Gluten Challenge? Opinions Appreciated:)

[EricaP]

Hi guys.  I know this has been asked a lot and there is probably no true answer, but wanted your opinions anyway. 

My sister has celiacs and I have the DQ8 gene.  I was having a lot of stomach issues earlier in the year and then went on a keto diet (pretty much no gluten) for a couple weeks and felt amazing.  I then decided to get tested for celiacs.  I ate gluten only one week and tested negative. My doctor did order me another blood test and it has been 9 weeks on gluten now.  Should I wait the whole 12 weeks? 

At this point would cutting out gluten for only 2 weeks, followed by 9 weeks of heavy (believe me all kinds of stuff) gluten be a safe bet of not producing a false negative? 

Seven years back I had tested positive on Enterolab, but I got a blood test & endoscopy and it showed negative.

Also for you kaiser people have you had any luck getting a referral for endoscopy without positive blood tests?  Would they order more than the IGG and IGA?  I didn't even ask because from what I've read I've seen they typically don't.

Thanks so much!! 

 

 

[EricaP]

Also not that it matters, but have had low iron on and off last 2 years. Just another reason why I’m testing. 

[cyclinglady]

19 hours ago, EricaP said:

Hi guys.  I know this has been asked a lot and there is probably no true answer, but wanted your opinions anyway. 

My sister has celiacs and I have the DQ8 gene.  I was having a lot of stomach issues earlier in the year and then went on a keto diet (pretty much no gluten) for a couple weeks and felt amazing.  I then decided to get tested for celiacs.  I ate gluten only one week and tested negative. My doctor did order me another blood test and it has been 9 weeks on gluten now.  Should I wait the whole 12 weeks? 

At this point would cutting out gluten for only 2 weeks, followed by 9 weeks of heavy (believe me all kinds of stuff) gluten be a safe bet of not producing a false negative? 

Seven years back I had tested positive on Enterolab, but I got a blood test & endoscopy and it showed negative.

Also for you kaiser people have you had any luck getting a referral for endoscopy without positive blood tests?  Would they order more than the IGG and IGA?  I didn't even ask because from what I've read I've seen they typically don't.

Thanks so much!! 

 

 

Welcome!  

With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.  

What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.  

I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.  

Advocate for your health!  Document!  Save and print all test results and maintain file.  

Take care!  

[EricaP]

Thank you so much for your very well thought out answer.  You're right, I'm just going wait 12 weeks because although I feel like crap, it is not horrible like I know it is for some people. How anemic were you? I ask because I have had low iron on and off 12 ferritin (22+ normal) 37 iron (normal 50 and above), and 10 transferrin saturation (14 is normal) have been my lowest. 

I know this is not crazy low and what happens is I do respond to iron pills. After a year of taking iron my levels became normal again, so the dr. advised me to stop taking the pills and within 6 months my levels dropped below normal again.  

I had to start taking  iron again and now my levels are back to normal. The doctor said she would do an endoscopy if I didn't respond to the iron and clearly I have.  But the thing is I know if I quit taking the iron again my levels will just drop. This has been going on for two years lol and Kaiser doesn't really think it's abnormal.

I guess my question is would someone with celiac even respond to iron pills, or would it just stay low?  Thanks so much!  I've been kind of a  lurker on here for awhile and have noticed you are always so helpful!! 

[cyclinglady]

My lowest ferritin was a 2, but I typically always reponded to iron supplements.  Enough to make many doctors happy.    My periodic bouts with low iron was attributed to heavy periods, but what did I know?  I would take the iron, be fine and then eventually my iron would drop.  I processed iron but did not absorb enough to store it.   My hemoglobin though remained normal (at least for me) since have Thalassemia (a genetic anemia).  My hemoglobin is usually just out of range.  It really dropped when I started into menopause.  Low iron, Thals, and 30 day periods can make you very anemic.  No amount of iron then could catch me up like it did in the past.  My GYN wanted to do a hysterectomy, but I declined.  My PCP blamed my Thals.  When I hit 50, I asked for a cancer screening colonoscopy (like all my friends were getting!).  My new GI looked at my chart and told me that I probably had celiac disease.  I scoffed.  I had no GI issues.  Besides, I did not want celiac disease.  My hubby had been gluten free for 12 years and I knew exactly what it was like.  Ugh!  But my blood test was positive as was my biopsy and the rest is history.  My anemia resolved within months of being gluten free and I stopped those 30 day killer periods.  If only the hot flashes would cease!  

Keep advocating!  Do the research and show your PCP (or one of the GPS who do same day appointments), but follow-up in writing.  Kaiser will respond to written requests.  Be nice!  If push comes to shove, go outside of Kaiser and get the blood tests.  Some states allow you to go to the lab directly.  If that is not an option, ask a friend to refer you to their physician who will order the tests.   I do not think it will come to that.  I think that many PCPs really are not knowledgeable about celiac disease.  My own PCP has only two other celiac patients who are not gluten-free compliant.  (She must think I am OCD about gluten).  She deals with some 2,000 patients.  I do not know how she keeps up.  My old PCP was Korean and never even suspected celiac disease.   He also monitored me for the first few years after my diagnosis and ordered all my follow-up testing based on data I gave him (some doctors are willing to learn).  

Got to go!  I hope this helps and that I did not ramble on.