Questions About Infant(13month Old) Testing

[4blessings]

We are just starting this whole process and I have lots of question I hope that someone may be able to answer. Here is a little history...

my daughter is 13 month old and isn't gaining weight current weight 17lbs 8oz. Has always had eczema and runny/stuffy nose. Thought that it was dust/pet allergies... once we started solids noticed All gerber baby foods made eczema worse Cheerios as well. Last well check dr. did blood test for celiac , the question is do I continue to give her gluten? She is still nursing

another question is she doesn't have all of these symptoms that others have. Are their others with celiac who don't have classic symptoms either? Also a friend mentioned to me that a naturopath can dx this is that true?

I will be honest I REALLY hope that she doesn't have this.

Thanks

[ravenwoodglass]

I do understand that you would rather she not have celiac but if she does finding it at her age will prevent a great deal of other life altering problems and pain down the line. Adolesence and even the 'terrible twos' can be a horrible time with an undiagnosed gluten intolerant child.

You do need to know that blood tests and even endos on young children are often a false negative. Even if her testing is negative a gluten free trial for a couple of months and then if needed a challenge should be done.

You will likely find the parenting section of the board very helpful, you may want to post some questions there also.

I will say that I would have given anything to have my children and myself diagnosed promptly. There are so many systems effected by the autoimmune process, including the brain. I do hope that if she needs the diet she is diagnosed promptly.

[gfgypsyqueen]

No one wants to have this disease or any other. But the positive side is that Celiacs does not require daily medicine and so there are no drug side effects. The diet gets easy pretty quickly. Once she is gluten-free and growing well, you'll feel better. I don't want this disease, nor do I want my kids to have it, but we are lucky it is not something worse. We have food allergies as well.

In my opinion, insist on Celiac testign to rule the disease in or out. If your daughter is not growing well, Celiacs could be the cause. One reason to pursue the testing is the Pediatric GI will rule out other diseases at the same time. Another reason to pursue testing is the number of Drs that grill me on "how do I know I have Celiacs? Were you tested for it? etc." Drives me crazy.

My duaghter stopped growing around 9mths. She always had a intolerance to milk. Turns out it is an allergy to dairy. It took until her 2nd bday to get her tested for celiacs. By then she was off the bottom of the growth charts and the drs said she was "just petite". She has one of the gene's and the biopsy was inconslusive. Against drs orders, I put her on the gluten-free/CF diet for a few months. The main reason for trying the diet were her rashes that do not look like typical DH, but they show up only when glutened now. Very quickly she changed. Her rashes/exzema went away. Her poop was formed. She slept through the night. Her behavior did a 180 for the better. She is now 100% gluten-free/CF and finally growing and gaining weight. Still I have heard all kinds of incorrect things from Drs. "Kids CANNOT have Celiacs under the age of three!" Was one of the best. Umm NOOOOO. Kids can have Celaics as soon as grains are introduced. Never went back to that Dr! So in my opinion, insist that she is thoroughly tested for Celiacs.

As for the blood test, call the Dr and get the results. You can post the results on this site and ask people for advice. They are very good at it. Be aware that a lot of tests on babies and young kids are false negative. You can ask for a gene test too.

Part of the testing is the Biopsy. Keep feeding the baby gluten until the biopsy. If she is gluten-free before the biopsy, the results will not be accurate. The biopsy sounds awful, but it is not so bad. You want to make sure that MANY samples are taken (like 3 from each spot). It is fast. Kiddo is fine and in no pain.

Also, if you are nursing, you'll need to find out about gluten and dariy in the breast milk. As in, if your child goes on the gluten-free diet, you may have to go on the diet as well. Many people are told to avoid dairy (go CF) at first until their intestines heal.

I hope your little one feels better soon.

[4blessings]

No one wants to have this disease or any other. But the positive side is that Celiacs does not require daily medicine and so there are no drug side effects. The diet gets easy pretty quickly. Once she is gluten-free and growing well, you'll feel better. I don't want this disease, nor do I want my kids to have it, but we are lucky it is not something worse. We have food allergies as well.

In my opinion, insist on Celiac testign to rule the disease in or out. If your daughter is not growing well, Celiacs could be the cause. One reason to pursue the testing is the Pediatric GI will rule out other diseases at the same time. Another reason to pursue testing is the number of Drs that grill me on "how do I know I have Celiacs? Were you tested for it? etc." Drives me crazy.

My duaghter stopped growing around 9mths. She always had a intolerance to milk. Turns out it is an allergy to dairy. It took until her 2nd bday to get her tested for celiacs. By then she was off the bottom of the growth charts and the drs said she was "just petite". She has one of the gene's and the biopsy was inconslusive. Against drs orders, I put her on the gluten-free/CF diet for a few months. The main reason for trying the diet were her rashes that do not look like typical DH, but they show up only when glutened now. Very quickly she changed. Her rashes/exzema went away. Her poop was formed. She slept through the night. Her behavior did a 180 for the better. She is now 100% gluten-free/CF and finally growing and gaining weight. Still I have heard all kinds of incorrect things from Drs. "Kids CANNOT have Celiacs under the age of three!" Was one of the best. Umm NOOOOO. Kids can have Celaics as soon as grains are introduced. Never went back to that Dr! So in my opinion, insist that she is thoroughly tested for Celiacs.

As for the blood test, call the Dr and get the results. You can post the results on this site and ask people for advice. They are very good at it. Be aware that a lot of tests on babies and young kids are false negative. You can ask for a gene test too.

Part of the testing is the Biopsy. Keep feeding the baby gluten until the biopsy. If she is gluten-free before the biopsy, the results will not be accurate. The biopsy sounds awful, but it is not so bad. You want to make sure that MANY samples are taken (like 3 from each spot). It is fast. Kiddo is fine and in no pain.

Also, if you are nursing, you'll need to find out about gluten and dariy in the breast milk. As in, if your child goes on the gluten-free diet, you may have to go on the diet as well. Many people are told to avoid dairy (go CF) at first until their intestines heal.

I hope your little one feels better soon.

Thank you for all the useful info!! The nice things is my doctor has aready order a test and we are waiting to hear. I didn't know that most infants receive a false neg, kind of depressing!! From all the info on this wonderful site I am thinking entire family will go gluten free, that way no worry at home. Is it true some people can not tolerate gluten even in shampoo and lotions. Or is gluten that toxic for those with celiac that there can be no exposure at all. Also do you know can gluten issues start before birth? Because she was born with horrible eczema and no she doesn't sleep thourgh the night yet. Thanks for all of your wonderful info!! And I will be glad she is being tested now.

[4blessings]

I do understand that you would rather she not have celiac but if she does finding it at her age will prevent a great deal of other life altering problems and pain down the line. Adolesence and even the 'terrible twos' can be a horrible time with an undiagnosed gluten intolerant child.

You do need to know that blood tests and even endos on young children are often a false negative. Even if her testing is negative a gluten free trial for a couple of months and then if needed a challenge should be done.

You will likely find the parenting section of the board very helpful, you may want to post some questions there also.

I will say that I would have given anything to have my children and myself diagnosed promptly. There are so many systems effected by the autoimmune process, including the brain. I do hope that if she needs the diet she is diagnosed promptly.

So is it pretty much a given that if you have celiac you have other allergies as well? Wondering because I have a brother and Uncle who are allergic to just about everything including certain meats.

Question about the testing and gluten free diet. This is going to sound stupid but what is a challenge in regards to testing? Do they do the test again under no gluten or do you given them gluten again...

Thank you for all the great info!!

[Worriedtodeath]

HI!

We are going thru this now. So far every test from two Celiac blood panels, allergy testing, regular blood testing, stool testing,kidneys - you name it , and a biopsy have come back negative on our little girl (20 months old now) except for a lactase deficency done during the biopsy. She stopped growing at her 12 month visit and is no bigger now than at 12 months. She poops on average 6 or so times a day. But test wise she's healthy and normal (why she poops all the time and not growing isn't reflected by any test) other than somewhat low lactase level.

3 drs feel sure she has Celiac but can't confirm with blood or biopsy but she cannot survive consuming wheat/gluten. At this point, we are simply doing the Gluten-free Casein-free diet and having fantastic results not only with her but her brothers and myself.

THe diet isn't bad, just extra work until it becomes old hat for you, and when you see how much better your child or you are rather easy to stick too since making the choice of a doughnut vs feeling bad becomes a no brainer.

I don't think gluten can be transfered thru skin but if your child chews on his clothes or hair or licks himself or yourself (my little girl is all into licking everything for some strange reason) then you could ingest gluten that way. Or transfer it from hands to mouth like when handling playdough. I did find out that I react to wheat in those products and that has been causing my skin rash that I get from time to time.

It definitely affects behavour. When we elimanted gluten and she became "normal" she was a sunshiny lovey little girl. When we did the challenge and put her back on gluten she was almost immediately a horrible little thing that turned into a horrible case of terrible twos. Gluten free she is a doll baby again. It affects you in startling ways that even drs are just now discovering.

Stacie

[ravenwoodglass]

So is it pretty much a given that if you have celiac you have other allergies as well? Wondering because I have a brother and Uncle who are allergic to just about everything including certain meats.

Question about the testing and gluten free diet. This is going to sound stupid but what is a challenge in regards to testing? Do they do the test again under no gluten or do you given them gluten again...

Thank you for all the great info!!

You don't always have other allergies but many of us do. There are times when the system goes into hyperdrive trying to protect us from the gluten and that can make us react to just about everything. Most of us will see this subside after we have been gluten free for a bit.

When I refer to a dietary challenge with gluten what I mean is that after someone has eliminated it from their diet for long enough to have no symptoms you then eat it at least three times a day in the purest form possible (I used cream of wheat) and see if you react. It can take up to a week for this reaction to hit. You would have your answer after the reaction.

If you are going to go the biopsy route you do not want to remove gluten from her diet until after the biopsy. Even on a full gluten diet biopsies can be hit and miss so you want to give her the best chance of having a positive. If you let her go gluten free and then decide that a biopsy is wanted and the doctor orders a 3 month challenge you might end up with a child who is sicker than before.

Regardless of the results of blood tests or biopsy you really do need to give the diet a good try afterwards. The chances of a false negative in children is very high.