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

Mad Mother?

lynne1978

By lynne1978
in Doctors

Recommended Posts

lynne1978 Rookie
lynne1978
Posted

Here's a good one...

I am being tested at the moment, my son was taken off wheat as a baby due to vomiting, he now is back on wheat and is showing classic symptoms, black eyes and yellow skin after bread/cakes, stomach aches, vomiting, no attention, cant sit still, etc etc.

I took him to the Dr today, who told me he is on the 10th percentile for weight and height, so he is normal, inattention and intability to sit still is nothing to do with coeliacs, nor is bad breath, or irritability, and he doesnt look like a coeliac so he isnt......and even if I am dx as a coeliac it wouldnt affect him anyway as there wold only be a 1:10 chance he might have it. He even told me I had looked too much and should read anything about it as I would get it wrong and confuse myself and that I am just being paranoid!!!!!

What do people make of that?

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

Celiac.com Sponsor (A8-M):


dandelionmom Enthusiast
dandelionmom
Posted

Sounds like you need a new doctor to me. It is my understanding that all first degree relatives of a person with celiac disease need to be tested. It is also not acceptable to speak to a patient or an underaged patient's mother like that, in my opinion.

Breila Explorer
Breila
Posted

Yup, I was told I was paranoid when I told my DS's ped that I thought he had classic celiac symptoms when he was 4 because he was on the growth charts. :rolleyes: Trust your mother's instincts, it took us 3 years to get the diagnosis because I doubted myself, don't do that.

Ursa Major Collaborator
Ursa Major
Posted

Lynne, your doctor is an arrogant, know-it-all idiot. Your son sure sounds like he has celiac disease to me!

Insist that he be tested, and if your doctor won't do it, switch doctors. But regardless of the test results, your son needs to be on a gluten-free diet, probably no dairy, either (or soy). He sounds like he is already sicker than you realize.

Darn210 Enthusiast
Darn210
Posted
Here's a good one...

I am being tested at the moment, my son was taken off wheat as a baby due to vomiting, he now is back on wheat and is showing classic symptoms, black eyes and yellow skin after bread/cakes, stomach aches, vomiting, no attention, cant sit still, etc etc.

I took him to the Dr today, who told me he is on the 10th percentile for weight and height, so he is normal, inattention and intability to sit still is nothing to do with coeliacs, nor is bad breath, or irritability, and he doesnt look like a coeliac so he isnt......and even if I am dx as a coeliac it wouldnt affect him anyway as there wold only be a 1:10 chance he might have it. He even told me I had looked too much and should read anything about it as I would get it wrong and confuse myself and that I am just being paranoid!!!!!

What do people make of that?

My daughter was higher than that on the growth charts. I was also told by the allergist (after her positive diagnosis by the GI) that we should challenge her because she didn't look like a celiac (Oh Brother!!!). I vote for a new doctor!! I assume the doctor who is testing you is not the same doctor . . . if so, I would ask your doctor for a test for your son.

lynne1978 Rookie
lynne1978
Posted
  • Author
I assume the doctor who is testing you is not the same doctor . . . if so, I would ask your doctor for a test for your son.

No its not the same doctor who referred me, although I have had to fight to get any tests for myself anyway - the docs seem to be too busy and think ''well, IBS can be extremely painful'' is going to solve everything!!! I have another appt for him for thursday and hope to get a blood test done then. It makes you just want to bang your head against a brick wall! why arent they taught this at med school? i dont understand how they can know so little about such a serious problem.

Ursa Major Collaborator
Ursa Major
Posted
It makes you just want to bang your head against a brick wall! why arent they taught this at med school? i dont understand how they can know so little about such a serious problem.

One good explanation is, that the med schools are in the pockets of the big pharmaceutical companies. And the pharmaceutical companies want you to use IBS medications, rather than changing your diet, which won't make them any money. So, they make sure doctors are only taught how to treat symptoms, rather than finding the cause of the 'IBS'.

Big pharma couldn't care less about healing people and helping, they only care about money. Even if their 'medicine' will kill people.

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

Celiac.com Sponsor (A8-M):


home-based-mom Contributor
home-based-mom
Posted

That doctor is grossly under-informed and too arrogant to realize it. Give him links to and/or print out info from respected scientific websites. Let him know that you are trusting your maternal instincts when it comes to the best interests of your child, and you would appreciate it if he treated you with the dignity and respect you are due as an adult, rather than as an ignorant idiot.

Start exploring here:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Juliebove Rising Star
Juliebove
Posted

It could also be a gluten allergy. My daughter has that. The school thought she had ADHD, but after removing the gluten and other allergies from her diet it was like I got a different girl!

mommida Enthusiast
mommida
Posted

The others have all ready posted about the obvious errors that doctor has made regarding Celiac/ intolerance and or wheat or gluten allergy.

The gall of a doctor who looks at a patient (for what a whole 15 minutes?) to disregard what the parent, constant caregiver, has to say about symptoms is absurd! You may not have a medical degree, BUT YOU KNOW YOUR CHILD BETTER THAN THE DOCTOR.

Get a new doctor that is better informed ~ because a doctor this ignorant IS POTENTIALLY DANGEROUS. After your child's diagnoses, if you feel you need to send a copy of the diagnoses record to show what a diagnosed Celiac, gluten intolerant, or wheat/gluten allergic child looks like. (To prove there is no "look" to a person suffering from these disorders.) That's your decision.

You Go Girl!

Dyan Rookie
Dyan
Posted

Having a doctor misDX is one thing, okay all doctors make mistakes, but to be so flat out rude to you is not acceptable. EVERYONE should keep themselves informed of everything, especially of your health.

AliB Enthusiast
AliB
Posted

University of Chicago Celiac Center states that 35% of Americans carry the Celiac gene. That's 1 in 3. Well, that's at least you and your son catered for............

If you are not happy demand a gene panel test - and a new doctor............

lynne1978 Rookie
lynne1978
Posted
  • Author
University of Chicago Celiac Center states that 35% of Americans carry the Celiac gene. That's 1 in 3. Well, that's at least you and your son catered for............

If you are not happy demand a gene panel test - and a new doctor............

LOL thanks! My doctor also actually told me there was no test that could determine a gene for coeliacs... when I told him I had read about it he then said oh well if there was it'll be too expensive to test anyway...!!

Ursa Major Collaborator
Ursa Major
Posted
LOL thanks! My doctor also actually told me there was no test that could determine a gene for coeliacs... when I told him I had read about it he then said oh well if there was it'll be too expensive to test anyway...!!

Your doctor obviously doesn't know what he is talking about. If he won't order the gene test, you can get it done through other labs, including Enterolab. I believe that just the gene test is around $130.00.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,018
    • Most Online (within 30 mins)
      7,748
    Laney71
    Newest Member
    Laney71
    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

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.