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):

Anyone With Neg Gene But Has Celiac?

krisb

Recommended Posts

krisb Contributor
krisb
Posted

My 8 year old has been on a gluten free diet for about 3 years now. I know he feels better on the diet and he definitly reacts when he slips up. The only testing we did for him before was the antigen test and it came back way positive. He recently had the genetic test done through a genetisist and it came back negative. I'm still going to keep him off of gluten because I do feel he has a gluten intolerance. I was wondering if anyone else has celiac with a negative gene test. My older son tested positive to the gene.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

Im neg. for Celiac genes, but pos. gluten sensitivity. I have 2 gluten sensitivity genes according to Enterolab. But not the official Celiac genes.

Ursa Major Collaborator
Ursa Major
Posted

Scientists admit that they haven't found all the celiac disease genes yet. In other countries they consider certain genes official celiac disease genes that here they claim don't cause it.

There are some people with celiac disease who don't have the two 'official' American celiac disease genes. I guess your son may be one of them.

Good for you for keeping him off gluten anyway, you are doing the right thing for your son's health.

fedora Enthusiast
fedora
Posted

it is rare to have celiac without the main two genes, but definately possible. There are at least a couple of people on here with biopsy and blood confirmed celiac without the genes. There are documented studies proving that there are some people who get it without the genes. Also males are more likely to not have the 2 main genes

ravenwoodglass Mentor
ravenwoodglass
Posted

I was firmly diagnosed celiac in 2002. I have had DH since childhood. I had a fantastic resolution of a myriad of health issues, most autoimmune related. I didn't have my gene test done until I had been gluten-free for almost 5 years. By US gene standards I could never develop celiac because I don't have the genes. In other countries I would have been diagnosed celiac in childhood. Gene testing is NOT a reliable test to use to diagnose. We just don't know enough about the genes yet, most doctors don't even know there are now 7 more celiac genes recently 'discovered' and if you use the gene tests for diagnosis many of us will be missed.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,076
    • Most Online (within 30 mins)
      10,442
    Beck21
    Newest Member
    Beck21
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...