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Testing Question After Gf

barbiannc

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barbiannc Newbie
barbiannc
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

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NanaV Rookie
NanaV
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

I'm curious, too. I had an endo biopsy years ago, and the docs never told me that being gluten-free for a year would make any difference at all. Grrrr.

 

I think they're wrong. Uninformed. And it leaves us gluten-free but undiagnosed.

cyclinglady Grand Master
cyclinglady
Posted

Your doctors are wrong!  You must be eating gluten to get an accurate result.  Check out this link to the University of Chicago's Celiac Center regarding this issue:

 

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nvsmom Community Regular
nvsmom
Posted

The longer you are gluten-free, the higher the chances that any celiac test will yield a (false) negative result.  It IS possible to still have positive autoantibodies after 5 months gluten-free but I would say it's more likely that they will be negative. I personally still had a weak positive tTG IgA result after about 15 months gluten-free (it had fallen dramatically), but I know that my EMA IgA test became negative sometime before I was a year gluten-free.

 

After being gluten-free for 5 months you will need to complete a gluten challenge of about 2 slices of wheat bread per day for approximately 2 months before you will have accurate results.  :( It might be simpler to stay gluten-free.

 

And I agree, with a history of Hashi's, it's probably celiac disease.

 

Welcome to the board.  :)

WinterSong Community Regular
WinterSong
Posted

Flat out, your doctors are idiots. A friend of mine had a doctor who said the same thing, even after she had been gluten free for two years. Stupid doctors....

 

My blood tests were so positive they were off the charts, and it took me about a year and a half to get them down to normal, but even being gluten free for a few weeks can yield a false negative. 

 

Welcome to the board!

kareng Grand Master
kareng
Posted

While it sometimes takes a few months for antibodies to go down, That is usually people with sky-high antibody numbers.  Not everyone is that bad off.

 

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barbiannc Newbie
barbiannc
Posted
  • Author

Thanks, everyone! Exactly what I thought. It makes me absolutely crazy that so many doctors are so misinformed. It is such a HUGE problem and so prevalent that I should think they would know the basics of it. So now the question remains......do I go through with the gluten challenge for several months to be retested or just remain gluten-free?? I guess I would like to know for sure so that I don't have to be quite as diligent in my gluten avoidance. I still don't eat it, but I'm probably not as careful as I should be in regards to ingredients that are not obviously gluten. So another question....I am due soon to have a routine colonoscopy (it's been several years since my last one). Is it feasible to ask them to do a biopsy then and if so, would this be diagnostic or do I again need to be eating gluten for it to be positive? Thanks so much for everyone's help. This is all so overwhelming and confusing.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

 

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

NanaV Rookie
NanaV
Posted

I've read that one can be tested for celiac via a stool sample, EVEN if one has been gluten-free for a while. Can this really be true?

GF Lover Rising Star
GF Lover
Posted

Celiac Disease CANNOT be diagnosed by a stool sample.  I wish is was that easy. 

 

Colleen

frieze Community Regular
frieze
Posted

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

FYI, we have more than one biopsy proven celiac that does don't have those genes that post on this board.

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