A Newbie

[Deb Cavanagh]

Hello all,

I am new to the forum. My daughter is in the process of being diagnosed with celiac disease. We have had the blood screening which came back positive and are in the process of being referred to a specialist at Children's Hospital in Los Angeles. She has had other blood and stool tests which have all come back normal. After months of doing massive amounts of laundry after the blood was drawn and the stool was sent we started on a gluten-free diet. We saw an immediate change, lets just say I haven't had to change the sheets other then the normal cleaning day stuff. I know we should have waited for the confirmed diagnosis but I just couldn't keep feeding her stuff I thought was making her sick. So, anyway, I am looking for information regarding th reasons for and against a biopsy. I really don't want to put her back on gluten. She is doing better in kindergarten, she is gaining weight and seems much less fatigued. There will have to be very compelling reasons for me to put her on gluten for a month to do the test. So anyway, this forum is great, I have been looking up things constantly. Thanks for all your help and have a great night.

deb

[gf4life]

The reality of it is that it might take more than a month back on gluten to cause damage enough to be seen in the biopsy. It is a personal decision, but personally I think it is barbaric to have to hurt yourself (or your child) just to get a diagnosis. I did it for myself and it was torture to have to go back on gluten. After two months I was horribly ill, but still showed negative on the biopsy. My children's pediatric GI doctor and I decided NOT to do biopsies on the kids for the very reason of having to make them sick again to do it. If they choose to go back on gluten as adults and get retested then that is their choice. As for now we have our Enterolab diagnosis and are all getting healthy again on the gluten-free diet. That is enough. The doctor is monitoring their progress and is backing me up on the need for the diet, but they are not "officially" Celiac. If you want the official diagnosis then you have to have a biopsy, and for most doctors the biopsy has to be positive to get that. I do know of one person on this site who was able to get a diagnosis from her doctor even with a negative biopsy, but that is not the norm.

Let me know how the doctors are at the Hospital in LA. My primary care doctor said he would argue it out with the insurance if I wanted to try to get us to better specialists to get a diagnosis. We are in Fresno and LA was one of the places mentioned, also Stanford and San Fransisco. I opted to do nothing for now, since it would require us to go back on gluten to have more testing. And that is out of the question for me and my kids!

God bless,

Mariann

[Deb Cavanagh]

Mariann,

I will let you know regarding the Dr.'s and Childrens once we get in there. I agree that it seems pretty horrible to put her back on gluten to get a diagnosis when everything else points to celiac. The only reason I would consider it is if there is some other really life threatening thing that the biopsy would rule out and it was the only way to diagnose that. I can't imagine that would be the case, so we shall see. Every other blood test has come back in the range of normal. We just had a blood screening done to check out other things prior to the Celiac screening and Enzyme level blood test so we have covered a lot of ground. We are very hospital savvy as my daughter has had other medical issues not related to Celiac Disease so we are not awed by Dr.'s and such so if we are impressed with Dr. Pietzak(she is the specialist we are being referred to) I will let you know. I did see her name mentioned in a couple posts regarding conferences and studies. Anyway, thank you so much for the response and take care.

deb

[tarnalberry]

The biopsy at that point is a personal choice. Some doctor's won't give a real DX without it, but some will. You may or may not care if you have a real DX, but if she's going to go through school and if you need an 504 (under the ADA, that makes a public school legally follow rules for avoiding cross contamination and the like), you may be required to have a real DX for it... There are pros and cons, and I think more pros for a biopsy for children than adults, but that still doesn't mean it's worth it. Use your doctor as a guide, since he/she would be the one providing documentation on a DX if ever necessary.