Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Advice For My Little Nephew?! Neg. Bloodwork


Cath724

Recommended Posts

Cath724 Apprentice

Hi everyone,

When I found out that celiac is hereditary I immediately thought of my 5-year old nephew. He's had health issues since birth (he was born with a herniated diaphragm). He's like 30lbs. at 5 years old, has always had acid reflux and stomach issues, etc., and now may have asthma. It's just one thing after another for the little guy. Long story short here, I advised my brother to get him tested for celiac and the blood work just came back negative. The doc told them that he wasn't a candidate for celiac anyway because he had grown this year.

I hear a lot of talk on here about negative bloodwork but don't know what to recommend to my brother. They think he's negative, but celiac makes SO much sense with so many of his symptoms. I don't want to overstep my boundaries here, but feel they shouldn't rule out celiac just yet. What would you recommend to them? More testing? Trying a gluten-free diet? Should I ask them to get me a copy of the bloodwork? I think my nephew's mother has doubts as well so she'd be receptive to any information I could provide her.

Thanks!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Yes, they should request a copy of the bloodwork. It is always a good idea to keep a file of your own medical records at home.

Then let us know what they were.

And yes, you can def. have negative blood and still have Celiac. It is EXTREMELY difficult to dx Celiac in young children as there are often false negatives. If they can afford it, they can use Enterolab and also do the genetic portion of the test.

A gluten free trial is another way to find out.

Cath724 Apprentice

Thank you! I will ask them this week to get the bloodwork.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,102
    • Most Online (within 30 mins)
      7,748

    SarahHitch21
    Newest Member
    SarahHitch21
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Looked this up.   Yes, forgiveness and bearing with people is people is vital.  
    • cristiana
      I must admit I've been on both sides.  Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing.  There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they were being a bit ridiculous spending extra money on what I thought was a fad.  Yet since my diagnosis that shop has been a real lifesaver.  I guess It is hard for people to see the necessity of all this extra effort if they haven't experienced celiac disease personally, or observed the way gluten affects someone they love.  Honestly, I have wondered at times if I would have been as understanding had my husband been diagnosed with coeliac disease instead of me. He has been great.   It must be incredibly difficult if your close friends and family aren't supporting you.  I have read some awful stories from coeliacs where friends and families have not just been unsupportive, but go out of their way to continue serving up gluten.   In such extreme cases, where harm is actually being done, serious thought needs to be taken about removing oneself from harm's way.  That all said, I find that the world is now so full of people struggling with autoimmune illnesses now, allergies and intolerances, that people are definitely becoming more attuned to things.    Word is getting out there. In 2022 a long-running popular TV series in the UK, Doc Martin, ended with a final case: a patient being diagnosed with coeliac disease.  I don't know if anyone saw it but I was so heartened by that episode, that celiac disease was given centre stage for the last ever programme. The patient in question had been suffering from a horrible rash which turned out to be dermatitis herpetiformis. He also had anemia, felt faint and was plain exhausted.  It would have been good education to anyone watching who didn't know about the disease and they would have been left in no doubt about its seriousness and the need to follow a strict gluten-free diet.  I thought to myself as it ended, well, now, that's another piece in our campaign to make coeliac disease better understood!    
    • trents
    • CatS
      I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication. I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself.  I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore. Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it. On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.
    • Kwinkle
      Thank you, Trents- are there any safe alternatives?
×
×
  • Create New...