Jump to content
  • 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

How Do You Talk To Doctors?


honeypond

Recommended Posts

honeypond Rookie

My son Noah is on a Gluten free/Casein Free Diet and has been for a year, he is doing pretty good with it. But I have yet to get any kind of diagnosis or acknowledgement of this from any doctor.

We just moved and Noah's first Dr. appt. with his new doctor here is next week, and I am a nervous wreck about it. I have all of these things that I want to talk to him about. But my track record with doctors SUCKS!!

All of you that talk about getting your child tested for this or that. Noah with all of his issues physical and otherwise has never been TESTED for anything. I am so jealous of you that are getting a diagnosis from a doctor. I have never had a doctor offer up any kind of proposal for testing. It would be such a novel thing for me to have a doctor that would take the time to try to figure out what is wrong rather than just blow me off and prescribe a stool softener.

How do I go in and explain 4 years of medical history and ask for allergy and celiac testing to this new doctor. I am sooooo nervous, I want this to be a better experience for us. And I really WANT Noah to finally get a diagnosis and CARE from a doctor. I am tired of guessing at what is going on with his body.

I wrote out yesterday exactly what I want to say to the doctor, but when I am in there things always go so differently. HELP, how do you do it??

_________________


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

After having two BAD experiences, I write out a full medical history (of myself) including important events and the dates they occurred/began. I write a list of my current concerns and then follow it with a list of questions I want answered in THAT appointment.

It has helped (I bring a copy for the doc and myself) but I'm SURE there are doctors that would just put it away and not give it a 2nd look :(

Really- the most important thing is finding a doctor who listens. I'll be totally honest- my best experiences with one exception have been with young female doctors. If this doc doesn't LISTEN then find another. They ARE out there. Really- I finally have a primary, GI and specialists that I adore!

sbj Rookie

I just want to second that a full medical history is very, very, very important. This means that not only should your child's doctor know your child's complete medical history, he/she should also know the records of mom and dad, siblings, and grandparents. If you don't have one please start preparing it right away - it could literally save your life. If a new doctor doesn't ask for all of this information on your very first visit then you should be very suspicious that he/she is doing a good job.

What I do for myself (no kids) is write everything down that I want to ask my doctor about. I then sit in the exam room, pull out my sheet of paper right in front of him, and methodically go through every single question I have until I get a good response. I take notes so that I remember what he has told me. In your case I think you should expect some skepticism from the doctor about any 'diagnoses' you have come to on your own - I think this is natural. I would stick to an explanation of symptoms only, followed by your thoughts on potential causes. Keep in mind - there may be some things that you are wrong about and this might end up being a great doctor! This should be a partnership with your doctor - not some sort of contest. Good luck.

kbtoyssni Contributor

I'm self-diagnosed based on positive dietary response (with negative blood test) and I just matter of factly tell them that I have celiac disease. If I had a doctor question me, I'd walk out. I haven't had to walk out yet.

Also, if your son has been gluten-free for a year, celiac tests will be negative. You have to be eating gluten to test positive so you may not want to ask for testing unless it's more follow-up/checking for complications type testing.

ang1e0251 Contributor

I do the same. I walk in with a list of questions and a pen. Even if I think I can remember everything, I pretend I am writing, it keeps the dr on his toes.

If you have a real problem talking firmly to the dr, it can be helpful to take a confidant family member with you. For one thing, they can back you up when you describe things to the dr (a witness) and maybe they can deal with the dr better, if you are so nervous.

Don't get defensive. If the doc feels you are double teaming him, you will definately make him feel trapped. But ask for his help and be logical with him. Remeber that's how docs look at problems, logically, so if they see any hint of emotion they write you off. They want to hear cause and effect; " he had D 10 times a day, when we no longer eating gluten, his stools became normal". Something along those lines. Do not put down your other dr's. He will think you are going to do the same to him and won't want to deal with you. Just say after all these years you feel knowing the cause of the symptoms is important and you feel strongly that testing along these lines is important.

You need to know that he will have to be actively eating gluten for any of the tests to have a chance of being positive. Even then, they might come out negative. Are you prepared to put your son back on gluten for testing? Decide that before you ask the dr to do it.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.