Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Gi Was Horrid! Made Me Cry And I Don't Cry Easily! Dq2.5 Positive, He Said I Have Ibs!

MsCurious

Recommended Posts

MsCurious Enthusiast
MsCurious
Posted

Today I got a call ... there was a cancellation... did I want to be seen? YES! So I went to this GI I had never met or heard of... within our HMO group. :o He was condescending, pompous, egomaniacal, insensitive, and obstinate! He talked AT ME ... not with me, and as I told him my history, and listed my symptoms and family history, etc. He said, you don't have celiac disease you have IBS! OMG!!!! :angry: He barely would listen to me! Then I said, nobody has told me what my test results are, and I've requested them 3 times. He ignored me. Finally, with much persistence (and me in tears...which I NEVER do... especially in a doctors office when I'm trying to present my case... as if I'm on trial!) he agreed to pull up my HLA test results. Showed me this:

The patient has one of the HLA-DQ variants associated

with celiac disease.

More than 97% of celiac patients carry either

HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302)

or both. However 39% of the general U.S. population

carry these HLA-DQ variants, as a consequence, the presence of HLA-

DQ2 or DQ8 or both variants is not per se diagnostic of celiac disease.

HLA-DQ2(DQA1*05/DQB1*02) Positive

HLA-DQ8(DQA1*03/DQB1*0302) Negative

HLA-DQA1* 01

HLA-DQA1* 05

HLA-DQB1* 0201

HLA-DQB1* 0603

Then he said, people with celiac are skinny... you don't have Celiac Disease... you have IBS. I said I DO NOT have IBS and not all celiac patients are skinny!! He looked at me like a pompous @$$ and said, what do you think you have! I said, possibly celiac and at the very least gluten sensitivity. Then he said, no you don't people with IBS can't eat raw vegetables or salads .. they have trouble digesting them... you have IBS. I said I love salads and they don't bother me. He said, well what does bother you? I said, pasta! :P WHAT A JERK! Anyway, after I summarized my symptoms one more time, and told him his statistics were outdated, (he was spewing things like 1 in 350 people have celiac disease... current stats are 1-133) he finally said, well I'm not doing a celiac panel on you, and I don't do vitamin levels. I was shaking by that time! Then he finally said, well I'll do a biopsy on you just to prove to you that you don't have celiac. OMG!

I'm terrified to have this jerk cut into me! Am I over reacting? I want to cancel my appointment which is this Monday and see a different doctor. :( My family thinks I should.

Also, can anyone tell me what those bottom four numbers are for... what they mean? I have no clue.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


India Contributor
India
Posted

I can't help with the numbers, I'm afraid - but please find a new doctor!

mushroom Proficient
mushroom
Posted

No, MsCurious, I am sorry I cannot help you with the genetic stuff, but I have run into a pompous arrogant, condescending jerk doctor like yours. I reported him to the HMO and to the physicians' group which belonged to the HMO, with a cc to the doctor so he knew where it was coming from. . I would strongly suggest you write out a detailed account of your interaction (or lack thereof) with your doctor during this visit, and how rudely and disrespectfully you were treated. Ask them if this is really what they are paying their physician members to do. Bring some sh*t down on this pompous &%%hole who knows nothing - maybe it will force him to sharpen up his game. At least it will affect his standing amongst his fellow practitioners and with the HMO, who I am sure will be very solicitous of the way you were treated. Every patient deserves respect!! You might send along with your letter some recent info about celiac disease symptoms and statistics to back up your position, because the HMO probably won't know either. You will need something to support your position. But do do it. Type it out right away, and then wait a week or so until you simmer down and go back and edit it so you don't come off like a looney (because everyone is all too ready to dismiss you as such) and you can bring a pile of horse manure down on this dude. I am so sorry you had to suffer through one of these visits. They are so belittling and demeaning. The Doctor God syndrome run amok. :(

P.S. I waited longer before I did it because I was afraid of jeopardzing my care with the HMO but from their response I found out I should not have, they will take care or you because they do want to find out about dudes like this.

Roda Rising Star
Roda
Posted

I would see someone else. If he was this way to you in the office, then who's to say he will even do the procedure right. He might end up telling you they did a biopsy and then not do it. Another person posted recently about that happening to them. So, again, I personally would not let this person touch me. Find someone more compentent!

Jestgar Rising Star
Jestgar
Posted

Keep in mind that you cannot fail out of med school. Once you're in, you're in. This means your doctor could have failed every class three times, but would be allowed to stay and keep taking them as long as he's paying. This means that any physician could be one of the ones that should have been thrown out.

My personal assumption is that the more pompous you are, the closer you were to the bottom of your class.

Report him and find a new doc.

nora-n Rookie
nora-n
Posted

Only 5% of newly diagnosed are under-weight, and 30% are obese.

https://www.celiac.com/articles/1077/1/39-of-Celiac-Disease-Patients-are-Overweight-at-Diagnosis8212A-Full-30-are-Obese/Page1.html

nora

jeanne- Rookie
jeanne-
Posted

HLA-DQ2(DQA1*05/DQB1*02) Positive

HLA-DQ8(DQA1*03/DQB1*0302) Negative

HLA-DQA1* 01

HLA-DQA1* 05

HLA-DQB1* 0201

HLA-DQB1* 0603

Also, can anyone tell me what those bottom four numbers are for... what they mean? I have no clue.

My genetic tests came back with HLA-DQ2 and 8 neg. I too had four varients. According to Dr. Thomas O'Bryan (www.thedr.com), the explaination of the varients is difficult to explain, many doctors don't understand what it means. In short, he said that these varients show that, at the very least, we are allergic to one or more of the gluten protein molecules and therefore gluten should be removed from our diet. He would not explain any further than that.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

No wonder there was a cancellation!

cassP Contributor
cassP
Posted

No wonder there was a cancellation!

:lol::lol:

cassP Contributor
cassP
Posted

MsCurious:

DEFINITELY get a NEW doctor- this one is a huge A$$.. and u dont want to waste ur time & money on the scope- we all guarantee that he'll take ONE biopsy then stamp u a negative... what an a$$... so so annoying.. i wish i could have been with u at ur appointment, i would have taught him a thing or two <_<

and dont feel bad- ive had a breakdown in my doctor's lobby! shaking and crying for the world to see... that's what she gets for only putting me on Synthroid, and then suggesting Antidepressants saying: "no, i think there's something else going on here"... oh, ok, lady

your last four lines of gene numbers are the alpha & beta parts to your 2 genes... the one i can translate to a DQ2.5 (the most classic celiac gene).. but i cannot translate your other gene.. sorry.. hopefully another member can help u with that... but its not a DQ2 or a DQ8.. its definitely at least a "gluten sensitive" gene.. and can possibly contribute to celiac.

IrishHeart Veteran
IrishHeart
Posted

Ms Curious, I know how you feel.

I have met my share of these arrogant jerkwads. I have kept records of all conversations with them for 3 years. When I am healed and as clear-headed and articulate as I used to be, I am going to write them all long letters telling them they not only missed the boat diagnosing me, but they were so dismissive and rude to me, causing tears and sleepless nights and MORE pain, that they have ignored the hippocratic oath of "first, do no harm".

I had a gastro's NP SCREAM at me "YOU just have GERD (my throat and entire GI tract was on fire) and you can eat gluten!" and offer me antidepressants.!! WHAAA?? I left there in tears because I was so sick and losing a drastic amount of weight (90 lbs), daily diarrhea for 2 years--and this not a clue to her??

Also,I was FAT for years--and always sick with "IBS" ...BULLONEY. So, celiacs are large and small in size.

This guy is Freakin ClueLESS!!!!

Do NOT return to him for treatment. He's not going to get any more understanding or knowledgeable by your next visit.

DO write a letter regarding his treatment of you. We don't do enough reporting of these a-holes.

You--we--deserve better treatment.

MsCurious Enthusiast
MsCurious
Posted
  • Author

Keep in mind that you cannot fail out of med school. Once you're in, you're in. This means your doctor could have failed every class three times, but would be allowed to stay and keep taking them as long as he's paying. This means that any physician could be one of the ones that should have been thrown out.

My personal assumption is that the more pompous you are, the closer you were to the bottom of your class.

Report him and find a new doc.

The bottom of the class was my exact thoughts...and I told my husband that very thing. He thinks I should find a different doctor, and so do I!

shopgirl Contributor
shopgirl
Posted

I agree that you definitely need a new doctor.

And I was another Celiac with big weight gain (60 pounds overweight). Less than 5 months gluten-free and the 60 pounds is gone.

MsCurious Enthusiast
MsCurious
Posted
  • Author

MsCurious:

DEFINITELY get a NEW doctor- this one is a huge A$$.. and u dont want to waste ur time & money on the scope- we all guarantee that he'll take ONE biopsy then stamp u a negative... what an a$$... so so annoying.. i wish i could have been with u at ur appointment, i would have taught him a thing or two

your last four lines of gene numbers are the alpha & beta parts to your 2 genes... the one i can translate to a DQ2.5 (the most classic celiac gene).. but i cannot translate your other gene.. sorry.. hopefully another member can help u with that... but its not a DQ2 or a DQ8.. its definitely at least a "gluten sensitive" gene.. and can possibly contribute to celiac.

Thanks for the support and helpful thoughts, cassP. :)

MsCurious Enthusiast
MsCurious
Posted
  • Author

Ms Curious, I know how you feel.

Also,I was FAT for years--and always sick with "IBS" ...BULLONEY. So, celiacs are large and small in size.

This guy is Freakin ClueLESS!! You--we--deserve better treatment.

Yeah, he was beyond CLUELESS! Thanks for words of support! :)

dbhickma Rookie
dbhickma
Posted

Did you end up getting a copy of your file? If you didn't you or your husband (whichever is calmest) should go back and get one. ALWAYS ask for a copy of THAT day, that way they can't give you sass about having to request and have it take days blah, blah, blah. That way you can also compare your bill vs. your record. Next Dr who pulls the same just say thank you and walk out. You're already going to pay them for the visit, no need and stay and be abused as well. There comes a point when you KNOW their speech is coming. I think those of us who've seen enough Drs. by now KNOW when it's coming. I think back on all the Drs who made me feel like I was crazy and wonder at the amount of people they have done the same to. I've walked out of Drs visits and looked around at the waiting room full of people and wanted to run to them and say "Run!" I hope the best for you and hope you find a good Dr. who actually cares.

IrishHeart Veteran
IrishHeart
Posted

Yeah, he was beyond CLUELESS! Thanks for words of support! :)

You're welcome, sweetie---blow him off!! Here's a (((hug))) :) Time for a new doc!! Best wishes!!

And I agree with dbhickma above---get copies!!! ;)

MsCurious Enthusiast
MsCurious
Posted
  • Author

I would strongly suggest you write out a detailed account of your interaction (or lack thereof) with your doctor during this visit, and how rudely and disrespectfully you were treated. Ask them if this is really what they are paying their physician members to do. Bring some sh*t down on this pompous &%%hole who knows nothing - maybe it will force him to sharpen up his game. At least it will affect his standing amongst his fellow practitioners and with the HMO, who I am sure will be very solicitous of the way you were treated. Every patient deserves respect!! You might send along with your letter some recent info about celiac disease symptoms and statistics to back up your position, because the HMO probably won't know either. You will need something to support your position. But do do it. Type it out right away, and then wait a week or so until you simmer down and go back and edit it so you don't come off like a looney (because everyone is all too ready to dismiss you as such) and you can bring a pile of horse manure down on this dude. I am so sorry you had to suffer through one of these visits. They are so belittling and demeaning. The Doctor God syndrome run amok. :(

P.S. I waited longer before I did it because I was afraid of jeopardzing my care with the HMO but from their response I found out I should not have, they will take care or you because they do want to find out about dudes like this.

Thanks, so much Mushroom for your support and sound advice. I was thinking about doing just that! I wrote a post to you...the phone was ringing... carpet cleaner came, and husband called... when I got back to the screen ... I couldn't tell if I posted it or not! :blink: Hoping it shows up on page two! LOL :) I have more info from the conversation with my regular doctor... will post that in a bit, but I DO NEED everybody's sound input on it! Kind of at a decision point here, critical to diagnosis. Doctor suggested something strange.

GAH! This is an edited in comment... I went and looked and my first BIG OLE informational post to all of you vanished! :P SO, I will try again. More fun and adventures in the life and "bad" times of celiac patient trying to get the doctors to even remotely do their jobs! :blink::rolleyes:

MsCurious Enthusiast
MsCurious
Posted
  • Author

I agree that you definitely need a new doctor.

And I was another Celiac with big weight gain (60 pounds overweight). Less than 5 months gluten-free and the 60 pounds is gone.

Now THAT is encouraging! Thanks for sharing that shopgirl! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Kwinkle's topic in Coping with Celiac Disease
      7

      I’m so confused…

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    2. knitty kitty
      - knitty kitty replied to Kwinkle's topic in Coping with Celiac Disease
      7

      I’m so confused…

      Hello, @Kwinkle, How are you doing? Have you tried adding a Magnesium supplement? The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1. Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating. Thiamine deficiency symptoms also include loss of appetite and fatigue...
    3. Scott Adams
      - Scott Adams replied to Kj44's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Testing

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet.
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Chinese & Asian
      2

      Gluten-Free Ramen: A Comforting Bowl of Japanese Tradition

      Definitely, I have ramen regularly as Costco sells an excellent brown rice & buckwheat gluten-free ramen (just the noodles--they also sell a GF chicken soup stock in jars that works well to make ramen).
    5. trents
      - trents replied to Kj44's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Testing

      Have you considered the possibility that you might have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease? They share many of the same symptoms, the difference being that NCGS does not damage the lining of the small bowel. It is 10x more common than celiac disease. There is no test yet available for NCGS. Celiac disease must first be ruled out...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,172
    • Most Online (within 30 mins)
      7,748
    Angie Helms
    Newest Member
    Angie Helms
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 
    • trents
      Testing

      By trents · Posted

      Have you considered the possibility that you might have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease? They share many of the same symptoms, the difference being that NCGS does not damage the lining of the small bowel. It is 10x more common than celiac disease. There is no test yet available for NCGS. Celiac disease must first be ruled out. In view of your genetic profile, I would give it consideration.
    • Kj44
      Testing

      By Kj44 · Posted

      Yes
×
×
  • Create New...