Latent Celiac Disease?

[chrissy]

i have been looking up the things that our ped gi talked to us about---especially the increase in intrepithelial lymphocytes. i found an article that said someone that is predisposed to celiac can prolong the latent phase of celiac by consuming a diet restricted in gluten---thus making the blood tests inconclusive. a prolonged latent phase may raise the risks of complications. that is what i read, basically, in a nut shell. i am thinking that since we are waiting for tianna's esophagus to heal and then redoing the bloodwork to check the antibody levels----that maybe i should try and make sure she has lots of gluten containing foods so that we can see if her body is really having a problem with it. she doesn't have any obvious gi symptoms except for the rashes and hives(which drive her nuts), but i have heard it can take sometimes over a year for the rashes to go away even on a gluten free diet. i just don't want to be left in limbo with inconclusive blood work for a long time. i really want a firm diagnosis if possible, because she has 10 brothers and sisters that probably would need to be tested if she definitely has celiac. i really hate it that money and insurance has to play a factor in the health decisions we make for our children.

christine

[Merika]

I would hesitate to feel a child a heavily gluten diet because some medical theory thinks maybe something could result from it. Remember when they told us margarine was healthier for us than butter?

Follow your instincts. If your child is not well, do what you think is best. If you suspect celiac, and health insurance/money will not allow you to get her tested now or in the near future, you can put her on a gluten-free diet and see what happens. It will not hurt her. It may help her. You may find she has additional symptoms than hives that you just hadn't noticed before. And in a kid, the hives and stuff may well clear up sooner than one year. Kids just heal sooooo fast.

Merika

[nettiebeads]

i have been looking up the things that our ped gi talked to us about---especially the increase in intrepithelial lymphocytes. i found an article that said someone that is predisposed to celiac can prolong the latent phase of celiac by consuming a diet restricted in gluten---thus making the blood tests inconclusive. a prolonged latent phase may raise the risks of complications. that is what i read, basically, in a nut shell. i am thinking that since we are waiting for tianna's esophagus to heal and then redoing the bloodwork to check the antibody levels----that maybe i should try and make sure she has lots of gluten containing foods so that we can see if her body is really having a problem with it. she doesn't have any obvious gi symptoms except for the rashes and hives(which drive her nuts), but i have heard it can take sometimes over a year for the rashes to go away even on a gluten free diet. i just don't want to be left in limbo with inconclusive blood work for a long time. i really want a firm diagnosis if possible, because she has 10 brothers and sisters that probably would need to be tested if she definitely has celiac. i really hate it that money and insurance has to play a factor in the health decisions we make for our children.

christine

Uh, she hasn't been doing well on the gluten diet, so why prolong it? If she's better on the gluten-free diet, then that is a positive reaction to the diet challenge, ergo celiac disease. That's how I was dx'd by my gp 9 yrs ago, and I'm not about to go gluten to get a more "official" dx. I would strongly recommend for her the gluten-free diet. And she may not ever have the typical celiac reactions, but the dh proves that she does have celiac disease. The sooner the gluten-free diet starts, the sooner the rashes and such will go away, and maybe she'll catch up to her twin.

[chrissy]

we can't go gluten free yet because she will be having more blood work----we've got to make sure that the damage in her esophagus is cleared up so that it is not changing the results of the blood work. tissue transglutaminase shows damage, but it doesn't tell what is causing the damage. we know from biopsy that her esophagus is damaged. the doc wants to let that heal first. i have a lot of confidence in this ped gi that we see. with her lack of symptoms, neither i, nor i doubt she, would want to go gluten free without a firm dignosis. i feel like our doctor is still looking for the answers-----so we will follow his advice. if we reach a point where i feel like we are not getting answers from him---then we may go gluten free to see her response to the diet.

christine