Should I Get Other Dd's Tested?

[ptkds]

I was just daignosed w/ celiac by a blood test, and my 17 m old dd was diagnosed by a blood test. We have 2 oder dd's ages 9 and 6. I really don't want to put them through the blood test but my dh does. He says he wants to have "proof" that they have celiac because he doesnt' feel comfortable telling people they have it without if being verified, especially for school.

My 9 yr old constanty gets stomach aches and diarrhea. She also gets dizzy at times and she is small for her age. My 6 yr old has occasional diarrhea, but she has a few behaviour problems (gets angry really easy and cries easily). She is also kinda small for her age and she has asthma.

So I made an appointment for wednesday to see their ped, but I just don't think it is necessary. I jsut wanted to test them by putting them on the diet and seeing if there is a difference. My dh is the one that wants to do the tests.

Any suggestions on what I should do? Which one of us is right??

Thanks,

ptkds

[vampella]

IMHO, you are RIGHT. why do the testing if there is such a strong history? Plus, the blood tests come up with false NEG's all the time.

There is no harm in getting them tested but, why does your DH care so much..if the diet works what other proof does he need?

I'm with you, let them be and put them gluten-free.

Char

[Nikki2003]

IMHO, you are RIGHT. why do the testing if there is such a strong history? Plus, the blood tests come up with false NEG's all the time.

There is no harm in getting them tested but, why does your DH care so much..if the diet works what other proof does he need?

I'm with you, let them be and put them gluten-free.

Char

Nicole was diagnosed in july of 06. I had my older dd tested because they have a certain % of having it also,Plus when she was a bit younger she has issues with constipation. We did the blood work and hers it positive also. She is having her biopsy on the 27th of this month.

Celina

[shayesmom]

I was just daignosed w/ celiac by a blood test, and my 17 m old dd was diagnosed by a blood test. We have 2 oder dd's ages 9 and 6. I really don't want to put them through the blood test but my dh does. He says he wants to have "proof" that they have celiac because he doesnt' feel comfortable telling people they have it without if being verified, especially for school.

My 9 yr old constanty gets stomach aches and diarrhea. She also gets dizzy at times and she is small for her age. My 6 yr old has occasional diarrhea, but she has a few behaviour problems (gets angry really easy and cries easily). She is also kinda small for her age and she has asthma.

So I made an appointment for wednesday to see their ped, but I just don't think it is necessary. I jsut wanted to test them by putting them on the diet and seeing if there is a difference. My dh is the one that wants to do the tests.

Any suggestions on what I should do? Which one of us is right??

Thanks,

ptkds

I'm with you on this one. With strong family history like that, it's much SAFER to just get them all on a gluten-free diet as opposed to waiting for a positive dx with blood/biopsy. To be honest, I'd probably be telling dh that if he wants the other kids tested, he needs to go in too. This does tend to be genetic and just because you have tested positive doesn't mean that he also isn't passing on the genes for it.

As for feeling comfortable about telling people about this.....if the children respond well to the diet, there is absolutely nothing dishonest or unjustified in simply saying that the children are gluten intolerant. And it may benefit them in the future when applying for their own health insurance to not have the positive Dx show up on record.

I know that this is fairly early in the game for the Celiac diagnosis and that there are a lot of conflicting emotions that come along with this. I'm sure that your dh is as frustrated as you have been throughout this. But at some point, acceptance will set in and eventually routine and then it becomes second nature. You don't have to get them tested to put them on the diet. Trust me, you and your dh will KNOW if gluten is a problem when you do the diet.

And if it's of any consolation, a little over a year ago....I was really torn about not having a Dx for my dd. But we've found doctors who have been willing to help us in dealing with the school and who are in agreement that dd has serious problems with gluten. Our GP told me 2 weeks ago that he wouldn't recommned the testing now that we've gotten everything under control and dd is thriving. As he put it..."Why go through all the tests just to get a slip of paper telling you to do the gluten-free diet? You're already doing it successfully and have all your answers. You don't need a doctor to give you any more common sense than you've exercised. Celiac or not, your dd cannot tolerate gluten. What else do you want to know?". Now THAT was a first for us! lol! But I definitely agree.

[2Boys4Me]

FWIW, after my younger son was diagnosed my husband, older son (7 at the time), my mom and I all had blood tests.

They all came back negative. (None of my in-laws, nor my brother or sister got tested.)

[Guest nini]

don't put them through testing... with such a strong genetic predisposition and obvious symptoms simply put your entire family on the diet (if hubby objects tell HIM to get tested and scoped but tell him the rate of false negatives is too high)

my daughter tested negative and putting her through the blood draws was VERY traumatic and I would NOT do it again if I had it to do over. I would have put her on the diet as soon as I suspected gluten intolerance instead of waiting for a Dr. to give me permission to NOT feed my child poison everyday.

Here's the thing, I tested positive for Celiac shortly before her 3rd birthday, it was another 6 months before we put her on the diet AFTER her test results were negative... when we put her on the diet, she got well within A WEEK. Proof enough for me.

[chrissy]

i'd do the blood test if it were me. it is just a simple blood draw and the results come back pretty quick. i tested my whole family after we suspected one of the girls might have celiac---and we discovered that 3 of them actually have it. my oldest son has more symptoms than all 3 of the girls combined-----and he does not have celiac. there are other things that can cause symptoms.

[tarnalberry]

a blood test really isn't that awful. I'd do a blood test, and after that, do the dietary challenge (take them gluten-free for a month). this, of course, is predicated on the assumption that you wouldn't bother with an endoscopy. if you would, then blood test, endoscopy if results warranted, or dietary challenge if tests didn't warrant the endoscopy. either way, blood and diet testing. why do I suggest the blood testing? because with kids there *is* an issue getting other institutions to believe you, and just your word may not be enough for them.