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
      133,044
    • Most Online (within 30 mins)
      7,748
    Emj 86
    Newest Member
    Emj 86
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.