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

Dr Is Suggesting Invasive Tests-----need Advice


dinali63

Recommended Posts

Fiddle-Faddle Community Regular
She said she wanted to rule out colitis, IBD, IBS, crohns.

I'm sorry, if she says she wants to rule out IBS, I already don't trust her judgment.

IBS can't be ruled out, because it is neither a disease nor an accurate diagnosis. EVER.

It is a syndrome, a collection of symptoms for which the doctors say they don't know the cause--but it is only the last year or so that SOME doctors are finally realizing that IBS is most likely celiac/gluten intolerance , as until this last year, they NEVER ran a celiac panel for patients "diagnosed" with IBS. It's amazing that they never did, because if you check the symptom list for IBS, you realize that you are looking at the symptom list for celiac.

However, the pharmaceutical industry has come out with several drugs aimed at "IBS," some of which do mask some of the symptoms, but NONE of them address the cause of the symptoms--which is usually dietary, but the dietary factor is often caused by something else, like Lyme, candida, mercury toxicity, etc.

The mercury toxicity is most often caused by dental amalgams and mercury that was in almost every children's vaccine until very recently, and is still in the flu shot and possibly the chicken pox shot--your doctor will likely tell you that there is too little mercury to be a problem, but ask any chemist and they'll tell you that the doctor is wrong. The doctors are literally trained in med school by the pharmaceutical industry.


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



Celiac.com Sponsor (A8-M):



Michi8 Contributor
They don't give you the form when you meet with the surgeon beforehand (which is something I had to insist on, and had to pay a separate office visit fee for it) They give it to you when you show up at the hospital for surgery at 6 am, with your child in your arms, and you're all stressed out already because they're going to crack open your child's chest. They give you so many forms to sign, and it's impossible to understand all the forms you are signing unless you have a lawyer present! Sure, you try to read them all, but it's not realistic to expect that you will understand them all, especially when the risks are different from the ones explained by the doctor.

Are you expected to believe that the pre-printed risks are more appropriate to your child's situation that those explained by the surgeon?

In reality, those pre-printed risks WERE more accurate than what the doctor said. But how is anybody expected to know this?

Believe me, I'm not happy with how patients are treated, and certainly not happy that such vital information is kept from patients, or seriously downplayed! (I don't want to end up going into my rant about doctors corecing women into choosing cesarean sections without full disclosure of the risks.)

All surgery comes with risk of infection, adverse reactions, death, etc. I know that, and know what I'm signing, but I also read, read, read about health stuff and thoroughly know about any procedure that I (or my family) will be going through. The public at large is not fully informed, does not necessarily understand medical procedures, and may make decisions based on fear and/or pressure without knowing risks...or knowing that they have the right to hear about all the risks before they sign on the dotted line. Finally, they also have the right to say no.

That's why I mention it's in the form...legally that information has to be there...it's the way the staff and hospital have to protect themselves. Patients are supposed to have fully informed consent...in reality that doesn't happen that often.

Michelle

Fiddle-Faddle Community Regular
Our doctor/gastroentomologist assured me that there would be no ill side effects from the biopsy etc and that Carter wouldn't feel any pain. He said the worse case scenario would be that Carter would have a mild sore throat from being intabated.

I just get really upset when I hear so often cases like this, where the doctor is either lying or mistaken. No, wait, the doctor would have to be lying--he MUST know that a certain percentage (even if it's less than 1 percent) of children have serious to fatal adverse reactions to the anesthesia. 1/2-1 percent of thousands of pediatric endoscopies per year still ends up being somebody's child...

Collinsmom Rookie

I've never had experiences with bad doctors, or bad diagnosis, or whatever. Including my sons expanding list of dr's, I have trusted all their opionions. I have been lucky in that my docs work with me to help rule out various issues my ds has had, and they also listen to my thoughts.

This is the process that led us to ds's gi doc that suggested an endoscopy to confirm celiac diagnosis. Previous blood work strongly indicated celiac, but doc suggested endoscopy to confirm. It was completely our choice, no preassure-nothing. After reading a lot of other peoples opionion I really wasn't sure if I should go through with it, but ultimately I did. And I'm glad. Doc looked at a lot of things, including testing for lactose intolerence (given his other multiple food allergies). While we haven't received the official biopsy results yet, we got a call last week with some results of other tests. They found (big long medical term) something in terms of cells forming in his esophegus, that his esophegus was swelling, as well as the entry way to his small intestine. He felt it was related to is food allergies and not celiac, and felt it warrents treatment. We would not have found that out if we had not gone through with the procedure.

Obviously this is my opinion that was influenced by my positive past experiences. I still think going through an official medical diagnosis has some merit. Especially if its not just about celiac, and using a diet only approach may not be the entire answer.

Guest andie

I am afraid I have to interject here for just a moment.

Signing the papers for consent in reality has nothing to do with the actual consent.

When you show up in a hospital with a child in your arms ready for surgery it is called "implied consent". Some hospitals are doing away with consent forms all together.

Informed consent has an acceptable number or percentage of risks to be discussed. If indeed the Dr. went through ALL the risks, you would never have time for the actual surgery.

Thanx

Andie

Believe me, I'm not happy with how patients are treated, and certainly not happy that such vital information is kept from patients, or seriously downplayed! (I don't want to end up going into my rant about doctors corecing women into choosing cesarean sections without full disclosure of the risks.)

All surgery comes with risk of infection, adverse reactions, death, etc. I know that, and know what I'm signing, but I also read, read, read about health stuff and thoroughly know about any procedure that I (or my family) will be going through. The public at large is not fully informed, does not necessarily understand medical procedures, and may make decisions based on fear and/or pressure without knowing risks...or knowing that they have the right to hear about all the risks before they sign on the dotted line. Finally, they also have the right to say no.

That's why I mention it's in the form...legally that information has to be there...it's the way the staff and hospital have to protect themselves. Patients are supposed to have fully informed consent...in reality that doesn't happen that often.

Michelle

Michi8 Contributor
I am afraid I have to interject here for just a moment.

Signing the papers for consent in reality has nothing to do with the actual consent.

When you show up in a hospital with a child in your arms ready for surgery it is called "implied consent". Some hospitals are doing away with consent forms all together.

Informed consent has an acceptable number or percentage of risks to be discussed. If indeed the Dr. went through ALL the risks, you would never have time for the actual surgery.

Thanx

Andie

I have never had a surgery or procedure without signing a consent form (and, yes, I read them.) If hospitals didn't have you sign, they'd be putting themselves at risk of malpractice. It is irresponsible to assume that a patient has fully consented without full disclosure. That is a huge issue for something like cesarean section (I use this example because it's has a huge impact on the norms of birth, and is a big issue to me,) and has played a big part in the sky rocketing rate of surgical births. Far too many women are choosing this procedure in the absence of medical need and without full understanding of the risks involved. As mentioned by a previous poster, if patients really understood the risks, they wouldn't choose to have the surgery.

Michelle

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,197
    • Most Online (within 30 mins)
      7,748

    Crazygeminimom1981
    Newest Member
    Crazygeminimom1981
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Lindquist
      Hi im from northern europe are blood type 0+ have celiac with code K900 on the paper from doctor, have low vitamin D and b12 and folate, zinc, manganese and high copper it say in test. The best food i have eaten for now is LCHF, i tried paleo but i was missing the dairy. And i love the cream in sauces. LCHF is good choice there is no grains in the dishes. It's completly gluten free lifestyle i say. Because i feel good to eat it.
    • WednesdayAddams13
      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
×
×
  • Create New...