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

Hmmm. 9 People Read This And No Advice?

JessicaB

By JessicaB
in Coping with Celiac Disease

Recommended Posts

JessicaB Explorer
JessicaB
Posted

come on guys!

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

I read your query, one of now at least 15 who have, but I don't have any relevant information to post on the topic. I had to read the topic to see what the question was, and once I saw the question, I knew that I did not know anything that would help you. I am sure I am not the only person who reads a lot of posts without responding because I don't have anything useful to contribute to the topic. I do hope that someone who can help reads and responds.

JessicaB Explorer
JessicaB
Posted
  • Author

sorry, im just confused and wish someone had the same situation as me :)

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

You can't expect less than an hour to pass and have a lot of people resond. Clicking a topic doesn't mean someone has actually read it. It's night time and it will be awhile until you get a lot of answers.

plantime Contributor
plantime
Posted

Ditto Peter. If I don't have anything different or of value to add, why should I post?

Lollie Enthusiast
Lollie
Posted

I think I missed something, What was the question?

Lollie

plantime Contributor
plantime
Posted

I don't know. I thought she would repost it in her opening post, but she didn't. There are a lot of new posts each time I come on, so I could very well have just missed it.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

I'm glad I'm not the only one who is confused by this.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I'm confused, too . . . :huh: Also, if no one has any information with regard to a subject, they're not going to BS you and tell you something that could potentially harm you.

Canadian Karen Community Regular
Canadian Karen
Posted

I think she is referring to this thread:

Open Original Shared Link

Karen

mouse Enthusiast
mouse
Posted

Everything I have read says that you cannot have a false positive bloodwork. You can only have a false negative test. Your doctor who did the blood work is 100% right and you do have Celiac. As far as the biopsy I cannot answer that as I never had the test. My doctor was back in the stone ages and did not think it was necessary. The only reason I can see to have a biopsy after a positive blood test is to see how much damage has been done to the Villi. I wish I had done it for that reason alone. But at the time I had never heard of Celiac and was extremely ill at the time of diagnosis.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,072
    • Most Online (within 30 mins)
      7,748
    3rdearesl
    Newest Member
    3rdearesl
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Blood results

      By trents · Posted

      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Oral thrush question

      By knitty kitty · Posted

      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Nutrient deficiencies despite normal MARSH and strict gluten-free diet

      By Scott Adams · Posted

      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...