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

Accuracy Of Testing, Symptoms, And Gene Testing?

elliemay32

Recommended Posts

elliemay32 Newbie
elliemay32
Posted

Hi, I'm new here, and I am hoping someone might have some advice/info that might help me out. Here is some history: I was diagnosed with GERD as a 24 year old (all the symptoms came on kind of suddenly), no meds helped, so they did a surgery to fix it. Sort of improved for a year or so, then symptoms came back. Also diagnosed as IBS (which I think just means, we don't know what is causing your issues), after a myriad of testing etc. I have had 2 tests for Celiac's, 1 inconclusive, 1 negative. I had also tried gluten free, and didn't really feel any improvement (only did this for about 1-2 weeks since testing didn't validate it). Both tests were before having my son. Now, after having him, things are on the rise again. Most notable are the horrible stomach cramps/pain either right after eating, or within 1 hour, and diarrehea. ( I also am hypothyroid, very low adrenal, vitamin D def., and low progesterone, have been anemic, but not sure if I am now) I decided to cut out all breads, etc. I still ate rice and corn products, to see if my symptoms improved, and it seemed to help (been on it for a little over a week). Went off that diet the past four days, and the horrible cramps and diarrehea have come back. I am obviously believing it was adding the grains back in, but I am confused. Is it possible for my testing to say negative but my still having the disease? I'm wondering if maybe the pregnancy/birth triggered the celiac's in me and if I got tested now it might be positive? I'm going gluten free again now because I felt so much better, but I'm concerned about the possiblity of my having the genes, and having passed them onto my son. Any insight would be so great. I also wondered if anybody knows about the gene testing, how it is done, how much is it, etc. Thanks for your time!

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

Celiac.com Sponsor (A8-M):


Kamma Explorer
Kamma
Posted

I don't think they do gene testing in Canada, where I am located, but they do it in the US. Perhaps someone else can speak to that.

Regarding your testing, some people have tested negative on the celiac panel but have had positive biopsies, some people test negative but respond exceedingly well to going gluten free and some people are IgA deficient so the ttg IgA test will show up as normal. I'm assuming that they tested you for IgA deficiency.

Keep in mind that non-celiac gluten intolerance will not show up as a positive on a test designed for celiac. NCGI exists and they are currently designing diagnostics tests specifically for it.

The best indicator, in my opinion, is if you respond to going gluten free and you find an abatement in your symptoms. I'd keep going with the gluten-free diet. You have nothing to lose and so much to gain. You can always give yourself at least six months on the diet (and be strict! :)) to see if it helps.

guest134 Apprentice
guest134
Posted

They don't do genes in Canada. It is possible to do it but you will have to send it to a U.S lab and must be prepared to pay an arm and leg (I am talking 500 to 1000 dollars).

peeptoad Apprentice
peeptoad
Posted

Keep in mind that non-celiac gluten intolerance will not show up as a positive on a test designed for celiac. NCGI exists and they are currently designing diagnostics tests specifically for it.

This is cool and I wasn't aware of this... do you have any more information about these new tests?

Kamma Explorer
Kamma
Posted

This is cool and I wasn't aware of this... do you have any more information about these new tests?

Only that the Centre for Celiac Research is still trying to develop them. Dr. Fassano believes, based on the evidence, that non-celiac gluten intolerance is a reaction from the innate immune system, not the adaptive immune system. I guess I should also start using the term 'gluten sensitivity' as that is the accepted name for NCGI.

Excerpt, Dr. Fassano Interview Sept/12:

"There are currently no evidence-based tests to measure biomarkers for gluten sensitivity. The Center for Celiac Research is currently conducting very promising research to develop a reliable evidence-based test.:

Full Interview continued here: Open Original Shared Link

elliemay32 Newbie
elliemay32
Posted
  • Author

Thanks for all the tips/help so far, keep it coming! I live in the US so I know I can get the gene testing, I just don't know how much and if insurance covers it. Like I mentioned, I am more concerned about whether or not my son could develop it some day. I only care about diagnosing me for certain so that we can be aware of him, especially since I know several people who had no symptoms whatsoever but have Celiacs, so waiting until he "has symptoms" doesn't seem like the best game plan to me. I would ideally like to get gene testing done on him to find out if he has either or both gene, just not sure how to go about it. If it isn't celiac's for me, then it very well may be the gluten intolerance, because even for such a short period of time off it, I felt tons better.

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. 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/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.