14 Mo Old Tested Over The Weekend...

[thehauffamily]

Ok, we will know officially today or tomorrow if our daughter is celiac. Our gi dr is pretty positive she is based on her symptoms. And I have a TON of questions I hope someone can answer. Im literally in tears and have no idea what im going to do if she is.

Little back story...

She is 14 months currently and ALL of our children have milk protein allergies from birth (no big deal special formula and they outgrow it by a year). WRONG not with this child.

She constantly was a spitter/puker so bad she had to sleep straight up bc she would gag and stop breathing! It was the scariest thing ever! So we finally got the under control (as much as it could be) and we started feedings her puffs and she started breaking out in hives and her eczema was flaring like crazy (again we thought no big deal ALL our kids have had eczema).

So little by little we started feeding her foods you are suppose to start with babies and she has a egg allergy, milk allergy, and gluten allergy.

We saw a nutritionist (waste of time and money).

With our own trial and error we have learned that she cant have store bought eggs but she can have farm fresh eggs. She can have almond milk but not regular milk. Gluten is the ONLY item we have yet to figure out.

So here are my questions...

Can she still be celiac with a neg test?

Why can everyone else in our house have gluten but her?

should the rest of the family be tested?

Is there nutritionists that specialize with gluten allergies?

What is the next step?

Where is the best place to start researching and finding resources?

What if my husband and I are celiac also and have been eating gluten this long. What kind of damage have we done to our bodies?

What kind of damage be caused if she continues to eat gluten?

Im sure I have more questions but this is all I can think of for now.

[w8in4dave]

Aweee I hate it when babies are sick! I am so sorry for your problems and struggles! Lets hope this test brings them to an end! Your answers are with a negative test she could still be intolerant. Has she been eating Gluten this whole time? If no than the test can be negative. the 2 question is everyone eles can eat Gluten because they are not sensitive to it. And yes I'd def. get the rest of the family tested. You can have Celiac and not have symptoms. The nutritionist?? I havn't a clue about ! Never seen one! Next step is to wait on the results and then go from there. This is the best place I found to find info and resources read the newbie 101 page.  Gluten causes damage to the villi in the small, it keeps you from absorbing vitamins and minerals therefore you start having problems. Celiac can trigger any time if you have the gene. Some get alot of damage some find out before they have damage. There is no real answer. The good thing is it is all controlled with diet. So I would relax and wait for the results. Listen to the smart people here that have been doing this for years. And read Newbie 101 page. wait for her results. 

[1desperateladysaved]

Firstly, The damage from celiac is reversible.  If one does have it, and follows a gluten free diet, their body can  heal even after very much damage.  If your daughter has it, the whole family should be tested with a full panel celiac blood test..  You should do what you can to learn about it.  You are off to a good start checking in here.

 

It is okay to start out overwhelmed.  Most of us have started that way.  Now is the time to concentrate on getting tests for everyone and learning about how to follow the diet.  One can have many intolerances and still find things to eat.

 

I am hoping your family will have definitive tests and that you can solve the health struggle of the dear 14 month old.  If she has celiac she will be at an advantage if she does find out when she is young.  I request that you keep us up to date and ask any more questions you have.  I trust the Newbie thread (recommended) will help with many of them.

 

Dee

[StephanieL]

Having Celiac disease is not a gluten allergy. They are two very different things. Also there isn't an actually gluten allergy, it's usually a wheat or barley allergy, not gluten.  As of now, only one of the people in my home has Celiac disease though that can always change. The way genetics works is that if they have the genetics they can convert to having Celiac at any time (there is usually a triggering event though no one is exactly sure what they may be).  They recommend testing every 3 years for first degree relatives or if they exhibit symptoms.  If you child hasn't been consuming gluten, the testing isn't going to be accurate. You must be eating a fair amount for the tests to be accurate.  I have found the nutritionist we've seen (there have been a few) useless. Once I walked out with a bag of cookie samples and the other with bribery "bucks" to make my kid eat more.  Needless to say I haven't ever gone back.

 

Also, this is kind of a pet peeve on mine, but your child, should they have Celiac disease, isn't "a Celiac". They are a child WITH Celiac disease.  Would you call a person with cancer a cancer?  IT was a principal stressed in nursing school as well, never call a patient by the disease which they are diagnosed with. They are NOT a disease, they are a person.

[cyclinglady]

I need more information please! Are you saying that she has been gluten free for the past few months? Blood tests are screening for antibodies and if she was not eating gluten for months, it will be invalid and it is tough enough to catch in little ones. Check out the University Chicago's website regarding testing. She would have had to been eating the equivalent of a slice of bread or two per day.

[thehauffamily]

No we have more or less been keeping her gluten free since before her first birthday. She does randomly grab something that her siblings eat but not often (not a slice bread worth). She has eaten an Oreo,honey nut cherrios and pretzels with no reaction.

When she eats wheat flour she has no reaction when she eats white flour she breaks out in hives. I have my own conclusion about what is happening to her but the gi dr is convinced she is celiac so we had her tested.

Just called the gi office and the results wont be in till Thursday bc they had to send them out. Will be the longest week ever.

[kareng]

Oh dear!  It is hard enough to get accurate results on one so young, but to have been gluten-free for 4 months?  A person should be eating a "regular gluten diet" for 12 weeks before a blood test.  That is for adults.

 

 

Open Original Shared Link

 

Antibody tests are only accurate when a patient is on a gluten-containing diet. Those concerned about celiac disease are strongly discouraged from starting a gluten-free diet without having had a firm diagnosis. Any change in the diet, even for as little as a month or two, can complicate the diagnostic process.

[cyclinglady]

I think you need to do more research on celiac disease. My only symptom was anemia (low blood hemoglobin). I had no intestinal issues at all. I was shocked to have been diagnosed based on my doctor's hunch.

Pretzels and Oreos are made from plain old white flour and yet you say she does not get a reaction... How can that be? That does not sound like an allergy to white flour but it could be celiac disease.

[nvsmom]

Welcome to the board.

 

You asked:

Can she still be celiac with a neg test?

Yes. False negative results are more common in babies and toddlers than in adluts. To help avoid false negative, doctors will do many tests like DGP IgA and IgG, tTG IgA and IgG, EMA IgA, and sometimes AGA IgA and IgG. You would want the control test of total serum IgA run as well.  When you get her results, bring them to us and we might be able to help you with the info.

Why can everyone else in our house have gluten but her?

She was just unlucky. Those with celiac disease have a genetic component that predisposes them to autoimmune diseases, and that could be found in others in your family. If you have family wth hypothyroidism, rheumatoid arthritis, lupus or diabetes, that's the genetic component.

 

And celiac disease can develop at any time of life so even if no one else has it now, there is a chance they could develop it... or already have but are not displaying obvious symptoms. It would be a good idea to get everybody tested if she has celiac disease.

should the rest of the family be tested? 

Yes. If they are eating gluten, they should be retested every couple of years or as soon as symptoms appear.

Is there nutritionists that specialize with gluten allergies?

There actually is no such thing (that we know of) as a gluten allergy. Poeple can be allergic to wheat or barley, but not the gluten. A gluten sensitivity affects the IgA and IgG parts of the immune system. An allergy is IgE based.

 

And no, I do not know of any nutritional specialist who could help with that... To be honest, most people around here have found that a nutritionist's knowledge of celiac disease is often less than their own.

What is the next step? 

Waiting for the results. Even if the results are negative, you might want to consider a gluten-free diet for her. Give it a good 6 month trial before judging it's effectiveness OR have her eat gluten for a good 8-12 weeks and redo the tests. It sounds like she was not eating enough gluten for an accurate test result.  

Where is the best place to start researching and finding resources? 

Here is good. I really liked Dr Green's book. The library has a lot on celiac disease and gluten-free eating - it's quite a "trendy" disease right now.  LOL   

What if my husband and I are celiac also and have been eating gluten this long. What kind of damage have we done to our bodies? 

Hopefully none. Some end up with other autoimmune diseases, joint issues or nerve problems.  Long term damage is not really the norm, I think.

What kind of damage be caused if she continues to eat gluten? 

Failure to thrive, pain, bloating, headaches, nausea, diarrhea, constipation, short stature, fatigue, rashes, intestinal villi blunting, other autoimmune diseases, anemia, nutritional deficiencies, ataxia, cognitive issues, ADHD like symptoms.... Most of these are reversible with the gluten-free diet but some of us who were misdiagnosed for a few decades have symptoms that have stayed. The faster a celiac is off gluten, the better.

 

Best wishes.

[thehauffamily]

Oreos maybe I havent looked at ing as she's not suppose to have them pretzles the ones we buy are made from wheat flour.

[StephanieL]

Okay... so....

 

1) she's eating eggs (so she's not allergic)

2) can eat wheat with no immediate reaction (not a wheat allergy)

3) can't do dairy

 

What are her signs and symptoms that are making the Dr. believe it's Celiac? I'm a little confused I'll admit.  From your story you aren't going to get any accurate results from the testing the Dr. did because of being off of gluten.  I am just curious as to why they think that's the problem?

[thehauffamily]

Thanks for the help everyone, we are going to continue Gluten Free since she's having some reactions to gluten. We will wait for the results and then go from there! Thanks everyone!

[mommida]

The ped gastro. doc will be suggesting an endoscopy with biopsy.  (It is used as a "gold standard" for Celiac diagnoses.  Unfortunately a lot of GI issues present with the same symptoms.  You have noticed a connection to certain food "triggers" and that is very good and observant.  Keep up the good work and keep a food journal.  People with Celiac tend to have some additional food intolerances.  These food intolerances may be temporary, until the gut heals when starting a gluten free diet.)

[thehauffamily]

Ok her results are in! I have no idea how to read them~

 

Her CBC was normal and her

 

IGG- 1.3

IGA- <1.2

 

??? Since there was SOMETHING what does that mean? Should we still stay gluten-free since she has a reaction to some gluten? Waiting for dr to call back but hoping to get insight from others that have been thru it before.

 

Thank you

 

 

 

 

 

[thehauffamily]

Test results are in and posted in another post... someone please help me understand them!

[kareng]

You need the ranges but it looks negative - not surprising considering the age of the child and the fact that she has been gluten-free for months.

[kareng]

Test results are in and posted in another post... someone please help me understand them!

 

 

Let put all the info together so it makes more sense and everyone has all the info

[thehauffamily]

thank you Kareng

[thehauffamily]

Let me find the ranges but yes everything said "negative" but I wasn't sure since there was SOMETHING registering if that was normal or not

[thehauffamily]

Ok

IGG <6.0

IGA <4.0

Is what the ranges are suppose to be. So she is considered Negative, but since she has been 95% gluten-free (besides the few sneaks here and there she gets of her siblings and pretzels) but since there was SOMETHING there I'm not sure how to read it

[kareng]

Ok

IGG <6.0

IGA <4.0

Is what the ranges are suppose to be. So she is considered Negative, but since she has been 95% gluten-free (besides the few sneaks here and there she gets of her siblings and pretzels) but since there was SOMETHING there I'm not sure how to read it

 

 

I don't think it ever reads "0".  

[thehauffamily]

Ok that's what I needed to know

[nvsmom]

Ok her results are in! I have no idea how to read them~

 

Her CBC was normal and her

 

IGG- 1.3

IGA- <1.2

 

??? Since there was SOMETHING what does that mean? Should we still stay gluten-free since she has a reaction to some gluten? Waiting for dr to call back but hoping to get insight from others that have been thru it before.

 

Thank you

 

I don't believe those are celiac disease tests.  :(That's just to measure levels of immunoglobulin A and G, unless they say antitissue transglutiminase or deaminated gliadin peptides or endomysial antibodies or anti-gliadin antibodies along with it. 

 

The IgA is considered to be a control test. About 5% of celiacs do not make enough IgA for the IgA based tests (tTG IgA, DGP IgA, EMA IgA) to be accurate, so that's why it is checked when testing for celiac.

 

I think you may need to request other tests, unless I missed something about which tests were done.  

 

Best wishes.

[kareng]

I don't believe those are celiac disease tests.  :(That's just to measure levels of immunoglobulin A and G, unless they say antitissue transglutiminase or deaminated gliadin peptides or endomysial antibodies or anti-gliadin antibodies along with it. 

 

The IgA is considered to be a control test. About 5% of celiacs do not make enough IgA for the IgA based tests (tTG IgA, DGP IgA, EMA IgA) to be accurate, so that's why it is checked when testing for celiac.

 

I think you may need to request other tests, unless I missed something about which tests were done.  

 

Best wishes.

I was hoping she would type the whole thing. I thought maybe it was the IGA and IGG version of a test and she didn't put the whole thing.