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Son not understanding my diagnosis


Deades

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Deades Contributor

I am 7 weeks diagnosed with silent celiac.  I am doing great and feel like  I have a good handle on everything.  What I am struggling with is my 21 year old son not understanding my diagnosis and the importance of avoiding cross contamination and why all of a sudden I can't have a Cookie, piece of cake, etc..   Since I don't have physical symptoms, he doesn't think it will hurt to have a piece of cake or something else.  He doesn't yet know that I have contacted our doctor to have both my kids blood tested.  Is there any advice on how to convince him the severity of following a strict gluten free diet.


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Jays911 Contributor

When I get glutened, I cough. Loud.  for 20-30 minutes.  Once people hear that, they take it seriously.  Refer your son to the newbie thread. If he still doesn't get it, kick him in the posterior. Hard!  

pschwab Enthusiast

Have him read about the disease and the multitude of repercussions that occur from gluten consumption that have nothing to do with "classic stomach" issues. Not following a strict gluten free diet can lead to terrible diseases because your body will be so weak and damaged. When my son was diagnosed, reading about the disease made a big impact on our family members. Good luck and stay strong!

Victoria1234 Experienced

Tell him asap to expect to get blood drawn next week or whenever the appt. is. My boys never like surprise medical exams!

Deades Contributor

When I was diagnosed, I told both kids they will have to be tested. They don't know it will be happening sooner rather than later.

Gemini Experienced
14 hours ago, Deades said:

When I was diagnosed, I told both kids they will have to be tested. They don't know it will be happening sooner rather than later.

If your son is 21 years old, then I am not sure you can force him to be tested. He's of age. 

It is huge problem.  I have an extended family member whose early 20 something daughter is a diagnosed Celiac and she will not follow the diet.  Her mother is so worried because she is always unwell and in pain but will not follow a strict diet.  Too inconvenient at this stage of the game.  Because of her age, her mother cannot force her to do anything.  This is the hardest part of Celiac Disease.  I wish you a lot of luck convincing him!

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    • Samanthaeileen1
      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? 
    • Wheatwacked
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      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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