Hi I'm New And I Have A Few Questions

[Nikki'smom]

Hi I am new here. I just found out my 7 yr old daughter probably has Celiac's. she has been Lactos intolorant for a while now but she was still having tummy aches where she was doubled over in pain several times a week. So I figured maybe it was a milk allergy not just intolorance so I took her to my son's allergist and she found tons of air allergies but no food one. She suggested her being tested for Celiac's. Os I researched about the disease and she had several odd sympotms the one sticking out the most is yellow teeth. I have her brush twice aday but even brand new teeth have been comming in yellow. That added to the fact she is tiny for her age and my husband has had his colon removed because of Ulcerative colitis, I also have an auto immune disease so chances are one of our kids will have one. Any way her ped ordered the tests and both came back showing she had Celiac's. We went to a ped gastro last Friday and she told me since both her test came back with elivated levals she is 90% sure she has celiac's but still wants to scope and biopsy her on Wed.

What are the chances that one they go inside it will show no celiac's? Has this happened to any one?

The gastro seemed pertty sure she had it and even started refering me to a dieticain. My cousin is one so thankfully I have that covered.

When I asked the dr if for what ever reasin she had a false positive and when they scope her they don't see anything that look's like celiac's what else could it be? She skirted the issue. I couldn't tell if meant something more serious or if she was really certain this was it.

Is it possible for the 2 main blood celiac tests to come back positive then not have it?

Honestly if she has it then that is fine we will deal with it as a family and count our blessings it isn't something wrose! I am sure it will be no walk in the park but thankfully she likes to try new things so that is great!

Sorry for all the questions my head is just spinning right now from all the research I am doing.

[Guest j_mommy]

She has celiac!!!!! The blood tests are enough, although the biopsy is the gold standard for DX. Also there is a chance to get a negative read on biopsies...if they don't take enough samples(have tehm take atleast 8-10 samples)!!!

Are you going to do a gluten-free house or just have seperate things for her???(She'll need a seperate toaster, if you use wood cooking utensils you'll want to replace those, any cookware that has scratches shoudl be replaced, check her toothpaste)

Also since she has tested positive than you, your hubby and other children should be tested asap!

Books: Living Gluten Free for Dummies by Dana Korn(She also has alot of books that deal with kids specifically)

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Look into your local ROCK group...celiac support group dedicated mainly towards children.

Here is helpful list for shopping....

https://www.celiac.com/st_prod.html?p_prodi...-48107553547.11

(take that with when you go shopping, that way you know what to look for in the ingredient lists)

Okay this was probably an overload of info.....

Welcome and hope all goes well at the Dr. appt!

[Nikki'smom]

She has celiac!!!!! The blood tests are enough, although the biopsy is the gold standard for DX. Also there is a chance to get a negative read on biopsies...if they don't take enough samples(have tehm take atleast 8-10 samples)!!!

Are you going to do a gluten-free house or just have seperate things for her???(She'll need a seperate toaster, if you use wood cooking utensils you'll want to replace those, any cookware that has scratches shoudl be replaced, check her toothpaste)

Also since she has tested positive than you, your hubby and other children should be tested asap!

Books: Living Gluten Free for Dummies by Dana Korn(She also has alot of books that deal with kids specifically)

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Look into your local ROCK group...celiac support group dedicated mainly towards children.

Here is helpful list for shopping....

https://www.celiac.com/st_prod.html?p_prodi...-48107553547.11

(take that with when you go shopping, that way you know what to look for in the ingredient lists)

Okay this was probably an overload of info.....

Welcome and hope all goes well at the Dr. appt!

Thanks for the info! I can never really have info overload! Heck the gastro even asked me at her appointment if I was a nurse because I already knew so much info! LOL

Ever since the allergist suggested celiac's I in my gut just knew she had it. DH and have resigned to the fact she does have it.

With the biopsy sample what are they actually testing for/looking for? will I know some news on Wed when she is done with how she looks inside?

I am so worried about talking to the anisthesiologist because we have a family history of malignet Hypothermia in the family that I never thought about asking to take lots of samples for the biopsy.

I haven't started the gluten free diet just yet I am waiting until the tests are done and we have the results.

It will just be her that goes gluten free.

DH had his colon removed back in 2000 because of Ulcerative Colitis so I am not sure if he needs to be tested. my son and I show no symptoms of it at all. So I might wiat until we have my daughter settled and then move on to us.

how common is it to get a negative biopsy with positive blood tests?

Thanks again for all the info! I am going to need all the help I can get!

I never thought about getting seperate wooden spoons and things! Why is that? Sorry for the stupid question.

She shows symptoms but not always and not alot. At times she shows non at all. I am not sure if she is hiding it because she is really fine, maybe she is over the testuing or maybe she is just used to not feeling well. No clue.

[ShayBraMom]

To mu knwoledge, once the bloodwork shows positive then she is positive and has celiacs (since they not only look at some specific levels which point out damage in the small intestine which will repair itself over time if you keep her on the celiac-diet, they test for the Celiac-Gene and that one can't really be overlooked), it does happen though that bloodwork comes back negative and a person does have Celiac, that's when they usually do a biobsie! But there is alos the much bigger group of Non-Celiacs, people that have the same Wheatsensitivity, and all of the same symptoms, except their Immunsystem does not attack the intestine and they do not have the Celiac-Gene, they just show aqnitobdys to the Wheats and stuff I think!

She has celiac!!!!! The blood tests are enough, although the biopsy is the gold standard for DX. Also there is a chance to get a negative read on biopsies...if they don't take enough samples(have tehm take atleast 8-10 samples)!!!

Are you going to do a gluten-free house or just have seperate things for her???(She'll need a seperate toaster, if you use wood cooking utensils you'll want to replace those, any cookware that has scratches shoudl be replaced, check her toothpaste)

Also since she has tested positive than you, your hubby and other children should be tested asap!

Books: Living Gluten Free for Dummies by Dana Korn(She also has alot of books that deal with kids specifically)

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Look into your local ROCK group...celiac support group dedicated mainly towards children.

Here is helpful list for shopping....

https://www.celiac.com/st_prod.html?p_prodi...-48107553547.11

(take that with when you go shopping, that way you know what to look for in the ingredient lists)

Okay this was probably an overload of info.....

Welcome and hope all goes well at the Dr. appt!

[Nikki'smom]

I thought I would add my daughters labs/bloodwork :

Transglutaminase IGA AutoABS >100.0 (referance range <4.0

endomysial IGA AUTO ABS >=1:16 (referance range <1.10

I believe those are the 2 main ones for Celiac she had 2 others that came back fin but the gasrto said they were good info to have but not needed to tell if it was celiac.

she did have another blood test at the appouintment last week for anemia and some other things which I am not sure about but will get copies when they come in. She had anemia when she was younger and she bruises so easily so the dr thinks she might still be.

Thanks again for any help that can be given!!!!

[gfpaperdoll]

your daughter has celiac via positive blood test, end of story she will require a gluten free diet for life.

they are doing a biopsy to find out how damaged her villi are. They are also doing it because that is the norm in the medical field & they can get the money for the tests, & you are letting them do the test. they did tell you that you have a choice right?

It sounds like the rest of your family should also be on the diet, which is much easier to keep a gluten free house. Especially your hubby, who has already lost his colon, it could be his stomach & throat next, not counting getting a bunch of other complications...

those tests are her blood test results not the gene tests, did they test her for the celiac genes?

you are right to get copies of all labs for your files. You might also consider getting you, your son, & hubby scopped also & blood tests for celiac...

[Nic]

Hi, like your daughter, my son's blood was positive too. The gastro said he was extremely certain it was celiac because his levels were through the rough and my father has it as well. He was treating the biopsy as a confirmation. It came back negative. The doctor was shocked but instead of just believing it he sent the biopsy (the same one not a new one) out to Columbia University because they are the experts and they said it was positive. Interesting though that the first lab said negative. How many other people with a negative result on biopsy used the regular run of the mill labs because thats what the insurance covers instead of a specialty lab? So basically, don't believe a negative biopsy. With her blood being positive, make her gluten free no matter what the biopsy says.

Nicole

[Darn210]

My daughter's blood test was positive and her biopsy was inconclusive. Her blood test also showed low iron and protein. The biopsy showed issues with processing sugars. So reading between the lines, her doc said that she is showing some malabsorption and a little damage (since sugar processing had been reduced). He gave her a positive diagnosis.

We went for a second opinion. The second doc decided that the biopsy was officially negative but since the blood test was positive then she has it - it's a really accurate blood test. He had said that if it had been him, he would have redone the blood panel to verify, however, we were already a month into the gluten-free diet at that point. A factor that clouded the situation is that she had the stomach flu about four days before her scope. His opinion is that we should do a gluten challange after going gluten-free for 6 months and verifying through a blood test that her blood levels are back to normal.

First doc's opinion is that the blood test that they do now is very accurate and one of the best in the whole medical field. The one they used to do before had a lot of false positives and false negatives and needed verification through biopsy. He figures that in the next ten years or so as the data proves itself, that they won't need to scope to obtain/verify a diagnosis. (I'm sure they'll find another reason to scope - to document your baseline condition or something).

Since then, I've taken my son in for a blood test. He has one of the celiac genes (as does 39% of the population per the lab report - having a gene doesn't mean you have celiac disease) and a partial positive serology. The GI (first doc) wants to see him so we go in about 3 weeks. The doc said that the blood testing of the family would basically provide more evidence for my daughter's positive diagnosis. We plan on continuing down the path with my son and as the evidence mounts, then it will be my husband's turn. He has acid reflux - which is the symptom that we took my daughter in for - his father has acid reflux and his brother has IBS. SO, if the kids have it . . . it's pretty obvious which side of the family it came from

I would expect that they won't be able to tell you too much immediately following the endoscopy unless your daughter has enough damage that it's visible during the scope.

New cutting board, new strainer, get rid of pots & pans that have a nonstick coating that is scratched up - that's because you can't adequately clean them so gluten could be imbedded and then contaminate what ever you are cooking.

At this point, we are not a gluten free household. I don't find it to be too big of an issue. The main items that are different are the breakfast cereal and bread. We DO maintain different jars of peanut butter, cream cheese, butter and such because of crumb contamination. The pantry is all gluten free and there is one cabinet that holds the gluten stuff. My baking is gluten free - I would worry about letting wheat flour loose in the kitchen. I told my husband that if my son has to go gluten-free, the whole house will go gluten free at that point.

Here is some interesting info from our first ped GI doc. He's been out of school for about 8 years. He said that when he first started practicing, their office diagnosed about 3 kids a year. These were kids with skinny limbs, bloated bellies and explosive D. In other words - just like the text books describe a "classic" case. He said that now, in his office, they routinely screen for Celiac when the patient has general GI symptoms with a variety of potential causes. They now diagnose about one child per week.

[Nikki'smom]

Thanks so much for every one's input!

Once everything is settled with my daughters situation and we are all adjusted to the guleten free life style for her then i will probably start having us all tested but right now I just need to get her settled then go from there.

Any more advice suggestions is wonderful!

When you little ones went for their scopes/biopsys were you able to be with them? Unfortunatly my DH is out of town this week and this diagnosis has been moving so fast he couldn't change his bussiness trip so I am doing this all alone right now. If i can be there i want to be ther and she wants me there but i do have my 5 yr old. I have no real help with the kids because our family is all in different states!

[dandelionmom]

Hi!

I'm pretty new to all this too (my 3 year old was recently diagnosed) but we're learning! I wanted to recommend a book that my girls really like called Eating Gluten-free with Emily. I can't help with the biopsy questions; we decided to forgo that procedure.