Positive blood test

[Amyk103]

So I recently tested positive with a blood test. I was seriously surprised because I thought I had been eating gluten free but clearly I had missed something that contained gluten. I am waiting for my next appointment coming up in 3 weeks to start to full process of diagnosis and I was told by a friend that I would have to reintroduce gluten for a set amount of time prior to the endoscopy? Even though my primary doc told me to eat gluten free should I start introducing it back now even before my initial consult? At this point I do not have a day set for the endoscopy. 

amy

[GFinDC]

Hi Amy,

Yes, you need to be on a gluten diet for the testing to be accurate.  Many doctors are not aware of proper celiac testing requirements and will tell patients to go gluten-free before testing is done.  Going gluten-free ahead of testing can and often does interfere with getting accurate test results.

You should be eating gluten for 2 to 4 weeks prior to an endoscopy and 12 weeks before a blood test.

[cyclinglady]

Ugh!  Primary care physicians!  Can they at least take the time to Google before offering recommendations that they know nothing about?  Yikes!  Consider a new PCP!  What else might this doctor miss?  

GFinDC is correct about the times needed to do celiac disease testing.  Unless you live in country that has very long wait  times to see a specialist (e.g. UK or Canada), stay on gluten and get that endoscopy done as soon as possible.  Going off gluten and then reintroducing it can be extremely .....awful.  Some members did just that and could not even stand being on gluten for a few days and had to give up.  They are permanently  in diagnostic limboland unless they have a nice doctor who will give them that diagnosis without the intestinal biopsies.  But then, if you get that sick, you know for sure Gluten is the root cause.   Just do not plan on a nursing home, jail or college housing to accommodate you in the future.  Yeah, kind of out there...but ”nicer”  people have been arrested for little things like lying about their kids sports abilities and cheating on SAT and ACT scores to get into a university.  Bet they will not get gluten-free food in the Federal Prison system.  

I took seven weeks before I had my endoscopy due to work constraints.    Anemia was my only symptom, so I took the time to indulge in all my old favorites (home baked goods, bakery items, food at top restaurants, and packaged process junk food.    I seriously consumed a loaf of sourdough a day!  By the time I had my endoscopy, I was sick.  Sicker than just anemia.  Made it very easy to give up gluten for life.  I had no doubt that my diagnosis was correct.  None.  

 

[Amyk103]

45 minutes ago, GFinDC said:

Hi Amy,

Yes, you need to be on a gluten diet for the testing to be accurate.  Many doctors are not aware of proper celiac testing requirements and will tell patients to go gluten-free before testing is done.  Going gluten-free ahead of testing can and often does interfere with getting accurate test results.

You should be eating gluten for 2 to 4 weeks prior to an endoscopy and 12 weeks before a blood test.

Thanks this was helpful.

2 minutes ago, cyclinglady said:

Ugh!  Primary care physicians!  Can they at least take the time to Google before offering recommendations that they know nothing about?  Yikes!  Consider a new PCP!  What else might this doctor miss?  

GFinDC is correct about the times needed to do celiac disease testing.  Unless you live in country that has very long wait  times to see a specialist (e.g. UK or Canada), stay on gluten and get that endoscopy done as soon as possible.  Going off gluten and then reintroducing it can be extremely .....awful.  Some members did just that and could not even stand being on gluten for a few days and had to give up.  They are permanently  in diagnostic limboland unless they have a nice doctor who will give them that diagnosis without the intestinal biopsies.  But then, if you get that sick, you know for sure Gluten is the root cause.   Just do not plan on a nursing home, jail or college housing to accommodate you in the future.  Yeah, kind of out there...but ”nicer”  people have been arrested for little things like lying about their kids sports abilities and cheating on SAT and ACT scores to get into a university.  Bet they will not get gluten-free food in the Federal Prison system.  

I took seven weeks before I had my endoscopy due to work constraints.    Anemia was my only symptom, so I took the time to indulge in all my old favorites (home baked goods, bakery items, food at top restaurants, and packaged process junk food.    I seriously consumed a loaf of sourdough a day!  By the time I had my endoscopy, I was sick.  Sicker than just anemia.  Made it very easy to give up gluten for life.  I had no doubt that my diagnosis was correct.  None.  

 

I love my  PCP she is wonderful luckily my appointments are happening pretty quickly so I’m not too worried.

[cyclinglady]

I am glad you like your doctor.  A PCP can not know everything, so it is good that you are researching on your own.  

Not everyone is lucky enough to get a diagnosis and there is still much to learn about gluten sensitivity.  My own hubby went gluten free 20 years ago based on the advice of his PCP and my allergist.  The diet worked.  Does he have celiac disease?  We will never know, because he refuses to do a challenge.  We know gluten makes him sick and he needs to work (we like paying our bills).  

My comments about the prison system were a bit out of line.  This topic came up in the diabetes community.  Obviously, some reforms need to occur.  But first we need to get Congress to even take celiac disease seriously.  

https://www.prweb.com/releases/celiac_disease_foundation_ceo_marilyn_g_geller_testifies_at_house_appropriations_subcommittee_public_witness_hearing/prweb16239598.htm

I am sorry for getting off topic.  I wish you well!