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

Biopsy question

Moonscout

Recommended Posts

Moonscout Newbie
Moonscout
Posted

I have a question regarding the best time to take a biopsy. 

I have what I suspect to be dh for about 15 years. Its always been mild enough that in the first couple years that I shrugged it off. Its a rash that presents on the outer side of both my elbows and sometimes knees. The rash has a mind of its own and I can never predict when its coming or how bad its going to be. Sometimes it takes over both my elbows and sometimes, as I have at the moment, its just a few lesions - but always bilateral. I also never know when I'm going to get it. It can occur constantly over a period of months, every other month or I've gone up to a year between out breaks. July '17 I had an appointment with a dermatologist to finally figure it out but it's very hard to get an appointment and of course I was between outbreaks. The derm agreed that it was autoimmune related but was not sure what it was (It filled me with such confidence) so a biopsy was ordered. Since I was between outbreaks and a biopsy couldn't be taken and I have a note in my file saying to fit me in if I call. I'm currently in the middle of a very mild outbreak and debating if I should call. If I can't get in this week, I'm afraid it will be gone by next week. Which brings me to my question (finally) Is it too late to have the biopsy done if the lesion breaks? 

 A quick overview of what my rash looks like: It starts out with what looks like bug bites, they are usually very sensitive. I can tell they are coming when I set my elbows on the table because it feels like tiny metal balls being stuck into my skin. Then they start to itch and form small blisters which eventually break heal and turn the skin a purplish color for a few weeks before disappearing completely. 

I really want to the diagnosis stage over with and the unpredictable nature of this rash does my head in. I refuse to give up gluten without a diagnosis but I highly suspect that it is dh.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

No one can answer your question with such precision but I would say as long as the lesion has not begun to heal. Make sure the biopsy is done from a clear area adjacent to an active lesion.

Moonscout Newbie
Moonscout
Posted
  • Author

Thank you for the reply! That was basically what I wondering.  

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. Heather Hill
      - Heather Hill replied to Heather Hill's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Does this definitely suggest Coeliac Disease?

      Many thanks for your responses, much appreciated. The tests did include tTg IgA and all the other markers mentioned. I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including...
    2. trents
      - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would...
    3. MI-Hoosier
      - MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy. With the condition my liver is in I am unsure moving back...
    4. trents
      - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is...
    5. MI-Hoosier
      - MI-Hoosier posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Hi, I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect. During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,254
    • Most Online (within 30 mins)
      7,748
    brigette
    Newest Member
    brigette
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heather Hill
      Does this definitely suggest Coeliac Disease?

      By Heather Hill · Posted

      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
      Test uncertainty

      By trents · Posted

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Test uncertainty

      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Hi,  I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect.   During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test? Any thoughts are appreciated.  
×
×
  • Create New...