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Official biopsy results in

Keight
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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. 

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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!

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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.

 

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