Test results

[Wannafeelbetter]

Hello,

in march of this year I was tested for celiac disease using the DGP IGA test. My results were 77 units and I was told that’s a high positive result and they believe I have Celiac . I was told to start a gluten free diet and follow up with my primary care doctor. My primary care doctor ordered additional tests. By the time I completed the additional tests I had been on a strict gluten free diet for about 3 weeks, maybe a little more. The second test was the TTG test and it came back in normal range. Is it possible that 3+ weeks gluten free impacted the results of the TTG? Why are the tests results different? I feel so much better on a gluten free diet. My joint pain and tingling feeling in my legs are almost completely gone. I’m sleeping better. My mood is better. And the only time I’ve had gastro problems is after eating Honey Nut Cheerios. Can anyone relate? What should i do?

[notme]

the dgp is a more reliable test I think. whyyyyy would they even retest you.  I swear, they want to make the $$ from treating your symptoms from undiagnosed celiac.  I would stick with your gluten free diet, as you feel better!  <your body's response to the gluten-free diet is a diagnostic criteria, something your primary should know.  they also should know if they are going to do any further testing, you should be on gluten for a while - like 8 weeks!  

there is an incredible disconnect between doctors and their knowledge of this disease.  if you want to pursue it, I would either get a specialist, educate your current primary, or find a doctor who isn't ignorant of celiac.  one of my doctors (general practitioner) told me once that since I had celiac, I couldn't have alcohol (not true) one nurse I had couldn't believe I would switch my lip gloss to a gluten-free brand (she said, and I quote:  well, you're not gonna eat it, are you??)  

also, there is much controversy involving the 'safety' of cheerios and whether the product should be allowed to be labeled gluten free.  oats might not be your friend, anyway.  many celiac patients can't digest oats whether from cc or the way they sort them.  you may want to skip dairy for a bit and let your villi heal, bc the tips of those lil buggers are where the enzyme is produced to break down lactose.

welcome to the club you never wanted to join  

[cyclinglady]

Fire your doctor!  

You should not have been advised to go gluten free yet.  In as little as two weeks, healing can occur.  Rare, but possible.  Plus, you tested positive to only the DGP IgA and that TTG IgA test might never be positive.  How do I know?  

I tested positive to only the DGP IgA about six years ago.  I never had a positive on any of the other tests.  I went  in for a cancer screening colonoscopy (yep, I am over 50).  My wise GI noticed that I was anemic for decades.  He ordered a celiac blood panel and endoscopy in addition to the colonoscopy.  Again, my only positive was the DGP IgA.  Why not the TTG or EMA?  No one knows.  My biopsies (obtained via endoscopy) revealed severe damage patches (Marsh Stage IIIB).  Over the past six years, I have been glutened.  When I got retested, only the DGP IgA test came back positive.  Why?  No GI knows (I am on my second.)   There is a reason why there are several celiac tests.  It is not all “one size fits all”.  I would say most, but not all.  

The TTG is good but it does not catch all celiacs.  It might not catch a celiac who went gluten free for three weeks.  

My suggestion is to get to a Gastroenterologist.  It is obvious that your PCP is clueless in this matter.  Which is really unacceptable considering he/she has access to google!  

You could go gluten free again and just live your life.  Some people are forced to do this.  But do you have kids?  This is a known genetic disorder.  Easy to test them if you have a firm diagnosis.  Plus, no one gives you any guff about your diet.  No eye rolling, etc.  You get better support from family, friends and medical and it may even help if you get arrested.  ?

Seriously, try to see a GI or a new doctor.  Keep researching.  You are your best advocate!  

 

Edited May 4, 2019 by cyclinglady

[Wannafeelbetter]

Thank you both for your responses! What a frustrating disease! I’ll request a consult to a GI doctor! Luckily, I haven’t eaten dairy in years. It used to make me sick too and I went vegan almost 3 years ago! 

Thanks again!

[GFinDC]

The GI will probably want to do an endoscopy.   And you should be eating at least some gluten daily for at least 2 to 4 weeks prior to the endoscopy.

During the endoscopy the doctor should take 4 to 6 biopsy samples for microscopic examination.  They check the biopsies for evidence of celiac disease damage.

Try a web search for celiac and gastroenterologist and your city name.  Try to find one who claims some experience with celiac testing.

There may be Facebook or other support groups near you also.  Those are a good place to check for knowledgeable doctors.

Here's some gluten-free info near you.

https://miglutenfreegal.com/2016/05/27/eating-out-and-celiac-disease-resources/

https://www.tccsg.net/

https://simplygluten-free.com/celiac-support-groups-community

https://www.beyondceliac.org/celiac-disease/additional-information/support-groups/

Edited May 4, 2019 by GFinDC

[Wannafeelbetter]

11 hours ago, GFinDC said:

The GI will probably want to do an endoscopy.   And you should be eating at least some gluten daily for at least 2 to 4 weeks prior to the endoscopy.

During the endoscopy the doctor should take 4 to 6 biopsy samples for microscopic examination.  They check the biopsies for evidence of celiac disease damage.

Try a web search for celiac and gastroenterologist and your city name.  Try to find one who claims some experience with celiac testing.

There may be Facebook or other support groups near you also.  Those are a good place to check for knowledgeable doctors.

Here's some gluten-free info near you.

https://miglutenfreegal.com/2016/05/27/eating-out-and-celiac-disease-resources/

https://www.tccsg.net/

https://simplygluten-free.com/celiac-support-groups-community

https://www.beyondceliac.org/celiac-disease/additional-information/support-groups/

This is really helpful! Thank you!!!