How To Deal With Unsupportive Friends?

[NoGlutenCooties]

Hi Everyone -

 

I was just diagnosed 10 days ago, via blood test.  Still have to go to the GI doc for the endoscopy (fun!) to "confirm" - but haven't touched anything gluten since I got the word from my primary.  I had to beg her to run the test because I don't have any obvious symptoms.  But I have an uncle who gets violently ill if he accidentally gets glutened.  And my mother has a relatively mild sensitivity.  I'm also 42 and already have osteopenia... which I found out goes along with the whole celiac thing.  So my point in all of this is that being that I do not have an "official" diagnosis AND I have not had any obvious symptoms, a few friends and certain members of my family are in denial and I get asked, "so how much gluten are you going to try to get out of your diet" - as if going half-way is going to solve the problem.

 

There are 2 different things I tell people that seem to get the point across.  First, I compare it to having a peanut allergy - because most people have heard of this and accept it as a reality.  I tell them some people are okay as long as they don't eat a peanut... other people can't even be in the same room as a peanut.  There are varying degrees of the allergy and the reaction.  I may not need an epi-pen, but I can't eat the stuff.  The other thing I tell them is that I prefer not to wait until I have full-blown osteoperosis, or diabetes, or thyroid problems, or severe skin issues, or lose my hair, or get diagnosed with one of the various celiac-related cancers before I stop eating the stuff.  That usually shuts them up.  :-)

[kareng]

Hi Everyone -

 

I was just diagnosed 10 days ago, via blood test.  Still have to go to the GI doc for the endoscopy (fun!) to "confirm" - but haven't touched anything gluten since I got the word from my primary.  I had to beg her to run the test because I don't have any obvious symptoms.  But I have an uncle who gets violently ill if he accidentally gets glutened.  And my mother has a relatively mild sensitivity.  I'm also 42 and already have osteopenia... which I found out goes along with the whole celiac thing.  So my point in all of this is that being that I do not have an "official" diagnosis AND I have not had any obvious symptoms, a few friends and certain members of my family are in denial and I get asked, "so how much gluten are you going to try to get out of your diet" - as if going half-way is going to solve the problem.

 

There are 2 different things I tell people that seem to get the point across.  First, I compare it to having a peanut allergy - because most people have heard of this and accept it as a reality.  I tell them some people are okay as long as they don't eat a peanut... other people can't even be in the same room as a peanut.  There are varying degrees of the allergy and the reaction.  I may not need an epi-pen, but I can't eat the stuff.  The other thing I tell them is that I prefer not to wait until I have full-blown osteoperosis, or diabetes, or thyroid problems, or severe skin issues, or lose my hair, or get diagnosed with one of the various celiac-related cancers before I stop eating the stuff.  That usually shuts them up.  :-)

A bit off subject but you should continue to eat gluten until after you get the endoscopy. I would hate for you to get a negative biopsy and have the doctors refuse to diagnose you with Celiac.

[NoGlutenCooties]

A bit off subject but you should continue to eat gluten until after you get the endoscopy. I would hate for you to get a negative biopsy and have the doctors refuse to diagnose you with Celiac.

 

Thanks Kareng -

I did think of that... but just can't bring myself to eat something I know is doing internal damage.  From what I've read, I would also be very surprised if the damage that has already been done were to disappear within just a few weeks - does anyone know if this is even possible?

I do plan to re-do the blood test in 6 months or so to see if my numbers have come down.

[kareng]

Thanks Kareng -

I did think of that... but just can't bring myself to eat something I know is doing internal damage. From what I've read, I would also be very surprised if the damage that has already been done were to disappear within just a few weeks - does anyone know if this is even possible?

I do plan to re-do the blood test in 6 months or so to see if my numbers have come down.

Depending on the amount and severity of the damage, enough could heal that it would be missed on an endoscopy. just villi grow back in 7-10 days. Same with the little pieces they remove for a biopsy. Please let the GI know you are gluten free. They may decide there is no point in doing an endo and leave you without an official diagnosis. That is your choice, of course.

However, this thread isn't about all this , so back to the topic!

[w8in4dave]

Aweee your just being a friend KerenG But about friends, it will take time for them to adjust