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
      131,540
    • Most Online (within 30 mins)
      7,748
    Barrie S
    Newest Member
    Barrie S
    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

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • 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.