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

Official biopsy results in

Keight
 Share

Recommended Posts

Keight Enthusiast
Keight
Posted

Definite Coeliac diagnosis. Super high bloods and severely damaged villi. 

 

Welcome to the elite team, hey?? ?

 

Thank you all for putting up with me the last 4 weeks. Especially to Cyclinglady. 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Welcome to the club you never wanted to be a member of!:D At least we don't have to take pills, do chemo, or stick ourselves with a needle every day. 

Now you can start healing.

GFinDC Veteran
GFinDC
Posted

Congrats Keight !

It is often difficult to get a celiac disease diagnosis.  But you stuck it through and got the medical profession to do their job.  ? That's probably about the most help you'll get from them though, a diagnosis.  Sometimes they will set you up an appointment with a dietician who doesn't eat gluten-free.  Very helpful, NOT :)  Other times they may test your nutrient levels (vitamins and minerals) and suggest some supplements.  And rarely you may get a doctor who does follow-up testing on your antibody levels in 6 months or a year.  Or even one who wants to test all your first degree relatives to see if they have celiac disease too.

Regardless of the help or lack of help form the medical profession, you can always come here to the forum and get help and advice from us, people who actually live with the condition.

There is lots to learn about eating/living gluten-free.  Please deposit 5 cents in the coin lost and ask any questions you want. :)

cyclinglady Grand Master
cyclinglady
Posted

At least you know where you stand.  Now, you can move forward and heal.  

Avoid eating out until you are feeling really good.  Avoid proceeded foods as much as possible.  I think it helps speed healing.  Know that concurrent food intolerances are common and can resolve.  Listen to the advice of seasoned forum members.  Knowledge/research is your best defense.  

Keep in touch.  Your story can and will help so many others.  ?

Keight Enthusiast
Keight
Posted
  • Author

I am quite fortunate in that my GP has already made a note in my file for the biopsy in 12 mths, and she has already arranged for my boys to have serology tests. Plus, she wrote a list of supplements I need, the amounts I need and made an appointment for a dexa scan. She is totally on the ball. She wanted to give me a list of accredited dietiticians, but I wish to find my own. 

Oh, to have found her years ago!

cyclinglady Grand Master
cyclinglady
Posted
19 hours ago, Keight said:

I am quite fortunate in that my GP has already made a note in my file for the biopsy in 12 mths, and she has already arranged for my boys to have serology tests. Plus, she wrote a list of supplements I need, the amounts I need and made an appointment for a dexa scan. She is totally on the ball. She wanted to give me a list of accredited dietiticians, but I wish to find my own. 

Oh, to have found her years ago!

You are so lucky to have a doctor who knows what she is doing!  

squirmingitch Veteran
squirmingitch
Posted
On 9/22/2019 at 4:09 AM, Keight said:

I am quite fortunate in that my GP has already made a note in my file for the biopsy in 12 mths, and she has already arranged for my boys to have serology tests. Plus, she wrote a list of supplements I need, the amounts I need and made an appointment for a dexa scan. She is totally on the ball. She wanted to give me a list of accredited dietiticians, but I wish to find my own. 

Oh, to have found her years ago!

Oh man! Are you ever lucky!

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

Celiac.com Sponsor (A8-M):


Keight Enthusiast
Keight
Posted
  • Author
On 9/24/2019 at 12:49 PM, squirmingitch said:

Oh man! Are you ever lucky!

I know, right?? I feel I kind of earned it; after 46 yrs of other doctors saying all sorts of things and not bothering to look at the bigger picture. 

Beverage Proficient
Beverage
Posted

I'm  so glad you found out.  I was 58 when I found out, now 63.  Looking back, I probably had it since I was a teenager or at least young 20's.  So many other problems that are taking me years to overcome, and some I never will.  But I still consider the day the naturopath told me as the day that man saved my life.

 

Keight Enthusiast
Keight
Posted
  • Author
50 minutes ago, Beverage said:

I'm  so glad you found out.  I was 58 when I found out, now 63.  Looking back, I probably had it since I was a teenager or at least young 20's.  So many other problems that are taking me years to overcome, and some I never will.  But I still consider the day the naturopath told me as the day that man saved my life.

 

I have to try hard to stop myself being upset at doctors. To think you could have had a lot less to shoulder... Sigh. I guess your thinking is best; be grateful we find out eventually rather than not at all. :)

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
On 9/20/2019 at 6:52 AM, squirmingitch said:

Welcome to the club you never wanted to be a member of!:D At least we don't have to take pills, do chemo, or stick ourselves with a needle every day. 

Now you can start healing.

Wise words that is helpful for us all to hear from time to time.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
(edited)
1 hour ago, Keight said:

I have to try hard to stop myself being upset at doctors. To think you could have had a lot less to shoulder... Sigh. I guess your thinking is best; be grateful we find out eventually rather than not at all. :)

Being upset is part of the process. So if the feeling of being upset at the way we were treated, misdiagnosed etc. It is par for the course.

My suggestion allow it. Feel it and allow those feelings or thoughts they are valid. Your experiences were what they were on this path, and sometimes they were bad and it's ok to grieve or be angry about it as you process this .

Edited by Awol cast iron stomach
Autocorrect incorrect
Keight Enthusiast
Keight
Posted
  • Author
On 10/2/2019 at 8:20 AM, Awol cast iron stomach said:

Being upset is part of the process. So if the feeling of being upset at the way we were treated, misdiagnosed etc. It is par for the course.

My suggestion allow it. Feel it and allow those feelings or thoughts they are valid. Your experiences were what they were on this path, and sometimes they were bad and it's ok to grieve or be angry about it as you process this .

Aye. Good advice. Thank you. 

DebJ14 Enthusiast
DebJ14
Posted

So glad you found out.  It only took me 54 years to get a diagnosis and the reason I initially saw the doctor was for an orthopedic problem.  After a thorough physical he said that was the least of my problems and he was 99% sure I had a gluten problem.  He sent me straight to the lab.  The results were off the charts positive, but due to other health issues I could not have an endoscopy, so I had genetic testing.  He ordered testing for my immediate family.  Both sons and grandsons tested highly positive as well.  My daughter in law and husband of course were in denial that they had a problem, but he pointed out they both had extra intestinal symptoms.  They were both positive and my DIL is a Super Celiac.  Positive Serology, both HLA DQ 2 and HLA DQ 8 and totally flattened villi!  Holidays are easy at our home since everyone is gluten-free.  Hubby, both sons and I are also Casein free.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748
    kyle68j
    Newest Member
    kyle68j
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...