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How Do You Convince Some One To Test?


rat toe

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rat toe Rookie

Hi, my name is Becca, and I've had celiac for about a year now. I didn't have any symptoms, but I'm type 1 diabetic so they screened me and caught my antibodies for celiac. The problem I'm having is that even though I have celiac, and no one else in our family does, my parents refuse to test my teenage brothers for it. After all the research we have done, and all the doctors we have seen, my parents still think that it would be too much for my brothers to "handle" if they had to go on a gluten free diet as teenagers. The silly part is is that there is a very good chance the tests could even come back negative! I was just wondering if there were any parents (or teenagers) who are currently going through testing and if any of you had siblings who had celiac and were tested because of them.


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mari-lyn Rookie
Hi, my name is Becca, and I've had celiac for about a year now. I didn't have any symptoms, but I'm type 1 diabetic so they screened me and caught my antibodies for celiac. The problem I'm having is that even though I have celiac, and no one else in our family does, my parents refuse to test my teenage brothers for it. After all the research we have done, and all the doctors we have seen, my parents still think that it would be too much for my brothers to "handle" if they had to go on a gluten free diet as teenagers. The silly part is is that there is a very good chance the tests could even come back negative! I was just wondering if there were any parents (or teenagers) who are currently going through testing and if any of you had siblings who had celiac and were tested because of them.

It is hard to handle when people are in denial about this. I started a support group a couple of years ago. Lots of the members have siblings and children who will not go get tested because "they cannot live like that". Well, knowing that not following a gluten free diet if you do have celiac is setting you up for all sorts of health problems and possibly cancer and early death, it is important to be a little persistant. Can you talk to your brothers? Maybe they can convince them. If they are having some classical symptoms like diarrhea, stomach pain or an unexplained rash then they really do need to be screened. Though if you read here you will know that some people with celiac disease do not have any symptoms.

Good luck.

mouse Enthusiast

I know that we have many teenagers on this forum that follow the gluten-free diet. As you know it is really not that hard of a diet. It just takes getting used to, to what you can and cannot have. I wish I had been diagnosed when I was young. I was sickly from birth. Told I had this, this and that and put on lots of different drugs from midlife to the Celiac diagnosis. I became the typical Celiac before I finally got diagnosed at age 62. I think that your parents need to know that undiganosed Celiac can (but not always) cause so many other auto-immune diseases. If you look below, my signature lists way too many diseases and most of them came after the Celiac diagnosis. I would think that they would not want your brothers to go through any of this, if diet can prevent it. And like you said, the tests could come up negative. Good Luck.

ravenwoodglass Mentor
I was just wondering if there were any parents (or teenagers) who are currently going through testing and if any of you had siblings who had celiac and were tested because of them.

As a celiac parent I insisted on testing for both of my children. They were both positive. After over 3 years we convinced their Dad (asymptomatic) to get tested, positive also. My Mothers family refuses to hear anything about needing to be tested though as does my DH's very obviously celiac brother. All family members of a celiac need to be tested but ya can't hold them down and force it on them. Maybe someday the US will wake up and we will test routinely like other countries do. We would be a much healthier and wealthier country if we did.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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