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Mad Mother?


lynne1978

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lynne1978 Rookie

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?


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dandelionmom Enthusiast

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

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

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
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
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
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.


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home-based-mom Contributor

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.

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Juliebove Rising Star

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

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

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

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
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
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.

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