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

See My Dr. Tomorrow. What Tests Should Be Done?


jackay

Recommended Posts

jackay Enthusiast

Advice please. I see my doctor tomorrow and wonder if I should have the Celia panel of tests run.

This past summer I had a GI panel run of stool and saliva tests. A saliva test was run for Gliadin Ab, SIgA. The result was >100 U/ml with borderline 13-15 U/ml and Positive >15 U/ml. I thought these test results were from a stool sample and I just discovered it was a saliva sample. From the reading I've done I found out a saliva sample isn't accurate. (I read that a stool sample is accurate if it is positive but that a negative result could be false.)

Since August, I have tried to avoid gluten except for slipping for about four days in October. However, my doctor said nothing about hidden gluten and gluten contamination. My symptoms didn't get worse when I slipped, but I was feeling so miserable at the time that I don't think I would have noticed if they got worse. It has been just two weeks since I have tried eliminating all gluten from my diet and only two days since I have not used an old plastic cutting board, teflon cookware and washed my dishes and hands before eating.

Some days my symptoms are better but I have a long ways to go to being healthy. Still suffer from diarrhea, insomnia, anxiety, depression, headaches, muscle pain, hands falling asleep, loud pulse, mental fog, and difficulty concentrating.

Should I go insist my doctor run the Celiac panel of tests since I have tried to avoid gluten? I have paid my out of pocket medical expenses this year so with insurance it wouldn' cost me anything. If I wait and do a gluten challenge next year, which I really don't want to do, I will have to start over with my deductible and copay.


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



Celiac.com Sponsor (A8-M):



Jean'sBrainonGluten Newbie

This is really a judgment call. The key is you - will you believe it if you don't have a lab test confirming it? Will you believe it enough to stand firm on your gluten free diet when you have started to feel better? I didn't and it caused me a LOT of problems because I wasn't precise about cross contamination and occasionally just eating something because I hadn't planned and fed myself and got too hungry in a vulnerable place.

If you aren't sure then I would suggest eating a lot of wheat for a week or as long as you can stand it and trying to get a test right before the end of the year. It's a risk because if you have celiac you will get sick as a dog but that will give you confirmation and make it likely that the blood test will give a true result.

I'm tempted to say Merry Christmas but given what I'm advising that seems cynical - you know?

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

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

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

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Bob red mill gluten free oats

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

    • Total Members
      132,860
    • Most Online (within 30 mins)
      7,748

    MEK5
    Newest Member
    MEK5
    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
      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
      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?
×
×
  • 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.