Gold Standard. is it necessary and why

[OmaDeb]

 Hey y'all,  I have a young friend, 40 ish, female, RN, recently diagnosed with celiac.  She was diagnosed by her lab work only, no endoscopy/biopsy  done.  and she is mad as she got kicked out of a Celiac support group because of this.  The rules state you must have been dx'd with endoscopy and biopsy.  I know I was.  She states her GI doctor told her that her levels were high enough that  a endoscopy was not necessary and has risks. 

  so it just made me wonder why this is the Gold Standard.   I know many people that have gluten sensitivities but not celiac disease.  what are your thoughts or knowledge on this? 

  Thanks for listening  ,  I'm just curious, and was entertained by this

[Estes]

This happened to me too.  I was told I did not need an endoscopy to confirm but now I can not participate in studies.  I also sometimes doubt my diagnosis.  I wish I had that endoscopy.

[RMJ]

I’m guessing it may be partly because endoscopy/biopsy was a procedure long before the blood tests were available.

[OmaDeb]

4 hours ago, Estes said:

This happened to me too.  I was told I did not need an endoscopy to confirm but now I can not participate in studies.  I also sometimes doubt my diagnosis.  I wish I had that endoscopy.

I guess there is a school of thought that maybe it is not totally necessary, maybe younger docs. That's too bad about the studies, can you get one if you do the gluten challenge for awhile?

2 hours ago, RMJ said:

I’m guessing it may be partly because endoscopy/biopsy was a procedure long before the blood tests were available.

my thoughts also.  Thank you

[Scott Adams]

19 hours ago, OmaDeb said:

 Hey y'all,  I have a young friend, 40 ish, female, RN, recently diagnosed with celiac.  She was diagnosed by her lab work only, no endoscopy/biopsy  done.  and she is mad as she got kicked out of a Celiac support group because of this.  The rules state you must have been dx'd with endoscopy and biopsy.  I know I was.  She states her GI doctor told her that her levels were high enough that  a endoscopy was not necessary and has risks. 

What kind of "celiac support group" would require this for participation? It does not seem very supportive, but more exclusionary based on an increasingly archaic viewpoint on the traditional way it has been diagnosed. 

There is a section in this article with links to the latest studies which support the current and future way it will be diagnosed, and that is with blood testing alone, at least for those who are 5-10x the positive level for their TTG results:

19 hours ago, Estes said:

This happened to me too.  I was told I did not need an endoscopy to confirm but now I can not participate in studies.  I also sometimes doubt my diagnosis.  I wish I had that endoscopy.

I do understand why a study may require this, because trying to get FDA approval has very high standards which likely require much more evidence that the participants actually had active celiac disease AND gut damage. 

[OmaDeb]

7 hours ago, Scott Adams said:

What kind of "celiac support group" would require this for participation? It does not seem very supportive, but more exclusionary based on an increasingly archaic viewpoint on the traditional way it has been diagnosed. 

There is a section in this article with links to the latest studies which support the current and future way it will be diagnosed, and that is with blood testing alone, at least for those who are 5-10x the positive level for their TTG results:

I do understand why a study may require this, because trying to get FDA approval has very high standards which likely require much more evidence that the participants actually had active celiac disease AND gut damage. 

Right?  I kind of thought it was laughable, it is a FaceBook group, which totally explains it.  but thank you for your reply and information.   

[Kat Pearlson]

This is exactly what I was wondering. I did a mail in celiac probability type kit (Imaware) a few years ago and I received my results back saying that my chances of having celiac was over 90% bc I had certain bio markers present. After talking to their online doctors they said I could only know for sure by having an endoscopy. I wasn’t at a place in my life where I could afford to do that so I just kind of forgot about it. I only did the test at that point because my dad had celiac and my sister had read that your chances of having it if your parent has it are increased, I wasn’t  having any symptoms that I was aware of. Now over two years later I’ve been having terrible stomach pain so looking into getting diagnosed or ruling it out. I found a functional medicine clinic that I reached out to and she said that they do not need to do an endoscopy-they can confidently diagnose it with only a blood test. I made an appointment and my care provider actually has celiac disease so I’m sure she is very knowledgeable on the subject. I have also read that sometimes your endoscopy won’t show any damage but you may still have celiac. I recently did the blood test (and a stool test) with this clinic, but I’m still waiting to get my results back so that’s why I’ve been on this site. Thank you for posting this question, have been wondering the same thing. 

[OmaDeb]

11 hours ago, Kat Pearlson said:

This is exactly what I was wondering. I did a mail in celiac probability type kit (Imaware) a few years ago and I received my results back saying that my chances of having celiac was over 90% bc I had certain bio markers present. After talking to their online doctors they said I could only know for sure by having an endoscopy. I wasn’t at a place in my life where I could afford to do that so I just kind of forgot about it. I only did the test at that point because my dad had celiac and my sister had read that your chances of having it if your parent has it are increased, I wasn’t  having any symptoms that I was aware of. Now over two years later I’ve been having terrible stomach pain so looking into getting diagnosed or ruling it out. I found a functional medicine clinic that I reached out to and she said that they do not need to do an endoscopy-they can confidently diagnose it with only a blood test. I made an appointment and my care provider actually has celiac disease so I’m sure she is very knowledgeable on the subject. I have also read that sometimes your endoscopy won’t show any damage but you may still have celiac. I recently did the blood test (and a stool test) with this clinic, but I’m still waiting to get my results back so that’s why I’ve been on this site. Thank you for posting this question, have been wondering the same thing. 

It seems to be a sneaky disease!  I got diagnosed 22 years ago at age 46, had symptoms starting in my 20's, but thought they were just normal annoying things. Maybe pregnancies triggered celiac to be active(?). 

 My 7 year older sister, who was failure to thrive early on, wasn't diagnosed until 10 years after me. Due to osteoporosis not responding to. any treatments. FINALLY an Endocrinologist heard her when she said "my sister has celiac". 

23&me also tells us we are very likely to have it, lol. so family history matters a LOT. 

since it lies dormant until triggered for many people, seems like the endoscopy is not 24k

 Good luck,  I hope you get helpful answers

[Scott Adams]

On 5/21/2022 at 6:22 PM, Kat Pearlson said:

This is exactly what I was wondering. I did a mail in celiac probability type kit (Imaware) a few years ago and I received my results back saying that my chances of having celiac was over 90% bc I had certain bio markers present. After talking to their online doctors they said I could only know for sure by having an endoscopy. I wasn’t at a place in my life where I could afford to do that so I just kind of forgot about it. I only did the test at that point because my dad had celiac and my sister had read that your chances of having it if your parent has it are increased, I wasn’t  having any symptoms that I was aware of. Now over two years later I’ve been having terrible stomach pain so looking into getting diagnosed or ruling it out. I found a functional medicine clinic that I reached out to and she said that they do not need to do an endoscopy-they can confidently diagnose it with only a blood test. I made an appointment and my care provider actually has celiac disease so I’m sure she is very knowledgeable on the subject. I have also read that sometimes your endoscopy won’t show any damage but you may still have celiac. I recently did the blood test (and a stool test) with this clinic, but I’m still waiting to get my results back so that’s why I’ve been on this site. Thank you for posting this question, have been wondering the same thing. 

Welcome to the forum! Were you eating around 2 slices of wheat bread daily for at least 6-8 weeks before your blood test?

If one of your parents has celiac disease, an Mayo Clinic study indicates that you have a ~44% chance of also having it.