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QTpieglutenbaby

Newbie Gluten Questions...should We Do The Tests?

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Our daughter had what we thought were allergies since she was a baby. She was born at a normal weight, but by 18 months was labeled failure to thrive. Now at 2 yrs old she is at the 70% for both height and weight.

She had stuffy ears, very very loose mucousy stool (exclusively breastfed) and always had the reddest cheeks and runny eyes and nose - so we figured allergies. When we started her on solid food at 6 month (oatmeal we started with) she had an immediate reaction! Bright red cheeks, runny nose and diarrhea like crazy. So our wonderful ped. told us to stop all solid food and go back to bf exclusively. I'd tried SO many elimination diets already, but this time we cut out EVERYTHING except fruit, veggies and meat...her symptoms were gone very quickly. Then we very, very slowly started adding foods back to my diet - and when we added wheat back to my diet - her symptoms returned immediately. At 10 months we started her on solids - but a wheat free/gluten free diet. Whenever she had gluten/wheat (we weren't that careful) she would show mild signs of what we thought was an allergy - nose, yucky mucousy poops etc. We became ever so diligent about her gluten free diet when she was 18 months old and labeled failure to thrive. She just kept losing weight even though she was eating a good amount of food. Well, since her very strict gluten free diet for the last 7 months - she has gained 10 lbs! YEP 10 POUNDS in 7 months and a few inches! She went from 12months clothes to 3T! She has no more symptoms, and eats about the same as she did before - amount-wise. She is not eating any more food than she did before - she just seems to be digesting it I guess?

We've been to an allergist and had her tested and everything was negative. I REALLY don't want to do any more evasive tests. He says it can't be celiac b/c she too young (2ys) to develop it. But it just seems that the huge 'about face' her growth has done can't be just a coincidence? or can it?

Having known WAY more about celiac then I, would you have the tests done? What do you think? Will they tell me anything I really need to know? Can I just not feed her gluten and wait until she's older? I feel we have a handle on 'whatever it is'...but I was told this would be the best place to ask for advice!

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Your allergist is WRONG! Some babies are born with celiac disease, and started having the damage done in utero already. There are parents of kids here who almost died before they were a year old because of celiac disease.

Testing would be useless for several reasons. To begin with, the false negative rate for kids under six is already quite high. And because your daughter has been gluten-free for so long, the damage will have healed (thank goodness for that). And if there is no damage, she will test negative, even if she has celiac disease.

You know she was very ill on gluten, and is thriving now. Any sensible doctor would diagnose her with at least gluten intolerance on that evidence, no more testing needed. The best test in children that young is the diet trial anyway.

Keep up the good work, you are doing everything right. Don't worry about ignorant doctors! Most of them know precious little about celiac disease, anyway.

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We've been to an allergist and had her tested and everything was negative. I REALLY don't want to do any more evasive tests. He says it can't be celiac b/c she too young (2ys) to develop it.

In my not-too-delicate opinion, that is BOOL CRAP.

Seriously though, I've heard stories before of babies who are sensitive to the wheat their mothers ingested while breastfeeding. How else does he explain her turn-around after going strictly gluten-free? I mean 10 pounds plus a few inches is hugely significant!

You said he tested her and it came back negative- what tests did he do?

As far as further testing, if you have her tested through Enterolab, that's 100% non-invasive, not so much as a needle. They do everything through the mail, and you collect a stool sample. It is apparently much more accurate/sensitive than blood tests. Insurance doesn't always cover it, though. Check out the website www.enterolab.com

I just can't get over that growth in such a short period of time; that is awesome. You must have been ecstatic!

-Sarah

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Guest j_mommy

I'm for testing b/c if she wants to find out for sure later than she has to do a gluten challenge and that is not fun. Plus as she gets older and really starts questioning things you can tell her she's been tested.

Yes, I know tests aren't always reliable but it's a starting pt!!!!

I also agree with a previous poster that people of ANY age can develop/have celiac....birth to 100!!!!

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If I were in your shoes I would consider the blood test that checks to see if she has the Celiac gene. I wouldn't want to put my rapidly recovering daughter back on something I knew was hurting her just for a test to show what I already knew.

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My opinion . . .

You know what you did and you know what worked. There are so many false negatives in young kids that I wouldn't want to put her through that. When she gets older and wants to try it you can do a challenge then.

Celiac disease is not an allergy so a wheat allergy test would be negative. An allergy is an IgE response and Celiac disease causes an IgA response.

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I'm for testing b/c if she wants to find out for sure later than she has to do a gluten challenge and that is not fun. Plus as she gets older and really starts questioning things you can tell her she's been tested.

Yes, I know tests aren't always reliable but it's a starting pt!!!!

I also agree with a previous poster that people of ANY age can develop/have celiac....birth to 100!!!!

NOBODY ever HAS to do a gluten challenge for any kind of testing. This is like saying that in order to prove somebody is really a diabetic, he should eat lots of sugar to the point of a diabetic coma, to prove they really have a problem with insulin. If she is told later how sick she was while she was eating gluten, and she got better without it, that should hopefully be enough to convince her.

Plus, the only test that would be useful right now would be the gene test. There is no rush for that, as right now she is too young to care. For the other tests she would likely have to eat gluten again for maybe a year to destroy her villi to the point of testing positive. It could kill her, or at least cause permanent damage, not to mention setting her back healthwise and probably develepmentally as well.

If I were in your shoes I would consider the blood test that checks to see if she has the Celiac gene.
The gene test can be done by a cheek swab, which is much less traumatic than taking blood for a little kid.

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Our daughter had what we thought were allergies since she was a baby. She was born at a normal weight, but by 18 months was labeled failure to thrive. Now at 2 yrs old she is at the 70% for both height and weight.

She had stuffy ears, very very loose mucousy stool (exclusively breastfed) and always had the reddest cheeks and runny eyes and nose - so we figured allergies. When we started her on solid food at 6 month (oatmeal we started with) she had an immediate reaction! Bright red cheeks, runny nose and diarrhea like crazy. So our wonderful ped. told us to stop all solid food and go back to bf exclusively. I'd tried SO many elimination diets already, but this time we cut out EVERYTHING except fruit, veggies and meat...her symptoms were gone very quickly. Then we very, very slowly started adding foods back to my diet - and when we added wheat back to my diet - her symptoms returned immediately. At 10 months we started her on solids - but a wheat free/gluten free diet. Whenever she had gluten/wheat (we weren't that careful) she would show mild signs of what we thought was an allergy - nose, yucky mucousy poops etc. We became ever so diligent about her gluten free diet when she was 18 months old and labeled failure to thrive. She just kept losing weight even though she was eating a good amount of food. Well, since her very strict gluten free diet for the last 7 months - she has gained 10 lbs! YEP 10 POUNDS in 7 months and a few inches! She went from 12months clothes to 3T! She has no more symptoms, and eats about the same as she did before - amount-wise. She is not eating any more food than she did before - she just seems to be digesting it I guess?

We've been to an allergist and had her tested and everything was negative. I REALLY don't want to do any more evasive tests. He says it can't be celiac b/c she too young (2ys) to develop it. But it just seems that the huge 'about face' her growth has done can't be just a coincidence? or can it?

Having known WAY more about celiac then I, would you have the tests done? What do you think? Will they tell me anything I really need to know? Can I just not feed her gluten and wait until she's older? I feel we have a handle on 'whatever it is'...but I was told this would be the best place to ask for advice!

Hi,

Here is the thing. ONce you take away the gluten, the test results will be wrong.. because you have already removed the offensive that would give positive results. you would have to reglutenize your child, and have the tests done. the most simple is blood work and an endoscopy which only takes 10 minutes, and they dont remember it at all and it doesnt hurt them.. Then you have your answer.. dont let the dr tell you that a child is too young to develop celiac. they are born with it. it is genetic and can skip generations and also be mis-diagnosed.. in fact i am finding out that it is 1 of the most misdiagnosed things of all.

if your doctor refuses to send you for the testing, u need a new dr. no it can not be a coincidence..

glglgl lynn

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Thanks so much for all of your opinions! The allergy test we had done were just the 'scratch' test or 'skin' test on her back. It was absolutely horrible! How do you go about testing for the celiac gene? That may be something we'll look at in the future. As for putting her back on gluten to have any other test done, I just don't have the heart to do that. Everyone I see who I haven't seen in the last couple months is absolutely astonished at how big and healthy she looks, and everytime I just about get tears in my eyes b/c all we've gone through to get her this way. I still wonder was it the gluten that made her so sick and unhealthy...but I guess I'll just have to keep wondering, b/c I'd rather have a healthy, happy baby and always wonder about the gluten than risk what could happen if we try and give it to her again. Maybe when she's older like 6-7 yrs and if she decides to have the tests done - then maybe well do it.

I do have a couple more questions

How do you test for the celiac gene? where and who does it?

What is the Entero lab test? What does it tell you?

What other tests tell you 100% you have or don't have celiac? Is there such a test?

Also I was reading that certain things like rhem. arthritis, being Irish, etc increase your chances of celiac....she has ALL of those I've read so far :(

Also - I'm a complete carb freak and lived on noodles and bread during my pregnancy - could this have helped celiac develop in her...can't help thinking I had a part in this...

Thanks again for all your help - I appriciate more than words can say!!

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I do have a couple more questions

How do you test for the celiac gene? where and who does it?

What is the Entero lab test? What does it tell you?

What other tests tell you 100% you have or don't have celiac? Is there such a test?

Any lab that does genetic testing can test for the Celiac genes, though that probably doesn't tell you much. I'd ask your doctor for a referral, or else go through Enterolab.

Enterolab actually does not require Dr orders to do any of their testing. You order the test kits over the website, they send you the kits. You then collect the samples and send them back, where they are analyzed. They then send the results directly to you. I plan on going through them to have my sons and myself tested soon. In my view, the biggest pro that Enterolab has going for them is that they test stool, not blood. Research is showing that stool testing is much more sensitive and accurate than blood testing. Even so, they only claim to be able to detect gluten intolerance up to a year after going gluten free. Also, I have heard of people having problems getting their regular doctors to accept the results from Enterolab, and again, there's no guarantee your insurance will cover it.

Go to this page for a description of each test that they do, and options if you want to bundle the tests and do several. https://www.enterolab.com/StaticPages/Frame_TestInfo.htm

As for a test to prove 100% that you have Celiac... Most doctors will say, a positive blood test plus a positive biopsy equals Celiac. I think this is a dangerous view, because it minimizes the importance of diagnosing the disease BEFORE damage to the small intestine occurs. By the time a positive biopsy can be achieved, you've been intolerant to gluten for a long time and probably have a myriad of health complications because of it.

In general, my view is that it should be diagnosed as early as possible- therefore the most sensitive test is needed. I don't understand why stool testing is not yet standard. (I also think doctors simply don't like the fact that Enterolab doesn't require doctors' orders. It puts control in the patients' hands.)

Also - I'm a complete carb freak and lived on noodles and bread during my pregnancy - could this have helped celiac develop in her...can't help thinking I had a part in this...

No! It isn't anything you did. It just is the way it is. It's not your fault!

-Sarah

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Thanks so much! What do you gals think about oats? I've been SO hesitant to feed her anything with oats - even if it says 'made with wheat free ingredients'. Do oats have gluten actually in them or is gluten a contaminate that occurs in the processing of oats?

Sorry for all the questions :( ...I just have so many though! :P

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Thanks so much! What do you gals think about oats? I've been SO hesitant to feed her anything with oats - even if it says 'made with wheat free ingredients'. Do oats have gluten actually in them or is gluten a contaminate that occurs in the processing of oats?

Sorry for all the questions :( ...I just have so many though! :P

Hi

Ok, on oats, the problem is that usually oats are processed where wheat is processed. BUT, you CAN get gluten-free oats. I believe Bob's Red Mills does.. They don't actually gluten in them its cross contamination.. I had the same thing.. My daughter loves kix, and cant have it because of possible cross contamination.

good luck again

lynn

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Hi,

I had my son tested for the celiac gene when my daughter was diagnosed positive through blood work and biopsy one year ago. He would have been a little 1.5 years at that point. The test was ordered by my daughters ped gi. he tested positive for the gene and we are now dealing with green and pale yellow loose stools, terrible behavior problems from a formerly happy kid, dark circles, and a huge loss of appetite. With all of these things and the positive gene test, as soon as I told my dr what was going on she immediately ordered a blood test for him. Both the celiac test and the gene test was a blood sample from the vein in his elbow. The techs were so good he didn't even cry. Brave little boy! :) Anyway, I am glad we got the gene test done because now I am keeping a watchful eye and if he is developing we may be able to catch it before too much damage is done. However since she is already on a gluten-free diet I would go with the enterolab so you don't have to gluten her again. If these tests come back neg, I am going to look into it for mine.

Good luck.

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I would not feed your child oats, gluten-free or otherwise.

actually the less grains the better...

If you do not test thru Enterolab.com for the gene test, other places only test for DQ2 & DQ8.

Enterolab tests for those in addition to DQ3, DQ1 & I think a couple of others...

Enterolab gene test is $169.00, easy, no doctors orders required, they mail you the kit - you mail back, & it does not go on the child's medical records..., unless you submit it. & yes, some doctors do accept their test results and dietary trial as diagnostic tools.

& yes, some doctors do not - there are all levels of incompetency & arrogance.

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I think it is wise to keep her gluten free....it seems to be working, and at this crucial devlopmental stage, priority number one should be to keep her healthy. If you ever decide to put gluten back into her diet for the blood test, I would at least wait until she is past her milestones, and until she is old enough to verbally explain to you how she feels.

I have one biopsy dx'd daughter...and three kids who are also on the diet without any paper proof that they need to be. I doubted myself at first, but over time that has faded. I think you'll find that the longer you have her on the diet, the less you'll feel the need for an actual diagnosis. Trust your instincts, they seem to have served you and your daughter well ( 10 pound weight gain is awesome!) thus far.

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