Starting Over with GI Dr.

[melprkr]

Just had my 2nd visit with a new GI doctor I started seeing earlier this year.  I was diagnosed with Celiac by another GI in June of 2015.  Wasn't happy with him because he said he "might" diagnose only one celiac per year.  Told me to just do gluten free and sent me on my way.  Diagnosis was with EGD biopsies as well as celiac panel.  If I remember correctly (only because it has been a year ago) my biopsies showed Marsh 3B for villi damage.  This new GI told me yesterday that she was going to re-do the EGD, which I agreed with, but then she added "so this way we can really determine if it is Celiac or if  you are just gluten sensitive and might just even get you to add some gluten back to your diet."  My response? No way will I be putting gluten back into my diet in any way, shape or form.  I explained to her I know what it does to me.  I have determined that the only service she can be to me is to do my EGD's and give me my results.  This is ridiculous.  You go to a doctor and you have prior results showing the damage.  But they still want to try and get you to "gradually put gluten back into your diet".  How moronic can you be?  You are supposed to be helping me feel better, not worse.  I have already had to eliminate milk, by choice because of constant aching and swelling in my joints.  Which I did explain this to the new GI.  All she seemed to be concerned with was diarrhea, but I told her I do not have the diarrhea.  Only time I get that way is when I have had milk and then I have bad gas pains, bloating, etc. then can't eat for several days because every thing (regardless of what it is) sets my system into a tizzy.  I can see why people get so frustrated.  I don't understand why doctors just won't listen to you.  And it just hit me that she didn't even order new labs to check my tTG-IgA.  Go figure.  Guess she will do that after the EGD.  My specific question to her nurse and to her when I first saw her was do you treat Celiac's and the answer was yes.  Starting to think this won't be the doctor I stick with.  We shall see after the EGD is done.  Feeling even more frustrated now than when I was first diagnosed.  Does anyone else have any recommendations?  I know I have heard stories where people have gone through several doctors.  But it just seems like a waste of time when all they need to do is check for certain things.  What good is it to go to the doctor if they don't know what to do with the test results.

Can anyone else share their story for when they were first diagnosed until they found the right doctor?

[Jmg]

Disclaimer, I wasn't diagnosed, am therefore ' just gluten sensitive' but would never think of consuming a small amount of it and was told never to do so by my own GE...

That said, I did run into trouble with Doctors who were ignorant of Coeliac. Like any profession there's good, bad and indifferent. I'm surprised by the new GI you describe,

If you're like me it's difficult when you're in with a Dr to remember all the things you want to say. I suggest writing things down in advance and if I were you I'd phrase it something like this:

Doctor, given my prior positive Blood panel and Biopsy meet the 'gold standard' for diagnosis, what clinical reasons are there to doubt the original findings?

Furthermore, given that I am currently successfully following a gluten free diet and that even a 'small amount of gluten' is clinically proven to increase risks of (amongst other conditions) lymphoma for celiac patients,  what clinical reasons can you give me for risking further gluten mediated damage to my health?

Finally, as you've not ordered futher serology and I'm currently gluten free, on what clinical basis are you going forward with the new EGD and how will its finding be conclusive without also undergoing a gluten challenge.

You could ask those questions or similar or just find someone else because the account you give above would not fill me with confidence...

All the best to you

 

 

 

[Gemini]

I hope you will bear with me on my opinion because I do things differently than many.  The reason for that is because my experience years ago when trying to find out why my gut hurt so bad was every bit as annoying and frustrating as yours, so I do understand how you feel. 

I do not have and never did have after diagnosis, a GI doctor.  Maybe if I had found a great one, things would be different but that didn't happen.  I figured out Celiac all on my own and then called my thyroid doc in desperation for the antibody testing I had just learned about because I have classic Celiac and had hit critical mass with it.  I was losing 1 pound PER DAY and had to act quickly.  I failed all the tests on the panel by large numbers so she diagnosed me then and there.  I was too sick for the biopsy but my results after going gluten free were nothing short of a miracle.

So...my feeling on this is that after you are scoped by this second GI doc and get the results, you really don't need a GI doc anymore.  You have Celiac and should just do the scope to see how well you are doing.  I have never been scoped because I have done so well on the diet, there has been no need.  I have a PCP or my trusty thyroid doc do the antibody re-test every couple of years.  I have been gluten-free for 11 years now and every time, my numbers come back stellar. I guess if I developed a GI problem that needed one of those GI people, I would but I haven't and will not see them.  They were useless to me and I am not going to spend a lot of time seeking out docs who behave like yours did.

You can have your PCP do the antibody re-test and then do whatever relevant testing you want to have done.  I am not a big testing person so vitamin panels and antibody re-tests are about it!  If you were diagnosed earlier with positive panel and biopsy, you have Celiac so don't doubt yourself.  Some of these people just want to make money off of excessive testing that you do not need.  Good luck!

[squirmingitch]

You need to get copies of your records from the GI who dx'd you. That way you will have them, you will know & you can take them to anyone else at any time.

Gee, that first GI who dx'd you doesn't seem so bad now huh? Maybe you ought to go back to him. Tell him you want an EGD. Really, that's only needed if you feel you're not healing. Otherwise you get the blood tests to make sure your numbers are going down or have gone to normal which let's you know you've healed or are healing. 

This GI you just went to is off her rocker big time!!! She can't do an EGD & make a dx of celiac if you've been eating gluten-free which I assume you have. WTF is her problem? She knows NOTHING about celiac. Wanting to ignore your dx & re-do a dx????!!!!! Kick her to the curb and FAST!

[melprkr]

Thanks so much for all of the encouragement guys.  She really did make me doubt.  But after going back and reviewing all I know and all of the records I have obtained and kept throughout this last year, I know I have Celiac.  I will allow her to do the EGD only because I don't want to have to wait 6 more  months to get in to see someone else.  But I promise you that if I continue with her after this there will have to be an understanding.  Really all I need her for is the confirmation of healing or not healing.  As far as treatment, not so much.  I know gluten-free is the ONLY treatment.  I really didn't think I would run in to this but guess I was wrong.    

[Gemini]

On 6/15/2016 at 3:54 PM, melprkr said:

Thanks so much for all of the encouragement guys.  She really did make me doubt.  But after going back and reviewing all I know and all of the records I have obtained and kept throughout this last year, I know I have Celiac.  I will allow her to do the EGD only because I don't want to have to wait 6 more  months to get in to see someone else.  But I promise you that if I continue with her after this there will have to be an understanding.  Really all I need her for is the confirmation of healing or not healing.  As far as treatment, not so much.  I know gluten-free is the ONLY treatment.  I really didn't think I would run in to this but guess I was wrong.    

I think that is a good plan.  You may as well do the EGD to see how you are doing for the reasons you stated.  Once that is done, then you can decide what to do next, as far as having a GI or not.  Unless other symptoms or issues arise, just following the gluten-free diet will keep you in better health.  Honestly, in 11 years gluten-free, I have never needed a GI. My thyroid doc, who helped me more than anyone else to get diagnosed, runs the repeat antibody tests.  I don't even need those every year, either.  If they come back repeatedly in the excellent range, then you could probably go to every other year.  I guess it depends on your comfort level.

[frieze]

OP, i am thinking you must have good insurance....

[cyclinglady]

Here is my two cents.  

I manage my care using my GP/PCP doctor (thyroid, celiac disease) but I do have a GI.  Why?  My insurance/provider only allows a GI to order a complete panel.  Yep, it is true!  

I have not had any follow-up biopsies.  I am doing well.  I have had follow-up blood tests.  

Each medical procedure has risks.  You probably should weigh those against the benefits.  This is close to my heart.  My Aunt went into the hospital for a simple procedure and died within 48 hours from an acquired infection.  No wonder my family was freaked when I had gallbladder surgery, but in my case my GB was already infected.  I could have died if it was not removed.  I had my initial endoscopy because I really needed a firm diagnosis to comply with the diet because I did not have abdominal symptoms at the time.  I do not plan on having another one unless I am struggling with major symptoms.   Not trying to freak you out, but nothing is guaranteed in life.  

[Jmg]

I agree with Cyclinglady - an endoscopy is not risk free, even the best run hospitals can sometimes be sources of infection and if I were you I'd ask the doctor to explain their reasons for ordering one. See my post further up the page for the points I think are worrying. You have the diagnosis already, why are they casting doubt on it?

I go back to this:

On 6/15/2016 at 3:26 PM, melprkr said:

 "so this way we can really determine if it is Celiac or if  you are just gluten sensitive and might just even get you to add some gluten back to your diet."  

You've already said no way will this happen and I completely agree with you. You already have a 'gold standard' diagnosis from a doctor who has told you they don't often diagnose celiac. 

So if you're not going back on gluten regardless, what is the purpose of this serious medical procedure? 

 

 

[cyclinglady]

Did you get or do you have all the lab results and files from you original GI?  Were they presented to your new GI and PCP?  The new GI might be tainted by folks claiming celiac disease but are on the gluten-free bandwagon!  Your word against hers.  

I have all my medical records for the past 20 years.   I summarize my conditions, but attach lab copies for all my ailments when I see a new doctor.  Geez, I am diabetic (type 2) and am controlling with diet and exercise.  I now test as a non-diabetic.  If I did not share my lab results with my new PCPS she would not have believed me.  

[vkral]

On 6/15/2016 at 4:26 PM, melprkr said:

This new GI told me yesterday that she was going to re-do the EGD, which I agreed with, but then she added "so this way we can really determine if it is Celiac or if  you are just gluten sensitive and might just even get you to add some gluten back to your diet."  My response? No way will I be putting gluten back into my diet in any way, shape or form. 

This makes no sense to me, because if you were to have your EGD re-done for diagnostic purposes (ie. not to confirm the healing process), you'd have to eat gluten for significant time (ie. months) beforehand.

[melprkr]

Everything I have learned I have learned through this forum or simply from my last EGD results and labs and then looking them up on the internet.  The drs have given no information except for do a gluten free diet.  My understanding is that a repeat EGD is needed to confirm healing.  When I was tested about this time last year I was a Marsh3b.  Which in my research is pretty serious.  I am still having ill effects from god only knows what these days.  I went strictly gluten free June 2015.  I have had glutenings (not by choice) and the last one I had was because of an antibiotic that I took that has sent me through the roof with anxiety issues.  I try to be as careful as possible but it is like it doesn't seem to matter how careful I am I am either aching and hurting in my joints, tired all the time or OK one minute and the next feel like crap and that my world is about to end.  It is very frustrating to say the least when you go to the dr and you are expecting support or some sort of answer and don't get one.  I have eliminated milk from my diet as of about a month and a half ago.  That seemed to help, some.  But I still have days where I hurt and ache in my elbows and in my hands.  I have moments when I am about to freeze to death and sit with a heater and where I live the temps outside are 90+ degrees plus humidity and the AC is not even on.  Most of this has just started happening I would say in the past 4 months or so.  At night when I go to bed I wear sweat pants and a sweat shirt and sleep under 4 blankets and a sheet.  They say my thyroid is fine.  I feel like I have some issues with my nervous system but to be honest with you I haven't seen drs enough to mention this to them because all they are worried about is if I have diarrhea. 

Cycling Lady I will be keeping any all records that I have and continue to gather the ones for anything I have done in the future.  .  I have been through health issues with my husband and would keep all of his records and labs so we would have proof.  Just seems like doctors don't care anymore.  The last GP I went to actually listened to me and I will see her again next month after the EGD.  I did give ALL of my records, EGD, labs, medical records, etc. to the new GI prior to our first visit back in January.  She said she reviewed them.  And told me we would re-draw the labs and schedule EGD to check healing when I went to her this month.  We have scheduled the EGD but no mention of labs. 

JMG I am having the procedure re-done so that I can see if I am healing.  Mostly because of all the ailments I still have or seem to be developing every day.  I used to be a person who could remember things and get things accomplished but lately that has not been happening and scares me more and more every day.

I understand that no procedure is risk free.  I have had 2 C-sections, wisdom teeth removed and tubal ligation.  Each one had its own issues after they were done.  I am a person who has to see it to believe it I guess.  If I don't see it, it is hard for me to understand it. 

It is hard to figure this out when I am the one who usually takes care of everyone else but then when I need to be taken care of, nobody knows what to do.  I think that is it in a nut shell. 

All that ya'll have told me is a big help.  Around here I have no support groups or even a good friend I can talk to about stuff that would even come close to understanding.  My husband will listen, but he doesn't understand.