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

No Genetic History - Original Mutation?

absullivan6

Recommended Posts

absullivan6 Rookie
absullivan6
Posted

My 2.5 year old was diagnosed this past summer with celiac.  I've always had major stomach issues, so I immediately got the full blood panel which shockingly to me, came back negative.  I don't have active celiac, nor the gene for it.  My husband just got his panel back and like me, is completely negative.
I'm surprised by these results as I know celiac is mostly genetic.  My poor son's luck that he is the original mutation...

Anyone else have this in their family?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Did you get the specific genetic tests done?  The Celiac panel usually doesn't contain that.

absullivan6 Rookie
absullivan6
Posted
  • Author

Yes, they did the full genetic test on both of us.

kareng Grand Master
kareng
Posted

Perhaps he was incorrectly diagnosed?  Does he have a gene? I have never heard of a genetic mutation for this.  It might not be possible....

LauraTX Rising Star
LauraTX
Posted

Was it verified that the son has a known gene for Celiac disease?

ravenwoodglass Mentor
ravenwoodglass
Posted

Is your son improving on the diet? Did they test your total IGA? If you have your results posting them here could be helpful  Have you tried the diet yourself strictly? If you haven't given the diet a trial you should. There are rare celiacs that don't have either of the two most common celiac associated genes. There are non celiac gluten intolerant folks who have to be just as strict with the diet as blood and biopsy diagnosed celiacs. 

BlessedMommy Rising Star
BlessedMommy
Posted

Is it possible to get celiac via a recessive gene?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Is it possible to get celiac via a recessive gene?

A genetic test wouldn't matter if its recessive or not- it finds what genes you have . I Have never heard that there are any recessive

Celiac genes?

BlessedMommy Rising Star
BlessedMommy
Posted

Just curious because my husband and I both have brown eyes and ended up with a blue eyed child. I wondered if celiac worked the same way.

kareng Grand Master
kareng
Posted

Trying to I post on phone -

For example - I think CF is caused by a recessive gene if I remember right? So having 1 gene for CF and the other corresponding gene for healthy - no CF. Both parents give the child a gene for CF - the kid has CF.

Celiac genes work differently. You have 1 or more and they sit quietly and do nothing in 29% of people. In that lucky 1%, something turns 1 or more on and the Celiac fun begins.

Simple genetic explanation from a phone. Lol

kareng Grand Master
kareng
Posted

Just curious because my husband and I both have brown eyes and ended up with a blue eyed child. I wondered if celiac worked the same way.

. But if they looked at your eye color genes- they would see that each of you had a brown and a blue gene. They could match up with 1 from each of you. The genetics of eye color is actually more complex than that, but that's the simple explanation.
  • 2 weeks later...
absullivan6 Rookie
absullivan6
Posted
  • Author

I wanted to update everyone that I had my son's gastro look at my lab results and I do carry a gene.  She explained that the way the labs report things makes it very confusing for people to read, including doctors that aren't gastros.  In this case, my primary care didn't read the report as well as a gastro did and said I was negative.  If anyone else is in this situation I would recommend having a gastro read your report, not a primary care, or some other doctor.

KenzMom Rookie
KenzMom
Posted

Wow! I am glad you found some answers! I totally agree with you on seeing a GI for any of these issues-- I just took my daughter to the GI yesterday and realized that the pediatrician has been very misinformed--as a result, I was misinformed too. I wish I took her to a GI a long time ago! 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. yellowstone
      - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive...
    2. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...
    3. Wheatwacked
      - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have...
    4. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Thanks for your input.
    5. trents
      - trents replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,066
    • Most Online (within 30 mins)
      7,748
    lgcalvitti
    Newest Member
    lgcalvitti
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Celiac disease symptoms

      By Wheatwacked · Posted

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      Thanks for your input. 
    • trents
      Celiac disease symptoms

      By trents · Posted

      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly flareups.
×
×
  • 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.