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Testing Family Members


~alex~

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~alex~ Explorer

Is it important to get family members tested for Celiac? My dad and brother don't seem to have any symptoms of Celiac disease but I have read here that some people are asymptomatic. I don't know anyone in my extended family who has Celiac so I don't know if the genetic predisposition comes from my dad or mom's side (or both).

So should they just keep in mind that it might be Celiac if they ever start experiencing GI problems or should they get the blood tests now anyway? I'm not sure they would anyway since they are both quite healthy but I might be able to convince them. Does anyone know what the standard practice is for asymptomatic first degree relatives?

Thanks,

Alex


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confusedks Enthusiast

I think if they're willing to get tested, it's a good idea. They may be asymptomatic. I am trying to get family member's tested, and they aren't really open to it, even the one's with terrible GI symptoms. But, I can only make suggestions. So, if they're willing, I would suggest it.

Kassandra

jerseyangel Proficient

Hi Alex,

My gastroenterologist told me that I should talk to all of my first-degree relatives about being tested. Then, he wrote it again on my test results! I think he feels prettty strongly about it :D

It makes sense, since Celiac is genetic.

I've done that, of course, but so far only 2 have been tested. One was negative, and the other is awaiting her results now.

~alex~ Explorer

Thank you for the responses. It has been gnawing at me that I should try to convince my dad and brother to ask their doctors to do a Celiac panel. I don't know how easy it'll be since I don't know the last time either of them have even been to a doctor. Both of them would go to the ends of the earth for me so maybe if I slant it that they would be doing it for me they'll be more receptive. It would put my mind at ease to know that they don't have any silent damage going on. I worry about my guys.

Thanks,

Alex

ravenwoodglass Mentor

I would strongly urge it. There is so much more to celiac than just tummy troubles and often folks won't realize how much it effects them until it is gone. We had all family members tested. The only one who shows up negative is me, all others were positive. I was the most severely ill and have the most residual damage so even if they do come back negative if they become symptomatic they should be at least retested and try the diet.

elye Community Regular

Yep, being asymptomatic means nothing...I had NO symptoms before being diagnosed, except for low iron.

submarinerwife Newbie

After I was diagnosed my mother got tested on her own and tested positive, but she had as many symptoms as I did. My brother and father both refuse to get tested. They say they just don't have the will power to go on the diet and so they would rather not know. I did go ahead and get both of my children tested right away and both have tested negative! It is a huge relief to know, so as just a piece of mind thing it is definitely worth it as well as if you are able to catch it early before damage and symptoms occur.


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~alex~ Explorer

Thanks everyone for urging me to do this. I've been thinking that I should for awhile but kept putting it off. I spent the day with my dad today and told him about how I really thought he should get the blood tests even though he's seemingly asymptomatic. Despite some initial resistance he agreed to do it and he's a man of his work so if he's promised me he'll do it, he will.

But now I'm really worried that he could have Celiac. I don't know how well he'd do with the gluten free diet. He's not the greatest cook in the world and he's pretty set in his ways. And I think it would be much harder to stay faithful to the diet if you didn't have noticeable symptoms. I'm sure he and I could figure it all out if need be but now I just can't stop worrying about him.

Anyway, thanks for all the advice on this matter. I have a feeling my brother might be harder to convince but I guess I'll just have to be persistent.

happygirl Collaborator

Alex:

This is from the Columbia University Celiac Center's website (might be good to have a reference when trying to convince them)

Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

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~alex~ Explorer
This is from the Columbia University Celiac Center's website (might be good to have a reference when trying to convince them)

Thanks so much for that information and link. Both my dad and brother have psoriasis (which I think might be an autoimmune disease) so I guess that makes it even more important that they get tested.

But I hope so so much that they don't have it.

Thanks again. I could use all the scientific info and facts that I can get when it comes to convincing my brother to be tested.

Guest j_mommy

Yup...I had my son tested right away and am still trying to convience my dad and grandma to be tested. My mom promised to have my sisters tested the next time they go in.

It's hard...I'm pretty sure I got it form my dad's side....my Gma refuses...she says if she tests positive it won't matter anyway b/c she will not change her diet!!!

So in teh end you just do what you can to educated your family and hope for the best!

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    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
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    • trents
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    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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