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. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Here are some articles on cross-reactivity and celiac disease:
    2. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
    3. cristiana
      - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

      Good evening @EssexMum You are quite right to be concerned about this situation. Once diagnosed as coeliac, always a coeliac, and the way to heal is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019. My spoken French isn't bad...
    4. EssexMum
      - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage. History: She had been having severe tummy pains on and off every...
    5. Florence Lillian
      - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,632
    • Most Online (within 30 mins)
      7,748
    Kit Sunshine
    Newest Member
    Kit Sunshine
    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

    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Concerning GP advice

      By EssexMum · Posted

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • Florence Lillian
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Florence Lillian · Posted

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
×
×
  • 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.