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

Suspecting Celiac Disease


KLH36

Recommended Posts

KLH36 Newbie

I am 36 yes old and I have severe stomach problems, daily headaches, some mild joint pain,and what I think is psoriasis on my head and nose. My aunt has been tested and has Celiac's. I have diarrhea almost daily, bloating, horrible painful gas, nausea,and heartburn. Also, every few months I have severe abdominal pain lasting about an hr but I am curled in a ball for that hr. I take a lot of pepto. My headaches have been diagnosed as migraines but meds don't help. I have a history of anxiety and depression and right now I'm dealing w some slight memory loss or maybe just brain fog. How much is testing? I'm miserable most days but I'm not letting it affect my life. In need of advice.


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



Celiac.com Sponsor (A8-M):



KLH36 Newbie

I have also had an elevated platelet count for the past year and a half.

nvsmom Community Regular

I'm afraid I have no idea what testing costs, but I can tell you which tests to look into, which I really think you should - your symptoms are the same as mine were.  :(

 

Make sure you are eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, and 4-8 weeks prior to the biopsy.

 

The tests:

  • tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test, good at detecting early celiac disease
  • EMA IgA (endomysial antibody) - similar to the tTG IgA but tends to detect more advanced disease
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
  • endoscopic biopsy (6+ samples taken)
  • skin biopsy - if there is a dermatitis herpetiformis rash - taken from beside an active rash
  • DQ2 and or DQ8 genetic tests - these won't tell you if you have celiac disease, but will let you know if you are in the higher risk portion of the population

Good luck!

KLH36 Newbie

Thank you so much for the information. I suppose I should start eating bread more often for awhile.

nvsmom Community Regular

If you can stomach it, it will help make the tests more reliable.  Those blood tests can miss up to a quarter of all celiacs (the old AGA tests miss even more) so it is wise to make sure you are not gluten light before the test.  Good luck.

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. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

    2. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

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

    • Total Members
      132,856
    • Most Online (within 30 mins)
      7,748

    lyndats
    Newest Member
    lyndats
    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

    • lizzie42
      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
      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
      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
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.