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

Anything Else I Should Be Doing?

BlueFenris

Recommended Posts

BlueFenris Newbie
BlueFenris
Posted

So I came across celiac disease completely by accident because I saw something about it and was curious so I looked up more info. As I was looking at stuff, I realized that the symptoms sounded a bit too familiar for comfort. I've struggled with anxiety, depression, bloating, constipation, and migraines for a long time. I also definitely have brain fog, I've had very low vitamin D test results, I've always been super pale, always tired, been very irritable, had major mood swings, insomnia, prone to canker sores, etc. The migraines became such a problem that last year I barely managed to pass my senior year of high school because I was having nearly daily migraines. We finally found a treatment that worked for a while but now the migraines are become more frequent again, and when I don't have a migraine I seem to have at least somewhat of a regular headache, and recently my stomach has been aching quite often too. So after seeing that all of these can be symptoms of celiac disease, I scheduled an appointment for Friday to talk to my doctor and have the blood tests done. I've got a list of my symptoms written down and am still on a gluten diet. Is there anything else I should do to prepare or does anyone have any pointers for me? On the one hand I hope it's not celiac, but on the other hand, if it is, a change in my diet could potentially change my life and take care of so many issues I didn't think were related to each other. 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi,

If you are near a large city, you could look up a celiac support group now.  Contact them and ask if they know any good celiac aware doctors.  Many doctors don't seem to be aware of proper tasting processes.  If you do find a local celiac support group they may be able to help in other ways too.

Otherwise, it sounds like you are doing the right things so far.

BlueFenris Newbie
BlueFenris
Posted
  • Author

I do know there's a support group about an hour's drive from where I am. I'll get in contact with them! Thank you!

cyclinglady Grand Master
cyclinglady
Posted

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

BlueFenris Newbie
BlueFenris
Posted
  • Author
1 hour ago, cyclinglady said:

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

Okay, I will be sure to request that! Thank you for the input!

BlueFenris Newbie
BlueFenris
Posted
  • Author

Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Rectal pain

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this. I am not a medical person but it seemed like the extra pressure...
    2. Rogol72
      - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Guinness, can you drink it?

      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    3. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      6

      Related issues

      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead...
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Brain fog

      How bad can this get ?? Does it go away?? How long ? Thank you
    5. Clear2me
      - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Gluten free nuts

      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat. I am going to keep checking. Thank...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,275
    • Most Online (within 30 mins)
      7,748
    NPS3
    Newest Member
    NPS3
    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

    • cristiana
      Rectal pain

      By cristiana · Posted

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    • Mari
      Related issues

      By Mari · Posted

      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net)  When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten? You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?
    • Colleen H
      Brain fog

      By Colleen H · Posted

      How bad can this get ?? Does it go away??  How long ? Thank you 
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat.  I am going to keep checking. Thank you. The Azure Market looks promising 😁 Take care S
×
×
  • 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.