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I probably have celiac don't I...

PhoMu
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PhoMu Newbie
PhoMu
Posted

Hi everyone, 

My name is Jenn (35) and have been a type 1 diabetic since 1992. I went in for my regular diabetic check up thingy and my doc called me back worried.
She told me I maybe have celiac and send me to a specialist doc and get me further tested. Which I did. 

These are my results:

IgA 2.34 g/L (normal 0.40-3.50)
anti - tTG IgA >128 U/ml (normal <10.0)
anti endomysium IgA posittive (normal negative)
MCM6 gen negative. (so I am also lactose intolarant) primaire lactose intolerant

My new doc will call me next wednesday about the results.

So far I didnt experience any of the regular symptoms. 
I did/do feel down for over a year now, and just found out that this maybe can be related to celiac? (I always thought I had this because I made a career switch which I am not happy about)
I do have a little bit reddish rash on my arm, but it is not tested yet.
And I am tired all the time (which I always thought it was because of being a type 1 diabetic for so long)

So I think I am maybe a silent celiac?
 

 

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trents Grand Master
trents
Posted

Welcome to the forum, PhoMu!

With those high numbers in the celiac antibody tests there is not much question that you do have celiac disease and your conclusion that you may be a silent celiac certainly makes sense if you have not GI symptoms. However, that does not equate to having no villous atrophy in the small bowel lining. Your GI doc may want to do an endoscopy  with biopsy to check that. By the way, silent celiac disease is very common.

PhoMu Newbie
PhoMu
Posted
  • Author

Thanks @trents for replying!

I will patiently wait for the phone call next wednesday then to get it officialy confirmed.
and enjoy my last weeks of eating gluten before the endoscopy...

Scott Adams Grand Master
Scott Adams
Posted

In Europe doctors may diagnose you with celiac disease if your results are 10x the level for celiac disease or higher on a anti - tTG IgA test, without doing a biopsy, but you should ask your doctor about this.

PhoMu Newbie
PhoMu
Posted
  • Author

@Scott Adamsthat would be nice! I will ask him when he calls.

Scott Adams Grand Master
Scott Adams
Posted

Please let us know how things turn out.

PhoMu Newbie
PhoMu
Posted
  • Author

I will!

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Kurlykaitlyn Explorer
Kurlykaitlyn
Posted
On 9/13/2023 at 1:40 AM, PhoMu said:

Hi everyone, 

My name is Jenn (35) and have been a type 1 diabetic since 1992. I went in for my regular diabetic check up thingy and my doc called me back worried.
She told me I maybe have celiac and send me to a specialist doc and get me further tested. Which I did. 

These are my results:

IgA 2.34 g/L (normal 0.40-3.50)
anti - tTG IgA >128 U/ml (normal <10.0)
anti endomysium IgA posittive (normal negative)
MCM6 gen negative. (so I am also lactose intolarant) primaire lactose intolerant

My new doc will call me next wednesday about the results.

So far I didnt experience any of the regular symptoms. 
I did/do feel down for over a year now, and just found out that this maybe can be related to celiac? (I always thought I had this because I made a career switch which I am not happy about)
I do have a little bit reddish rash on my arm, but it is not tested yet.
And I am tired all the time (which I always thought it was because of being a type 1 diabetic for so long)

So I think I am maybe a silent celiac?
 

 

Hi there, 

It’s very common when being diagnosed for celiac as an adult to have silent symptoms. Even though we might have minor symptoms like fatigue, rashes, or digestive issues, it seems as though our bodies can mostly tolerate gluten. I always had my own health struggles growing up that had nothing to do with celiac disease, but I got diagnosed at age 24 and my health improved immensely after diagnosis!! I knew something was wrong with me but no idea about gluten and celiac. With that, I am ALOT more sensitive to gluten now than I was before diagnosis because I am so careful about ingesting and getting contaminated, I try to be anyway… 🙄 typically your sensitivity to gluten can increase once you avoid it, though some can be truly silent. 

if you get confirmed as a celiac, welcome to the group. I highly recommend you research about celiac disease, living with an autoimmune diseases, and especially especially especially about contamination and preparing your kitchen to be celiac safe. This site has a ton of resources and information about celiac to help you! I’m wishing you all the best whatever the results are and your journey!

PhoMu Newbie
PhoMu
Posted
  • Author

Doc called today,

He confirmed that I am a celiac. So it is official now. I am a member of this club now :)

It is going to be a big transition tho hahah

trents Grand Master
trents
Posted
21 minutes ago, PhoMu said:

Doc called today,

He confirmed that I am a celiac. So it is official now. I am a member of this club now :)

It is going to be a big transition tho hahah

Welcome to the celiac club! Big transition, yes! But it will become the new norm.

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