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

Other Steps To Get A Diagnosis?


londonamour

Recommended Posts

londonamour Newbie

Hello all,

 

I am in the processing of preparing my house to swap over to gluten-free (buying new cookware, eating up all the gluten food, etc.) and will be making the plunge into gluten-free-only in the coming weeks. Before I do that, I would like to have a confirmed diagnosis for either Celiac disease or non-celiac disease gluten sensitivity.

 

I had a blood test done on December 31 by my GP that came back negative. I had an endoscopy done by a GI that did a biopsy that also came back as negative. My GP's office has only dealt with patients who had a mild-sensitivity to gluten. My GI is not one listed on the celiac.org website.

 

My mother has confirmed Celiac disease. She carries a gene for Celiac as well as a gene for non-celiac disease gluten sensitivity. My sister has the same Celiac disease gene as my mom but a different gluten sensitivity gene and also is pretty sure she has DH (working on getting that diagnosed too). My father passed away 16 years ago, long before any of us had heard of Celiac, so we don't know if he carried another gluten sensitivity gene or a gene for celiac disease or anything else at all.

 

I have not had genetic testing done due to cost.

 

Earlier this month, I was diagnosed with endometriosis after an exploratory laparotomy. Once the 10" mass in my lower abdomen was removed, a lot of my GI issues (diarrhea, running to the bathroom immediately after eating, etc.) cleared up. However, we had Hardees for breakfast yesterday and I had some pretty intense abdominal pain shortly after. I've decided to go gluten-free for the endo because so many people with endo report a decrease in the intensity of endo symptoms. I'm also minimizing red meat, sodas, and processed foods for the same reason. (Hardees was just because we were on a time crunch to run errands first thing in the morning and we don't really have foods on hand that we can just grab and go.)

 
I have the foggy brain, abdominal pain, bloating, headaches, chronic fatigue, joint pain...some of which can be attributed to other medical issues I have (endometriosis, cervical spine problems).

 

I do not want to go through living gluten-free for a period of time and then having to go back on a gluten diet to get a diagnosis in the future. What else can I do to get a confirmed diagnosis on file in case it's needed in the future (work accomodations, etc.)?


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Dr Fasano, a leading researcher of celiac disease, states that there should be 4 out the following 5 criteria met to get a celiac disease disgnosis:

  1. Celiac symptoms (there are over 300)
  2. positive blood tests: tissue transglutaminase (tTG IgA, tTG IgG), deminated gliadin peptides (DGP IgA and DGP IgG), endomysial antibodies (EMA IgA), total serum immunoglobulin A control test (IgA), and maybe the older and less reliable anti-gliadin antibodies (AGA IgA and AGA IgG).  You must be eating gluten in the 2-3 months prior to testing so don't go gluten-free if you want more tests.
  3. positive endoscopic biopsy (or skin biopsy - I added that). You must eat gluten in the 2-4 weeks prior to the procedure.
  4. positive genetic DQ2 or DQ8 (I've never heard of a gene for non-celiac gluten sensitivity)
  5. positive response to the gluten-free diet

I personally think that having #1, 5 and either 2 or 3 is fine for a diagnosis.  I personally just had a couple of positive blood tests but it was definitely celiac disease.  

 

Anyway, those are your only options for a celiac diagnosis.  I would skip the genetic tests if I were you because they just tell you if you are in the 30% of the population which has the DQ2 and 8 genes that most celiacs have; it will not tell you if you have celiac disease, just if you have a 1 in 30 chance of getting it. A very small minority of celiacs have negative tests anyways.

 

There are no tests for non-celiac gluten sensitivity (NCGS) except a positive response to the gluten-free diet.  If your celiac disease tests are all negative, and you feel better gluten-free, THAT is a diagnosis right there.

 

Best wishes in whatever you decide to do.  And welcome to the board.  :)

bartfull Rising Star

I never heard of a gene for non-celiac gluten sensitivity. If possible could you check with your Mom and sister to find out what that is?

kareng Grand Master

I never heard of a gene for non-celiac gluten sensitivity. If possible could you check with your Mom and sister to find out what that is?

I agree. It seems that NCGI has many different reasons for it. Some, like a messed up gut - good bacteria to bad ratio, may not even be genetic. Until they figure out if NCGI is even its own separate and distinct disease, it would be hard to have discovered genes for it.

Open Original Shared Link

Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,860
    • Most Online (within 30 mins)
      7,748

    Chastity Lynn
    Newest Member
    Chastity Lynn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ehb
      @RMJ what is the DPG test? I think my doctor never had me do that 
    • ehb
      Thank you @Scott Adams and @trents this is very helpful, and I think I have some solid ideas to bring to my doctor (corticosteroids, testing for chron’s, increasingly strict gluten-free diet)  @RMJ thank you this is definitely reassuring as well, I’m feeling frustrated and hopeless because I have gone through a similar progression of increasing strictness, and am now at a level similar to what you describe, but have not seen any changes in my blood results. I am now thinking to cut out processed foods altogether maybe with the help of a dietician? I’m also worried about cross contamination from the tables or microwave at my work (there is often free pizza and such sitting). It just feels so restrictive to not see or feel any results 
    • knitty kitty
      Welcome to the Tribe!   Take the Celiac diagnosis and run with it! P.S.  Yes, adopting a gluten free diet is a big mental adjustment.  Many go through the five stages of grief.  Many are relieved to have a definitive diagnosis instead of being a walking medical mystery.    The forum here can help with lots of articles and years of experience to get you started on your Celiac journey.  Best wishes!
    • SMK7
      This was the advice from the GI physician:  "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of >95%, which you tested negative for). Your duodenal biopsies were normal; though in mild cases of celiac disease, affected areas can be patchy. While about 90% of individuals with celiac disease carry the HLA-DQ2 allele, many people in the general population also carry this allele without developing celiac disease.  In the context of some of your symptoms of GI upset, it's possible that you may have either irritable bowel syndrome, gluten intolerance, or a very mild case of celiac disease. As we discussed, sometimes we can attempt a high gluten diet for 6-12 weeks with a repeat EGD and biopsies. Or, you can treat this as if you had celiac disease by being gluten free and see if it helps with some of your other GI symptoms. We decided to take the second approach. In patients with celiac disease, we do monitor vitamin levels every year. We would also get a DXA scan to screen for osteoporosis. I have ordered these studies for this year; subsequent checks can be done via your primary care doctor's office."
    • SMK7
      Thanks, yes I have one of the celiac disease genes.
×
×
  • Create New...