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

  • 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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      15

      Related issues

      No they just said stop all supplements two weeks before.Its so frustrating im not at all happy with my "care team",because im not being seen for my sibo infact my appointment was dropped, I even asked about it and they said Dr prescribed you meds and I stated yes but I again had a reaction.I feel bothersome. I need to find another gi but its useless because...
    2. knitty kitty
      - knitty kitty replied to science enthusiast Christi's topic in Coping with Celiac Disease
      4

      Sugar intolerance 10 years into gluten-free diet

      @science enthusiast Christi, It could be Small Intestinal Bacterial Overgrowth (SIBO). Lots of people with Celiac develop it, especially if they eat a high carbohydrate diet. Colonic bacteria crawl into the small intestine and ferment the excess carbohydrates and prebiotic fibers which causes lots of gas. I changed my diet to the Autoimmune...
    3. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Great Value Veggies cannot be trusted.

      Yes, a rule I usually follow. Pict Sweet was always known to be gluten-free and after many years of use with no problems, it's easy to forget to look.
    4. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      8

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      "I am quite convinced this gluten is coming from exposure whilst eating out. Small levels, that don't make me violently sick, but might give me a mild stomach upset." cristiana, are you saying this is your actual experience or are you speculating here?
    5. Peggy M
      - Peggy M replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      25

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I have tried many Vit D. Solgad is one that did not cause any problems. I take 5000IU. Most of their vitamins are gluten-free certified but this is not. They can be purchased direct from Solgar or Amazon.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,483
    • Most Online (within 30 mins)
      7,748
    AntiWheatBabe
    Newest Member
    AntiWheatBabe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      No they just said stop all supplements two weeks before.Its so frustrating im not at all happy with my "care team",because im not being seen for my sibo infact my appointment was dropped, I even asked about it and they said Dr prescribed you meds and I stated yes but I again had a reaction.I feel bothersome. I need to find another gi but its useless because its going to be same thing around here.i just feel lost and in tbe medical file they are writing what ever and its really not ok. In fact i dont want to go unless they record the conversation. Yes its that bad.im only having  care and concern for my ms whose Not part of the same health association that pcp and gi are with.I will have to look into changing to another. Mayo clinic is great but its the celiac, sibo, ect and all related issues that need addressed but current " careteam says call when needed. No plans of scheduled dates
    • knitty kitty
      Sugar intolerance 10 years into gluten-free diet

      By knitty kitty · Posted

      @science enthusiast Christi, It could be Small Intestinal Bacterial Overgrowth (SIBO).  Lots of people with Celiac develop it, especially if they eat a high carbohydrate diet.   Colonic bacteria crawl into the small intestine and ferment the excess carbohydrates and prebiotic fibers which causes lots of gas.   I changed my diet to the Autoimmune Protocol Diet (AIP), a Paleo diet, and supplemented with a B Complex and Benfotiamine, a form of Thiamine that helps heal the intestines and has antibacterial properties.  I had improvement within a few days.  The AIP diet starves out the carbohydrate loving SIBO bacteria and allows more beneficial bacteria a chance to repopulate. Hope this helps.
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Yes, a rule I usually follow. Pict Sweet was always known to be gluten-free and after many years of use with no problems, it's easy to forget to look.    
    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      "I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset." cristiana, are you saying this is your actual experience or are you speculating here?
    • Peggy M
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Peggy M · Posted

      I have tried many Vit D. Solgad is one that did not cause any problems. I take 5000IU. Most of their vitamins are gluten-free certified but this is not.  They can be purchased direct from Solgar or Amazon.
×
×
  • 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.