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To Test The Family?

rat toe

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rat toe Rookie
rat toe
Posted

hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

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lovegrov Collaborator
lovegrov
Posted

Don't know if this will help you, but all celiac experts and the NIH conference on celiac say that ALL first-degree relatives need to be tested. All of mine were, and my 70-year-old father with no symptoms was EXTREMELY positive.

richard

chrissy Collaborator
chrissy
Posted

after we suspected celiac in one child---i had the rest of my kids tested---we discovered that we have 3 children with celiac instead of just the one we originally suspected to have it. i would strongly recomment your parents test your brothers adn themselves for celiac every few years.

jenvan Collaborator
jenvan
Posted

Definitely have your immediate family tested...they have a 1 in 22 chance of having celiac disease b/c you do. (This stat applies to immediate family).

momothree Apprentice
momothree
Posted

Our son tested positive for celiac in May and it was recommended that our oldest daughter get tested (youngest daughter is only 2, so we will test her when the outcome is more reliable). Our daughter also tested positive, and had absolutely no classic symptoms. It's definitely a good idea. In hindsight, we can see some of the subtle symptoms that she had/has (only been gluten-free for 1.5 months) such as being tired all the time and grumpy much of the time, as well as brain fog. Of course, we are only speculating at her symptoms since most of them could also be personality issues. Another few months of going gluten-free should answer that question for us. ;)

Confused in Iowa Rookie
Confused in Iowa
Posted

Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

rat toe Rookie
rat toe
Posted
  • Author
Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

Hi confused in Iowa,

I'm 17 and I've had diabetes for about 2 1/2 years. Its gone incredibly well for me. I play tennis and lead a very active life. I do have the occasional lows or highs, but that is expected. Its great that your son is doing so well with his. my celiac was caught with just blood work, and then an endoscopy. I have no symptoms of celiac. I have been on the diet for almost a year now, but i see no change from how i felt before. Maybe as I get older I will begin to have syptoms, but who knows? Is your son doing ok on his new diet? I can recommend some great gluten-free foods if you would like. I know its tough sometimes, but sticking to it pays off :) good luck!

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elizmuller Newbie
elizmuller
Posted
hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

This is my first reply ever to a message board! But I think this is a really important topic... My daughter was diagnosed with celiac disease last year at age 4 b/c she had quite a few obvious celiac symptoms. Just for kicks, we tested the rest of the family. To our surprise, our 3 yr old who has NO symptoms came up very positive, had the endoscopy, and definitely had intestinal damage already.

Our gastroenterologist thinks that b/c a lot of these autoimmune diseases overlap, it's possible we dodged a bullet and saved BOTH our girls from getting other things like diabetes, MS, and rheumatoid arthritis. That's just a theory that's floating around...

But regardless of what teenagers would want to eat, proven possible consequences of untreated celiac disease like anemia, osteoperosis, increased cancer risk, infertility, (and possibly increased chance of other autoimmune diseases) should be prevented if possible, and a simple bloodtest might do that for them. I'd DEFINITELY get them tested! Especially since you're asymptomatic yourself. By the way, neither of us parents have it, nor any extended family members so far! It's a mystery how our girls have it, but they certainly do and our youngest has her big sister to thank for getting it caught so quickly. Good luck convincing them!

-Elizabeth

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    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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      By xxnonamexx · Posted

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      By Florence Lillian · Posted

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