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

Could We Be Undiagnosed?

robynrn

Recommended Posts

robynrn Newbie
robynrn
Posted

Hi I am new to this web site and I am looking for answers. I am borderline iron-defient anemic, and my daughter has iron deficiency anemia, and no one seems to know why. We do not have the typical bowel problems most people with celiac disease have, but we both do have constipation, bloating and gas. My daughter is very young and she already has 7 cavities, she is very irritable, and we are both very tired people. I am an RN, but have not encountered anyone who (knowingly) has celiac disease. I just want to know if I should put my daughter through all kinds of testing to figure out if she does have celiac disease, or if I should be tested first, and if I have it get her tested. I would really like to know your opinions. Thank you.

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted
Hi I am new to this web site and I am looking for answers. I am borderline iron-defient anemic, and my daughter has iron deficiency anemia, and no one seems to know why. We do not have the typical bowel problems most people with celiac disease have, but we both do have constipation, bloating and gas. My daughter is very young and she already has 7 cavities, she is very irritable, and we are both very tired people. I am an RN, but have not encountered anyone who (knowingly) has celiac disease. I just want to know if I should put my daughter through all kinds of testing to figure out if she does have celiac disease, or if I should be tested first, and if I have it get her tested. I would really like to know your opinions. Thank you.

Yes. Get teh blood test, and make them do the full Celiac Panel. It only take like 5 mins of your time. Do not do the diet before the test as it will impact the results.

Anemia was my first sympton, and for a while my only one.

Guest Viola
Guest Viola
Posted

You and your daughter should really do the full blood panel. Symtoms are really varied among all of us, and only about 1/3 have the big D, a lot more are constipated, or have no bowel problems at all, just vitamin and mineral defiencies. And do the blood work before you try a gluten free diet, as my cute little friend said :D

That picture makes me smile :lol:

mart Contributor
mart
Posted

Hi Robynrn. My son was also very irritable and had many cavities, despite the fact that we took such excellent care of his teeth. He also had lots of ear infections. This went on for the first six years of his life. He didn't exhibit any signs of celiac until he was 7, when his tummy problems started. He didn't grow from ages 4 - 7, and his doctors didn't find this to be a problem. I guess I'm should be grateful he started exhibiting stomach problems, otherwise, he still might be undiagnosed. So just because someone doesn't have all the symptoms doesn't mean they shouldn't bother testing. Also, most celiacs have few or no symptoms (which is why there are so many undiagnosed). You and your daughter should have the test ASAP. Remember that you must not start the gluten-free diet before your tests, otherwise the test may come back positive. Don't wait, and good luck!

Sorry, I meant to say the test might come back NEGATIVE if you start the diet before the test!

mommida Enthusiast
mommida
Posted

I would start by contacting your local Celiac support group for a doctor in your area familar with celiac disease. Get the blood test, follow the specialists advice, no matter how that goes you can always try the gluten free diet. There are just too many people doing better on a gluten free diet, than are actually diagnosed.

L.

Nancym Enthusiast
Nancym
Posted

Get the blood tests but if they're negative, don't stop there. Try a couple of weeks on a strict gluten free diet and see how you feel. The blood tests don't pick up everyone.

robynrn Newbie
robynrn
Posted
  • Author
I would start by contacting your local Celiac support group for a doctor in your area familar with celiac disease. Get the blood test, follow the specialists advice, no matter how that goes you can always try the gluten free diet. There are just too many people doing better on a gluten free diet, than are actually diagnosed.

L.

Thank you all for your advice, I guess part of me is in denial because I love pasta, pizza and bread etc, etc. But if it makes us feel better than it is worth it, I will keep you posted on how opur tests come out!

Robyn

p.s. don't worry I will continue to eat gluten until I get the tests done!

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

Celiac.com Sponsor (A8-M):


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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,866
    • Most Online (within 30 mins)
      7,748
    Jan Exum
    Newest Member
    Jan Exum
    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

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.