Asymptomatic Kids ?

[Siobhan]

I'm wondering are there any celiac disease parents with celiac disease kids that don't show symptoms ?

I was dx'd with celiac disease as a baby but when I was 4 a Dr did a test and told my mum it was o.k for me to eat gluten. I'm now 39 and have shown no real symptoms since although I did wonder about my fertility problems and miscarraige ?

My 2 yr old has developmental delays and drug resistent seizures but is otherwise in good health. I have read of a link connecting celiac disease and both these conditons and have always mentioned my history to her Drs. But as I have no symptoms I've always been dismissed and its assumed that the origianl dx must have been wrong.

Last week I went for a blood test just to be sure and the tTG test came back positive. I'll see a Gastro. next.

I now feel I have proof now to demand that my dd is tested.

What do you think the chances are of her being +

Did anyone test have their kids tested that didn't show symtpoms ??

I'm Irish and my dd is 1/2 Irish 1/2 Australian.

Siobhan

[Guest nini]

those things you mentioned, ARE symptoms of Celiac, so you do have every right to demand she be tested, however, keep in mind that testing in young children can be inaccurate. And, you may not want a dx of Celiac on her permanent record for insurance purposes (denial of future coverage). So, search your conscience, Read Dangerous Grains, and decide for yourself if you want to put her through potentially inaccurate testing or just simply try the diet and see if it helps. BTW, the diet is completely healthy.

I was positively dx with celiac 2 1/2 years ago, put my daughter on the diet after a few months. Her testing was inconclusive, but her response to the diet was miraculous. She does react if she gets even a little gluten, so I can't speak to the asymptomatic part, but it doesn't sound like your dd is asymptomatic either. She just may not have gastrointestinal symptoms.

feel free to pm or e-mail me if you want suggestions or help on implementing the gluten-free diet with a child.

[taweavmo3]

Please, please, please get her tested asap, or just put her on the diet. The sz's and dev. delay you mentioned could most definately be manifestations of celiac disease. Some kids present differently than others, not all kids are typical. Unfortunately, most doctors will not test for it (even with family history) unless your child is wasting away. Hopefully your doc is different, but most really don't know much about it.

My daughter also has a dev. delay, she is 3 1/2 now and is slowly making some progress with the diet, therapy, and several supplements. It is an uphill battle, and a gluten accident makes her regress. Gluten can wreak havoc on the brain.......and since your little girl is at a critical brain development stage, I would start the diet as soon as possible.

I think there are some kids that are much more suseptible to neurological problems from gluten.....b/c you can take two celiac kids with similar symptoms, but one has significant delays and one does not. I've been told the delay is from malnourishment, but I don't think that's it at all. I think there is still alot to learn about the neurological manifestations of gluten toxicity, especially in children. So, until more is known....I've also made my 18 month old gluten free for now. His speech was beginning to regress, so I put him on the diet w/out being tested. I'm not taking any chances now that I know better.

Anyway, sorry to ramble! I don't know your dd history regarding the sz's and delay, but IMHO you really have nothing to lose and everything to gain by giving the diet a shot. This board is wonderful, and will help you every step of the way. Good luck!

[Siobhan]

I saw a Gastro today and he'll do a biopsy next week but he said its very liekly I have it.

He said my dd has a 1-10 chance of having it and definitely should be screened. He'll write to her Neuro. with advice on what tests to run. An interesting fact he mentioned was that when a gluten-free diet doesn't work people are put on steroids. My dd is on steroids at the moment for her seizures and is doing really well. I wondering it is that she does have celiac disease and the streroids are damping down the effects ??

I'll wait for my results and then we'll discuss how we go about testing her or should she just go gluten-free ?

Nilsa glad to hear your dd is doing well on the diet. Not sure what kind of insurance you are talking about ?? I'm living in Australia and we have family private health insurance. Since we had this before any of Darah's conditions were dx'd she 's covered. If we didn't have it and went looking for it now i doubt anyone would cover her pre exsisting conditions.

taweavmo3, its encouraging to read that your dd is making progress on the diet.

Cheers

Siobhan

[skoki-mom]

Hi Siobhan

For what it's worth, I am a completely asymptomatic person with celiac disease. So, it is possible to have it and not have any symptoms. I am 36 and I was just diagnosed about 2 months ago. I was concerned about my 2 daughters, and my GP and my GI were both very supportive about getting them both tested. My youngest seems to have a bit of tummy trouble, but my ex and I have recently separated and stress can also upset a child's system. She seems to be fine these days. Anyhow, they both tested negative for tissue transglutimase and for anti-endomysial antibodies. It's a relief, but it is likely they will need screening throughout their lives to keep track of things. Bottom line, I don't think there is anything wrong at all with wanting your children tested. I have not heard of steroids used to treat celiac disease, but they do have a powerful anti-inflammatory effect, so if your daughter has other inflammatory bowel issues, I guess it's possible they could be helping in that way.

Good luck!

[Guest nini]

I currently have Blue Cross Blue Shield, insurance, and they are pretty good, but a while ago I had to do some shopping for insurance and no one else would cover me because of "pre existing" so I stayed with BCBS who didn't require medical info because I previously had a group policy with work that was canceled and was able to switch it to a (more expensive) family policy and just rolled over my existing plan, so they didn't look at medical history. Since I had been covered by them continuously they didn't see a reason to deny me coverage since my claims were tapering off (since my dx!)

if you want any testing of yourself and your daughter to be accurate (your biopsy) her blood tests... you need to be consuming lots of gluten, and so does she... however, if you don't feel the need to have a "diagnosis" via that kind of testing, I suggest the diet is a valid test in itself.

Steroids can "mask" the symptoms of celiac, so if she has been on them it's likely that you are not seeing all of her symptoms.

[aikiducky]

I also wonder whether the steroids could skew the test results? It might be wise in any case, whatever the tests say, to try the diet for a while and see what happens.

Pauliina

[Guest Lucy]

my son does not have symptoms. We only caught it b/c diabetes dr. tested him for it. (he tests all patients for all auto immune diseases.)

[Ruth]

My daughter had NO symptoms... she had very high positve blood test and biopsy results (totally flat villi in 11 samples)

I consider us "lucky" for catching this before she developed symptoms.

Best of luck,

Ruth

[lovegrov]

From what I understand, steroids definitely can affect the results. You can get a false negative because of them.

All first-degree relatives should be tested. If you have it, your children have something like a 1-3 chance.

richard