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

Testing Question


mistresninos

Recommended Posts

mistresninos Rookie

We are still in our testing phase. The specialist claimed the paed did not order the correct testing for Celiac. <_<

Anyway, we are going back to a different specialist but at the same office on Wednesday so I've been doing some more research because we still have no difinitive answer (the lab has not returned the results of the last tests).

I ran across this article Open Original Shared Link . In it the author says, "There is no test yet which is definitively diagnostic of celiac disease. Relief of symptoms or reversion of an abnormal intestinal biopsy to normal on a gluten-free diet is the most convincing evidence that an individual has celiac disease or gluten sensitivity."

Is this simply old information? I am wondering because we have placed our son on a gluten-free diet and he has improved nearly 100%. Whenever we waver from that diet in any way, even to wheat-free foods, his symptoms return.

Thanks so much for any information on this.


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



Celiac.com Sponsor (A8-M):



debbiewil Rookie

None of the current tests are perfect. The blood tests can indicated celiac, and testing positive on more that one is highly significant. If the biopsy shows villi damage, especially with positive blood tests, then celiac will probably be diagnosed. There are one or two other things which can cause villi damage, though, but they are very rare.

Also, if you (or your son) is already on a gluten free diet, then that can mess up the test results. The tests are most likely to be false negative. You usually have to be eating gluten on a regular basis for a long time in order for the tests to be positive.

Debbie

Rae Apprentice

I lost hope in a lot of doctors. I had positive bloodwork for celiac disease, but my doc said everything looked fine in my endo/colon (which i took today), she just has to test the biopsy. It may just be that your son is gluten sensitive and does not have celiac disease- beware I am not a doc, just giving you my opinion- but that what my doc told me. And sometimes test will turn up negative- especially when your son is on a gluten-free diet. My advice is to do whatever makes him feeling better- if the diet work then continue, regardless if docs say he doesnt have celiac disease. Make sure you check for everything possible, get 2nd opinions. good luck!

VydorScope Proficient

Okay, heres the simple deal... if your child gets better with gluten-free, and worse when he gets gluten that is diagonostic enough.

A full blood panel and biposy could confirm that, but ONLY IF YOU DO NOT PUT HIM ON THE GLUTEN FREE DIET. You siad he is currenlty on the diet, so his test will not be usefull.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.