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How do you know for sure

Deades

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Deades Contributor
Deades
Posted

I have no physical symptoms but am anemic.  My doctor wanted me to have a colonoscopy because he thought I was loosing blood someplace and perhaps I had bleeders.  Testing was negative so he then said perhaps a stomach ulcer and I had an endoscope.  The doctor's nurse called me June 1 and said I had celiac disease and to go on gluten free diet immediately.  I meet with the doctor on June 29.  I have been making a list of questions.  In reviewing my patient portal, I saw it said I had mild chronic duodenitis and mild to moderate villus blunting with no dysphasia.    In my little research I am finding there are other reasons I may have villus blunting.  I have not had a blood test and now it would be negative because I have been gluten free since June 1.  Any suggestions?  

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Deades said:

I have no physical symptoms but am anemic.  My doctor wanted me to have a colonoscopy because he thought I was loosing blood someplace and perhaps I had bleeders.  Testing was negative so he then said perhaps a stomach ulcer and I had an endoscope.  The doctor's nurse called me June 1 and said I had celiac disease and to go on gluten free diet immediately.  I meet with the doctor on June 29.  I have been making a list of questions.  In reviewing my patient portal, I saw it said I had mild chronic duodenitis and mild to moderate villus blunting with no dysphasia.    In my little research I am finding there are other reasons I may have villus blunting.  I have not had a blood test and now it would be negative because I have been gluten free since June 1.  Any suggestions?  

Welcome!

Your doctor, based on your medical history and biopsies is probably correct in your diagnosis.  You could ask for the blood tests for confirmation.  Some folks maintain antibodies for a long time (months like me).  Trialing the diet will also confirm your diagnosis.  How are you felling so far?  In a few months while this on the gluten free diet, your anemia should resolve if you have celiac disease.  That will seal the deal! 

Anemia was my symptom too.  No gut issues at all when I was diagnosed.  I went in for a routine colonoscopy, and my New Gi took one look at my chart (saw anemia) and ordered an endoscopy at the same time.  

Get copies of all your reports (nice to maintain if you should want a second opinion or you get a new doctor).   Read about follow-up testing and care from the University of Chicago's website.

Open Original Shared Link

The learning curve for the gluten-free diet can be steep.  We are here to help each other, so ask as many questions as you like! 

ironictruth Proficient
ironictruth
Posted
7 hours ago, Deades said:

I have no physical symptoms but am anemic.  My doctor wanted me to have a colonoscopy because he thought I was loosing blood someplace and perhaps I had bleeders.  Testing was negative so he then said perhaps a stomach ulcer and I had an endoscope.  The doctor's nurse called me June 1 and said I had celiac disease and to go on gluten free diet immediately.  I meet with the doctor on June 29.  I have been making a list of questions.  In reviewing my patient portal, I saw it said I had mild chronic duodenitis and mild to moderate villus blunting with no dysphasia.    In my little research I am finding there are other reasons I may have villus blunting.  I have not had a blood test and now it would be negative because I have been gluten free since June 1.  Any suggestions?  

The blood test could very likely still be positive.  but you need to have it done very soon. Call and ask for it. TTG, DGP, EMA, overall IGA. My doc told me to go gluten free and forgot to run the blood work for a month.  If you call and ask for it Get it drawn as soon as possible and then you should be able to talk about it at your appointment.

Good luck. 

TexasJen Collaborator
TexasJen
Posted

I had vague physical symptoms but no GI symptoms: anemia, worsening migraines, worse PMS.  My doc did a scope because of my anemia but I had severe villous blunting. My doc did the confirmatory antibodies right away. BUT, my antibodies were still partially positive (but much better) at followup testing 4-5 months later. SO, your tests might still be positive. 

if you get the tests done soon and they are positive, you have your answer. If they are negative, you could do a gluten challenge and retest the antibodies later. This would at least give you peace of mind that you are on the right track.

Good luck!

 

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