Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
      127,356
    • Most Online (within 30 mins)
      7,748

    Deb powell
    Newest Member
    Deb powell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • disneyfamilyfive
      Good morning, I thought I’d quickly update this post.  A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation.  It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit.  Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps.  He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely.  5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue.  GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. 
    • knitty kitty
      @Matt13  I understand where you're coming from.  Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps.   We make histamine in our bodies as a useful  neurotransmitter (causing alertness), and also as a response in the immune system.  Histamine is made and released by Mast Cells.  Mast Cells can become hypersensitive to stimulus and release histamine easily, like having an itchy trigger finger.  Mast Cells need Thiamine Vitamin B 1 Benfotiamine in order to NOT release histamine.  Mast Cells that do not have sufficient Thiamine release histamine easily and at the slightest provocation.   Plants and other animals make histamine, too.  By removing high histamine foods from the diet, more histamine can be removed from the body.  We need Pyridoxine, Vitamin B 6, Vitamin C, Cobalamine, B12, and Thiamine B1 to make Diamine Oxidase, an enzyme that breaks down histamine.  If we don't make sufficient DAO ourselves, DAO supplements are available over-the-counter.   Removing Nightshades (tomatoes, potatoes, eggplant and peppers) was very helpful.  Nightshades contain alkaloids that cause Leaky Gut Syndrome wherein large molecules of food can pass through the walls of the intestines into the bloodstream, traveling to other organs and structures where they promote inflammation.   After a few days on the low histamine Paleo diet, the Autoimmune Protocol diet, I started feeling better.  My diet was really restricted, but I felt so much better, I stuck with it.  Eating foods that were easy to digest and low in histamine allowed time for healing.  After a few weeks, I was ready to add one food at a time (two week period) back into my diet.  I had setbacks when I ran into a food my body didn't like, and had to go back to the start, but it was worth doing.  Celiac is a marathon, not a sprint.   Blood tests are not accurate measurements for various B vitamin deficiencies.  Vitamin levels in the bloodstream are different from the amount stored inside cells inside organs where they are utilized.  You can have symptoms of a deficiency yet have "normal" blood levels.  The best way to test for a B vitamin deficiency is to take it and look for health improvement.  B vitamins are easily excreted because they are water soluble.  Malabsorption in Celiac can affect all the vitamins and minerals our bodies need, not just one.  Do talk to your doctor and nutritionist about supplementing while healing.  
    • Morgan Tiernan
      A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was absolutely right! Currently waiting for biopsy confirmation though. In terms of swollen lymph nodes, I get this when my rash is present. Mostly in my neck and they’re a lot more swollen if I’ve been cross-contaminated with gluten and when the rash is at its worst!   
    • knitty kitty
    • knitty kitty
      Welcome, @Morgan Tiernan, The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin.  Flushing Niacin clears my skin quickly.   Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove the antibodies that gather in those pustules.  The flushing lessens the longer Niacin is taken, but still works at keeping the blisters away.   Be sure to take a B Complex and Benfotiamine, a form of Thiamin , Vitamin B 1.  Covid, shingles and other infections like strep throat deplete our Thiamine quickly.  Having frequent infections can indicate low Thiamine.  We have a higher metabolic demand during infections, physical trauma or surgery, emotional and mental stress, and while physically active like dancing.    Thiamine has anti-virus and antibacterial properties.  The eight essential B vitamins work together.  Taking Benfotiamine in addition to the B Complex is safe and nontoxic.  Excess B vitamins are easily excreted because they are water soluble.  New Celiacs are often low in vitamins and minerals due to malabsorption.  Vitamin D can help calm the immune system.  Following a low histamine Paleo diet , like the Autoimmune Protocol Diet by Dr. Sara Ballantyne, a Celiac herself, is also very helpful.  Steroids lower histamine, but the low histamine AIP diet is safer.   This research may be old, but Flushing Niacin does work!!! Nicotinic acid therapy of dermatitis herpetiformis https://pubmed.ncbi.nlm.nih.gov/15412276/ P.S. Wearing natural fibers helps my dermatitis herpetiformis.  Synthetic fibers keep sweat next to the skin, causing further irritation.  Natural fibers wick moisture away, keeping skin dry and exfoliated.
×
×
  • Create New...