Celiac Disease in Toddler- unconfirmed by tests - Page 2

[eastkygal]

I just took my DD2 to a GI pediatric specialist for the same reasons you stated in the first post. Chronic diahrrea and loss of energy along with stomach cramps. She was 11lbs. at birth, dropped to 75%, then 10%... now she is back up to 25%. She is 2 1/2 and weighs 27lbs.
The specialist did the genetic testing a PP was talking about. She told us that if that comes back + that we can tell any family member we have who has digestive problems and irritable bowel that they should get tested also. We will know the results on Tuesday.
She order 9 blood tests and 4 stool samples. She hasn't mentioned a scope yet, and honestly that scares me. But, as others have said to be taken seriously, and to really know, I think I would do it. I hate invasive things, but at this point, for us it might be worthwhile to get to the bottom of it. And then something so siginificant as the major diet change that would have to take place. We are rural... no health food stores. It would be huge for us.
Then, to have the grandparents buy in... Oh, all this makes me nervous.
Anyway, I'm hoping for the blood tests to be definitive and there be no need of going further. I'll post and update about how that goes for us.
I'm so torn about a scope if they suggest it. Our family doctor referred us to the specialist saying that they would want to do one. I was so relieved that I didn't have to decline the scope and she started with the less invasive things.
If you think you are doing well as is, think of it as not messing with a thing that is working.

[Ravenlunatic]

Hi there, I hope you are still reading your responses... and here is my two cents. IMHO there are two things you MUST do.

One is to get this book and read it ASAP!!! http://www.gutandpsychologysyndrome.com/. There is enough online literature to get you started, but really and truely you need to get this book. I am undiagnosed celiac and have been doing a great deal of research. Going GF is a great first step. I would also have your DD go Casein Free and the sooner you can get your DH on board the better. (as an aside, his condition of being able to eat anything should be what is comprimised, not your DD's)

TWo, stop vaccinating your DD if she is in fact vaccinated.

I don't have time to go into all kinds of details, although I would love to. I will check back on this thread later.... and PM me if you like.

Take CARe.

[LeoneLover13]

Thank you Ravenlunatic...love the name by the way :-)....
I have her GF and CF at this point and she has been doing much better, consistently the past week we started CF. CF isn't all that hard for us since I am CF already, but I do feel for DH that he is brought into all our GI issues when he is fine. However, he is very understanding and happy to go along with all the changes to make us all healthier.

DD is not vaccinated so far, we were delaying until she turned two but now she started with this so we definitely won't be starting anything now. Do you suggest that because of the immune deficiency in Celiacs? I know her system will be very compromised right now and I am trying to keep her away from any sick kids, but almost every kid is sick right now.

I am still reading all responses and I appreciate all of them. I am heading over to the link you gave me and will likely get that book too. Thanks for the suggestion!

[Ravenlunatic]

Yes, I did say no vax because of the immune deficiency.  Also, if you dd does have celiac (or presents like she does...) there is a tendency to be 'toxic' already, in that undigested food enters the small intestine, and large intestine and putrifies there... creating a toxic environment that then seeps into the body.  Celiacs and those that present these similar symptoms have enough trouble trying to cope with all the 'poisons' of the undigested food without having things compounded issues like vax preservitives and such to clean out of the body.

Does that make sense?