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hayleyebrooks

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hayleyebrooks Newbie
hayleyebrooks
Posted

Hello. Hoping someone can help me! My celiac blood panel came back normal at 0.4 reference 0-10 

My endoscopy showed raised IELs but the Dr called this a non specific finding because my bloods were normal. Could this still indicate celiac? Is it possible to have an IGA deficiency? 

Thank you 

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cyclinglady Grand Master
cyclinglady
Posted
20 hours ago, hayleyebrooks said:

Hello. Hoping someone can help me! My celiac blood panel came back normal at 0.4 reference 0-10 

My endoscopy showed raised IELs but the Dr called this a non specific finding because my bloods were normal. Could this still indicate celiac? Is it possible to have an IGA deficiency? 

Thank you 

Exactly what celiac tests were given?  I am assuming it was just the TTG IgA which catches most, but not all, celiacs (like me).  You could have an IgA deficiency, be a seronegative celiac or need other celiac tests (like the DGP or EMA).  But something is elevating your IELs (but no villi damage) and you should determine the cause.  Since that is most often related to celiac disease,  rule it out firmly before investigating other things that raise IELs.  Keep in mind that the small intestine is the size of a tennis court and that celiac disease damage can be patchy.  Did your GI take the appropriate amount of tissue samples and in the recommended locations?  

I hope  this helps you!  

hayleyebrooks Newbie
hayleyebrooks
Posted
  • Author
7 minutes ago, cyclinglady said:

Exactly what celiac tests were given?  I am assuming it was just the TTG IgA which catches most, but not all, celiacs (like me).  You could have an IgA deficiency, be a seronegative celiac or need other celiac tests (like the DGP or EMA).  But something is elevating your IELs (but no villi damage) and you should determine the cause.  Since that is most often related to celiac disease,  rule it out firmly before investigating other things that raise IELs.  Keep in mind that the small intestine is the size of a tennis court and that celiac disease damage can be patchy.  Did your GI take the appropriate amount of tissue samples and in the recommended locations?  

I hope  this helps you!  

Thank you for your. 

Yes just Ttg iga were tested in the blood. 

All I know is 4 biopsies were taken from the top of my small intestines. 

I never had a comment about villi damage so I assume it isn't damaged

I am seeing my gp next week as I know something isn't quite right. 

If you don't mind me asking do you know if your ttg iga was a very low number which is why they called it normal? 

Mine seems to be very low at 0.4 and the reference range being 0-10 the lab comment was 'celiac unlikely unless iga deficiency' but I've never been tested for that deficiency. 

Thank you again :)

cyclinglady Grand Master
cyclinglady
Posted

I wonder why your doctor did not order an IgA deficiency test as recommended by the Celiac UK organization?  

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Find out.  Get a copy of the lab report.

If you had it and your levels are fine, then the TTG IgA test would be valid.  Yes.  Your result is normal and is negative for celiac disease.  Does that rule out celiac disease?  No.  Ask your GI about the other celiac tests: DGP and EMA (and the elusive IgA deficiency test if it was never run).   They may not be available at NHS.   Perhaps private insurance or cash?  I am not sure how the UK system works.  

Maybe you are just starting to develop celiac disease or something else.  Talk to your doctor about what you should do next in terms of monitoring your health.  

Not that this applies to you, but my niece had ALL the celiac tests.  ALL of them.  Everything was negative — even the endoscopy and the colonoscopy (they did that too but it is not usually used to diagnose celiac disease).  They tested her extensively because I have celiac disease.  Later they did a pill camera and found Crohn’s disease damage located beyond the reach of both scopes.  

Does this apply to you?  Who knows?  But I am trying to tell you to be persistent. 

hayleyebrooks Newbie
hayleyebrooks
Posted
  • Author

Thank you so much for your help! 

I am UK and I'm pretty sure I've seen on another post on this page that Iga deficiency test isn't available on nhs but I am going to ask anyway! I will be asking for all my biopsy results and blood work! I just feel a bit fobbed off but maybe I'm making a mountain out of a mole hill.

Weirdly he didnt even mention my hiatus hernia in my final report and I'm not even sure my gp is aware I have one! Bit strange! But hopefully get it sorted soon.

 

Thank you you be been so helpful  

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