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

Doctors & Getting Diagnosed


Kat70R

Recommended Posts

Kat70R Rookie

Hi, I am new the board =)

I may have celiac, I am in the process of getting insurance and I will get testing done.

Dreading facing doctors, I have been through so many blood tests through the years, told nothing was wrong and I was depressed. Through a lot of searching I have found that I have many symptoms of Celiac. Brain fog, constipation, cramps, lactose intolerance, extreme fatigue, depression, dry skin and hair, eczema, may be anemic, cold intolerance, horrible canker and cold sores. Told I had chronic fatigue at 17, I am not 41 and still fighting the fatigue. Seems like I have been tired for most of my life, barely pushed through work and motherhood.

How do I get the docs to authorize the tests? I am going to be getting Kaiser HMO insurance, been with HMO's before where docs will not listen, just afraid that I will have the same experience. How will I get them to listen and help me?

Kat


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



Celiac.com Sponsor (A8-M):



cassP Contributor

hi Kat!

please also get your thyroid tested- you're tired, cold, and have thin/dry hair? plus you think you may have celiac- they're so commonly linked.

try not to work yourself up and breathe- be confident. YES- we all have similar frustrations with docs... i still sometimes struggle with mine- you just have to stand your ground.

i first asked my PCP for a Celiac panel in 2008. she didnt question me too much- because i had been complaining of abdominal crap for quite some time. when it came back "suspicious"- she was so curious as to why i asked for it... wierd.

she was a little suspicious of me when i asked for a thyroid panel (even though she wanted to test me years ago)... she was hesitant because i wasnt cold or overweight- and i composed myself and said- "But im always constipated- and my mom has Hashimoto's"... so she was like... "ok..."

i know seriously how it can be a struggle... just be calm and confident- you've got enough symptoms- and this is YOUR body and YOUR life!!!!! good luck!!!!!

frieze Community Regular

if the doc refuses, tell him/her that you want signed documentation that the testing was refused and WHY.

Kat70R Rookie

hi Kat!

please also get your thyroid tested- you're tired, cold, and have thin/dry hair? plus you think you may have celiac- they're so commonly linked.

try not to work yourself up and breathe- be confident. YES- we all have similar frustrations with docs... i still sometimes struggle with mine- you just have to stand your ground.

i first asked my PCP for a Celiac panel in 2008. she didnt question me too much- because i had been complaining of abdominal crap for quite some time. when it came back "suspicious"- she was so curious as to why i asked for it... wierd.

she was a little suspicious of me when i asked for a thyroid panel (even though she wanted to test me years ago)... she was hesitant because i wasnt cold or overweight- and i composed myself and said- "But im always constipated- and my mom has Hashimoto's"... so she was like... "ok..."

i know seriously how it can be a struggle... just be calm and confident- you've got enough symptoms- and this is YOUR body and YOUR life!!!!! good luck!!!!!

Thank you CassP!

your reply is very helpful and encouraging! i have had thyroid tests in the past, always come back negative. my hair is actually very thick but dry, my skin is more on the dryer side. I am terribly cold all the time! Maybe I should have thyroid tested again, I have had so many tests in the past without finding anything wrong, Anemia did come up in my last pregnancy though. I know that gluten does not make me feel good so it will be good to get tested. I just hope that the test can be accurate, though. I really need to know what is going on.

mushroom Proficient

If your thyroid testing was done a while ago they may have been using the old ranges. The new range for TSH is much lower than the previous, which was ridiculous. I was cold all the time, would get into bed and shiver in the middle of summer :o , and they tested me on the old scale. Since I was at the top (but still normal by that standard) I persuaded my doc to give me the smallest dose of Levothyroxine, and I haven't been cold for a long while now.

As for approaching the appointment, I would print out a list of celiac symptoms, and highlight all those from which you suffer, and give that to the doctor when you are telling him your story. It would just reinforce in his mind how many of them you have. It would also help you organize your thoughts so you don't leave anything out. :)

Kat70R Rookie

Thank you Frieze and Mushrooms, i will keep these things in mind, will write out the symtems so I don't forget! My memory is very poor, another system I guess! =)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - KCGirly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Symptoms and trying to figure this out

    2. - emily 1 replied to emily 1's topic in Coping with Celiac Disease
      5

      Black Pepper Reactions

    3. - Barcino replied to Onemoreceliac's topic in Related Issues & Disorders
      17

      Chronic duodenitis and gastritis post diagnose

    4. - trents replied to emily 1's topic in Coping with Celiac Disease
      5

      Black Pepper Reactions

    5. - knitty kitty replied to dlaino's topic in Coping with Celiac Disease
      1

      Coping with celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,890
    • Most Online (within 30 mins)
      7,748

    Anita Brown
    Newest Member
    Anita Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • KCGirly
      Back in September I started Semaglutide for weight loss. Shortly after starting I started having stomach issues - vomiting, diarrhea, red itchy palms and elevated heart rate.  I would have The episodes were every two weeks or so.  I stopped taking the semaglutide, but continued to have episodes.  GP ran bloodwork all normal, including celiac.  Ordered a stomach emptying test it was normal too.  The itchy palms stumped him.  So he ordered blood allergy test all came back normal no allergies. He had me go gluten free 11/29.  Finally got into a GI doc on 12/16.  She wanted me to reintroduce gluten back in my diet on 12/23 and then have scope on 1/8.  Well, 5 days in with gluten, I had an episode. I’m not sure I can keep eating gluten for 10 more days.  I have PTSD thinking about possibly having an episode(s) again.  Anyone going through this? Or have thoughts/suggestions?
    • emily 1
      Very helpful. Oh yes, I am quite fastidious about not falling off the diet. It's just that the list of things I must add to the restrictions seems to grow.   
    • Barcino
      I know this post is old but was wondering if you ever resolved this. My son is in the same situation. Villi healed but gastritis / duodenitis remain and calprotectin elevated. Now testing for crohns which I am freaking out about. 
    • trents
      I did a little research and one kind of aphthous ulcer (aka, canker sore) is the Herpetiform canker sore. It is well-known that celiac disease can cause a skin rash known as herpetiformis dermatitis. I can't help but wonder if there is a connection. Celiac disease is also listed in this article as a cause for canker sores: https://www.mayoclinic.org/diseases-conditions/canker-sore/symptoms-causes/syc-20370615 Are you observing a strict gluten free diet? You might also look into reducing iodine consumption as that is known to help with herpetiformis dermatitis. Perhaps it will help with your canker sores as well. 
    • knitty kitty
      Do you wear an M-95 mask left over from the pandemic when you handle flour? Do you eat out in restaurants? Do you take vitamins?  
×
×
  • Create New...