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

Can I have Celiac even if I test negative?


Bellelovegood416

Recommended Posts

Bellelovegood416 Newbie

Ok, here is the deal. I am 16 now but, as of April last year I started to think maybe gluten was not a good idea for me. My family had given up most of the gluten in the house because my mom had the genes to have Celiac. I would still eat small amounts of it every once in a while but, for the most part I was gluten free for two years. Then my family decided to go back to having gluten in the house to see what would happen. The following day I felt awful and the next day I woke up to find a horrible red itchy blister covered rash in patches all over my face, neck, arms, legs, and abdomen. I honestly freaked out. So me and my Mom decided to take me back off of gluten. It seemed like forever but, in about two weeks my rash is almost gone and I felt a lot better. I  was fine for the next few months till I started to have my next problem. Every once in a while I would get starbucks or chick-fil-a. Gluten free things but, they still sat next to or were made right next to things covered in flour. And, every once in a while after eating something out I would get REALLY sick for a day or two. Then I got my second rash worse than the first time sometime in August. I got put on strong steroids by my family doctor to help with all the swelling and I stayed home from school. I kept getting hit with days of running a fever and barfing. Then in December I went to see an allergist. I was tested for the most common allergys other than wheat because they didn't have it and the only 2 that I reacted  to were dust mites and house dust. So the Allergist told me to eat gluten for 2 days and get my blood drawn for the Celiac pannel. I found out after the two days that twos day was not enough for the testing to come back right and that I had to eat gluten for at least 2 weeks. So I waited till after Christmas and a little past the new year. Then I went back on gluten and ate it for two weeks. Got my blood drawn and waited till they had my results. They came back negative. I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Authentic Foods
Food for Life



Celiac.com Sponsor (A8-M):
Food for Life


kareng Grand Master
(edited)
  On 1/31/2018 at 7:07 PM, Bellelovegood416 said:

Ok, here is the deal. I am 16 now but, as of April last year I started to think maybe gluten was not a good idea for me. My family had given up most of the gluten in the house because my mom had the genes to have Celiac. I would still eat small amounts of it every once in a while but, for the most part I was gluten free for two years. Then my family decided to go back to having gluten in the house to see what would happen. The following day I felt awful and the next day I woke up to find a horrible red itchy blister covered rash in patches all over my face, neck, arms, legs, and abdomen. I honestly freaked out. So me and my Mom decided to take me back off of gluten. It seemed like forever but, in about two weeks my rash is almost gone and I felt a lot better. I  was fine for the next few months till I started to have my next problem. Every once in a while I would get starbucks or chick-fil-a. Gluten free things but, they still sat next to or were made right next to things covered in flour. And, every once in a while after eating something out I would get REALLY sick for a day or two. Then I got my second rash worse than the first time sometime in August. I got put on strong steroids by my family doctor to help with all the swelling and I stayed home from school. I kept getting hit with days of running a fever and barfing. Then in December I went to see an allergist. I was tested for the most common allergys other than wheat because they didn't have it and the only 2 that I reacted  to were dust mites and house dust. So the Allergist told me to eat gluten for 2 days and get my blood drawn for the Celiac pannel. I found out after the two days that twos day was not enough for the testing to come back right and that I had to eat gluten for at least 2 weeks. So I waited till after Christmas and a little past the new year. Then I went back on gluten and ate it for two weeks. Got my blood drawn and waited till they had my results. They came back negative. I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.

Expand Quote  

2 weeks isn't usually enough time to eat gluten to have it show in large enough  quantities in a blood test.  The recommended amount of time, by Celiac doctors, is 12 weeks.

 

"For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten."

Open Original Shared Link

 

Edited by kareng
Ennis-TX Grand Master

Next time you get the rash, if it is DH you can go to a dermatologist, they will take a biopsy on a clear spot next the the lesion and check it for antibodies....NOTE I  do not get DH as a symptom I am quoting and commenting on info I picked up.

  • 2 months later...
Riya Newbie

If you know you are getting sick from ingesting the gluten, I recommend a colonoscopy. I tested negative in the blood tests as well but when my colonoscopy was done, they confirmed on the spot that I had celiac. The blood testing is not always effective for everyone. 

kareng Grand Master
  On 4/9/2018 at 5:34 AM, Riya said:

If you know you are getting sick from ingesting the gluten, I recommend a colonoscopy. I tested negative in the blood tests as well but when my colonoscopy was done, they confirmed on the spot that I had celiac. The blood testing is not always effective for everyone. 

Expand Quote  

Usually, Celiac is diagnosed by an endoscopy not a colonoscopy.  It's possible the colonoscopy goes as far as the far end of the small intestine, but not always. 

Riya Newbie
  On 4/9/2018 at 12:05 PM, kareng said:

Usually, Celiac is diagnosed by an endoscopy not a colonoscopy.  It's possible the colonoscopy goes as far as the far end of the small intestine, but not always. 

Expand Quote  

My apologies, you are correct. I did have an endoscopy. 

ch88 Collaborator
  On 1/31/2018 at 7:07 PM, Bellelovegood416 said:

I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.

Expand Quote  

I think wheat allergies are fairly common.  It might be a good idea to get tested for that first if it is easier. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
NutHouse! Granola Co.
NutHouse! Granola Co.



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


  • 2 months later...
Legolass Newbie

I have VERY specific reactions to gluten so we know I am gluten sensitive. I had the endoscopy test for celiac's and it came back negative.  However, I had already been gluten-free for 4 years at that point, and my rheumatologist said that likely affected the results (my gastroenterologist ordered and performed the test). My rheum doctor is certain I have celiac's but doesn't want to put me through the pain of eating gluten for 8-12 weeks for a more sensitive test since we know I react painfully to it. With the rest of my rheumatological symptoms he was confident to diagnose me with celiac's even with the negative test. You very well could have it too, but since there's no treatment other than a gluten-free diet there's no point in putting your system through the pain of eating gluten for more tests when it wouldn't change your life having a definitive diagnosis anyways. I would just say avoid gluten moving forward and move on with your life.

  • 1 month later...
rami999 Newbie

usually no !

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      129,482
    • Most Online (within 30 mins)
      7,748

    huffy13
    Newest Member
    huffy13
    Joined

  • Celiac.com Sponsor (A20):
    NutHouse! Granola Co.


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Authentic Foods



  • Upcoming Events

  • Posts

    • RMJ
      Is there a minimum time since diagnosis of refractory celiac disease?  I really hope I’m not eligible for your study, but looking for it is one reason my gastroenterologist suggested an endoscopy. I’m having it later this month, due to still having GI symptoms on a strict gluten free diet.
    • xxnonamexx
      There's a company called thistle subscription based food completely gluten free plant based. They offer juices, juice shots. I was wondering has anyone made their own juices shots for anti inflammatory gut healthy juices etc? 
    • xxnonamexx
      If you prepare gluten free and eat  gluten free but feel stomach pains hours later what makes it gluten contamination vs. something else you may have ate etc? anything to differentiate in symptoms? Thanks
    • MelissaClinPsyD
      Anyone diagnosed with Refractory Coeliac Disease can participate (they do not need to be in the UK but would need to be able to speak and understand English as the intervention is facilitated in English language)
    • Scott Adams
      Is this only for those in the UK, or can anyone diagnosed with celiac disease participate?
×
×
  • Create New...