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

Should I Get Tested?


Virgie

Recommended Posts

Virgie Apprentice

Hi! I suppose this is not really a new question but I keep going back on forth on this and was just wondering what you all thought. My 13 year old daughter just got dx with Celiac in September. And I am wondering if the rest of the family should get tested. My son did get tested 3 years ago but it was negative then. He has also had endoscopies that did not show celiac and has had allergy testing done so I feel that he probably does not need to be tested again. Now as for me I do not have any real diarreha or constipation issues although I do sometimes get diarreha after eating McDonald's fries (not sure why). I am also not losing weight (in fact I have gained weight in the last year). What I do have is an almost constant achy body, sore knees, sore feet, etc. I am only 47 but somedays feel like I am 67. I also get head aches. And often have cankersores in my mouth so bad that it is hard to eat., & I also have dental issues. So I am wondering if with any of these symptoms if celiac could be the reason? For my husband the only reason I worry about him is that he is losing weight. He is 5'9" and weighs 135. A little thin there I think but maybe I am just jealous that I'm not that thin. My sister-in-law tells me that he is so busy that is why he loses weight. Which is true that he works alot and I think does have a fast metabolism but he also eats a whole lot more than I do and drinks at least 2 beers a day (more on the weekend or at a party) and they have alot of calories in them too and yet he still loses weight.

Do you think we should be tested? Should we do Entrolab? Would that be just as good as going to the doctor?

Thanks for your input! :)

Virginia


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

I would test the whole family. You've got nothing to lose. I'd also re-test your son. Celiac is something that gets triggered by an event so even if he didn't have it three years ago, it's possible he's developed it now.

As for how to test - it depends. Enterolab is a perfectly ok diagnosis in my mind. It also keeps the official diagnosis off your medical records which could be useful later in life if you or your children ever have to get private insurance. But, if you want to get a 504 plan for the kids for school, you'd probably need a doctor's note, and, depending on your doctor, he/she may or may not provide that if you don't have an official mainstream diagnosis.

ravenwoodglass Mentor

I would definately test the whole family and I second the vote for Enterolab. We had the whole family tested after my diagnosis, all showed positive on conventional testing but it was a low positive and one of us was told the positive was negative until we got our hands on the test itself and saw that the result was into the positive range. The doctor just didn't think it was positive enough to bother with. Even family members who thought that their issues were not gluten related discovered differently once they had gone gluten-free. I would suggest that the family try the diet strictly for a bit even if conventional regular doctor blood results are negative. I have no crystal ball but the one that I predict will have the biggest issue is your DH. Gluten in alcohol can be extremely addictive and he may find it hard to switch from those couple of beers a day to a glass or two of wine.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,590
    • Most Online (within 30 mins)
      7,748

    BeccaShu
    Newest Member
    BeccaShu
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Alibu
      I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
    • trents
      Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
    • linnylou73
      Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
    • KimMS
    • Scott Adams
      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
×
×
  • Create New...