Worried About My Dad

[covsooze]

Both my sister and myself have celiac disease. Dad has had stomach problems (dx -IBS) for ages. He also has arthritis, is always really tired, dark rings under his eyes etc It took a lot of persuasion from me and my sister to get him to have bloods done for celiac disease and they turned out negative. He refuses to have an endoscopy and won't go gluten-free. He's convinced himself that if his bloods are negative, he can't have celiac disease.

Given me and my sister both have it, does that mean one of our parents must have it?

I know bloods can show false negatives, but is this really likely with someone who eats a lot of gluten, and has loads of symptoms and has done for years?

We just don't know how to persuade him to get an endoscopy - we've tried everything. I'm so frustrated, coz I know he could be so much healthier....

[psawyer]

  Quote

Given me and my sister both have it, does that mean one of our parents must have it?

No. One (or both) of your parents must have the genetic factor for celiac disease. That alone does not mean they have celiac. A trigger is required, such as a major infection, surgery, pregnancy, or the like. Unless triggered, there is no celiac. This is why there can be identical twins (exact DNA match) with only one having celiac.

It is likely that your father has celiac disease, as IBS is a very common misdiagnosis. False negatives are common. Unfortunately, you can lead a horse to water, but you can't make him drink.

[Ursa Major]

  "psawyer" said:

A trigger is required, such as a major infection, surgery, pregnancy, or the like. Unless triggered, there is no celiac.

Not true. Sometimes it is triggered after being fine initially, and sometimes it is there no matter what. Otherwise, how do you explain the fact that some babies seem to have celiac disease right from birth? Plus, I've always had it, and so do some of my siblings. Some of us have had trauma that could have triggered celiac disease, others never had anything you could call major trauma before being sick.

So, while your statement is true for many, it isn't always true.

That said, I do agree about covsooze's dad. He could possibly have an AgG deficiency, maybe the doctor didn't do the whole panel, and maybe he just tested false negative. Sometimes the lab tests rarely for celiac disease and they don't know what they're doing. He sure sounds like he has celiac disease.

covsooze, couldn't you convince him to try the gluten free diet? Is it possible for either you or your sister to have him come and visit, lets say for a week, to eat with you? That way he wouldn't feel that it is inconvenient for him, and you could see first hand if it makes a difference. Would he be willing to give that a try? Maybe if he feels a lot better gluten free, he would be willing to do an endoscopy. Or decide he just wants to stay gluten free without it. You never know what he will do once he sees the difference a gluten free diet makes. Assuming it would make a difference, of course.

Maybe you could get him to read about all the terrible things people with celiac disease might die off, if they are undiagnosed, and let him know that you love him, and that you're afraid he might die of cancer if he doesn't stop eating gluten.

[Indea88]

  Ursula said:

Not true. Sometimes it is triggered after being fine initially, and sometimes it is there no matter what. Otherwise, how do you explain the fact that some babies seem to have celiac disease right from birth? Plus, I've always had it, and so do some of my siblings. Some of us have had trauma that could have triggered celiac disease, others never had anything you could call major trauma before being sick.

So, while your statement is true for many, it isn't always true.

That said, I do agree about covsooze's dad. He could possibly have an AgG deficiency, maybe the doctor didn't do the whole panel, and maybe he just tested false negative. Sometimes the lab tests rarely for celiac disease and they don't know what they're doing. He sure sounds like he has celiac disease.

covsooze, couldn't you convince him to try the gluten free diet? Is it possible for either you or your sister to have him come and visit, lets say for a week, to eat with you? That way he wouldn't feel that it is inconvenient for him, and you could see first hand if it makes a difference. Would he be willing to give that a try? Maybe if he feels a lot better gluten free, he would be willing to do an endoscopy. Or decide he just wants to stay gluten free without it. You never know what he will do once he sees the difference a gluten free diet makes. Assuming it would make a difference, of course.

Maybe you could get him to read about all the terrible things people with celiac disease might die off, if they are undiagnosed, and let him know that you love him, and that you're afraid he might die of cancer if he doesn't stop eating gluten.

My Toddler has Celiac, and his father has Celiac, was diagnosed with IBS. My husband refuses testing, the gluten-free diet. He thinks he can eat some gluten and stay away from other foods. He blames the spagetti sauce when its really the pasta, he has every excuse in the world to deny it. No one can convince him, we dont try anymore. Point being, sadly I can relate to your dilemma. Loving someone who refuses to heed the warnings, see the disease as treatable with a diet change!! No drugs, a diet change! I gave up trying to understand this, it is just so frustrating