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

I Don't Understand "borderline Celiac"

NCM

Recommended Posts

NCM Newbie
NCM
Posted

After being very ill for over 20 years I was tested for Celiac in May and my tTG was 87 (over 20 is positive) and my EMA was positive. I had a biopsy and it showed partial villous atrophy. So I was diagnosed. Once I came back with positive blood work I inisisted on having my children tested. My 5 year old daughter had a tTG of 92 (over 20 is positive) and had a biopsy done which showed inflammation and the pediatric GI specialist diagnosed her based on bloodwork, biopsy, family history and symptoms. (she was tired and would have stomach aches and gas) My 8 year old son had a tTG of 32 (over 20 is positive) and didn't have a lot of symptoms but prior to his biopsy he started complaining a lot that his stomach hurt and has always been rather irritable. His biopsy showed inflammation (like my daughter's) but when we had his follow up appointment with the doctor (who is the head of the GI clinic at a hospital and the same one my daughter saw!) he said my son is "borderline Celiac". He said his bloodwork was considered borderline and because his biopsy showed inflammation and not damage that it was borderline too. I don't understand this and found it really frustrating! He turned to my husband and I and said it was our decision whether to have him go gluten-free. I don't understand why he clearly diagnosed my daughter but not my son! We made the decision to have my son go gluten-free because I'm terrified of him getting as sick as I was but it's bothering me what the doctor said. How can someone be borderline Celiac and how can the bloodwork be borderline if according to the lab report over 20 is positive and he is 32? Not to mention that his bloodwork was done in May and his biopsy was done in September so how do we know that by September his tTG wasn't a lot higher? AND I thought that if a biopsy shows inflammation that it's the beginning stages before atrophy?

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

After being very ill for over 20 years I was tested for Celiac in May and my tTG was 87 (over 20 is positive) and my EMA was positive. I had a biopsy and it showed partial villous atrophy. So I was diagnosed. Once I came back with positive blood work I inisisted on having my children tested. My 5 year old daughter had a tTG of 92 (over 20 is positive) and had a biopsy done which showed inflammation and the pediatric GI specialist diagnosed her based on bloodwork, biopsy, family history and symptoms. (she was tired and would have stomach aches and gas) My 8 year old son had a tTG of 32 (over 20 is positive) and didn't have a lot of symptoms but prior to his biopsy he started complaining a lot that his stomach hurt and has always been rather irritable. His biopsy showed inflammation (like my daughter's) but when we had his follow up appointment with the doctor (who is the head of the GI clinic at a hospital and the same one my daughter saw!) he said my son is "borderline Celiac". He said his bloodwork was considered borderline and because his biopsy showed inflammation and not damage that it was borderline too. I don't understand this and found it really frustrating! He turned to my husband and I and said it was our decision whether to have him go gluten-free. I don't understand why he clearly diagnosed my daughter but not my son! We made the decision to have my son go gluten-free because I'm terrified of him getting as sick as I was but it's bothering me what the doctor said. How can someone be borderline Celiac and how can the bloodwork be borderline if according to the lab report over 20 is positive and he is 32? Not to mention that his bloodwork was done in May and his biopsy was done in September so how do we know that by September his tTG wasn't a lot higher? AND I thought that if a biopsy shows inflammation that it's the beginning stages before atrophy?

I'd say they're both celiac and you're a smart Mom to question the doctor's diagnosis. I never understood the "borderline" either but then I think a lot of doctors are clueless but that's a whole other topic. Are you making your whole house gluten-free? It would certainly make it a lot easier to not worry about cross-contamination.

And welcome to the forum!

NCM Newbie
NCM
Posted
  • Author

I'd say they're both celiac and you're a smart Mom to question the doctor's diagnosis. I never understood the "borderline" either but then I think a lot of doctors are clueless but that's a whole other topic. Are you making your whole house gluten-free? It would certainly make it a lot easier to not worry about cross-contamination.

And welcome to the forum!

I have a VERY supportive husband who insists on the house being gluten free. While everyone has been having their turn at a biopsy we have had it half gluten and half gluten free which has been stressful. Now that it's completely gluten free it's a lot easier. This doctor has really good credentials and is considered very knowledgeable with Celiac Disease. We did get the feeling that he wanted to study my son if he stayed on gluten. We asked him if the inflammation would get better if he stayed on gluten and he said no and I said "but it will get worse right?" and his response was "it wouldn't be wrong to agree with you" WHAT??? I asked him why would we keep him on gluten and he said that some people choose to in these circumstances because the diet is inconvenient if there's only one person in the house on it. Since when is making sure your kid is healthy an inconvenience???? Don't get me wrong the diet can be challenging at times (I've been on it for 3 months now) but I don't want to see him sick!

Jenniferxgfx Contributor
Jenniferxgfx
Posted

That doctors ethics worry me. It sounds like your family may be his guinea pigs.

Borderline celiac is like a little bit pregnant. Not possible.

anna34 Enthusiast
anna34
Posted

Ugh! The whole "borderline" thing irritates me too. My test was borderline and I was told I could try the diet "if I want to" and wasn't given any other direction. Well, within 24 hours on the diet, I got my answer and haven't looked back. I don't understand why they are so hesitant to encourage a trial of the diet. It's like saying "keep doing what you're doing and we'll see if you get sicker/sick enough to test positive". :blink:

nora-n Rookie
nora-n
Posted

In the old days they demanded total villous atrophy, hence this looks borderline to them.

Just google what the well-known finnish celiac researcher M

Archived

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

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


  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748
    Amari Love
    Newest Member
    Amari Love
    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

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.