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

  • 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. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem. Just a few other thoughts. I had debilitating anxiety prior to my diagnosis. I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice: for depression, The Depression...
    2. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations...
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @knitty kitty are you kidding? I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found...
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before. I think maybe the thrush made it worse, I...
    5. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      Oh, my dear! Get off that Fairlife chocolate protein shake! That's got milk in it! Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance. Damaged villi are incapable of producing lactAse, the enzyme...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748
    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
×
×
  • 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.