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So frustrated with my doctor! Where do I go from here?!?

kkay

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kkay Rookie
kkay
Posted

I posted a week or so ago about testing positive for celiac from the biopsy so I went in for blood tests.  I told the doctor to please do the whole celiac panel.  I asked the nurse to please do the whole celiac panel.  I asked the lab tech to please do the whole celiac panel.  I even went in with a list of the tests that someone posted for me of the whole celiac panel and SHOWED them to the nurse and lab tech to make sure they would all be tested and I could go gluten free.  The doctor who did the scope even wrote in the write up I should be tested for IgA AND IgG.

My tests just came back.  They only tested me for IgA which was within normal amounts and then did the tTG IgA test which came back 0.  At that point, they stopped all tests.  Is this correct?  Once the tTG test came back 0, was there no point in doing any of the other tests?  I was tested for celiac 7 years ago and I had one of the tests in the panel come back positive.  I wish I could remember which one, but I don't think it was the tTG IgA test.  But it was enough to make the doctor order the biopsy for me.  I have a brother who tested negative on blood work (I have no idea if they did the full panel), but was having so many symptoms, they did the scope anyway.  His scope showed damage just like mine.  Can you have celiac if you test negative on the tTG IgA test, but positive on the biopsy?  What is the difference between IgA and IgG tests?

So now I have no idea where to go from here.  I have kids I want screened, but my primary care doctor said we would only screen my kids if my blood work came back positive and they didn't even do all the tests!  I started the gluten free diet once they had taken my blood, because the doctor who did my endoscopy told me to.

I thought the difference between gluten intolerance and celiac was they can potentially cause the same symptoms, but celiac disease damages your intestine.  So if I don't have celiac disease, what is damaging my intestine then?  

I just don't know what to do.  I don't trust my primary care doctor and I want to know why my intestines are damaged.  Is there a specialist I can go to that will know more about celiac?  What type of doctor treats celiac?  Or does my blood work show celiac isn't a possibility anymore and it's not worth pursuing?  

Thanks in advance for any insight you can give.

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cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, kkay said:

I posted a week or so ago about testing positive for celiac from the biopsy so I went in for blood tests.  I told the doctor to please do the whole celiac panel.  I asked the nurse to please do the whole celiac panel.  I asked the lab tech to please do the whole celiac panel.  I even went in with a list of the tests that someone posted for me of the whole celiac panel and SHOWED them to the nurse and lab tech to make sure they would all be tested and I could go gluten free.  The doctor who did the scope even wrote in the write up I should be tested for IgA AND IgG.

My tests just came back.  They only tested me for IgA which was within normal amounts and then did the tTG IgA test which came back 0.  At that point, they stopped all tests.  Is this correct?  Once the tTG test came back 0, was there no point in doing any of the other tests?  I was tested for celiac 7 years ago and I had one of the tests in the panel come back positive.  I wish I could remember which one, but I don't think it was the tTG IgA test.  But it was enough to make the doctor order the biopsy for me.  I have a brother who tested negative on blood work (I have no idea if they did the full panel), but was having so many symptoms, they did the scope anyway.  His scope showed damage just like mine.  Can you have celiac if you test negative on the tTG IgA test, but positive on the biopsy?  What is the difference between IgA and IgG tests?

So now I have no idea where to go from here.  I have kids I want screened, but my primary care doctor said we would only screen my kids if my blood work came back positive and they didn't even do all the tests!  I started the gluten free diet once they had taken my blood, because the doctor who did my endoscopy told me to.

I thought the difference between gluten intolerance and celiac was they can potentially cause the same symptoms, but celiac disease damages your intestine.  So if I don't have celiac disease, what is damaging my intestine then?  

I just don't know what to do.  I don't trust my primary care doctor and I want to know why my intestines are damaged.  Is there a specialist I can go to that will know more about celiac?  What type of doctor treats celiac?  Or does my blood work show celiac isn't a possibility anymore and it's not worth pursuing?  

Thanks in advance for any insight you can give.

Okay, so the IGA deficiency test came back normal.  That means the IGA tests should work on you.  But you had an negative TTG.  A zero.  Guess what?  Me too!  I test positive ONLY to the DGP IGA even in follow-up testing.  My biopsies showed moderate to severe damage (Marsh Stage IIIB).  You need a new doctor.  Is your insurance and doctors in one unit?  That might explain why your PCP/GP can not order a complete panel, but not your GI.  You need to get answers because there are many things that might cause villi damage.  

Here is the entire panel, but it looks like you do not need the IGG versions since you are not IGA deficient:

Open Original Shared Link

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Then here are reasons for villi damage: 

Open Original Shared Link

 

i recommend that you document everything in writing after calling your GI first to inquire why the complete panel was not ordered.  Okay, so you brother has celiac disease and maybe they figure you have it.  But why not know for SURE?  The test cost less than $450. Maybe just $100 for the DGp IGA.  

 

Finally, get a second opinion.  Find a celiac savvy GI.  Geez, it could cost you a few hundred bucks (beg or  borrow the cash, if needed.  It could be well worth it.  We have gone out of network many many times for other opinions!  

 

 
cyclinglady Grand Master
cyclinglady
Posted

When I mean document, it means keeping a copy of EVERYTHING (lab tests, notes (take them while you are there), recipes, chart content (that is yours by law)!  Write a nice letter with you concerns as to why they are not following the latest  algorithm in diagnosing celiac disease.  

finally, how is your brother?  Is he well?  Did the gluten-free diet help him?  Does he get the standard of level of care  with follow-up testing where the DGP is BEST for determining dietary compliance?  

Your kids?  Sounds like you have a formal diagnosis of celiac disease (but we know not really....), so insurance should test them every few years even if they are symptom free.  My insurance does for my kid!  

ravenwoodglass Mentor
ravenwoodglass
Posted

I would wonder why when you got the results of the biopsy from the GI doctor why didn't he just give you a lab slip for the tests.  Since you are already gluten free maybe consider going back to the GI doctor and asking him that and also if he could do a repeat endo in 6 to 9 months to see if the damage has healed with the gluten-free diet.   If your symptoms are relieved and your intestines are healed then he could give you the 'official' diagnosis. Your other choice of course is to go back on gluten for a couple months and then getting the lab work done.

The gluten free diet will not interfere with any testing for any other issues you may have if you choose not to challenge.

I would also find a new GP and go to one final visit to the one you have now with the paper from the GI requesting the full panel and let him know his failure to do so is why your family will no longer be part of his practice.

Pineapple Newbie
Pineapple
Posted
3 hours ago, kkay said:

I posted a week or so ago about testing positive for celiac from the biopsy so I went in for blood tests.  I told the doctor to please do the whole celiac panel.  I asked the nurse to please do the whole celiac panel.  I asked the lab tech to please do the whole celiac panel.  I even went in with a list of the tests that someone posted for me of the whole celiac panel and SHOWED them to the nurse and lab tech to make sure they would all be tested and I could go gluten free.  The doctor who did the scope even wrote in the write up I should be tested for IgA AND IgG.

My tests just came back.  They only tested me for IgA which was within normal amounts and then did the tTG IgA test which came back 0.  At that point, they stopped all tests.  Is this correct?  Once the tTG test came back 0, was there no point in doing any of the other tests?  I was tested for celiac 7 years ago and I had one of the tests in the panel come back positive.  I wish I could remember which one, but I don't think it was the tTG IgA test.  But it was enough to make the doctor order the biopsy for me.  I have a brother who tested negative on blood work (I have no idea if they did the full panel), but was having so many symptoms, they did the scope anyway.  His scope showed damage just like mine.  Can you have celiac if you test negative on the tTG IgA test, but positive on the biopsy?  What is the difference between IgA and IgG tests?

So now I have no idea where to go from here.  I have kids I want screened, but my primary care doctor said we would only screen my kids if my blood work came back positive and they didn't even do all the tests!  I started the gluten free diet once they had taken my blood, because the doctor who did my endoscopy told me to.

I thought the difference between gluten intolerance and celiac was they can potentially cause the same symptoms, but celiac disease damages your intestine.  So if I don't have celiac disease, what is damaging my intestine then?  

I just don't know what to do.  I don't trust my primary care doctor and I want to know why my intestines are damaged.  Is there a specialist I can go to that will know more about celiac?  What type of doctor treats celiac?  Or does my blood work show celiac isn't a possibility anymore and it's not worth pursuing?  

Thanks in advance for any insight you can give.

Will someone please help me! Im going outta my mind with this. 8 months now. Cant find relief  from this. Please help someone 

kareng Grand Master
kareng
Posted
5 minutes ago, Pineapple said:

Will someone please help me! Im going outta my mind with this. 8 months now. Cant find relief  from this. Please help someone 

I am not sure what exactly you want help with?  Maybe you could start your own topic and give us some info?

 

kkay Rookie
kkay
Posted
  • Author
15 minutes ago, cyclinglady said:

When I mean document, it means keeping a copy of EVERYTHING (lab tests, notes (take them while you are there), recipes, chart content (that is yours by law)!  Write a nice letter with you concerns as to why they are not following the latest  algorithm in diagnosing celiac disease.  

finally, how is your brother?  Is he well?  Did the gluten-free diet help him?  Does he get the standard of level of care  with follow-up testing where the DGP is BEST for determining dietary compliance?  

Your kids?  Sounds like you have a formal diagnosis of celiac disease (but we know not really....), so insurance should test them every few years even if they are symptom free.  My insurance does for my kid!  

My brother is not well because he refuses to follow a strict gluten free diet.  His wife is pretty frustrated with him.  She says he feels so much better when he does the diet strictly, but won't stay on it for long term.  

My primary care doctor won't screen my kids for celiac because my blood work didn't come back positive and I don't have a diagnosis.  And some of them are having problems.  I have one son that spends so much time in the bathroom with stomach pain and diarrhea.  One daughter who is way too underweight.  And one son who is dealing with epilepsy and neurological problems.  My other two kids I haven't seen any problems in.  None of my kids could have celiac, but they might so just in case I want them screened.  I am going to have to get a referral to the GI doc so I can talk to him.  My primary care doctor knows hardly anything about celiac and doesn't trust what I say.

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kkay Rookie
kkay
Posted
  • Author
14 minutes ago, ravenwoodglass said:

I would wonder why when you got the results of the biopsy from the GI doctor why didn't he just give you a lab slip for the tests.  Since you are already gluten free maybe consider going back to the GI doctor and asking him that and also if he could do a repeat endo in 6 to 9 months to see if the damage has healed with the gluten-free diet.   If your symptoms are relieved and your intestines are healed then he could give you the 'official' diagnosis. Your other choice of course is to go back on gluten for a couple months and then getting the lab work done.

The gluten free diet will not interfere with any testing for any other issues you may have if you choose not to challenge.

I would also find a new GP and go to one final visit to the one you have now with the paper from the GI requesting the full panel and let him know his failure to do so is why your family will no longer be part of his practice.

I think because I was referred for the endoscopy by my primary care doctor, he just figured PCP could run the tests.  I have only been gluten free for like 5 days.  So I am seriously considering going back on gluten until I can get into the GI doc.  I am so frustrated because I told the office I wanted to make sure all those tests were done so I could go gluten free and not have to look back.  

squirmingitch Veteran
squirmingitch
Posted

You need to LOOK at the lab order YOURSELF right there in the office before you leave the doctor. LOOK at it as he's writing it!!!! BEFORE he leaves the room. Yes, darn well, you question him & make him SHOW you the order. You have the right! You need to follow that procedure all the way down the line including when you're at the lab for the blood draw. That's what I do. That way you can get them to correct what they missed before you wait for results that you then find out are incomplete.

 

kkay Rookie
kkay
Posted
  • Author
3 minutes ago, squirmingitch said:

You need to LOOK at the lab order YOURSELF right there in the office before you leave the doctor. LOOK at it as he's writing it!!!! BEFORE he leaves the room. Yes, darn well, you question him & make him SHOW you the order. You have the right! You need to follow that procedure all the way down the line including when you're at the lab for the blood draw. That's what I do. That way you can get them to correct what they missed before you wait for results that you then find out are incomplete.

 

The doctor couldn't find the tests I wanted so he asked the lab to figure it out what tests to do for the celiac panel.   When I was at the lab, I could hear them trying to figure out what tests to do.  I walked right into the office without knocking and showed them my lists of tests I wanted done.  They said OK.  Then when the lab tech went to draw my blood, I showed her the lists of tests AGAIN and she told me they were all included on what they ordered.  They were either lying to my face or blowing me off.  I don't know what else I could have done.  I don't know if the lab just decided once they knew I wasn't IGA deficient and the IgA came back negative, they didn't have to do the rest.  Or if they screwed up in ordering the tests.  

I tried to get an appointment with the GI doc and they told me to get a referral from my PCP.  I just called my PCP and they told me I don't need a referral.  I am going to call after lunch and ask to speak with the nurse at the GI center and talk to her.  This is getting ridiculous.  

squirmingitch Veteran
squirmingitch
Posted

Does your insurance REQUIRE you to have a referral in order to see a specialist? Some insurances do not, some do. If yours does not, then call the GI back & inform them your insurance does not require a referral. I've had that line before b/c the office staff just assumes your insurance requires a referral. My insurance does not & when I inform them of that then their brain kicks into gear & they go ahead & make the appointment for me. 

Once in a blue moon some specialists require that all patients have a referral from another doc but that is rare.

Next time I would certainly go to a different lab. And since your PCP didn't pay any attention to the list you showed him & said he didn't know what to order, to let the lab figure it out then I would drop that PCP yesterday if not sooner!

kkay Rookie
kkay
Posted
  • Author
10 minutes ago, squirmingitch said:

Does your insurance REQUIRE you to have a referral in order to see a specialist? Some insurances do not, some do. If yours does not, then call the GI back & inform them your insurance does not require a referral. I've had that line before b/c the office staff just assumes your insurance requires a referral. My insurance does not & when I inform them of that then their brain kicks into gear & they go ahead & make the appointment for me. 

Once in a blue moon some specialists require that all patients have a referral from another doc but that is rare.

Next time I would certainly go to a different lab. And since your PCP didn't pay any attention to the list you showed him & said he didn't know what to order, to let the lab figure it out then I would drop that PCP yesterday if not sooner!

Yeah, I am done with my PCP.  I am going to find a new one.  I called the GI office and explained my situation to the nurse and she made an appointment for me.  It's not until Nov. 3.  Ugh.  I have only been off gluten for 5 days so back on I go. :(

cyclinglady Grand Master
cyclinglady
Posted

Here's another tip....call the GI's office to see if anyone has cancelled.  You might get an earlier appointment.  But I am confused.  If this is the GI who recently gave you an endoscopy, why can't he order the blood tests prior to your appointment.  I understand that you have been gluten free for five days and I know that antibodies can drop fast for some....but years for others (like me), but you would think in two weeks or so (after a good loading up on gluten), you should see some significant damage.  Let me back pedal here.  when I was diagnosed, I was just positive on the DGP and had anemia.  No tummy issues.  Because of work constraints, I waited seven weeks for my endoscopy.  I ate EVERYTHING gluten as a fond farewell, because I knew in my heart, I had celiac disease (no definitive proof, but a "gut" feeling).  In seven weeks, I developed tummy issues.  So, my biopsy revealed pretty moderate to severe results (I guess bad and really bad patches).  

So, if you can, just two slices of bread is the recommendation.  But I ate it like crazy.  Okay, not entire packages of cookies, but I'd sample a few from every bag.  I actually consumed a loaf of sourdough bread each day.  I am not kidding.  Maybe I caused more damage (who knows?), but I went out fighting and was happy to give up gluten for life!  

(I do not recommend be a glutton.  Each person must make their own decision based on their own knowledge and experience!)  

Keep fighting for your health and for your children.  And....don't be surprised if your skinny kid is just skinny!  I thought my niece had celiac disease for sure, but it turns out she has Crohn's at age 19.  Ugh!  

 

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