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

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
      132,118
    • Most Online (within 30 mins)
      7,748

    Cwbtex
    Newest Member
    Cwbtex
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • 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.