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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,418
    • Most Online (within 30 mins)
      7,748

    kristitullos219
    Newest Member
    kristitullos219
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.