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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,656
    • Most Online (within 30 mins)
      7,748
    Sandy Bromberg
    Newest Member
    Sandy Bromberg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      Medication

      By knitty kitty · Posted

      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
×
×
  • 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.