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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Early Childhood Celiac Symptoms


Kilpatrick

Recommended Posts

Kilpatrick Newbie

I am the mother of a diagnosed (biopsy) celiac daughter who was misdiagnosed as having lupus at the age of 11 at Texas Children's Hospital in Houston. She is now 28 and is, since being properly diagnosed 4+ years ago and being gluten free since, thriving. Recently my 4-year-old grandson, the child of another daughter, has been manifesting facial and digit swelling, as well as low grade fever, aches, and pains. At the time of the first daughter's misdiagnosis we were told she would only live a couple of years so, understandably, we were concentrating on keeping her as comfortable, happy, and stress-free as possible, as well as the rest of our family. We concentrated on keeping her extreme acute facial swelling and itching rash to a minimum with constant Benadryl and Atarax, as well as carrying an EpiPen with us at all times. My problem at this point in time is I cannot remember if she also ran a fever in the beginning. All of our daughters (we have four) are now very aware and watchful for any signs of celiac in their children because, besides the daughter with celiac, we now have a 3-year-old granddaughter with celiac disease. She lived overseas when she first manifested symptoms and her very young parents did not notice if she ran a fever. The mother of the 4-year-old grandson is spending tonight sleeping on the floor beside her son's bed in the fear of his throat swelling, wondering if this is the beginning of the same celiac manifestations her sister had 17 years ago, or is this swelling symptom coupled with the fever a simple viral exanthem that all children get. Has anyone experienced fever associated with celiac reactions in their children?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Skout Organic
Food for Life



Celiac.com Sponsor (A8-M):
Skout Organic


darlindeb25 Collaborator

Hi, and welcome to the forum.

After reading your post I thought I should tell you about someone that has those same symptoms when glutened & that she (& other family members) are also very allergic to sorghum flour & the whole sorghum family.

I have a friend, this happens to her & to her grandchildren. My friend is 60 & gluten-free & her 26 YO daughter is now gluten-free and her daughter-in-law is diagnosed celiac & they have their two boys gluten-free. The two boys also get that face swelling & fever.

I think that this is a very serious form of gluten intolerance/celiac that might also be an allergy to gluten. As long as all of your girls are aware of the gluten problems in the family, they should first, have the kids tested, then go gluten free, no matter the results, and see if it helps.

My experience with sorghum was for silage use for animal feed. When it is growing, the actual plant looks so similiar to corn, I will not even give sorghum a chance. I am intolerant of corn also.

Good luck with your family. Feel free to email me for my friends email addy: darlindeb25@aol.com

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      127,163
    • Most Online (within 30 mins)
      7,748

    Jennifer1980
    Newest Member
    Jennifer1980
    Joined

  • Celiac.com Sponsor (A20):
    Tierra Farm


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Food for Life



  • Upcoming Events

  • Posts

    • trents
      Do you mean that your stools firmed up when you began to cut gluten from your diet?
    • SaiP
      And stool change to almost solid as oppose to diarrhea like
    • SaiP
      Hi,  Apologies, I'm self diagnosed with celiac disease. I have had several blood tests done throughout the years for celiac, thyroid, crp etc (while being on a gluten diet throughout) and they all came back negative. I was scheduled for an endoscopy, however I have a huge phobia of it, so I declined. I mainly self diagnosed, due to while being on a strict gluten free diet on and off throughout the years, many symptoms greatly improve I.e my skin, brain fog, more alert and feel better.
    • trents
      No, I have not before encountered reports of insomnia connected with gluten withdrawal. You did not answer a question from my original post. Are you officially diagnosed or self-diagnosed with celiac disease? Were you diagnosed with just antibody testing or both antibody testing and endoscopy/biopsy?
    • SaiP
      Hi Trents Thanks again for the response, much appreciated. In regards to gluten withdrawal, since I was only getting 1 hour of sleep per day, there is no chance I could keep the 100% gluten free diet going, as I would have ended up in the hospital pretty soon due to lack of sleep. So, what I'm doing at the moment is eating toast and reducing the amount and tracking how my sleep improves. I think this is the only thing I could really do. Are you aware of any other cases similar to this? I can barely find any even when googling. In terms of white rice, I understand there's hardly any nutrients in eating that much of it, but I'm only doing it to make sure I'm eating as much calories as I can.  
×
×
  • Create New...