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

Getting Diagnosed


ErraticBinxie

Recommended Posts

ErraticBinxie Explorer

This is the first celiac forum I have been a part of and I am so excited that I have found it. My name is Lexi, I'm 17 and I have been gluten-free for 9 years.

I have a question that is diagnosis related...

My mom was diagnosed with celiac when I was five and I started showing symptoms years later when I was eight and I started on the diet. I never was diagnosed by a doctor so when I need medical proof that I have celiac I can never get it. I asked for a blood test this year so I could finally be diagnosed. The lab said they could not detect gluten sensitivity unless I had been on a gluten diet for a period of time. Of course I can't just go off my diet. So I want to know if there are any ways to diagnose that would accomadate my situation now.

And one more thing...I have never met anyone my age that has celiac. So someone please contact me....

aim: ErraticBinxie

E-mail: Lexietualatin@juno.com


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Having been off gluten for a number of years, there is no test that will be able to tell you if you're celiac. The tests all check for gluten antibodies, and if you're not ingesting gluten, you won't produce antibodies to it. You could get the gene test. It won't tell you if you have celiac disease, but it will tell you if you have one of the two genes that leads to about 95% of all cases.

ErraticBinxie Explorer

Thanks for the info. That helps a lot!

-Lexi

stargirl Apprentice

I'm a clinical celiac. I went on the diet without a positive blood test or biopsy but my gastroenterologist supports me. He says that a clinical diagnosis is fine in this case, since celiac has such unusual symptoms. Why do you have to have a medical test to prove you're a celiac? I'm also 17 and have never met a celiac my age, so I would love to talk to you online sometime. My AIM is funnylaces. Hope to talk to you soon.

MySuicidalTurtle Enthusiast

Just a question. . .why would you need medical proof that you're a celiac?

celiac3270 Collaborator

Seems like a lot of 17-year-olds on the board :D

stargirl Apprentice

Are you trying to say something celiac3270? :P


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Say what? I'm not, but a LOT of people, particularly under the "17 with celiac" thread, are seventeen. :D

stargirl Apprentice

Surprisingly enough that is true, now everyone just needs to move to California so we can hang out together. Have a junk food night :D

  • 4 weeks later...
ErraticBinxie Explorer

The reason that I want to have medical proof that I have celiac disease is because of college. There are scholarships available for people that have celiac disease. Don't ask me why but they just do. And couldn't we all use a little money for college?

stargirl Apprentice

The only thing I would say to that is to look around and see if you can find a gastrointerologist who will give you a positive diagnosis without making you go on gluten and be biopsied. I found one who will legally state that I am a celiac even without what would be considered "conclusive results." Just an idea. Where have you found a scholarship for celiac disease? I'm in the market for scholarships but I haven't run across any for people with celiac disease. Thanks

Guest ~wAvE WeT sAnD~

Lexi-

They have scholarships? I should have gotten celiac disease three years ago!!! :D

Good Luck in school!

byuiemily Newbie

I didn't know they had scholarships for people with Celiac...boy could i use something like that! How did you find out about them?

ErraticBinxie Explorer

I don't know specifically where you can find scholarships but I think you will be able to find them online.

Archived

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

  • 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. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Blood Test for Celiac wheat type matters?

    2. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Blood Test for Celiac wheat type matters?

    3. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Blood Test for Celiac wheat type matters?

    4. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,129
    • Most Online (within 30 mins)
      7,748

    PorkchopKate
    Newest Member
    PorkchopKate
    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

    • Wheatwacked
      trents:  Why some can tolerate european bread but not american bread.     I take 600 mcg a day.  Right in the middle of the safe range.   Groups at Risk of Iodine Inadequacy Though though the NIH does not specifically list Celiac Disease in this group, they state: "Iodide is quickly and almost completely absorbed in the stomach and duodenum. Iodate is reduced in the gastrointestinal tract and absorbed as iodide [2,5]."  That would certainly include malabsorption of Iodine due to Celiac Disease with resultant Iodine Deficiency. Vegans and people who eat few or no dairy products, seafood, and eggs People who do not use iodized salt Pregnant women People with marginal iodine status who eat foods containing goitrogens Deficiencies of iron and/or vitamin A may also be goitrogenic [51] https://ods.od.nih.gov/factsheets/Iodine-HealthProfessiona   1  
    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
×
×
  • 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.