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Hi, New Here, 7 Yr Old Dd......

junieb

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junieb Rookie
junieb
Posted

strongly pos bloodwork, dr said between bloods & history we should assume celiac unless biopsy comes out negative, which I don't think anyone expects to happen. I am curious about vitamins for kids and also calcium supplements (she has a metabolic disorder and has had to avoid dairy until recently, so has been on calcium for years). She also has tree nut allergies. We have Whole Foods and Trader Joe's nearby. Thanks!

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Guest jhmom
Guest jhmom
Posted

HI and welcome! I am sorry your daughter may have Celiac, my 10 year old and I were dx 2 years ago so I know what you are going through. I can tell you it seems overwhelming at first but it does get easier.

Don't be frustrated if the biopsy comes back negative as it's very possible it could. A lot of people with Celiac could or could not have positive blood test and/or biopsies. Some have pos blood, neg biopsy and some vice cersa. Celiac is sometimes very hard to dx because it takes time for it to show up in the blood, everyone is different and also because some doctors out there think its a very rare disease.

As far as the vitamins go, Vitaballs (gum vitamins) are gluten-free the last I checked.

Guest nini
Guest nini
Posted
strongly pos bloodwork, dr said between bloods & history we should assume celiac unless biopsy comes out negative, which I don't think anyone expects to happen. I am curious about vitamins for kids and also calcium supplements (she has a metabolic disorder and has had to avoid dairy until recently, so has been on calcium for years). She also has tree nut allergies. We have Whole Foods and Trader Joe's nearby. Thanks!

<{POST_SNAPBACK}>

If the bloodwork is positive you do not need the biopsy! Seriously. I didn't have the biopsy and I KNOW I have Celiac. my bloodwork was highly positive as well. Strong history as well. The only thing the biopsy is going to tell you is IF there is currently damage, with positive bloodwork, she has it PERIOD. The Dr. is operation on outdated information. (A lot of Dr.s still are so don't worry). If the biopsy doesn't show any damage, that doesn't mean ANYTHING with the strong pos. bloodwork. My Dr. said with my history and the strong pos. bloodwork, the biopsy was redundant. And invasive. The only reason he said to do it, was IF I did NOT respond to the gluten-free diet. I started the diet that day.

My daughter's bloodwork was neg. no biopsy, but pos. response to the diet, within days she was a different child. She is now a very happy very healthy 5 year old and would gladly share any snack and meal ideas with you.

Enjoy Life Foods makes some decent Allergen Free /Gluten Free cookies, breads and bagels... not the best, but with nut allergies you gotta be careful.

I found a chewable vitamin for my daughter at Dollar Tree of all places that is labeled free of Gluten right on the label.

junieb Rookie
junieb
Posted
  • Author

Thanks so much for the replies! Our dr is at Columbia in NY. I don't know why he is doing the biopsy instead of just relying on the bloods. I haven't seen the actual test results paper, but the drs offics read the results off to me over the phone - it doesn't look like she had the EMA, which I know is highly specific, but the tT test - I forgot the rest of it...the one that's also supposed to be specific.....was 113, with anything >30 being strogly positive. One of the other less specific tests was strongly positive, and one was neg. Is there anything else this could be if we don't have the EMA? I don't know why the dr isn't repeating the bloods. He did say we have to assume that this is celiac, but he said unless the biopsy is neg. Can she be dx celiac with pos bloods and a neg biopsy if she has been on gluten her whole life? Or does it not really matter whether or not you have an actual dx? I guess I'm nervous to assume for myself without all the tests because what if it's actually something else that would be missed? What if it's somthing that may not require the strict diet? I guess I'm also wishing that she would not have to be on another strict diet, having had to deal with somthing similar thus far. But I know that if this is what it is, she will be 100% gluten-free - I can't imagine having all formed poops!!!!!!! Now that is exciting. LOL what a mom thing to say.

Guest nini
Guest nini
Posted

Yes the biopsy can be negative even with pos. bloodwork. Depends on many factors, in young children and even some adults, sufficient damage hasn't yet occurred to the point that it can be found in a biopsy, also the Dr. could take samples from areas that are not yet damaged and miss areas that are damaged, AND waiting until damage occurs is just asinine IMO...

As far as I know, based on what I've read and what my GI Dr. told me, if the bloodwork is pos. there is not much else it can be. If she responds positively to the diet, then you have your answer. If she does not respond positively to the diet, then by all means, keep searching. But... the gluten-free diet can be a very healthy diet even if it's not Celiac. But with pos. bloodwork, you know at the very least she is Gluten Intolerant.

We need to start trusting ourselves more than medical Dr.s, I mean, how long has the Western Medical Profession been in existence? A few hundred years? For millions of years people have treated their ailments with dietary changes, herbal remedies and other natural remedies. We have an innate intelligence that enables us to heal ourselves if we just learn to listen to the messages our bodies are sending us.

Western Medicine is unproven, that is why they call it Practicing Medicine! LOL!

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