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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    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

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.