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

Positive gliadin is now normal


Runningmomma

Recommended Posts

ironictruth Proficient
7 hours ago, Gemini said:

You know, they really ought to standardize testing protocol a bit better for some diseases like Celiac so we have some consistency here!  I have never seen the combined assay before and I am not really sure why they would combine antibody testing like that but hey, I am not wearing the white coat!

Increased IEL's also happen in the early stages of Celiac and we all know it can take YEARS for it to get bad enough for the blood screen to scream positive or show up as Marsh damage on biopsy. As a first degree relative, you know you probably have the ability to pop for it. Have you had the gene testing done? I think the pill cam is a good idea and it will be interesting to see what it shows when you have it done.....hopefully!  Are you gluten free now before any more testing?

The celiac center at Columbia just published a study in February on TTG negative DGP positive biopsies. They utilized both screens. It is maddening. I thought I had the answer then....nope! I think they even make a TTG/DGP screen but do not quote me on it. 

Yes, I am gluten free now as of late May per my specialist. I have undergone so much testing and more then one gluten challenge. I am DQ2 positive. 

I was thinking of restarting gluten just for the pill cam as it may be several more weeks due to insurance. But I do not think I will. 

Almost daily, I go through an episode of horrible pressure in my right ribs. Sitting makes it worse. I can feel it radiate through my right neck into my head. Sometimes it causes an irregular heart beat. I would swear I had an obstruction in the hepatic curve of the colon (this symptom started last summer after stabbing pains post a colonoscopy so I thought maybe it twisted). Alas, I still "go", so obviously I am not obstructed. 

I will keep everyone posted on the pill cam. 


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



Celiac.com Sponsor (A8-M):



Runningmomma Rookie

Hello again! I called the gastro's office today and the receptionist told me that they mailed my results today, but she looked them up for me. I feel like this office is really incompetent. They changed my procedure time from 10 am to 7:30 am and didn't inform me. Anyway, the receptionist looked up my results and said the colonoscopy came back normal and also the endoscopy. I asked her about the tests, because they biopsied for Celiacs, h.pylori, and microscopic colitis, and she told me that my esophagus was normal. Everything was normal. When I asked her if the results said anything about marsh stages she said it just said normal. So my question is, is this normal? Lol! I feel like she was just looking at the immediate results of the scopes so now I'm in limbo till it comes in the snail mail because they are closed for the weekend. So frustrating! Isn't the celiac biopsy determined by marshes?

tessa25 Rising Star
1 hour ago, Runningmomma said:

Isn't the celiac biopsy determined by marshes?

My biopsy didn't mention marsh stages. It mentioned blunted villa. Normal means normal.

 

Ennis-TX Grand Master
4 hours ago, Runningmomma said:

Hello again! I called the gastro's office today and the receptionist told me that they mailed my results today, but she looked them up for me. I feel like this office is really incompetent. They changed my procedure time from 10 am to 7:30 am and didn't inform me. Anyway, the receptionist looked up my results and said the colonoscopy came back normal and also the endoscopy. I asked her about the tests, because they biopsied for Celiacs, h.pylori, and microscopic colitis, and she told me that my esophagus was normal. Everything was normal. When I asked her if the results said anything about marsh stages she said it just said normal. So my question is, is this normal? Lol! I feel like she was just looking at the immediate results of the scopes so now I'm in limbo till it comes in the snail mail because they are closed for the weekend. So frustrating! Isn't the celiac biopsy determined by marshes?

If it comes back negative for celiac you could still have NCGS and still require a gluten-free diet. We have a few members with this kind of issue that can give you more information on it.

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.