Gluten Intolerance Or Celiacs Disease; Does It Matter?

[Slovis]

I have been gluten free since September 2011 and through elimination diets have found that I also have soy, dairy, and nut intolerances. My family thinks I should be tested to find out if I'm gluten intolerant or if I have celiacs. My Dr.said there's no reason as ill be following the same diet anyway. I am very careful for any cross contamination as well as only day what is clearly labeled as gluten free etc ( the agony of messing up is just not an option of choice!!) What do you al think? Is there any reason to have to know? Thanks for your thoughts.

[Monklady123]

I have been gluten free since September 2011 and through elimination diets have found that I also have soy, dairy, and nut intolerances. My family thinks I should be tested to find out if I'm gluten intolerant or if I have celiacs. My Dr.said there's no reason as ill be following the same diet anyway. I am very careful for any cross contamination as well as only day what is clearly labeled as gluten free etc ( the agony of messing up is just not an option of choice!!) What do you al think? Is there any reason to have to know? Thanks for your thoughts.

Personally, for me, I don't care. I had a "questionable" blood test (whatever the heck that means). Then I went gluten free and felt better IMMEDIATELY. A few weeks later my doctor mentioned the endoscopy. The doctor said I'd have to be eating gluten before the test, for at least six weeks! (and I've heard that it really should be even longer). I am NOT willing to do that.

For me, my "diagnosis" is this: "eat gluten and feel terrible; don't eat gluten and feel wonderful." That's all I need. My doctor said clearly I'm gluten-intolerant, and I don't care if there's an official label of "celiac" on that.

[mamaw]

I think as an adult it is a matter of choice.For a child I think they should be tested as schools will need doucumentationto serve the child food, proper gluten-free foods.

Some adults need to have a doctor's seal of approval stamp to make their illness complete & true, others find that feeling better on a gluten-free diet is seal enough for them.A very personal question that each person needs to address ...

The only other reason some need a doctor to state celiac or sensitivity is to rule out other health issues that may be causing a problem. As much as we all want to blame everything on celiac it isn't always the case.. As you already found out you have other sensitivities to other foods.

[jenngolightly]

Cautionary tale: I took my daughter to a dermatologist recently (not Celiac related). His diagnosis was a "rash" and prescribed a cream. He didn't want to give her a confirmed diagnosis of psoriasis or eczema because it would go in her permanent medical records and he said that could have ramifications on her insurance when she got older.

What those ramifications would be, he didn't say.

I guess what I'm suggesting is that if you don't need a confirmed Celiac diagnosis, you should live without it for insurance reasons.

[Skylark]

If messing up on your diet is agony, it doesn't matter whether or not you're diagnosed. You live the same way anyway. That's pretty much where I am. I decided not to get sick and gluten challenge.

[sandsurfgirl]

I personally don't believe one bit in gluten intolerance. I think if gluten makes you sick you have celiac. I was diagnosed with blood tests, but with my 6 year old son, his blood tests were normal, but he was sick from gluten all the time. We took him off gluten by his choice and it all went away. He eats gluten by accident and it's automatic D, often resulting in us throwing his underwear in the trash in the bathroom if we are in public.

And... I tell everyone he has celiac disease. Almost nobody asks about his diagnosis. They take it at my face value. However when they do ask rarely, I lie and say he was diagnosed by blood test. They are on a need to know basis and they don't need to know.

I would never subject myself to a gluten challenge. I think its barbaric and antiquated and ridiculous. If you want a test, get Enterolab done. I know its controversial but at least you dont' have to cause yourself harm.

[Jestgar]

I personally don't believe one bit in gluten intolerance. I think if gluten makes you sick you have celiac.

I would never subject myself to a gluten challenge. I think its barbaric and antiquated and ridiculous. If you want a test, get Enterolab done. I know its controversial but at least you dont' have to cause yourself harm.

My attitude exactly. I figure testing will eventually catch up to the reality we live.

[jeannieknits]

My attitude exactly. I figure testing will eventually catch up to the reality we live.

I'm realizing this as well. My blood panel was negative, (after being off gluten for 2 weeks...hmmmm...) but I have all the symptoms. So I've just started telling people that it's celiacs.

There's no way I'll eat gluten again, so it is what it is.

[spinsterwitch]

Sadly, once you've gone off gluten, it is not a good idea to go back on even for a test. But there are benefits and drawbacks to the diagnosis. The drawback: a diagnosis, any diagnosis, is considered a pre-existing condition by insurance companies, and if the health care bill is ever repealed or gutted, that's the first protection that will fly out the window.

Benefits: With a celiac diagnosis, you will likely find it easier to get the kinds of medical screenings an adult with celiac disease should have (regular blood tests to monitor for vitamin deficiencies and anemia, especially, and bone density testing). Also, there is the possibility down the road that there will be a treatment for celiac disease that may then allow people to eat glutened foods. It's likely if you don't have a diagnosis, then the treatment would not be available to you.

But I am in the same boat you are. I went off gluten and any testing that was done before I did was not showing any damage. I get sick really quickly from gluten and I think that some of the ways it affects me is neurological. I'm not willing to sacrifice the health of my gut and my brain to get "the diagnosis."

I'm also a bit on the side of the person who said they thought that gluten intolerance really is celiac disease.

[jeannieknits]

Sadly, once you've gone off gluten, it is not a good idea to go back on even for a test. But there are benefits and drawbacks to the diagnosis. The drawback: a diagnosis, any diagnosis, is considered a pre-existing condition by insurance companies, and if the health care bill is ever repealed or gutted, that's the first protection that will fly out the window.

Benefits: With a celiac diagnosis, you will likely find it easier to get the kinds of medical screenings an adult with celiac disease should have (regular blood tests to monitor for vitamin deficiencies and anemia, especially, and bone density testing). Also, there is the possibility down the road that there will be a treatment for celiac disease that may then allow people to eat glutened foods. It's likely if you don't have a diagnosis, then the treatment would not be available to you.

it is a "catch 22" type situation. (I have a few other pre-existing conditions that are already making insurance a fun game) but I see your points. it's too bad there isn't a more "efficient" test.