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Daughter Diagnosed And Now Have A Few Questions...

fleckapo

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fleckapo Newbie
fleckapo
Posted

hi there. i posted a little while back about whether or not to have the scoping done on my 6 year old daughter and we went ahead with it. she, as we suspected, tested positive. i actually have two questions, one regarding her and one about the rest of us (specifically my husband). so, since the diagnosis, she is pale. i know it's winter and she's pretty white to begin with, but she looks even more pale than normal to me. does this happen to anyone else? i had a CBC done on her to make sure there was nothing else going on, and it was normal. there's no anemia, no deficiencies of any kind. so, there's question #1.

also, upon suggestion, the rest of us in the family got tested. my son and i came back completely normal, and my husband's test came back positive abnormal. my question about this is that only ONE of his numbers was high. with my daughter ALL of hers were high. his total IGA was within normal range, which as i understand is what makes the test valid. the high number was his deamidated gliadin IgA (norm is 1-10 and his was 17.6). his tTg was less than one which is what i remember to be the "real" celiac number. isn't the tTg the one that gives a pretty firm diagnosis?

i tried to call the GI doc today, but they were closed before i realized my question.

anyone have any ideas for me?

thanks! :)

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silly-ack Newbie
silly-ack
Posted

For question #1- I was severely anemic before being diagnosed, so I think my occasional paleness had something to do with that, but I'm not totally sure.

#2- I'm not sure what each of the numbers represent, but my sister had an abnormal test also that sounded similar, and they're going to do the genetic test next, then if that's positive they'll do the endoscopy. Also maybe a retest of the original bloodwork somewhere in there.

If there's any other family members on your husbands side with celiac disease then it's more likely that it's his side of the family carrying the gene, and would therefore make him more likely than you to have it. But definitely ask your doctor also because I only know from personal experiences. Good luck!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

fleckapo- I just read your question posted on the Alerts website so I assume you are from the same area that I am!

I can offer you some advice on your question #1: My 8 year old son has been pale his entire life. After he had been on the gluten free diet for a few months he began to get color in his cheeks (and he actually has cheeks now!). His school picture taken last year and this year look like two totally different kids. I'm not sure how long your daughter has been on the diet (or if she is even on it yet) but I would give it time. If she has been on the diet for awhile and still looks pale I would bring it up at the next doctor visit.

mommida Enthusiast
mommida
Posted

Question 1 Your daughter's endoscopy showed damage. She has not had proper nutrition during the time she was getting damage. She should start perking up some color as she heals on the gluten free diet. Her iron level could have been a bit low, but when the test is analized they look and see it is a Celiac's iron level and dismiss it - because it is not at a life threatening level. (Just happened with my daughter's tests when she was hospitalized for vomitting until dehydration.)

Question 2 Celiacs do not have to come up positive on all pre-screen blood work to have Celiac Disease. * If I am not accurate on the exact test initials some one jump in and correct this. The IGA level.* A Celiac can be IGA deficient, and therefore would never have a positive on this test.

Your husband can now choose to have an endoscopy with biopsy to continue to diagnose Celiac. He must continue to eat gluten for the test to be reasonably accurate. As a parent the first reaction is to clear all gluten from the house to protect your child and not eat it anywhere near her, but he is going to have to eat it to get the test done.

Welcome to the board! It is a great place to get information and support!

CeliacAlli Apprentice
CeliacAlli
Posted
hi there. i posted a little while back about whether or not to have the scoping done on my 6 year old daughter and we went ahead with it. she, as we suspected, tested positive. i actually have two questions, one regarding her and one about the rest of us (specifically my husband). so, since the diagnosis, she is pale. i know it's winter and she's pretty white to begin with, but she looks even more pale than normal to me. does this happen to anyone else? i had a CBC done on her to make sure there was nothing else going on, and it was normal. there's no anemia, no deficiencies of any kind. so, there's question #1.

also, upon suggestion, the rest of us in the family got tested. my son and i came back completely normal, and my husband's test came back positive abnormal. my question about this is that only ONE of his numbers was high. with my daughter ALL of hers were high. his total IGA was within normal range, which as i understand is what makes the test valid. the high number was his deamidated gliadin IgA (norm is 1-10 and his was 17.6). his tTg was less than one which is what i remember to be the "real" celiac number. isn't the tTg the one that gives a pretty firm diagnosis?

i tried to call the GI doc today, but they were closed before i realized my question.

anyone have any ideas for me?

Question one- I dont know..the first thing would be anemia

Question two- I dont know exactly what the numbers mean but your husband could simply be less sensitive than your daughter. Although it is usually genetic it is not always(no one in my family has it) so consider having him tested again.

thanks! :)

MarsupialMama Apprentice
MarsupialMama
Posted

I'm so glad to have found these posts today because my daughter just had a gluten accident recently, and has turned white as a ghost. It really bothered me, but she is not normally like this - only when she gets glutened. She did start getting color in her cheeks after being gluten-free for awhile. Is nice to have these reassurances and reminders that these things happen (because I tend to forget all the symptoms).

ang1e0251 Contributor
ang1e0251
Posted

I just wanted to add about the paleness, one of the surpising side affects of being on the gluten-free diet was that after a few days in, my cheeks had a pink glow that I can't remember ever seeing. That has stuck with me and I am one of the Pale Ones. Also my eyelashes have gotten really long, Weird, huh?

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Worriedtodeath Enthusiast
Worriedtodeath
Posted

My kiddo was extremely pale as well. The cbc is not a blood test that lets you know if there are deficiencies nutritional wise. I had to demand a vitamin test and a couple of other ones Her cbc was fine. Her Vit d was in the toilet along with Vit k, A, and calcium and I forgot what all else. It's taken months but her paleness is no longer that deathly white. We go back in a couple of months to repeat all the vit checks and mineral levels to see if any have come up to normal. You may have to get additional testing to see what her nutritional levels are

And by the way, all of our blood work was "normal" including IGA total. We test negative. But our response to the diet is incredible and startling enough to give us a dx.

buffettbride Enthusiast
buffettbride
Posted

My daughter is also very pale normally, but before her diagnosis, she was wickedly pale. We look at pictures now and wonder how we didn't realize how sick she really was. She also had dark circles under her eyes and yellowing of her teeth, all of which have cleared up since being gluten free. When she gets glutened, that same sickly paleness comes back until it all passes.

New Girl Newbie
New Girl
Posted
My kiddo was extremely pale as well. The cbc is not a blood test that lets you know if there are deficiencies nutritional wise. I had to demand a vitamin test and a couple of other ones Her cbc was fine. Her Vit d was in the toilet along with Vit k, A, and calcium and I forgot what all else. It's taken months but her paleness is no longer that deathly white. We go back in a couple of months to repeat all the vit checks and mineral levels to see if any have come up to normal. You may have to get additional testing to see what her nutritional levels are

And by the way, all of our blood work was "normal" including IGA total. We test negative. But our response to the diet is incredible and startling enough to give us a dx.

I am new and not sure if I can reply here or should have started new. I had a question about the vitamin test you mention above. I have a 6 yr. old daughter with stomach pain every day for last 6 months. End of Nov. had endoscopy done which showed the blunted villi. Immediately put on gluten free diet. Bloodwork came back as fine though. For the past month there have been 5 days that she did not complain. I don't know what we are missing. She is very pale (had no idea until reading this thread that this is related). She is blond and on the fair side so I had not really given it thought. What type of tests did you have done? Did you request this from the pediatrician or the GI?

ang1e0251 Contributor
ang1e0251
Posted

Did you take her off dairy? Most of us have to leave dairy alone for a few months during the initial healing. She might be able to go back to it later. Sounds like the gluten-free diet is helping her but her continued paleness and not continuous days pain free may suggest an underlying problem with dairy. You don't have to test for it, you can just change her diet & keep a food/symptom diet for awhile to note how she is responding to the dietary changes. My daughter was diagnosed through the biopsy taken during her endoscopy. You could already have the results and not know it.

dilettantesteph Collaborator
dilettantesteph
Posted

Just in case you don't know, playdoh, fingerpaint, and lickable stickers all contain gluten. You will have to check everything. Especially at 6 years old. Things she touches will end up in her mouth. My 11 year old kept getting sick until we made the whole house gluten free. My daughter and husband just couldn't be careful enough. Also watch out for contamination in the lunch room at school. They don't clean the tables well between students. My son uses his own tray, recommended by his doctor.

New Girl Newbie
New Girl
Posted
Just in case you don't know, playdoh, fingerpaint, and lickable stickers all contain gluten. You will have to check everything. Especially at 6 years old. Things she touches will end up in her mouth. My 11 year old kept getting sick until we made the whole house gluten free. My daughter and husband just couldn't be careful enough. Also watch out for contamination in the lunch room at school. They don't clean the tables well between students. My son uses his own tray, recommended by his doctor.

Thanks for the tips. I did read somewhere last night on this about play doh and it saved us tonight when she wanted to get it out. Thanks for the tips. Will look into all suggestions. Thank you for taking the time to respond. We appreciate it.

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