Overwhelmed With 15 Month Old

[georgeismyboy]

Hello everyone! Thank you in advance for taking the time to listen to me "think out loud".

My son is almost 15 months. He (still) has severe reflux and some some food allergies as well as milk intolerance. He was failure to thrive for much of his infancy. We started on the typical infant cereal grains at 6 months, all met with instant vomitting. By seven months he still wasn't tolerating any solids so GI did a scope and biopsy, initially suspecting Eosinophilic Esohpagitis (neg). We attempted gluten again at 8 months, again with the vomitting. I quickly took him off all grains and his reflux quickly improved. We strictly avoided gluten until 12 months.

In the mean time (at 9 months), pediatrician did a "Celiac panel" blood test. It was negative. I asked at the time if he needed to be on gluten (which he was not) and he said no, it tests the antibodies that are already in your body. I've been reading so much information since that completely contradicts that theory.

Fast foward to now and my guy has been on gluten for almost three full months now. His reflux had almost completely resolved by 12 months when he was gluten free. He is now vomitting daily, refluxing, passing foul gas around the clock (I literally hear him tooting on the baby monitor through the night), belching after a couple bites of food, light colored soft stools, and generally miserable.

Our pediatrician has closed the book on Celiac and says he just has reflux. I am not willing to let it go. We have an appt with a new ped GI to discuss everything and I will be insistant that we explore every possible diagnosis, Celiac or otherwise.

I guess my question(s) are - is he too young to be accurately diagnosed with Celiac? I've read so many conflicting things about the accuracy of dx'ing children under age 3-5. Do you need to be on gluten to have an accurate blood panel? Any additional thoughts would be appreciated. I am so anxious to bring some relief to my little guy.

[gfpaperdoll]

Highly unlikely that you will get a positive blood or biopsy diagnosis that young.

You do have a diagnosis though, through dietary results, which is the ultimate test.

For relief - quit feeding the child grains, dairy & soy.

yes, you have to be eating gluten for the test to be positive - usually. Some will test positive while not eating grains - but a lot will also test negative. greater chance it will be negative if you are not eating gluten.

you can quit eating gluten & get an accurate test thru enterolab.com

You can also get a gene test thru them...

Since your baby has had this awhile, you might want to think about getting blood work to check for all vitamin and mineral levels...

Sorry you are having to go thru this - hard lesson to learn that most doctors are not any help...

[Ursa Major]

At your sons age, the best and most reliable test is to try the gluten-free diet. You've really always known that he is gluten intolerant. Unfortunately, you have an ignorant GI and an even more ignorant pediatrician. Neither one knows a thing about celiac disease it seems to me.

Usually blood work and biopsies on children that young will only be positive if the child is already on deaths door. You've allowed the testing to be done, it was negative and completely useless.

It is now time to take control of your son's health, and to ignore those ignorant doctors completely.

Please take your son off all gluten, and don't put him back on it for anything at all! Because he is the one who will suffer if you don't follow your own common sense.

He has celiac disease, despite negative test results. Just accept that and move on.

[georgeismyboy]

I am so touched by your thoughts and support!

Thank you for suggesting he get labs done to look for vit and other deficiencies. Ped ran labs last week and indeed they are off. His alkaline phosphatase is 1100 (normal would be up to 300), which might indicate malabsorption of Vitamin D, which in turn might indicate malabsorption of fat since Vit D is fat soluable. Constistent with Celiac's, am I wrong? I will make sure our new GI is aware of this next week.

Ped is very against a restricted diet. Because of his history of poor growth, he wants us on anything he doesn't test positve allergic to. He's not allergic to milk but I refuse to go down that road again, and he's very sensitive to soy so we limit that. Ironically my boy has gained three pounds in the last three months after gaining nothing for a long time. Ped takes this as proof that he should be eating anything and everything. From the look of him, I'd say his weight gain is purely from bloating, water retention and inflammed tissues. He looks like he could pop!

Thank you again for reassuring me that I should go with my gut and remove gluten, dairy and soy from his diet. I know this is a life-altering choice, especially for a young child who's facing some tough and cruel school-aged years ahead. I only get support from my husband - our families think we're idiots for doing anything without a diagnosis. But I know I have to do what's best for my son's health.

I will definately consider doing Enterolab. I have a friend from my reflux support group that did this with her two children and was pleased with the service and felt confident about the results.

God bless!

[nora-n]

GI doc told my doctor he excluded celiac, but there is no such thing. I was off gluten , then back on gluten for five weeks and had a negative biopsy. Blood tests were negative (taken beforethe gluten challenge but afte some months gluten-free)

I had thought that antibodies would stay around for a while, but these celiac antibody tests re deisgned to only be positive when therer is visible damage to the villi......so one must be consuming a lot of gluten for a long time.

Doctor is nuts if he excludes celiac, or says the antibody test is still valid after being off gluten.

I wouod say, go to the new gastro doc and get new antibody tests done , they might have turned positive by now, maybe, maybe not.

My DD2 got aceliac diagnosis in her 20's. She was ill since about three, with floating stools etc. Doctors kept telling me small children have nervous problems when they complain about tummy aches, not tummy problems....

nora

[Worriedtodeath]

Do the diet and ignore the drs. We only need them to run the tests but that doesn't mean they have the knowledge to understand them. Remember in highschool the kids you were in school with? One of them became a dr. Does that make you feel better?? It certainly didn't make me feel any better to think that one of those yahoos grew up and became a dr. Or the pathologist who reads the test or the pot head who become the lab tech. Especially the kid who couldn't find his way out of a wet paper bag BUt that's another thread itself....

Our baby is 22 months old and despite having 3 drs agree she has Celiac all have backed down when the biopsy came back negative. Despite blood labs that went up on gluten and down off it, desptie low nutrients, despite poor growth, FTT, depsite the typical Celiac body look, despite negative allergy test and food intolerance diet trials, despite lactose/casien allergy, despite low sugars and abnormal ones, despite every sign and symptom that supports an orderly progression to stage 3 and 4 Celiac disease, our dx is finally a wheat/casien allergy. ????? we are to continue Gluten-free Casein-free for 6 months and then reintroduce wheat . Any symptoms return, we will be sent to a research center like Duke university to let them poke, prod, and rerun tests that won't show Celiac at her age with a very limited amount of gluten ingestion. Who wants to do that??? Drs don't know it all and Celiac/gluten issues are simply out in complete and total left field. Remember how lonely left field is in baseball???? you can hear the crickets sing! Our ped even admitted that we may very well have an issue that has yet to be idenitified and given a name by the medical field and that we may have to live knowing that the drs can't do anything other than what is in their very thick books. As our ped said I can't give you a dx that you don't match the criteria for and I can't make one up because there isn't one that exists at this time. And the Non Celiac Gluten sensitivity doesn't have set criteria or markers to dx with. So that's us in a nutshell. We have a great ped who is stuck with insurance and dx that have to be met.

We have 3 kids and myself that don't fit the criteria and have to make the choice of eat wheat and be sick or do without and feel great. I asked my 10 year old if he wanted to go back on gluten and he said "NO ! No way mom. I don't ever want to feel that bad again even if there is no reason I should feel that bad. Crazy and great is better than sane and sick."

So I think my 10 year old has the best answer! I'd rather be "crazy" and great than "sane" and sick!!!

Stacie

[kbtoyssni]

Ditto what everyone else said. Go with your gut and get this kid off gluten! It's hard to have a gluten-free kid, but it's harder to have your child get sicker and sicker, to watch him start developing additional, irreversible health issues due to undiagnosed celiac, to have a kid that's too sick to go to school or do anything.

[Ursa Major]

Thank you for suggesting he get labs done to look for vit and other deficiencies. Ped ran labs last week and indeed they are off. His alkaline phosphatase is 1100 (normal would be up to 300), which might indicate malabsorption of Vitamin D, which in turn might indicate malabsorption of fat since Vit D is fat soluable. Constistent with Celiac's, am I wrong? I will make sure our new GI is aware of this next week.

It sounds like your son needs to take cod liver oil. It will supply him with easy to digest vitamin D as well as essential fatty acids and vitamin A. The Carlson brand is best, and doesn't taste bad.

Lack of vitamin D is very serious. And when you consider that calcium and magnesium can't be absorbed by the body without vitamin D, you get into even bigger problems. Young children with celiac disease have been diagnosed with osteoporosis as a result!

Poor little guy. Please let us know how he does on the gluten-free diet. The tests with Enterolab are valid for up to a year after eliminating gluten, so he won't have to be eating gluten for those tests.

[georgeismyboy]

Thank you for the cod liver oil suggestion. I will definately look into that!

[georgeismyboy]

Stacie, thank you for your thoughts and suggestions - you are so right. You know, my sister-in-law is in med school and well on her way to doctorhood. Let me tell you how scary that is! So I totally get your point about doctors.

I am so sorry your little one is going through so much as well. It is so sad to think of the procedures and tests they will put these babies through. I realize they're being thorough by ruling out other serious conditions, but it seems like a waste of resources on top of being traumatizing for these kids. I know he needs to be off gluten, milk and soy, and if he were off those I'm confident that he could get off Prevacid, his reflux would go away and his body would be restored. Our GI appt is next week and unless this woman gives me an earth-moving reason to keep him on gluten, off he goes. I cannot stand to see him suffer anymore.

I hope you get the answers you need with your toddler. You are very lucky to have such a wise older girl to set everything straight!

[georgeismyboy]

I just ordered my little guy's EnteroLab tests - wish us luck!

[Ursa Major]

Way to go! I am sure we all know what the results will be. Please post the results when they are in!

[gfpaperdoll]

Oh Good For You !!!!! Please let us know the results. It will be the best money you ever spent...