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

Everything Fits For Celiac But The Genes

Jennifer Cook-Chrysos

Recommended Posts

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted

I was diagnosed with celiac as a child without a biopsy. My three-year old son has high IGA-antigliadin and tTG antibodies by stool analysis, and my father has been diagnosed with Sjogren's disease. Our family picture seems to confirm my celiac diagnosis, except that my son and I have had gene analysis which shows neither of the main two celiac genes. In the books, it always says that you can rule out celiac if you don't have the genes. I am confused, because I want to take a preventative approach with my son (take him off gluten before he has intestinal damage worth biopsying). But is it possible to have celiac without the genes?

Jen

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

yes it is possible to have it without the KNOWN genes, because they have not mapped all of them and there are documented cases of biopsy confirmed celiac without the known genes.

my personal opinion is that gluten is not healthy for anyone, and keeping your family off of gluten is not only healthy, but smart. The gluten free diet can be a very healthy diet when done correctly, and by eating gluten-free, you also usually end up eating less processed food that is not good for you anyway.

Keep your family on a diet of fresh fruits and vegetables, lean meats and fish, alternative grains like Quinoa, and Brown Rice, Buckwheat, Millet, Tapioca, Teff, Potatoes, Legumes, nuts and seeds... there really is a lot of healthy options that are naturally gluten-free and it's just smart.

tarnalberry Community Regular
tarnalberry
Posted

ditto what nini said - the two known genes cover about 95% of current biopsy-diagnosed celiac cases, not all celiac cases in the world. you can still have celiac, or just be gluten intoleranct. follow your gut, pun intended. :-)

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted
  • Author

Thanks for your replies. Do you trust the Enterolab stool testing approach? My son also had anticasein antibodies. I didn't. Do you think he needs to go off milk, or could this disappear if he goes off gluten? Is casein sensitivity as dangerous as gluten sensitivity?

Guest nini
Guest nini
Posted

I don't have any personal experience with Enterolab, but the science seems to be pretty sound. A renouned Celiac expert that spoke at our last support group meeting, said that Dr. Kenneth Fine's research and science was sound, and that while the medical community currently doesn't recognize it's validity, she sees that changing.

initially many celiacs are lactose intolerant until the villi heal, some are always intolerant to dairy, that seems to be a personal issue for everyone, seems everyone is different when it comes to that. Although if you think about it, the human body is not designed to digest cows milk. Cows milk is for baby cows and nothing else... there is a reason why mammals wean off of milk after infancy. Sure it tastes good, and I'm not personally willing to give up dairy, but if you think about it, it makes sense that we aren't supposed to consume dairy

mommida Enthusiast
mommida
Posted
Thanks for your replies. Do you trust the Enterolab stool testing approach? My son also had anticasein antibodies. I didn't. Do you think he needs to go off milk, or could this disappear if he goes off gluten? Is casein sensitivity as dangerous as gluten sensitivity?

Take him off casein. That means milk, whey, and the whole casein list.

As far as the gene testing... I supposedly don't have the known genes either, but my biological daughter has both DQ2 and DQ8. We have the same reactions to the same gluten foods. You have to follow your gut reaction on this, and someday science will catch up.

L.

Nancym Enthusiast
Nancym
Posted

If you've been off gluten for 8 months or more even Enterolab might not find the antibodies.

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

Celiac.com Sponsor (A8-M):


TCA Contributor
TCA
Posted

I talked to a lady who lives near me who has the same issue. She was diagnosed as a child and doesn't have the gene, but her daughter has celiac and they have the same symptoms. I guess y'all fall in that 5%. Listen to your body!

Mango04 Enthusiast
Mango04
Posted
I was diagnosed with celiac as a child without a biopsy. My three-year old son has high IGA-antigliadin and tTG antibodies by stool analysis, and my father has been diagnosed with Sjogren's disease. Our family picture seems to confirm my celiac diagnosis, except that my son and I have had gene analysis which shows neither of the main two celiac genes. In the books, it always says that you can rule out celiac if you don't have the genes. I am confused, because I want to take a preventative approach with my son (take him off gluten before he has intestinal damage worth biopsying). But is it possible to have celiac without the genes?

Jen

It's very possible to have non-celiac gluten intolerance, in which case a strict gluten-free diet still needs to be followed.

lonewolf Collaborator
lonewolf
Posted

I also have symptoms that point to Celiac, as did my father, but don't have either of the two genes. I know I can't eat gluten, no matter what any gene test tells me, so I stay gluten-free.

key Contributor
key
Posted

My doctor wouldn't even do the gene test on me. HE says that it wouldn't tell you anything, because they haven't identified all the genes for celiac disease. SO just because you don't have the gene doesn't mean you don't have the it. Sounds like you have your answers.

Monica

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted
  • Author

Thanks everyone. No, I don't plan to go back to gluten! But I know from experience that it is hard for kids socially to have food issues, so I don't want to take it lightly for my kids. However, if Enterolab can be trusted, it does seem that he does have immune reactions to these foods, and I am just glad we could catch it early before he gets sick.

My pediatrician thinks I am a little loopy because I went to enterolab against the advice of the enterologist she found for me. My son's symptoms were very subtle, and he already had bloodwork that came back negative. But I really believe medicine hasn't caught up with this yet, and most doctors are definitely not thinking in terms of prevention.

Jen

Guest nini
Guest nini
Posted

I have to agree with you 100% that most Dr's are not thinking in terms of prevention. They are only taught to dx Celiac once it's reached the point of severe damage. Why not listen to patients and look for the clues BEFORE it develops into full blown Celiac?

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.