Jump to content
  • Sign Up

Rate this topic

Recommended Posts

thanks to all you people who read my original post and ignored it....

my son needs help and no one seems able to give any advice.....

i just want to know what tests he needs to have done but no one on here seems to care about a 10 month old baby

so thank you all. origanal post fallows just to let you know what im talking about

ok so im new on here and im trying to find out how to get the testing done for my 10 month old son..

his doctor wont do anything instead i was told that gluten wasnt in that much stuff so i should just deal with it

and to put him on pediasure and vitamines to help bring his weight up ....but both make him really sick....

he has already been hopitalized when he was 3 weeks old because his formula made him really sick.... i dont know what to do to help him.... i mean i have changed the way me and his brother eats... but when he goes anywhere he ends up sick because people dont think oat meal has gluten in it

Share this post


Link to post
Share on other sites

Perhaps nobody answered because nobody knows the answer to your question. I have been on this board for five years and do not know the answer to your question. No need to be snarky.

Testing for celiac disease in young children is notoriously unreliable. False negatives abound. Perhaps the doctor knows this. It does appear that the doctor does not know much about gluten in food, but doctors are not dieticians.

If he gets sick when he eats gluten, but is well when on a gluten-free diet, then I would think that you have the answer. A medical test would not likely add to your knowledge, although having a documented diagnosis may make a difference in the future when it comes to acccomodations in school.

And to address your question again, I do not know what test or tests can reliably detect celiac disease or gluten-intolerance in children under two years of age.

Share this post


Link to post
Share on other sites

Like Peter stated, testing is unreliable for children under two. Catch 22 situation... the patient needs to be ingesting gluten and have enough damage for the testing to pick up on. i.e. enough antibodies in the blood, enough damage to the villi during the endoscopy with biopsy. You can opt for the genetic testing, but it still is not covered by all insurance plans and won't be the "gold standard" diagnoses.

What makes it harder to determine what advice to give you... How was your child getting sick from the formula? Was it projectile vomit? Was it more like GERD? What was going with the diapers? "D" constipation? We can't say every problem is Celiac disease. There can be a so many things going on with a 10 month old. i.e. malformation of the esophagus, parasite infection, Eosinophil involvment, H. Ployri. gluten intolerance, Celiac disease, GERD, acid reflux, and at this point there can be a lot of things I can't even think of.

I don't think anyone here wants to put you into a worse panic telling you a huge list of worst case scenarios.

It sounds like you need to find a different doctor to work with. To tell you honestly your pediatrician should give you a refferal to a Pediatric Gastroenterologist.

Sorry for the delay for your answers. I'm in the middle of testing and probably having my gallbladder removed while my daughter is having severe issues with Eosinophilic Esophagitis and her endoscopy with biopsy is scheduled for Wed.

Share this post


Link to post
Share on other sites

I wasnt trying to get snippy.... im just trying to find out whats wrong with my baby....

I almost lost him once because of this and no one can tell me what it is... he got soo sick he couldn't eat

every time anyone tried he would scream.....his first doctor did something so he could see if there was something in his stomack blocking his food from going down and causing him pain..... He told me and my family that there was alot of damage to his lower intestines and that it was something he was eating that caused all of it....

as for what he was doing on the formula nothing would stay down and it was comin out both end....every time he ate....he would scream for hours none stop.....he still screamed none stop and had small problems with his food after we took him off the fomula for about 2 months....when we got him better my mom started him on wheat cereal to try and get his weight up because he had lost about 5 pounds when he got sick he only weighed about 10 pounds at 5 months.... hes 10 months now and still only weighs 18 pounds....but he got really sick again like not even 30 minutes after he ate the cereal he started getting sick again......my mom kept giving it to him for about a week trying to tell me he would get over it if i gave him the cereal anyways......when he started screaming agian i stopped letting her watch him....now she is really careful what she feeds him.......im still trying to get his weight up..but i dont know how....hes only in the 3 percentil for his weight....if anyone can think of something that will help him please let me know......i have tried everything i can think of....thank you

Share this post


Link to post
Share on other sites

I wasnt trying to get snippy.... im just trying to find out whats wrong with my baby....

I almost lost him once because of this and no one can tell me what it is... he got soo sick he couldn't eat

every time anyone tried he would scream.....his first doctor did something so he could see if there was something in his stomack blocking his food from going down and causing him pain..... He told me and my family that there was alot of damage to his lower intestines and that it was something he was eating that caused all of it....

as for what he was doing on the formula nothing would stay down and it was comin out both end....every time he ate....he would scream for hours none stop.....he still screamed none stop and had small problems with his food after we took him off the fomula for about 2 months....when we got him better my mom started him on wheat cereal to try and get his weight up because he had lost about 5 pounds when he got sick he only weighed about 10 pounds at 5 months.... hes 10 months now and still only weighs 18 pounds....but he got really sick again like not even 30 minutes after he ate the cereal he started getting sick again......my mom kept giving it to him for about a week trying to tell me he would get over it if i gave him the cereal anyways......when he started screaming agian i stopped letting her watch him....now she is really careful what she feeds him.......im still trying to get his weight up..but i dont know how....hes only in the 3 percentil for his weight....if anyone can think of something that will help him please let me know......i have tried everything i can think of....thank you

Why don't you try a 100% strict gluten and dairy free diet for him to see how he does? If he has a gluten issue, either Celiac or gluten intolerance, most will have problems with dairy until the intestines heal. Here are some things you can try to feed him:

gluten free rice cereal

pureed or soft fresh fruits and vegetables

coconut or rice milk

pureed beans

I would try only fresh foods. You could try a porridge with rice and coconut or rice milk, sweetened with a little sugar (no honey yet). Maybe some scrambled eggs if he can chew them.

Above all else, do not let anyone else feed him unless you are absolutely sure they will not give him problem foods. Check the labels on everything, including soaps, diaper rash meds, EVERYTHING. Gluten is insidious and you have to be super vigilant.

In the meantime, I would find a Pediatric Gastroenterologist in your area that can help.

Share this post


Link to post
Share on other sites

I understand the frustration with doctors when you are trying to get your baby healthy.

Lower intestine damage is very concerning, as it isn't clear cut for a Celiac diagnoses.

Keep a food journal. Noting all

ingredients,

amounts of food,

note bowel movements ~ with description "D"/ formed/ hard/ soft/ color,

any vomiting,

fussiness/crying symptoms of stomach cramping,

Noting the TIME always.

[[ Some reactions to food/allergen have a 2 WEEK time period. i.e. eosinophils and Celiac.]]

You should be working with a pediatrician that has reffered you to an allergist/immunologist and a pediatric gastroenterologist. At the very least you should have been explained to very clearly what type of damage was found in the lower intestines?

The gluten free diet has been proven to help in auto-immune diseases, some cases of Autism, Chron's, IBS, and other situations other than Celiac /DH.

You might want to try avocados for your little one. It has a "good fat" content and is an easy to digest food. You might want to avoid any of the top eight allergens for right now. (They are the most likely suspects for a problem) Wheat, dairy, eggs, soy, fish, shellfish, nuts, tree nuts.

The next most reactive food is leguemes peanuts. There are many that believe corn should be higher on the list, so keep a look out for reactions (it is very hard to find corn free, because it is in more drinks every day)

Share this post


Link to post
Share on other sites

Hi I did not see your original post.

A year or two years ago there was a mother named Electra or something ( a search might bring up those posts) with an almost similar question, just that the son was even younger, and reacted to gluten in breast milk.

She had a celiac older son I think, and that one got very ill from oats.

I personally am very intolerant of gluten, but I tolerate oats just fine. This is individual. About 15% of celiacs do not tolerate poats either.

Anyway, baby got a biopsy and tested negative and she gave up and put the baby on a totally gluten-free diet. She thought a baby with such violent symptoms and awful stools would get a positive biopsy but no. She afterwards said it was probably not worth it to have the baby on gluten breast milk and getting so ill. Baby did not actually eat gluten , it was just gluten in breast milk and that is not much.

But I have heard of other babies under 1 that got a positive biopsy but then they have been on a diet with enough gluten for a few months, and stopped growing.

I understand it is not easy to decide wether one should feed the baby more gluten to get a diagnosis, or just go totally gluten free.

Who keeps feeding him oats?

maybe a gene test can help, for we have heard that several doctors will give them the diagnosis with the symptoms and the celaic genes even without positive tests. You know IgA is not so reliable in children under three, and the tests are IgA based. Actually, IgG is said to be more reliable with small children because of this IgA problem.

The ordinary celiac tests are:

tissue trasnglutaminase IgA

tissue trasnglutaminase IgG

antigliadin IgA

antigliadin IgG

endomysium antibodies (this is done with a bit of monkey esophagus and using an electron microscope, but sometimes labs call the ttg test falsely for endomysium antibody test but it is not. It is very very very specific for celiac)

There are people who had very small children diagnosed celiac at the delphi celiac forum, you might want to check it out and ask there. This one is a bit fast-moving so your posts might disappear fast.

nora

Share this post


Link to post
Share on other sites

HUGS Mommy! I know what you are going through. My son was a very sick baby but I was breastfeeding so I did an elimination diet. I had to cut out lots of foods. We thought he outgrew it but now he

Share this post


Link to post
Share on other sites

I just reread my post and wanted to clarify about adding foods. Give him one food, plus the formula for 3 or 4 days and then add a new food every 3 or 4 days. It will take awhile to get him onto a varied diet, but the formula is enough for him right now if you put him on the non allergenic one. Formula or breastmilk is the main food source the first year and foods are supplemental until age one or even 18 months. You might be able to 2 days with him since he's 10 months old now, but only if he does really really well on the new food you have given him.

Remember he is a baby and he doesn't need to eat eggs, hash browns and pancakes for breakfast.

Also wait on proteins for a few weeks. When you give him eggs do yolks first. The whites are the allergenic part so wait on egg whites for 2 or 3 months. Boil a bit of chicken breast and cut it into tiny pieces, but no chicken breast out at restaurants because it often has wheat starch glazed on it.

ONE food at a time and take it slow. Don't listen to anybody who says otherwise. My kids were both fed this way and they are hearty and healthy at age 2 and 5. My pediatrician was VERY knowledgable about food allergies in babies and she was adamant about feeding them this way. Her whole office told parents to do this with their babies and they freaked out if anybody gave cereals before 6 months.

Share this post


Link to post
Share on other sites

very good advice, sandsurfgirl!

Yes, this is the way one does test for food allergies in adults too, start very very simple and add one food at a time very slowly.

Share this post


Link to post
Share on other sites

very good advice, sandsurfgirl!

Yes, this is the way one does test for food allergies in adults too, start very very simple and add one food at a time very slowly.

Thanks Nora

Share this post


Link to post
Share on other sites

Dulce where did you go? You were so upset about not getting answers and now you have tons. I hope you come back so we can continue to help you through this.

Share this post


Link to post
Share on other sites

i didnt go no where

i go to school and i work all week so its hard for me to get on here to check thinks

thank you for your advice

my son is allergic to patatoes, squash, and wheat

he can eat just about every thing else

but he still dont have no teeth so if he really has to chew it he cant eat it yet

as for his height hes the size of a 18 month old

hes really big for his age-----only really skinny

Share this post


Link to post
Share on other sites

i didnt go no where

i go to school and i work all week so its hard for me to get on here to check thinks

thank you for your advice

my son is allergic to patatoes, squash, and wheat

he can eat just about every thing else

but he still dont have no teeth so if he really has to chew it he cant eat it yet

as for his height hes the size of a 18 month old

hes really big for his age-----only really skinny

This confuses me. You are saying that he's so sick and you want him tested for celiac but then you are saying that he's fine with all foods except wheat, potatoes and squash. I don't think he would be so sick and so thin if all the other foods were fine for him. He gets sick if you give him the supplements that the ped told you to use, so he IS reacting to things. Was he allergy tested and came up allergic to those things? How do you know they are his allergens?

You came on here desperate for advice but this post makes me think you plan to disregard the advice you have been given. If you want answers you need to go back and simplify his diet. Your child will thank you for it.

Share this post


Link to post
Share on other sites

I'm confused as well. Do you mean that you have discovered that he gets ill when he eats these foods? And now you are asking about pursuing medical testing, just so you can be sure?

Or are these the foods you know about so far, and want to learn how to find what other foods he can't eat?

Share this post


Link to post
Share on other sites

sorry those are the things i know hes allergic to so far

i have simplified his diet

i want to make sure he doesnt get sick like he did before

we are careful what we give him and we keep a journal now so that we can fined every thing that makes him sick

but hes doing better on this

Share this post


Link to post
Share on other sites

sorry those are the things i know hes allergic to so far

i have simplified his diet

i want to make sure he doesnt get sick like he did before

we are careful what we give him and we keep a journal now so that we can fined every thing that makes him sick

but hes doing better on this

Good for you! Just be patient and you'll figure it all out. He's so little he won't care what he's eating.

Share this post


Link to post
Share on other sites

A journal is the thing to do. I don't know of anything better than what you are already doing. It's just a slow, tedious process.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×