Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Two Docs With Differing Opinions


  • Please log in to reply

30 replies to this topic

#1 AVR1962

 
AVR1962

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,107 posts
 

Posted 16 December 2011 - 05:24 AM

My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

Celiac.com Sponsor:

#2 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 16 December 2011 - 05:29 AM

Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 BabsV

 
BabsV

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 390 posts
 

Posted 16 December 2011 - 06:17 AM

It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?
  • 2

#4 saintmaybe

 
saintmaybe

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 204 posts
 

Posted 16 December 2011 - 07:16 AM

Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.



For some reason, doctors have this idea that being gluten free is an inhumane and profound hardship. It is baffling to me, since other people willingly eat fad diets or kosher diets or vegetarian or vegan. No one gets more crap for their diet than celiacs do, and it is a complete mystery.

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.
  • 1

#5 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 16 December 2011 - 08:52 AM

My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

Let me get this straight. You are asking whether to trust a liar? Stick with new doc. He sounds good.
  • 1

#6 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 16 December 2011 - 10:20 AM

Sounds as if he does not like being contradicted by NEW doc. :rolleyes:

Weren't you improving and finding relief from being gluten-free?

What do you think explains this improvement???

What did he make of that???

How are you lab tests now?

Not sure what the dilemma is here, hon!!

New doc, new diet = you feel better.
:)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 Elizabeth5220

 
Elizabeth5220

    Community Member

  • Advanced Members
  • PipPipPip
  • 44 posts
 

Posted 16 December 2011 - 10:38 AM

There are good docs and not-so-good-docs...and it's not always intentional. For too many years we put doctors on pedestals and assumed they were always right and we did what they told us to do. Unfortunately, or fortunately (!) the human body is a very complex thing.

In my very humble opinion, 100 years from now we may very well look back on on medical knowledge and think we were in the dark ages in 2011. I also believe that as patients, we need to take an active role in our care...which is exactly what you've done. Trust your own instincts. Listen to your body.

Stay with the 'new' doc... ;)
  • 2

#8 Takala

 
Takala

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,555 posts
 

Posted 16 December 2011 - 11:59 AM

And you're wasting your time with this incompetent person, why ?

I don't "officially" have much of my auto immune diseases, either, because of the way the health care system in the United States changed in the late 1990's and began to reward incoherence and shuffling patients from one doctor group to the next, and I moved from one state to another without taking full medical records.... not that it would have mattered, I have had deliberate crooks, aka medical specialists, only interested in the initial consultant reimbursement look at x rays showing damage and declare "you don't have arthritis" when I've had one who wasn't so in on this racket be shocked that I am not a complete invalid with this much visible damage. At least this one (who also tested me for antibodies after years off of gluten ) humors me on the "gluten intolerant" part. And I was diagnosed in the 1980's with this supposedly "no cause" condition. That's 30 years of idiots, some of which who were shockingly nasty about it, telling me there's nothing wrong or that I'm making it up, and there is no end in sight for my lifetime. Thanks, insurance industry !
  • 2

#9 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 16 December 2011 - 12:17 PM

My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.


Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 captaincrab55

 
captaincrab55

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 329 posts
 

Posted 16 December 2011 - 05:37 PM

Time to FIRE a Doctor, case closed...!!!!!
  • 2
I'm a New Man Without GLUTEN!

#11 Chad Sines

 
Chad Sines

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 279 posts
 

Posted 16 December 2011 - 09:48 PM

pretty simple. if being off gluten is working..then...well...you got your answer. every doc has their on beliefs, biases, and proclivities. it sounds to me that you already have your answer but this quack has you bothered a bit.
  • 3

#12 AVR1962

 
AVR1962

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,107 posts
 

Posted 17 December 2011 - 12:35 AM

It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?

I am in Gerany and I have thought many times of going to a German doc. I am sent off base for certain things and it was thru the University hospital in Heidelberg that a German doc determined I diod not have hypercalcemia which my old doc thought this was. German doc took one look at me and said I can tell you witghout running any tests that you do not have hypercalcemia. However, he did tests that the military docs did not run and it was determined. Since being on a gluten-free diet my calcium levels have never gone back up again, all my parathyroid tests have turned out fine.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#13 AVR1962

 
AVR1962

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,107 posts
 

Posted 17 December 2011 - 12:45 AM

Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?

Thanks Prickly, I have done way too much research and did everything possible, mostly on my own and with the help of you guys here to figure everything out and there is no way I am taking steps backwards at this point. My husband and I sat last night and the very first question he asked was the very question you mentioned here. In all the tests that I went thru for 7 months with no answers, this man (old doc) could not, and still cannot give me an answer.

If this is not celiac, that leads me to MS (still have not seen my MRI, only know I do not have tumors), Parkinson's, alcoholism, or HIV due to the improvement on the gluten-free diet and the neuropathy isses I have. I know I can rule out HIV and alcoholism. Ugh, ugh, ugh.

I am going to see what I can do to get my primary health care provider switched to the new doc that diagnosed with celiac.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#14 plumbago

 
plumbago

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 248 posts
 

Posted 17 December 2011 - 07:10 AM

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.


This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago
  • 0

#15 AVR1962

 
AVR1962

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,107 posts
 

Posted 17 December 2011 - 10:58 PM

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.


This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago

Isn't it something? I am floored actually. I realize that celiac has symptoms very similiar to many other diseases however, one by one we have eliminated several and I think I can ake MS off that possible list. I'll just press forward with what I know works and assume my new doc is correct.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: