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Thinking About Seeing A Specialist, Opinions On Labs And Biopsy?

tealeaves1

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tealeaves1 Newbie
tealeaves1
Posted

Hello,

I have had fatigue, neuropathy, abdominal pain, joint pain and bloating for many years.  I had giardia 1.5 years ago, it was treated but all the longstanding symptoms I had seemed to get worse after that, especially the joint pain and fatigue. I have longstanding issues with depression and anxiety and have been diagnosed with hashimotos long ago, I am not on medication, my labs have been within normal range.   Earlier this year I had a work up for celiac disease, my ttg Iga was 55 and endomysial ab was negative.  My biopsy showed mildly increased intraepithelial lymphocytes.
mildly increased Lamin propria inflammation.  I was told I didn't have celiac disease and my primary doctor didnt offer much in the way of explanation for my abnormalities. 

 

My doctor suggested I try a gluten free diet because there wasn't anything to tell me to do.   I started feeling better within days and after a month felt like a different person.  I didn't feel depressed anymore and stopped taking my antidepressant and have been doing great.  I had been on it for well over a decade and had tried to get off it numerous times but wasn't successful.  I recently had my ttg Iga rechecked because I was wondering if there was any change after 6 months on a gluten free diet.  It was <2. 

 

I'm wondering what people think about this not being celiac disease.  The only think I changed was my diet ,  now my lab result is negative and I feel a lot better.  I have been thinking about making an appointment with a specialist who is an expert in celiac disease.   I suppose I want to know why there is the change in labs if it's not celiac disease, if I will get better and be able to eat gluten again and also want a second opinion because it is genetic and want to know the information for my family.    

 

thanks for your feedback. 

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SMRI Collaborator
SMRI
Posted

In every range I've seen, 55 on a ttg IGA is a strong positive.  What was the range for your labs.  Why did he say you do not have Celiac??

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tealeaves1 Newbie
tealeaves1
  • Author
Posted

In every range I've seen, 55 on a ttg IGA is a strong positive.  What was the range for your labs.  Why did he say you do not have Celiac??

I was told my biopsy findings were not specific to celiac and to follow up with my primary doctor about the inflammation seen on my biopsy.  My primary doctor didn't have any specific diagnosis and just said that maybe the lab result doesn't mean anything.  

 

I believe the range was > 10 for positive and >20 for strong positive.   I got the impression from the doctors that because it wasn't >100 and my villi were intact that it wasn't specific to warrent concern. 

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SMRI Collaborator
SMRI
Posted

I'd see a specialist but in my non-doctor opinion, you have Celiac with a positive blood test like that.  Now, if it was 11 and the biopsy was questionable, maybe, maybe not, but with a 55 its a pretty done deal.  Problem is, you have to start eating gluten again for them to re-test, for several weeks.  Do you want to do that?

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LauraTX Rising Star
LauraTX
Posted

With such a high ttg IgA like that, even with mild inflammation on the biopsy, that is Celiac disease.  You are also feeling better on the gluten-free diet and that is also a big sign.  I would go to a new GI doctor who specializes in Celiac disease and bring copies of all the lab work and pathology reports for them to review.  If you go to someone competent, it is likely you are going to walk out with a Celiac diagnosis.  

 

Also, how many biopsies were taken at your endoscopy?  The damage cause by Celiac can be spotty and easily missed if not enough samples are taken.

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tealeaves1 Newbie
tealeaves1
  • Author
Posted

With such a high ttg IgA like that, even with mild inflammation on the biopsy, that is Celiac disease.  You are also feeling better on the gluten-free diet and that is also a big sign.  I would go to a new GI doctor who specializes in Celiac disease and bring copies of all the lab work and pathology reports for them to review.  If you go to someone competent, it is likely you are going to walk out with a Celiac diagnosis.  

 

Also, how many biopsies were taken at your endoscopy?  The damage cause by Celiac can be spotty and easily missed if not enough samples are taken.

 

 

They took 6 samples on the biopsy.   Yes, I would like to take all of my labs and biopsy results to just get a second opinion.

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