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

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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.