To Test Or Not To Test?

[Omma]

I am self-diagnosed gluten intolerant as of 12 months ago (after 44 yrs. of health problems). Very sensitive to cc so I'm very strict. My daughter was self-diagnosed 6 months ago and is also very sensitive to gluten at this point. Now, two of her four children are showing symptoms, one especially. After two weeks off gluten her rash, stomach aches, cough and constipation cleared up dramatically (she's 10). When she went back on the gluten everything came back.

Now, the question is: should she be tested for Celiac? Both my daughter and myself wish we would have been tested before going gluten-free as now it's out of the question; we both get too sick. However, from what I read here, the tests are all too often inconclusive and neither of us has insurance.

We would just like to know if this is Celiacs or gluten-intolerance. The not knowing is really bugging both of us...but should it? Should it be enough to know how sick we are when we eat it?

Any advice or insight would be much appreciated.

[ravenwoodglass]

If they are still consuming gluten then yes do go ahead and test being aware that even on gluten there could still be a false negative. Having the formal diagnosis will be helpful to keep them safe in school and later in college.

[mushroom]

The "need to know" is a very personal thing and only you can answer this for yourself. Since the treatment (gluten free) is the same for either condition, the concerns would be (as you are currently experiencing) the genetic component and whether other members of the family have it -- but this can be answered by testing them, rather than you, since you may not have passed on the gene(s) to them. And yes, the testing is not infallible, either blood or biopsy. However, I would recommend that your two grandchildren who are experiencing symptoms be tested, as they will need special accommodations in their education to avoid gluten if they are positive, and a doctor's note to avoid gluten if they are gluten intolerant. Some schools are more helpful than others with the gluten problem, but if they go to college they may be required to subscribe to a meal plan their first year and this will most likely not accommodate their needs.

[Omma]

The "need to know" is a very personal thing and only you can answer this for yourself. Since the treatment (gluten free) is the same for either condition, the concerns would be (as you are currently experiencing) the genetic component and whether other members of the family have it -- but this can be answered by testing them, rather than you, since you may not have passed on the gene(s) to them. And yes, the testing is not infallible, either blood or biopsy. However, I would recommend that your two grandchildren who are experiencing symptoms be tested, as they will need special accommodations in their education to avoid gluten if they are positive, and a doctor's note to avoid gluten if they are gluten intolerant. Some schools are more helpful than others with the gluten problem, but if they go to college they may be required to subscribe to a meal plan their first year and this will most likely not accommodate their needs.

Thank you for your response. I should mention that my grandchildren are home schooled so that's not an issue (at least right now).

Also my son shows some symptoms, so I had his blood tested for antibodies, which came back negative. So, in spite of his symptoms he's choosing to continue to eat gluten because "he's fine".

I've had people ask me "Are you Celiac or "just" gluten intolerant?". This is frustrating as the symptoms and the cure are the same for both. If it's "just gluten intolerance" somehow it's not taken as seriously. I've been asked this at a restaurant and have said "Celiac" because I'm so sensitive and want them to be very careful, but then I feel like a liar...

I guess I'm venting here....this is all so frustrating!

[beebs]

Although there are differences in being Celiac and Gluten intolerance - some disagree, but the fact is that Celiac is an autoimmune disease and if you have one you are prone to more. Also if you are an undiagnosed cealiac eating gluten then you can *trigger* other autoimmune diseases. And risk of cancer is much higher in Celiacs who eat gluten. So there are differences. I am undiagnosed - it drives me mad. And (on good advice from here) have started calling myself celiac - because you are right - they don't take intolerance seriously!

Very frustrating indeed. As you know yourself the tests can come back negative even if they are Celiac. But maybe just get them tested before they go gluten free - because a challenge is far worse. Ya know? I am about to challenge my 2 and a half year old- his tests were borderline - not even negative -and still not enough for a diag. I am not looking forward to it!

[domesticactivist]

With kids especially I think you should get the diagnosis if you can. They haven't been off gluten long, maybe give it one more week of full gluten and get the blood work done next friday?

We took my son off gluten without knowing and there is no way he can go back on for testing. Lucky for us we're homeschoolers, but college and military not accepting his diagnosis could be issues down the line.

I've been gluten-free a year and am now doing a gluten challenge so that I can get tested. I never really felt I had a problem with it in the first place, even so it sucks.

[mushroom]

".

I've had people ask me "Are you Celiac or "just" gluten intolerant?". This is frustrating as the symptoms and the cure are the same for both. If it's "just gluten intolerance" somehow it's not taken as seriously. I've been asked this at a restaurant and have said "Celiac" because I'm so sensitive and want them to be very careful, but then I feel like a liar...

I am self-diagnosed and not about to do a challenge, Since I have other autoimmune disease (psoriatic arthritis) and a gluten intolerant sister whose daughter is diagnosed celiac, I believe I probably am too. I tell people that since no doctor thought to test me I must assume I am celiac. Or the short answer in restaurants - celiac. Not a lie - chances are...... I, too, hate the "just" part of intolerance

[rosetapper23]

If the granddaughter should cheat sometime in the future and her "rash" reappears, you could have a dermatologist do a biopsy (on the clear skin adjacent to the lesion--not the lesion itself, or it will come back negative). If she has dermatitis herpetiformis, then you have your answer--she has celiac....and if she has it, all of you who are "gluten intolerant" probably do, too. Just a suggestion...

[Omma]

I am self-diagnosed and not about to do a challenge, Since I have other autoimmune disease (psoriatic arthritis) and a gluten intolerant sister whose daughter is diagnosed celiac, I believe I probably am too. I tell people that since no doctor thought to test me I must assume I am celiac. Or the short answer in restaurants - celiac. Not a lie - chances are...... I, too, hate the "just" part of intolerance

Hmmm.....so do a lot of people say they are celiac when they don't know for sure but suspect?

[Omma]

If the granddaughter should cheat sometime in the future and her "rash" reappears, you could have a dermatologist do a biopsy (on the clear skin adjacent to the lesion--not the lesion itself, or it will come back negative). If she has dermatitis herpetiformis, then you have your answer--she has celiac....and if she has it, all of you who are "gluten intolerant" probably do, too. Just a suggestion...

Thank you for that suggestion! Why the skin next to the lesion and not the lesion itself?

[beebs]

Hmmm.....so do a lot of people say they are celiac when they don't know for sure but suspect?

I don't think so - but I think those of us who are very likely or probably celiac do.

[mushroom]

Thank you for that suggestion! Why the skin next to the lesion and not the lesion itself?

Because the antibodies they are looking for are not in the lesion but in the immediately adjacent skin. Even many dermatologists don't know this.