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

Doctor Doesn't Know What He's Talking About?


emi-220

Recommended Posts

emi-220 Rookie

I was diagnosed about 4 months ago with celiac disease and was the first one in my family diagnosed so my parents were told to get tested also, even though they don't appear to have symptoms (although i know it's possible they still have it and are asymptomatic) . Both my mom and dad tried calling their doctors to see if insurance would pay, but they were told insurance wouldn't pay because it was just a "screening" since they didn't have symptoms. Then yesterday, my dad went for a physical and the doctor pretty much refused to test him, saying, and I quote, "if you're asymptomatic, then what difference does it make. There's no reason to stop eating gluten because there's no effect." My dad then inquired about the damage to the intestine and long term effects such as cancers, but the doctor replied that that you wouldn't get the intestinal cancer if you're asymptomatic.

Everything I've read and heard makes me think this doctor is completely mistaken, but I just wanted to make sure before I tell my dad to change doctors! It is so frusterating when people don't understand, especially if they're a doctor and should know about this stuff! So is there any truth to what he said or should we run as fast as possible in the other direction? I really want my family members to get tested but so far there doesn't seem to be much hope.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Your parents doctor is very ill informed and there are many here that will attest to that.

Jestgar Rising Star

I agree with MommaGoose, but there's another point to consider.

My parent's doctor wouldn't test them also because they are asymptomatic. After I thought about it for a while I realized that even if they tested positive the likelihood that they'd stick to the gluten-free diet was very minimal anyway, so it was a moot point.

They could always try gluten-free, or even gluten-lite, to see if it changes how they feel. It's possible they have symptoms that they don't realize are symptoms (I went almost my whole life not knowing that your tummy wasn't supposed to hurt after eating).

If the diet convinces them they need to be tested, they could either brow-beat the current doc, or start looking for a new one.

tarnalberry Community Regular

Look up the NIH consensus paper from the celiac disease conference last year. It specifically notes that damage is still done in asymptomatic celiacs.

mamabear Explorer
I was diagnosed about 4 months ago with celiac disease and was the first one in my family diagnosed so my parents were told to get tested also, even though they don't appear to have symptoms (although i know it's possible they still have it and are asymptomatic) . Both my mom and dad tried calling their doctors to see if insurance would pay, but they were told insurance wouldn't pay because it was just a "screening" since they didn't have symptoms. Then yesterday, my dad went for a physical and the doctor pretty much refused to test him, saying, and I quote, "if you're asymptomatic, then what difference does it make. There's no reason to stop eating gluten because there's no effect." My dad then inquired about the damage to the intestine and long term effects such as cancers, but the doctor replied that that you wouldn't get the intestinal cancer if you're asymptomatic.

Everything I've read and heard makes me think this doctor is completely mistaken, but I just wanted to make sure before I tell my dad to change doctors! It is so frusterating when people don't understand, especially if they're a doctor and should know about this stuff! So is there any truth to what he said or should we run as fast as possible in the other direction? I really want my family members to get tested but so far there doesn't seem to be much hope.

Yes, he is sadly mistaken. Asymptomatic celiac disease accounts for nearly 50% of new diagnoses according to recent studies. What you don't know CAN hurt you. I would suggest finding a celiac-competent doctor through your local celiac societies. First degree relatives have a 10-16% chance of being celiac.....so all your parents,siblings and any children should be tested at some point . It helps if a physician understands the related symptoms and conditions in order to prod the insurance companies to cover the tests.

jennysoul Newbie
I was diagnosed about 4 months ago with celiac disease and was the first one in my family diagnosed so my parents were told to get tested also, even though they don't appear to have symptoms (although i know it's possible they still have it and are asymptomatic) . Both my mom and dad tried calling their doctors to see if insurance would pay, but they were told insurance wouldn't pay because it was just a "screening" since they didn't have symptoms. Then yesterday, my dad went for a physical and the doctor pretty much refused to test him, saying, and I quote, "if you're asymptomatic, then what difference does it make. There's no reason to stop eating gluten because there's no effect." My dad then inquired about the damage to the intestine and long term effects such as cancers, but the doctor replied that that you wouldn't get the intestinal cancer if you're asymptomatic.

Everything I've read and heard makes me think this doctor is completely mistaken, but I just wanted to make sure before I tell my dad to change doctors! It is so frusterating when people don't understand, especially if they're a doctor and should know about this stuff! So is there any truth to what he said or should we run as fast as possible in the other direction? I really want my family members to get tested but so far there doesn't seem to be much hope.

jennysoul Newbie

Hi Emi, Im from Australia, i so hear what you're saying ive been gluten free for 2 years and have found it tough to get any DR hear that understands celiac enough to help me in anyway,

its realy hard to help youre own family when no one will listen to you, ive got atxia problems, i believe due to the years of undiagnosed celiacs, and its taken its toll on my mental health.

i'm so at wits end,

the medical proffession is so far behind in this matter here that i'm left to help myself, convincing them to do tests has been a nightmare to say the least, they say stupid stuff like OH but you'd have the runs not constipation if you had celiacs. i'm so distressed at the moment as i now see my daughter and other family members showing health problems, but no one will listen to me due to no confirnation of celiac. so i'm off for an MRI next week, to see what damage has been done to my brain,due to malabsorbtion of B12.

i hope you get some results soon for you and youre family. take care.

jenny


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



Celiac.com Sponsor (A8-M):



NoGluGirl Contributor
I was diagnosed about 4 months ago with celiac disease and was the first one in my family diagnosed so my parents were told to get tested also, even though they don't appear to have symptoms (although i know it's possible they still have it and are asymptomatic) . Both my mom and dad tried calling their doctors to see if insurance would pay, but they were told insurance wouldn't pay because it was just a "screening" since they didn't have symptoms. Then yesterday, my dad went for a physical and the doctor pretty much refused to test him, saying, and I quote, "if you're asymptomatic, then what difference does it make. There's no reason to stop eating gluten because there's no effect." My dad then inquired about the damage to the intestine and long term effects such as cancers, but the doctor replied that that you wouldn't get the intestinal cancer if you're asymptomatic.

Everything I've read and heard makes me think this doctor is completely mistaken, but I just wanted to make sure before I tell my dad to change doctors! It is so frusterating when people don't understand, especially if they're a doctor and should know about this stuff! So is there any truth to what he said or should we run as fast as possible in the other direction? I really want my family members to get tested but so far there doesn't seem to be much hope.

Dear Emi 220,

Tell your parents to ditch Dr. Dipstick. It is for their own good. This disease is serious. Just because the disease is latent and and not showing symptoms does not mean it is not causing damage. These geniuses we call doctors often have a God complex. They need to get with it. If they were the ones at risk, their attitude would change, I assure you.

Sincerely,

NoGluGirl

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.