Jump to content
  • 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):

Being Boarderline And Confused!


beksmom

Recommended Posts

beksmom Apprentice

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.

My husband decided to go gluten free with me because he had a "borderline" response to the celiac test, and some bathroom issues. However, he certainly did not consider himself celiac and was doing it to accommodate me :wub:

When we were back at Tahoe he indulged in some sourdough french bread, and then some beer, and continued to have a beer or two when we got back here. One day he broke out on his forehead with dermatitis herpetiformis (I recognized it immediately from all the pictures I had seen on the forum). I told him to get the area adjacent biopsied immediately but they scheduled an appointment for two weeks later, by which time the lesion was starting to fade because he quit gluten again. So he cancelled the appointment and became a believer. He still has a very wide white scar on his forehead and, vain creature that he is, is convinced that he should not eat gluten.

I do not think there is any such thing as "borderline" or "mild". The analogy we use here is that you cannot be "mildly" pregnant: you either are or you aren't. A little bit pregnant is the same as being a lot pregnant--you are still pregnant!

Consider your son to be celiac. If you want further confirmation you and your son could both do genetic testing through Enterolab or Prometheus (I believe the latter requires your doctor to order it; Enterolab you can do yourself). Either way, I am not sure that most insurances will cover Prometheus; Enterolab you have to pay for yourself, about $450 per person. :o Of course, as you say, he could also have the biopsy, but that is just as likely to be inconclusive as the blood test, unfortunately, especially if they don't take the samples from the right areas.

bluebonnet Explorer

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.

"mild" compares to what my doctor said about my bloodwork "at best okay". i didn't do the endoscopy but had enterolabs do genetic and gluten and it came back positive. i see a lot of gi issues in my (short for his age 13 year old) and now knowing i've got the genes, i am having him tested. a postive response to gluten free diet is also confirmation. my doctor was very accepting of my outside labs and doesn't feel the need for the endoscopy if i do not. i mean the "proof" is there. chances are increased if you have it then he will. best wishes! :)

Reba32 Rookie

if Celiac shows up on a blood test, you're Celiac. Doesn't matter if they consider it "mild" or 99% positive. If you continue to consume gluten, then the damage will get worse, and the next blood test will be more definite. Why cause yourself (or your child!) more damage?

Archived

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

  • 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. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

    2. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    3. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    4. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    5. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442

    Urquhart
    Newest Member
    Urquhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...