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

Daughter To See A Pediatric Endo For Thyroid. Any Advice?

T.H.

By T.H.
in Related Issues & Disorders

Recommended Posts

T.H. Community Regular
T.H.
Posted

My 12 year old had her thyroid tested - my request - and some of the results have come back abnormal, in the direction of hypothyroidism rather than hyper-. She was tested for T3 and T4 but not free thyroxine, if I remember right.

So, now we have to take her to see a pediatric endocrinologist. We have both hypothyroidism and Hashimoto's disease in the family, so I'm quietly freaking out over what may be causing the problem.

For anyone who has thyroid issues, especially Hashimoto's: Any advice? Tests that I should make sure are done, or tests that are pretty useless? Any key phrases from a doctor that are a good 'ignorant doctor' alert? Any other thoughts on what I should pay attention to?

After going through so much crap with Celiac Disease, just a small bit of research on thyroid issues makes it seem like it's in a similar situation: rife with medical professionals ignorant about the specifics of thyroid problems, and lots of research still to be done before we know everything. Does that sound right? Amy I just coming across the wrong sorts of posts, or does this seem like what other people are running into as well?

...sorry for the kind of stuttery post here. Really, I'm just so upset for my kid, you know? She's just been diagnosed with even MORE new allergies last week, after celiac disease plus other food issues already, and some weird stomach thing now that is sending us to a pediatric gastro, as well.

Just sometimes feels like life won't cut my baby a break. :(

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

Celiac.com Sponsor (A8-M):


SarahJimMarcy Apprentice
SarahJimMarcy
Posted

I hear you. It can feel like the domino effect. You're a good Mom for getting all these tests done and trying to find more answers.

At a clinic I was working at, a Mom and her 7 year old daughter were diagnosed with celiac and the Mom refuses to go gluten free.

We're in the thick of it, too. We just found a pediatrician who has celiac and have an appointment to see her. Progress.

Just make sure that you ask each doctor all 100 questions you have for them and if you don't get answers, ask them who they would refer you to. Ask about all options so you can make a decision. I also check every book out of the library regarding a topic. So if anyone went to our library right now to get info on celiac, they'd be out of luck. I got all the cookbooks too! To find a new pediatrician who can actually understand celiac, I posted on our Twin Cities ROCK (Raising Our Celiac Kids) Facebook page. I got replies within 10 minutes. Keep asking till you find the right answer or the right doctor.

Regarding thyroid, I asked about that and someone on this forum said to be sure the test the ferritin. I haven't done it yet, but thought I would pass that along. You could also use the search and see what other threads there are.

I hope you little one starts to feel better soon. I understand that frantic feeling but look to progress.

beachbirdie Contributor
beachbirdie
Posted

My 12 year old had her thyroid tested - my request - and some of the results have come back abnormal, in the direction of hypothyroidism rather than hyper-. She was tested for T3 and T4 but not free thyroxine, if I remember right.

For anyone who has thyroid issues, especially Hashimoto's: Any advice? Tests that I should make sure are done, or tests that are pretty useless? Any key phrases from a doctor that are a good 'ignorant doctor' alert? Any other thoughts on what I should pay attention to?

After going through so much crap with Celiac Disease, just a small bit of research on thyroid issues makes it seem like it's in a similar situation: rife with medical professionals ignorant about the specifics of thyroid problems, and lots of research still to be done before we know everything. Does that sound right?

Just sometimes feels like life won't cut my baby a break. :(

You are right, thyroid issues are as challenging to deal with as celiac issues. A thyroid patient does well to get very educated on their condition. I have Hashimoto's, it wasn't easy to get diagnosed.

There is some connection between celiac and thyroid, so it's not surprising a thyroid issue might have come up for your daughter. I would make sure to get her antibodies tested; the primary ones for Hashimoto's are TgAb (thyroglobulin antibodies), and anti-TPO (anti-thyroid peroxidase), and also the levels of free thyroid hormone. Don't let them diagnose on TSH alone and if your daughter ends up on thyroid meds, don't let them adjust meds on TSH alone. TSH is a pituitary hormone, the job of which is to prompt the thyroid to make more hormone.

It might be good to get vitamin levels checked (D, B12, Iron) especially if your daughter is having symptoms.

Be sure to get copies of all lab results and keep them in a file. It is a lot easier for people to help if you can post lab values and ranges.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.