New And Undiagnosed

[Gwensmom]

Hello,

I have been looking around the site and trying to get a sense of everything.

I have at least gluten sensitivities, but not sure if it is celiac.

Both run in my family.

I would like to know for sure if it is celiac, but I don't tink I could handle the gluten challenge.

I am not so sure if it really matters. Maybe to other people, but I know that I am better off staying off gluten.

Is there any other way besides eating gluten for a couple months before getting tested?

I know some people here have mentioned the diagnosis doesn't matter and others think it does.

I'd like to hear why or why not.

 

 

[Scott Adams]

On the negative side, a formal diagnosis can make health and life insurance more expensive, and harder to get in some cases. 

[Gwensmom]

I did not think about it from an insurance point of view. That is a good point. Thanks.

[mamaw]

some  people  just  need  to know  for  positive because  that  is  just  the  way  they roll, if  a  doctor confirms  then it becomes  more  "REAL" to  them  &  their  brain  understands  but  when no  formal dx's  , there is after  awhile  that they  become  skeptical  if  they  truly  have  the  disease...the gluten-free  lifestyle  is  or  does not  become  easy for some...The  mind  is a  great tool but  sometimes  it likes  to play  tricks  on us.....

Some  have  gone  gluten-free  without  any testing &  after  years  still have  problems  only to find out  it  was  another  illness causing  problems...

One  thing  about  going  gluten-free  without  a formal dx's  is  that  not  eating  wheat  has  never  killed  anyone!!!!

[SMRI]

On the negative side, a formal diagnosis can make health and life insurance more expensive, and harder to get in some cases. 

 

That is not true at all.  With the ACA they have removed rating for preexisting conditions as well as denying for preexisting conditions   It is not a reason to get diagnosed.

[Scott Adams]

Thanks SMRI, but life insurance is a different story for sure...and in many countries it would still affect health insurance.

[Scott Adams]

PS - I am in my 40's, and for my life insurance I have been paying a premium amount of a person in their 50-60's, due to my diagnosis.

[SMRI]

Yes, life insurance might be an issue, but not always.

[nvsmom]

I think people like to have a diagnosis because it makes it "easier" to stay gluten-free.  Knowing you can't cheat, once or ever, helps some people stay completely gluten-free compared with those who "think" they should be gluten-free.  For example, I know that sugar does bad things to my body but I have a hard time staying away from it; staying gluten-free requires no willpower at all because I know I can't have it.

 

... and my life insurance costs quite a bit more than my husband's who has a larger policy but no health issues.   I have found life insurance to be more. As a Canadian, I don't know it it would affect health insurance .

[Gwensmom]

I can understand the need to know that I definitely can't have it versus thinking I can't. I am fine without the formal diagnosis. It is going to be tricky with my mother-in-law because she is one for testing everything and she is likely to just believe that it is a choice.

My husband thinks that I should not get tested because of having to eat all the gluten.

Thanks for all the input.

[SMRI]

So just tell your MIL you have Celiac and leave it at that.  

[Gwensmom]

I may have to do that. My husband also told me to just bring my own food because she will not like  having to be careful of cross contamination. She won't get mad at me but she will get mad that she has to do things different.

[BlessedMommy]

You should always bring your own food, unless you have a trained celiac chef cooking for you. 

 

Good point on the life insurance, I guess that there are some benefits to staying undiagnosed. My rate is pretty good. I did tell the guy that I had a TIA, but that it was food related and that the doctor had advised me to avoid gluten to prevent future problems.

 

For me, I don't have a very difficult time living strictly, because my symptoms are severe and scary. Diagnosis isn't an option, because the gluten challenge could kill me. Everybody has a different situation, though. I think that it's better to get a DX, but since it's not an option for me and live just as if I got handed a note from the doctor.

[Gwensmom]

I guess not. I am still learning what to buy and not to buy. There are so many things that I would never think about~ like nuts.

At this point, I can't imagine making it through 2-3 months of eating gluten.

[SMRI]

I may have to do that. My husband also told me to just bring my own food because she will not like  having to be careful of cross contamination. She won't get mad at me but she will get mad that she has to do things different.

 

You should bring your own food anyway.  It's just not worth being sick.  I ate at a place on Friday where the owner's mom is Celiac, she seemed knowledgeable, mostly soups and sandwiches,  understood CC, the whole 9 yards.....ok, should have checked the food out more but I had a bowl of her soup, it was fantastic, but, found out she used cream of mushroom soup--ok, but upon further investigation, the soup was not gluten-free.  To her credit she was appalled, but still...

[Gwensmom]

You should bring your own food anyway.  It's just not worth being sick.  I ate at a place on Friday where the owner's mom is Celiac, she seemed knowledgeable, mostly soups and sandwiches,  understood CC, the whole 9 yards.....ok, should have checked the food out more but I had a bowl of her soup, it was fantastic, but, found out she used cream of mushroom soup--ok, but upon further investigation, the soup was not gluten-free.  To her credit she was appalled, but still...

That is true. I was at the store last night and some foods that I always thought were safe turned out not to be.

[nvsmom]

That is true. I was at the store last night and some foods that I always thought were safe turned out not to be.

Yes... A few years ago a neighbor offered my boys Rice Krispie squares and I declined because they have gluten. She argued with me that they don't and that she made them for her DIL (or was it grandchild) so she knew it was safe... Um, no.  This was before the gluten-free Brown Rice Krispies had shown up in Canada.

[1desperateladysaved]

A diagnosis might help other people believe you really have celiac like unsupportive family members or friends.  They may decide to get tested.  For that reason I sometimes wish I had done more than a genetic test right away.  I felt unable to do a gluten challenge, so I haven't wished to eat gluten again.  It sounds like you have celiac in your family, so you are somewhat more likely to have it than someone without it. 

[Gwensmom]

Yes... A few years ago a neighbor offered my boys Rice Krispie squares and I declined because they have gluten. She argued with me that they don't and that she made them for her DIL (or was it grandchild) so she knew it was safe... Um, no.  This was before the gluten-free Brown Rice Krispies had shown up in Canada.

I did not know regular Rice Krispies had gluten. I don't buy them, but good to know if I decide I want to make treats.

 

A diagnosis might help other people believe you really have celiac like unsupportive family members or friends.  They may decide to get tested.  For that reason I sometimes wish I had done more than a genetic test right away.  I felt unable to do a gluten challenge, so I haven't wished to eat gluten again.  It sounds like you have celiac in your family, so you are somewhat more likely to have it than someone without it.

The reason I think it might be good is for other family members. My MIL already thinks I am wacky because of the way I cook and eat. But, she also thinks I am getting too thin so if there is a medical reason she might be better about it.