Discouraged By My Dr.

[CanadianK]

In June I went to a Naturopath for all my gut/mental health issues and she ran a celiac test. The DGP IgA came back as almost positive. In the "normal" range, but where .9 was the positive, mine was .8. I had been gluten light for 2 years.

 

So I decided I wanted definite answers. Went to my GP, got into a GI Specialist, and started the ball rolling. Colonoscopy done, as well as blood work for lactose intolerence. She recommended the celiac test (before I even mentioned that I wanted one) and she advised me doing a 10 week gluten challenge. I wanted answers so I did it.

 

10 weeks of feeling awful, more fights with my husband than we'd had in years, bloating, D, pain, joint pain, debilitating migraines... I'm sure you all know what I'm talking about. And during that time I read a TON about celiac. Visited these forums, learned, listened to podcasts and got myself up to speed about everything.

 

Before the endoscopy I checked with the Dr. that the celiac panel she'd ordered for me to do after the endoscopy included all the tests this forum suggested. TTG IgA/IgG, DGP IgA/IgG, EMA, (the total serum had been done before and was within range). I requested 6-8 biopsies. She complied and said YES to everything, and assured me all my requests would be met... I felt so good and validated with her...

 

Today I finally got my results and it turns out she only took 3 biopsies, and the blood work "Celiac Panel" she requested only tested my TTG IgA and DGP IgG!!! Both came back negative. I really wanted to see if my DGP IgA level went up since that one was so close to being positive gluten light...

 

I am feeling so annoyed/betrayed/hopeless... I've now been off gluten (and dairy, grains and eggs) for 5 weeks now (since I thought I had allll my bases covered). I am 10 times better and I was really looking forward to having some closure with this. It's been years and years of not being well...

 

I just feel a total sense of powerlessness in this. I advocated for myself so clearly and felt so proud of myself for finally putting forward my demands but the Dr had another agenda and didn't honour my requests for MY body.

 

Argh.

 

I won't do another gluten challenge. I just wanted some answers. Even if they were positive or negative. But I feel now that things weren't done properly I'm right back to where I started before I took on the gluten challenge. It feels like all that pain and mental health disruption was for nothing.

 

[BlessedMommy]

Welcome to the club! We should have a sub forum here called "Strictly Gluten free Without a Diagnosis." LOL!

 

I won't do a gluten challenge ever again, because the neurological implications are too scary, so I live a celiac lifestyle and am getting to the point where I'm fairly comfortable with that.

 

I wish that it had been possible to get a DX, but you know what, I feel 100x better off of gluten. Some of my gluten issues were very obvious (severe skin rash) and most people who remember that, can understand why I care about being strict. Those who don't remember that, will usually know about the TIA I had from the headaches while on gluten. I knew 100% that after having the TIA, I would never go back to gluten despite what any lab tests told me. Positive, negative, inconclusive, it wouldn't really matter. So I'm happy and healthy and at the end of the day, that's more important than a diagnosis.

 

Most of the time an adult can get by without a diagnosis. I've been in the hospital since going gluten free (had to go with my son to the children's hospital for a femur fracture) and they happily let us eat off their wonderful gluten free menu, no requirement to be celiac to eat from it.

 

And your gluten challenge wasn't for nothing! Now that you have gone through it, you know firsthand what gluten does to you and can be motivated to be strict in your diet.

 

Hang in there! Everything will be fine. 

[nvsmom]

Ugh.   How frustrating for you!  You did everything right and they messed it up.  Sigh.  You could always request the DGP IgA form you other doctor and compare it to your earlier one.  Sometimes tests can linger high for a while, although the DGP tests are often some of the first to come down.  

 

Well, I guess you can tell people that you had celiac tests done and you need to eat gluten-free... it's all true, right?  

 

Best wishes.

[bartfull]

I would have a talk with the doctor though and tell her what you told us. Tell her you feel betrayed and lied to. Then tell her she's fired.

[Serielda]

CanadianK, getting diagnosed is tricky tricky trust me. Since my mid 20's I was plauged by illness that seemed centered around food, that sometimes left effects that out of fear made me high tail it to the Dr. to be told its' the flu or food poisioning but the older I got I sensed things was a bit more complex than that. I had a Dr give me a test trying to figure out what was causing me so much pain and it came back negatory. A few yrs later another Dr. who I went to  as my old one retired gave a test guess what negatory. Finally  after moving to another city and finding a celiac savvy healthcare system I finally got my answer to what was wrong. I agree that horrid challenge is brutal and I know way to well. My advice honestly and I am not a Dr. but if it is mkaing you ill cut it out, I liken things to a burner, your not gonna keep sticking a your hand on a raging hot burner over and over right, so why keep eating that horrible crap aka gluten and feeling horrid. And like Bartful said if they won't listen can their tush if  you feel they are not listening or doing you right all patients have rights.

[nvsmom]

  On 10/15/2014 at 6:41 PM, bartfull said:

I would have a talk with the doctor though and tell her what you told us. Tell her you feel betrayed and lied to. Then tell her she's fired.

 

Up here it's a bit harder to fire doctors. It can be done but then you have to get another referral  and start at the back of the line. To this date I have never been to a GI specialist; the wait for celiac disease  issues was one year in my city of over a million, so I skipped it entirely... Of course, since you are not going back on gluten to do more testing you can fire her and not worry too much.  

[BlessedMommy]

Wow, 1 year? So they expect an ill person to keep on eating gluten for an additional year in order to get an endoscopy? That's crazy!

[SMRI]

  On 10/16/2014 at 2:41 AM, nvsmom said:

Up here it's a bit harder to fire doctors. It can be done but then you have to get another referral  and start at the back of the line. To this date I have never been to a GI specialist; the wait for celiac disease  issues was one year in my city of over a million, so I skipped it entirely... Of course, since you are not going back on gluten to do more testing you can fire her and not worry too much.  

 

That is just crazy...glad I can just call and get an appointment when I need one!!

[1desperateladysaved]

You might ask if the lab has enough of your blood samples in store to run some more tests for celiac.  My lab keeps draws for about 6 months and one can request more tests.  I hope that will help!

 

Your other test (reactions to gluten free) sounds really positive!

 

Dee

[frieze]

since she out and out lied to you, isn't there a medical society/board that you could report her to?

[dania]

CanadianK - do you know if it was your doctor that didn't put the tests on the form even though she said she would, or maybe it was the lab that just didn't do them? I'm in Canada (BC) and the lab won't do certain celiac tests and also has certain rules about what can be ordered together. My doctor was super willing to order any celiac tests I wanted and I had a copy of the requisition form so I know that both the DGP IgA and DGP IgG were on it, yet the lab would only do DGP IgG so that's the only one I got back on my results. Same with TTG - the lab would only do the IgA and not the IgG.

 

My lab also will only run the total serum IgA if it's ordered by itself; if it's ordered with TTG or other celiac tests, they won't run it (I have absolutely no idea why).

 

Have you talked to your doctor since you got your results? Maybe it's something the lab did.

[CanadianK]

Thanks for all your replies. It's been a topsy turvy week as I dealt with this disappointment, but I've come out the other side and I'm feeling ok with it all. Ultimately I know what I need to do. I realized I was also feeling challenged by certain family members doubting me and I just wanted proof/dr's approval to show this one person… I think I need to work through some "stuff" !! lol! 

 

I have lymphocytic colitis and I'm lactose intolerant which this GI found and diagnosed (so it wasn't ALL for nothing). The diet for LC is to stop grains, dairy, casein, etc. so I've been doing that and feeling tons better. The "gluten migraine" I get is flaring up less which means I'm avoiding even small amounts so I'll just keep trekking on. A

 

I have an appt this week with the GI. I'm going to ask her where things went wrong.

 

@Dania You might be right that it's the lab… I had researched which labs run which tests and chose accordingly. But from what you described and the tests your lab ran it sounds very similar to the results I received. It's times like these that I wish we had more power and transparency in our medical system. 

 

 

 

  On 10/19/2014 at 3:34 AM, dania said:

CanadianK - do you know if it was your doctor that didn't put the tests on the form even though she said she would, or maybe it was the lab that just didn't do them? I'm in Canada (BC) and the lab won't do certain celiac tests and also has certain rules about what can be ordered together. My doctor was super willing to order any celiac tests I wanted and I had a copy of the requisition form so I know that both the DGP IgA and DGP IgG were on it, yet the lab would only do DGP IgG so that's the only one I got back on my results. Same with TTG - the lab would only do the IgA and not the IgG.

 

My lab also will only run the total serum IgA if it's ordered by itself; if it's ordered with TTG or other celiac tests, they won't run it (I have absolutely no idea why).

 

Have you talked to your doctor since you got your results? Maybe it's something the lab di

[SMRI]

I don't know why you put up with care like that.  You pay through the nose in taxes for that medical care!!!

[nvsmom]

  On 10/19/2014 at 12:37 PM, SMRI said:

I don't know why you put up with care like that.  You pay through the nose in taxes for that medical care!!!

In my province we have to put up with it because there are no options unless we travel out of province or country and pay for it ourselves... or are paying for extra insurance that will cover some of it.