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

Another Uninformed Doctor

Marlene

By Marlene
in Doctors

Recommended Posts

Marlene Contributor
Marlene
Posted

So, my 11 year old niece has been having major stomach/ bowel issues ever since she had parasites last summer. She has been extremely lethargic, has stomach pains, and is so constipated that her parents have to give her laxatives just to get her to go (which they don't like doing - obviously). Someone at my sister-in-law's work mentioned Celiac to her so she called me and we talked about the whole gluten intolerance thing.

They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Anyway, I think they are going to put her back on the diet but they are the kind of parents who seem to want re-assurance from a medical professional that they are doing the right thing. That is understandable but I am just trying to encourage them to keep her on the diet since it is helping, no matter what the doctor says.

Do you think doctors will ever figure this out??

Marlene

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

Celiac.com Sponsor (A8-M):


Electra Enthusiast
Electra
Posted
So, my 11 year old niece has been having major stomach/ bowel issues ever since she had parasites last summer. She has been extremely lethargic, has stomach pains, and is so constipated that her parents have to give her laxatives just to get her to go (which they don't like doing - obviously). Someone at my sister-in-law's work mentioned Celiac to her so she called me and we talked about the whole gluten intolerance thing.

They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Anyway, I think they are going to put her back on the diet but they are the kind of parents who seem to want re-assurance from a medical professional that they are doing the right thing. That is understandable but I am just trying to encourage them to keep her on the diet since it is helping, no matter what the doctor says.

Do you think doctors will ever figure this out??

Marlene

Marlene,

Tell them to get a new GI doctor. If I heard an absurd statement like that about long hair, I would be out of there quicker then ever!! PLEASE, PLEASE encourage them to go to a new GI doctor especially if a diagnosis is that important to them!! Good Luck!!

Canadian Karen Community Regular
Canadian Karen
Posted

*sigh*......

Shaking my head in disbelief! :huh:

Creative-Soul Newbie
Creative-Soul
Posted

:blink:

I had to read that about three times before replying... I'm speechless...

Thank God your neice and her parents have you around as a voice of sanity! I hope they find a knowledgable doctor soon!!!

jerseyangel Proficient
jerseyangel
Posted

Long hair???? That's a new one! <_<:blink::huh:

I hope the next doctor they see is better informed--keep us posted.

chrissy Collaborator
chrissy
Posted

that is too funny!!------we see how doctors can have old info and think that all celiacs must have the runs and be wasting away, but long hair?????

hope they find a new doctor!!!

Phyllis28 Apprentice
Phyllis28
Posted

They need to find a new doctor. My hair was nearly waist length when I was diagnoised.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Find a new doctor, have her continue eating gluten until they run the full Celiac panel (AGA IgA, AGA IgG, total Serum IgA, EMA, ttG), and send this doctor some information about the NIH Campaign to increase awareness among doctors about Celiac, because he is a classic example of why this campaign is needed.

debmidge Rising Star
debmidge
Posted
They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Marlene

OMG! So that's how my 27year old husband got celiac! He had long hair to his mid back for years, even when I met him and then he decided to cut his hair and Whammo! he came down with celiac AFTER he had long hair! What a revelation! So the moral is that he should have never cut his hair!

Oh, I see now!

Is this doctor a real gastro or a real doctor for that matter?

I told my husband about this doctor and his first response was "Is that a joke?"

darlindeb25 Collaborator
darlindeb25
Posted

My son had a doctor look at him and say, "You do not need to be tested, you do not look like a celiac!" Do we look different? I was under the impression that we look the same as other people. Do we have antenna that none of us know about? Another son was told, "It's not necessary to test you for that now!" I finally get them to agree to be tested and an unknowlegable doctor tells them this crap!

I do think more doctors are getting it, yet some may never understand!

  • 2 weeks later...
tummyache Newbie
tummyache
Posted
Marlene,

Tell them to get a new GI doctor. If I heard an absurd statement like that about long hair, I would be out of there quicker then ever!! PLEASE, PLEASE encourage them to go to a new GI doctor especially if a diagnosis is that important to them!! Good Luck!!

She has LONG HAIR??? What does that have to with anything? Are all Celiac's bald? That makes no sense at all! Yes, definitely tell them to see another GI person. This one sounds like a total quack.

Archived

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

Go to topic listing

  • 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. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
    2. par18
      - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free...
    3. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    4. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748
    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.