Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New diagnosis


Ffergie

Recommended Posts

Ffergie Newbie

Hello all.  With this new diagnosis, I am madly searching for information and found your group.  Let me bore you with my story: my sister has recently been diagnosed with Celiac and, given symptoms that I have had for many, many years, she has been after me to be tested for Celiac.  I finally gave in and requested to have blood tests done. Today the results of my TTG IGA came back as positive.  When I asked what my reading was, I was told that normal is <16 and mine is 35.  I am now trying to make sense of this news in the hopes that the symptoms, cause heretofore unknown, will leave me.  If I understand correctly, I have no choice but going gluten-free; which I consider a fair trade for better health.  I am somewhat overwhelmed by what my next steps should be, endoscope or no endoscope, dietary consideration and any other options.  I will be reading through the various forum topics for clarity and guidance.


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



Celiac.com Sponsor (A8-M):



DevilGluten Apprentice

Hi Fergie.  New here too.  I think the endoscopy is the more reliable test.  They'll take a biopsy and that will confirm what the blood test shows.  I am in the opposite boat... last year I had a blood test that showed negative but my recent endoscopy showed Celiac.  I've been furiously researching too.  Gluten-free seems to be just about the only treatment.  Not sure if there are any drugs for it or anything.  Haven't followed up with my GI doc until I get my next round of blood tests done.

It's gotta be pretty helpful to have a sister with the same condition though.  Lean on her for advice, recipes, and stuff like that I would say.  Maybe she can help you avoid some pitfalls us newbies would normally fall into.

squirmingitch Veteran

Gosh I'm so sorry no one has replied to you guys.  Ffergie, You need to keep eating gluten every single day until an endoscopy with biopsies is finished. Also weren't there other blood tests in the panel they did on you? You only mention the TTG IgA. If that's all they did, they may want to do more serum tests. The gold standard in diagnosis is positive bloods along with positive biopsy. I doubt you will get a diagnosis any other way.

You guys both need to read the Newbie 101 which is pinned at the top of the threads in the Coping section.

Not eating gluten is the ONLY treatment for this disease. There are no pills or drugs for it. This is serious & you need to take it very seriously -- no cheating and be very strict on the diet, be very careful not to get cross contaminated. Again, read the Newbie 101 as that will explain a whole lot that I am talking about & how to keep yourselves safe.

Ffergie Newbie

Thanks for the reply, squirmingitch.  Not sure what/ if other tests were done other than TTG IgA but I will have to check.  In the past 2 weeks I have been eating gluten-free and have felt great!  No headaches and I seemed to have a new "brain clarity", no fog.  I have been reading labels closely but last night, I had a chocolate bar and didn't read the label.  This morning, my old headache is back and I feel like crap!!  When I read the label, I see wheat flour; coincidence, I don't think so.  We will see what happens in the next couple of days.  If there is even a remote chance that gluten is responsible for my past 40 years of headaches and numerous other symptoms, there is no way that I will go back on gluten in order to have the biopsy, I will base my eating habits on the TTG IgA.  The past two weeks or so of symptom-free life has given me a new appreciation of what "feeling good" means.  I have started to read the Newbie 101.  Thanks

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...