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Everything Fits For Celiac But The Genes

Jennifer Cook-Chrysos

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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

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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.

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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?

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    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
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      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
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      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
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      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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