 8th decade of life, not my second. If there is anyone, anyone at all that can recommend to me a doctor that will take me seriously I would be eternally grateful. I really feel at my wits end at the moment. I just got back from my doctor who said I have IBS and should try the FODMAP diet :(. Part of the reason why I'm desperate for testing is my family thinks I'm a hypochondriac and won't support me going gluten free unless I have a proper diagnosis.

Thanks for your help. Sorry for the ramble/rant.


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



Celiac.com Sponsor (A8-M):



beachbirdie Contributor

Hello everyone,

I'm mainly after Australians advice, specifically those in Sydney that can recommend some doctors that understand coeliac disease. I'm having a terrible time at the moment.

Thanks for your help. Sorry for the ramble/rant.

Dropped a message in the other topic where you asked for help in Australia. Hope it will help!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,019
    • Most Online (within 30 mins)
      7,748

    Wilson1984
    Newest Member
    Wilson1984
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • 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.
×
×
  • 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.