Dr. refuses to order tTg and DGP

[manasota]

My internist (for over 8 years) has just refused to order the tTg and DGP for my annual follow-up.  I have never had the DGP; and my tTg has never dropped below 20.  He says he "never heard of the DGP and doesn't know why these tests would be recommended".  I showed him a printout from the U. of Chicago Celiac Center showing these 2 tests being recommended for annual follow-up.

I'm shocked, confused, frustrated, and angry.  He knows how sick I continue to be and how hard I'm trying to get well.

Suggestions?

[cyclinglady]

Get a new Internist?  This might be what is going on.  My provider and my health insurance are one group.  We are self-employed and made the switch two years ago.  Our insurance provider got great reviews by Consumer Reports and other reporting agencies, plus, referrals from family and friends.   Is this good?  I am not so sure.  But we can always switch during open enrollment.

Anyway, I was glutened in July.  At least I was pretty sure I was glutened and badly.  Symptoms were so different than when I was first diagnosed over two years ago.  I went to my new internist and asked for the DGP.  I had given her all my old records and she knew that I had originally tested positive on just the DGP IgA and negative on the TTG.  Well, she could not even order it!  Just the TTG.  So, she gave me a referral to a GI (I needed one anyway) and he was able to order the entire panel.  (My DGP IgA was as high as when I was diagnosed but that's another story!)

Your doctor might not know anything about celiac disease and may only be authorized to order the TTG which is the screening test used by the University of Chicago that they offer free of charge each October.  Why?  It's cheaper.  No need to run the entire panel if the TTG catches like 95% of all celiacs.  Except for people like ME!  Thankfully, my original GI ordered the entire panel.  He was not restricted by my insurance or his practice.  No need to keep costs down! 

Maybe that is what happened to you.  But research does seem to indicate that the DGP is better for dietary compliance.  Ask for a GI referral. 

And on that same subject of insurance.  One of our members, Jebby, is a medical doctor who has celiac disease.   After her diagnosis, she went armed with all the tests she should have to check for bone density and mineral deficiencies.  She was denied by her insurance for the bone scan.  I guess she was too young!  It was only offered to me after I suffered some fractures.  My old primary care provider was great but he didn't have a clue for follow-up care.  I should have gone back to my old GI after a year, but since my hubby has been gluten-free for 14 years and my anemia resolved, I knew I was healing.  (My cholesterol went from 116 total to 174 too so I was absorbing fats!)

Hope this helps!

 

[nvsmom]

((HUGS))

[manasota]

You both offer valuable responses.  I thank you.  You are the voices of empathy and reason.

After much thought, I don't really see what value the tests offer to me.  I am doing the very best I can to be gluten free.  I am always aware and continually tweeking.   I simply cannot do any better--regardless of any test measures.  I cannot live any more gluten free unless I were to grow and harvest all my own food from seed--and butcher all my own animals.  That is not going to happen.  I do not even plan to seek another physician to order the above-mentioned tests.

I wish you both the very best.  Again, I thank you for your friendly voices.

 

[nvsmom]

 If you are treating yourself as a celiac would, there is no great need to get tested.  Just tell all doctors you see in the future that you are a celiac so they treat you well, and make sure your pharmacist knows too.

 Best wishes.

[manasota]

Oh my God, thank you soon much for the love you offer!  Your posts on this site are valuable.

[nvsmom]

 Well, thank YOU.  

[CherylS]

I'm a nurse and I'm currently getting my master's in Health Care Administration.  I just spent 7 weeks studying the US healthcare system and I don't understand why we accept less than our money's worth from our doctors.  There is no reason you should feel like this, you are the consumer and if you are symptomatic and request testing "no" and "I've never heard of that test" are not valid responses from your physician.

Please don't retreat from him, you are worthy of a diagnosis.  You need to have this diagnosis documented, no matter what you do with your diet. What if you become disabled, what if you need time away from work if you get glutened.  If you don't have a real diagnosis, you are not given all of your rights.  

I'm not meaning to cause you to distrust your doctor or anything like that, I just want you to take care of YOU... you are trusting that doctor with your BODY and LIFE, you only get one of each.  If you can't come to him with something like this and get empathy and basic testing there's a problem

After all of this, I l don't know where you live.  I realize you may not be in the United States and may have a completely different healthcare system.  I just want you to feel listened to and validated by the person you are trusting your health with.

[cyclinglady]

I'm a nurse and I'm currently getting my master's in Health Care Administration.  I just spent 7 weeks studying the US healthcare system and I don't understand why we accept less than our money's worth from our doctors.  There is no reason you should feel like this, you are the consumer and if you are symptomatic and request testing "no" and "I've never heard of that test" are not valid responses from your physician.

Please don't retreat from him, you are worthy of a diagnosis.  You need to have this diagnosis documented, no matter what you do with your diet. What if you become disabled, what if you need time away from work if you get glutened.  If you don't have a real diagnosis, you are not given all of your rights.  

I'm not meaning to cause you to distrust your doctor or anything like that, I just want you to take care of YOU... you are trusting that doctor with your BODY and LIFE, you only get one of each.  If you can't come to him with something like this and get empathy and basic testing there's a problem

After all of this, I l don't know where you live.  I realize you may not be in the United States and may have a completely different healthcare system.  I just want you to feel listened to and validated by the person you are trusting your health with.

?

[manasota]

CherylS, I could have used you 15 years ago when I did become disabled due to Celiac.  My doctors were no help then either.  At the time, I was so busy caring for my husband who was also realizing he was disabled that I didn't have the strength to pursue my own diagnosis.  I took him to Mayo Clinic for a diagnosis; but I just assumed I would get better.  After all, nobody had a reason for my pain.  I finally got diagnosed with Celiac in 2010, after breast cancer and Graves disease arrived on the scene.  Now, 5 years after my Celiac diagnosis and I still can't get well enough to stand or sit for very long.  Too much pain and fatigue.  I'm exhausted.  I've tried everything I can think of & everything I've seen on this site.  I feel too exhausted to go to Mayo.  I would not be able to feed myself with my very strict diet.  I'm on the SCD diet.  I've had lots of healing--just not enough.  And now I'm 66 years old.  Fifteen years away from my profession.  I've researched the other possible diagnoses that Mayo or Chicago come up with for people like me.  I don't have those diseases.  I don't have diarrhea.  Not perfect poo; but not diarrhea.  All my doctors are at a loss.

Five years ago,this same internist refused to order the tTg.  I made an appointment with a gastroenterologist and had to literally BEG him to do the tTg.  He didn't want to order it because I didn't have diarrhea.  Luckily, it was positive.  He did the endoscopy &  confirmed Celiac, much to his surprise.  So, I have a valid diagnosis.  I've gotten better with the gluten-free diet.  But, I've not regained my life.

You have much more faith in the western medical system than I do.  My career was in the medical system.  It failed me for the nearly 40 years I suffered from disabling migraines.  When I was 26, and got my first migraine, "modern" medicine didn't even recognize migraines as a valid health issue.  It was hinted that it was  my fault, my imagination, my weakness.  For 40 years, I went to doctor's with GI complaints.  No help.  I figure that "I'm on my own", just like always.

 

[BoJo]

I look at my doctor as a high-priced consultant. She works for me; i think that is the way it works when you pay someone to work for you. Anyway, I do not work for her. As a consultant and a member of my health care team, I expect her to be a team player. If a doctors ego gets in the way of working with a team, which may include second opinions or learning something about a new test, I do not expect her to feel intimidated or slighted. I would say see a good gastro doc or ask your doc for a referral. If the referral is refused I think it is time for a new doctor on your team.

[manasota]

You are absolutely right.  I contacted my gyno a week ago & she was very HAPPY to refer me to a GI doc ( of my choice) who trained at the U. of Chicago Celiac Center!  I had looked many times previously for a good GI doc; but had found no good options in my area.  I am beyond excited & eager for this appt.  I will be stunned if the new doc won't order the tests.  I plan to report back after the appt. in November.

[manasota]

Reporting in regarding my Nov. appointment with the new GI doc.  It was EXCELLENT!  I was interviewed by both the specialist and by her Fellow.  Very, very good listeners.  Both demonstrated great understanding of my situation.  She was eager to order blood work including a full Celiac panel.

Got my results and all tests showed that I am definitely not getting any gluten.  They also showed intestinal healing.  YEA!!!!!!!!!  Finally, I have reassurance that I am doing everything I can to get better.  

I'm so glad i listened to you all and found another doc.  I'm so glad I listened to you all and insisted on all the appropriate follow-up tests for a Celiac.  I feel a big weight off my back.  It was always in the back of my mind that it could have been my fault that I was not feeling better. :-(

She also found that my folate level was elevated and said it could be a sign of SIBO.  So, instead of requiring me to take the time and effort to return for testing; we began an empiric trial of Xifaxin.  I've finished the 10-day course and note some improvement--but not what I'd hoped.  She wants me to give it some more time.  Says some people have even more improvement a couple weeks after the course of Xifaxin.

So, thanks for your help!

[squirmingitch]

Very good news indeed and now you can rest much easier knowing what's going on or rather what's not going on. Here's hoping you feel much better in a couple weeks.

Thanks for the update!

[manasota]

And I thank you for the support!!

[nvsmom]

  Congrats things are going so well.

[manasota]

Day #17 post-treatment with Xifaxin.  Maybe, a tiny bit better?  Not what I'd hoped.  At my next appt. in February, I will see what other "tricks" they may have up their sleeves.

In the meantime, I plan to try Florajen 3 since sooooo many people on this site seem to love the stuff.  Other than that, I'll just keep on keepin' on.

[Positron]

On ‎10‎/‎5‎/‎2015 at 3:08 PM, manasota said:

My internist (for over 8 years) has just refused to order the tTg and DGP for my annual follow-up.  I have never had the DGP; and my tTg has never dropped below 20.  He says he "never heard of the DGP and doesn't know why these tests would be recommended".  I showed him a printout from the U. of Chicago Celiac Center showing these 2 tests being recommended for annual follow-up.

I'm shocked, confused, frustrated, and angry.  He knows how sick I continue to be and how hard I'm trying to get well.

Suggestions?

If celiac disease has been making you sick for 8 years and you know that you have this, then it is your fault for continuing to eat gluten. This is not your doctors fault.

[GFinDC]

Hi Manasota,

Since the Xifaxan is an antibiotic, you may need some probiotics to re-establish your gut flora.  Hopefully the doctor recommended some.

Have you tried cutting out dairy for a while?  It may be a problem.

 

[manasota]

Positron, I thank you for your post and your efforts on my behalf.  However, I believe you misunderstood.  I have been gluten free since the day I was diagnosed with Celiac Disease nearly 6 years ago.  The 8 years refers to the length of time I've had the same internist.  My complaint was merely that he refused to order the recommended annual follow-up testing (which I got later from another physician).

GFinDC, I also thank you for your post and efforts on my behalf.  I agree about your suggestion regarding probiotics which is why I stated I am starting Florajen 3.  As for your suggestion to try stopping dairy, I don't consume dairy.

I do thank you both for your suggestions.  I consider my original post/complaint SOLVED!  Yea!!!!  Thanks to all!