Just Got Back From A Gi Consult, Wtf

[Nicholasmommy]

Ok, so my son is 20 months old and is considered failure to thrive. Celiac runs in his fathers side of the family and his PCP seemed to think there was a good chance of celiac. So, apparently his AGA IGG and AGA IGA levels are positive but negative for TTG. The Gi doctor doesn't even think that he has celiac disease. Does that make any sense???

[lisa922]

  Nicholasmommy said:

Ok, so my son is 20 months old and is considered failure to thrive. Celiac runs in his fathers side of the family and his PCP seemed to think there was a good chance of celiac. So, apparently his AGA IGG and AGA IGA levels are positive but negative for TTG. The Gi doctor doesn't even think that he has celiac disease. Does that make any sense???

I was diagnosed in 2004 after positive bloodwork and biopsy. I had an elevated AGA IGG and AGA IGA and some Anti-Reticulin (sp?) test that I don't think they do anymore. I was negative for the EMA test (which I believe is supposed to be the equivalent of the TTG). I can't remember who did my bloodwork...I'm pretty sure it was LabCorp. The GI said, based on my bloodwork alone, he wasn't sure that I had Celiac since I wasn't positive for the main indicators of Celiac and we would just have to wait until the biopsy results came in. They were positive and I have been gluten-free since then. I have had follow-up serology tests done with Prometheus almost every year and have always had negative serology and never had a positive TTG. If you think your son could really have Celiac, you should pursue this. In my experience, many GI doctors don't know enough about Celiac and you really have to check all the possibilities. Do you have a copy of his bloodwork? If you don't, I would make sure to get it. How high were his IGG and IGA levels? My IgG was in the 100's somewhere with normal only going up to 10 and my IgA was a weak positive at 24.

Lisa in NC

[Jestgar]

  Nicholasmommy said:

Ok, so my son is 20 months old and is considered failure to thrive. Celiac runs in his fathers side of the family and his PCP seemed to think there was a good chance of celiac. So, apparently his AGA IGG and AGA IGA levels are positive but negative for TTG. The Gi doctor doesn't even think that he has celiac disease. Does that make any sense???

Did you get a chance to ask him what he DOES think your son has?

[Nicholasmommy]

  Jestgar said:

Did you get a chance to ask him what he DOES think your son has?

Well they are doing a bone scan to make sure that his bones are growing at a proper rate. They are also doing a fecal sample to make sure that he is absorbing fat and stuff. They also gave him an appitite stimulate b/c he does not eat very well. But I just got a call from the phramacy that my son cannot have an appitite stimulate b/c it can cause seizures in children under the age of two and with him being so light weight he is really at risk. Shouldn't a doctor know that? Pretty much he said that he doesn't know what is wrong but they are going to look at all different angels. errr

[Jestgar]

  Nicholasmommy said:

Well they are doing a bone scan to make sure that his bones are growing at a proper rate. They are also doing a fecal sample to make sure that he is absorbing fat and stuff. They also gave him an appitite stimulate b/c he does not eat very well. Pretty much he said that he doesn't know what is wrong but they are going to look at all different angels. errr

soooooooo......FTT, irrelevant. Family history, irrelevant. Positive tests, irrelevant. ONE negative test, THIS is relevant?

[Nicholasmommy]

Yeah, tell me about it!!!! Part of me thinks I should just take him off gulten and tell them to go to hell. I edited my post and talked about the appetite stimulate and how the phramacy said my son can take it because it could make him have seizures. What the heck am I suppose to do? Man I am so pissed!

[Nicholasmommy]

ohh, and I think that they think b/c he doesn't eat all that well is why is not growing. Put it just doen't make sense that he would suddenly drop off the charts when he started getting solids.

[Jestgar]

  Nicholasmommy said:

Yeah, tell me about it!!!! Part of me thinks I should just take him off gulten and tell them to go to hell.

I would fully support this part of you.

Seriously though. Do you need a medical diagnosis? Some parents feel they do. Examine your personal situation and try to figure out what will be best for your son in the long run.

[Nicholasmommy]

Yeah I am really going to think about it b/c this is crazy esp since they are trying to get him to take an appetite stimulant that can give him seizures!!! I have a lot to think about!!

[GFinDC]

You might find a good doctor listed in the Celiac Disease - Doctors folder. There are celiac clinics at some hospitals also, like the U of Maryland pediatric center's celiac clinic.

[caek-is-a-lie]

  Nicholasmommy said:

Yeah, tell me about it!!!! Part of me thinks I should just take him off gulten and tell them to go to hell.

IMHO just do it! I mean, you don't need a Rx to take him off gluten. You can just try it and see if it works. If you still want the biopsy, I'd find another doctor. You have WAY too many positives staring you in the face to put up with their BS. There's lots of references on this site to good doctors, maybe you can find one in your area.

I mean why the hell would they give him an appetite stimulant to make him eat more poison and get sicker? That's insane.

And I totally know how you feel, btw...I've been through the ringer with dr's before. It sucks! Especially when you know you're right and they won't listen and call you crazy. Hang in there!

[gfb1]

  Nicholasmommy said:

Yeah I am really going to think about it b/c this is crazy esp since they are trying to get him to take an appetite stimulant that can give him seizures!!! I have a lot to think about!!

what 'appetite stimulant'?? what other meds is your son taking?

i haven't been following your other posts closely enough; but...

was your son low birth weight to begin with?

does he have any other genetic disorders?

did you breast feed or formula? did he do well?

is the FTT new (perhaps since the introduction of solid foods)?

i realize that i'm an anal-retentive-science-type who puts everything into a spreadsheet, but, if i were you;

i would have a food diary - i would also record anything out of the ordinary; diarrhea, vomiting, rashes etc.

i would chart your sons body weight. weight gain is the single-most sensitive indicator of disease states -- in fact, organisms have reduced body weight gain in response to diseases/stressors BEFORE there are other clinical indicators (since your body mobilizes energy resources to fight/cope instead of 'grow').

[Nicholasmommy]

  gfb1 said:

what 'appetite stimulant'?? what other meds is your son taking?

i haven't been following your other posts closely enough; but...

was your son low birth weight to begin with?

does he have any other genetic disorders?

did you breast feed or formula? did he do well?

is the FTT new (perhaps since the introduction of solid foods)?

i realize that i'm an anal-retentive-science-type who puts everything into a spreadsheet, but, if i were you;

i would have a food diary - i would also record anything out of the ordinary; diarrhea, vomiting, rashes etc.

i would chart your sons body weight. weight gain is the single-most sensitive indicator of disease states -- in fact, organisms have reduced body weight gain in response to diseases/stressors BEFORE there are other clinical indicators (since your body mobilizes energy resources to fight/cope instead of 'grow').

The doctors wanted to give him periactin. The pharmists said that there is no way that my son should be taking that b/c it is not recommend for a child under two and esp for a child that under weight. My son does not take any other meds

My son was 8 pounds 1 ounce at birth. He has been breastfeed since birth and always did very well. He dropped in the charts a little when he was very young but he was still very average and it is not at all uncommon for breastfeed babies to drop a little in the charts anyways. Plus, I am 5'2 so I wasn't expecting a gaint for a child.

Then between 9-12 months when he really began to eat solids he suddenly dropped off the charts (considered FTT.) He did not grow at all during that 3 months and only put on 10 ounces. From that point on he has not gained much weight at all maybe about 1 1/2 pounds. At 17 months I started to give him pedisure with whipping cream in it and he grew over an inch in two months which is just so interesting b/c it is GULTEN FREE.

So my thinking is that I am just going to just take him off of gulten and see how he does. I am just not willing to wait two months for the doctors to get their heads out of their butts and do the biopsy. I am all for doing the bone scan, fecal sample, and what ever eles that is safe so that we look at all areas to make sure that he is ok.

So what do you think? What would you guys do?

It is so hard making this decision b/c you never want to make the wrong one but I just have to follow my instincts.

[gfb1]

  Nicholasmommy said:

The doctors wanted to give him periactin. The pharmists said that there is no way that my son should be taking that b/c it is not recommend for a child under two and esp for a child that under weight. My son does not take any other meds

periactin is an antihistamine. use to stimulate appetitie is a common off-label use. while it's safety/effectiveness have not been rigorously tested for children under 2... there is nothing magical that happens between 23 and 25 months of age.... so your doc probably thinks that 20 months is close enough.

  Nicholasmommy said:

My son was 8 pounds 1 ounce at birth. He has been breastfeed since birth and always did very well. He dropped in the charts a little when he was very young but he was still very average and it is not at all uncommon for breastfeed babies to drop a little in the charts anyways. Plus, I am 5'2 so I wasn't expecting a gaint for a child.

Then between 9-12 months when he really began to eat solids he suddenly dropped off the charts (considered FTT.) He did not grow at all during that 3 months and only put on 10 ounces. From that point on he has not gained much weight at all maybe about 1 1/2 pounds. At 17 months I started to give him pedisure with whipping cream in it and he grew over an inch in two months which is just so interesting b/c it is GULTEN FREE.

so... last question;

what was he eating when he started with solids?? when did you introduce wheat?

frankly, if you suspect wheat -- it is fairly simple to get him eating rice cereals, bananas, other veggies, etc ... and lord-knows-what-else-babies-eat at that age (my 'baby' is 254 months old ... and i don't remember)

as far as biopsies go... i certainly wouldn't keep the child on gluten for another couple of months just to do a test. however, i would continue with your doctors visits/ if you can stimulate appetite ON A GLUTEN FREE diet -- then you've got a perfect chance for him to catch-up in growth.

now. the reason to keep seeing/talking to the doc; is if you remove gluten -- and after a month you still have problems. then you can proceed to investigate other options/diagnoses unencumbered by the spectre of celiac.

of course, that's just my $.02. but, its what i would do for my kids....

[Nicholasmommy]

  gfb1 said:

periactin is an antihistamine. use to stimulate appetitie is a common off-label use. while it's safety/effectiveness have not been rigorously tested for children under 2... there is nothing magical that happens between 23 and 25 months of age.... so your doc probably thinks that 20 months is close enough.

so... last question;

what was he eating when he started with solids?? when did you introduce wheat?

frankly, if you suspect wheat -- it is fairly simple to get him eating rice cereals, bananas, other veggies, etc ... and lord-knows-what-else-babies-eat at that age (my 'baby' is 254 months old ... and i don't remember)

as far as biopsies go... i certainly wouldn't keep the child on gluten for another couple of months just to do a test. however, i would continue with your doctors visits/ if you can stimulate appetite ON A GLUTEN FREE diet -- then you've got a perfect chance for him to catch-up in growth.

now. the reason to keep seeing/talking to the doc; is if you remove gluten -- and after a month you still have problems. then you can proceed to investigate other options/diagnoses unencumbered by the spectre of celiac.

of course, that's just my $.02. but, its what i would do for my kids....

He never liked baby food and refused to eat it most of the time. All he would eat for months was cheerios and goldfish (Gluten city!) I think that I introduced those at about 8-9 months so it makes perfect sense. I look back at his diet now and he eats so much gluten!!! I have been giving him less gluten in the last few weeks because as a mother I cannot keep giving my child something that is probably hurting him and his appetite has improved.

So about the appetite stimulant.... My son finally just hit the twenty pound mark and is 30 inches so he is only about the size of a one year old give or take. That just seems way to much of a risk! What do you think?

I do plan to keep going to the doctors and I do agree with them that we should also look at other angels too. I am taking in a fecal sample tomorrow b/c they want to see if he absorbs fat or not, he will have a bone scan done sometime too. He is also going to see an occupational therapist b/c he tends to chew and spit out his food some of the time. I will also be seeing a nutritionist for suggestions on how to get extra calories into the guy. I think that all angels should be looked at all within the relative same time frame. Nothing that they want to do at this point is invasive so I am all for it. I have a feeling the GI doctor is going to be pissed off!

As much as I respect the medical field, I trust a mother intuition more.

[dadoffiveboys]

  Nicholasmommy said:

He never liked baby food and refused to eat it most of the time. All he would eat for months was cheerios and goldfish (Gluten city!) I think that I introduced those at about 8-9 months so it makes perfect sense. I look back at his diet now and he eats so much gluten!!! I have been giving him less gluten in the last few weeks because as a mother I cannot keep giving my child something that is probably hurting him and his appetite has improved.

So about the appetite stimulant.... My son finally just hit the twenty pound mark and is 30 inches so he is only about the size of a one year old give or take. That just seems way to much of a risk! What do you think?

I do plan to keep going to the doctors and I do agree with them that we should also look at other angels too. I am taking in a fecal sample tomorrow b/c they want to see if he absorbs fat or not, he will have a bone scan done sometime too. He is also going to see an occupational therapist b/c he tends to chew and spit out his food some of the time. I will also be seeing a nutritionist for suggestions on how to get extra calories into the guy. I think that all angels should be looked at all within the relative same time frame. Nothing that they want to do at this point is invasive so I am all for it. I have a feeling the GI doctor is going to be pissed off!

As much as I respect the medical field, I trust a mother intuition more.

Your son sounds EXACTLY like my son - same age same symptoms. He stopped eating and the only thing he wanted was to drink chocolate pediasure (it is gluten-free/CF too btw) or eat pure protein (unflavored meat). He was negative on all tests (TTG was 20 and <=20 was negative), including biopsy - but then again when we gave him a slice of bread he didn't eat for three days. We took him off gluten and he started to eat again within 1 WEEK. I would highly suggest the gluten-free diet. BTW - we did a gene test of him too (later) and he was DQ5/DQ8 and when he got cross contaminated with gluten AFTER going gluten-free he showed signs of Dermatitus Herpetiformis all over his knees, buttocks and elbows. NEVER showed this UNTIL AFTER going gluten-free! We basically said "to hell with the tests" and made him gluten-free. He gained weight and spike at the growth charts. He was 20 lbs at your sons age and now he's 4 years old and 38 lbs! Go with your gut.. try the diet first and see what happens.

BTW - my doctor told me "it's ok he's just eating pediasure.. he's probably just a picky eater.. etc." I said.. um.. what the hell??? He wouldn't even eat CANDY.. no that's not normal. Now - he eats ice cream every night. He had to cut out milk too for about 6 months while healing (just as an FYI!)

GOOD LUCK!

[Nicholasmommy]

  gfb1 said:

what 'appetite stimulant'?? what other meds is your son taking?

i haven't been following your other posts closely enough; but...

was your son low birth weight to begin with?

does he have any other genetic disorders?

did you breast feed or formula? did he do well?

is the FTT new (perhaps since the introduction of solid foods)?

i realize that i'm an anal-retentive-science-type who puts everything into a spreadsheet, but, if i were you;

i would have a food diary - i would also record anything out of the ordinary; diarrhea, vomiting, rashes etc.

i would chart your sons body weight. weight gain is the single-most sensitive indicator of disease states -- in fact, organisms have reduced body weight gain in response to diseases/stressors BEFORE there are other clinical indicators (since your body mobilizes energy resources to fight/cope instead of 'grow').

I just reread your post about how organisms have reduced body weight gain in response to diseases/stressors BEFORE there are other clinical indicators.. That makes a lot of sense and he is starting to show other signs like a bigger belly and he gets a little bit of a rash some times.

[Nicholasmommy]

  dadoffiveboys said:

Your son sounds EXACTLY like my son - same age same symptoms. He stopped eating and the only thing he wanted was to drink chocolate pediasure (it is gluten-free/CF too btw) or eat pure protein (unflavored meat). He was negative on all tests (TTG was 20 and <=20 was negative), including biopsy - but then again when we gave him a slice of bread he didn't eat for three days. We took him off gluten and he started to eat again within 1 WEEK. I would highly suggest the gluten-free diet. BTW - we did a gene test of him too (later) and he was DQ5/DQ8 and when he got cross contaminated with gluten AFTER going gluten-free he showed signs of Dermatitus Herpetiformis all over his knees, buttocks and elbows. NEVER showed this UNTIL AFTER going gluten-free! We basically said "to hell with the tests" and made him gluten-free. He gained weight and spike at the growth charts. He was 20 lbs at your sons age and now he's 4 years old and 38 lbs! Go with your gut.. try the diet first and see what happens.

BTW - my doctor told me "it's ok he's just eating pediasure.. he's probably just a picky eater.. etc." I said.. um.. what the hell??? He wouldn't even eat CANDY.. no that's not normal. Now - he eats ice cream every night. He had to cut out milk too for about 6 months while healing (just as an FYI!)

GOOD LUCK!

Woo, our sons do sound very similar!!! His pedi said the exact same thing about being a picky eater, all I could think was no this is not normal for a child to not want to eat! I have been feeding my son much less gulten or feeding him "gluten light" for about three weeks and I have noticed that for the last 2 weeks he has been eating a lot more. I definitely think that there is some thing to it.

I spoke to the Nurse and I agreed to keep him "gluten light" until the biopsy. After the biopsy I am taking him off gluten no matter the results and see how he is doing. I strongly suspect he will do MUCH better gulten-free since he is already doing better gulten-light. The really annoying part is not having a "definitive" diagnosis by a medical professional.

Has that caused any problem's for you?

[happygirl]

There is value in the AGA IgA tests, especially in young children -

J Pediatr Gastroenterol Nutr. 2008 Oct;47(4):428-35. Links

Antigliadin immunoglobulin A best in finding celiac disease in children younger than 18 months of age.Lagerqvist C, Dahlbom I, Hansson T, Jidell E, Juto P, Olc

[dadoffiveboys]

  Nicholasmommy said:

Woo, our sons do sound very similar!!! His pedi said the exact same thing about being a picky eater, all I could think was no this is not normal for a child to not want to eat! I have been feeding my son much less gulten or feeding him "gluten light" for about three weeks and I have noticed that for the last 2 weeks he has been eating a lot more. I definitely think that there is some thing to it.

I spoke to the Nurse and I agreed to keep him "gluten light" until the biopsy. After the biopsy I am taking him off gluten no matter the results and see how he is doing. I strongly suspect he will do MUCH better gulten-free since he is already doing better gulten-light. The really annoying part is not having a "definitive" diagnosis by a medical professional.

Has that caused any problem's for you?

I went down the same path - FORCING my son to eat gluten for the biopsy. In his case, he just wouldn't eat but one slice of bread every three days and then the pediasure stuff. When it came to the biopsy, it was negative and they had a really hard time waking him up due to his low body weight (took 3 HOURS to wake up). If I had a choice I would have just gone gluten-free because when I got the negative biopsy they RULED OUT celiac. Then later when he got exposed to gluten (we make EVERYTHING at home and made him 100% gluten-free), he broke out like Dermatitis Herpetiformis. I did EXACTLY what you did though - I took him off gluten AGAINST the advice of the supposed 'celiac expert'. I then faxed him the results of the growth charts 6 months later from the pediatrician (which showed a complete reversal of failure to thrive) and he said "Oh I guess he is allergic to gluten but doesn't have celiac disease". I mean.. come on.. what does that mean?? Same difference I think!

GOOD LUCK though! With my other boys ( I have two YOUNGER boys now) I didn't screw around with the doctors again and just kept them gluten-free and it's been so great not having my children sick all the time. Oh, all their ear infections and reflux - all a thing of the past. I now have thousands of dollars of nebulizer medicine (I didn't pay for it insurance did) just sitting on my shelf because the asthma and GERD and scarey nights of waking up not breathing right are GONE!

[nora-n]

"Oh I guess he is allergic to gluten but doesn't have celiac disease"

This is nonsense, it is explained in one of the books, I thinkit is Dr. Greene's book. Allergies do gluten do not cause malnutririon or falling off weight charts, celiac does.

Maybe ask for a gene test instead of a biopsy?

nora

[dadoffiveboys]

  nora_n said:

"Oh I guess he is allergic to gluten but doesn't have celiac disease"

This is nonsense, it is explained in one of the books, I thinkit is Dr. Greene's book. Allergies do gluten do not cause malnutririon or falling off weight charts, celiac does.

Maybe ask for a gene test instead of a biopsy?

nora

My third oldest (failure to thrive) son is DQ5/DQ8 and I am DQ4/DQ8. We both have 'celiac' in my opinion. My second oldest had severe Asthma and Chronic Fatigue (at 4 years old) and is DQ5/DQ8 as well - which completely went away on the gluten free diet and he is now 6. My oldest son is DQ4/DQ5 but still has gluten problems too. The younger two I haven't tested yet but I'm think mom is probably DQ5/DQ5.....

Oh my 4 year old is now 38 lbs (he was 20 lbs 2 years ago at 2)

BTW - I agree with you that what that doctor said was nonsense - he was the one that originally thought 'celiac' and got me on the right track but negative blood tests and negative biopsies he 'ruled it out' which was a mistake.

We've been gluten-free for 2 years now and feel GREAT! Our health problems have disappeared

[Nicholasmommy]

Thank you for all the wonderful information guys. I feel that the best way for us to go is gluten light until the biopsy and the minute it is over than he will be gluten free. We had another good day of eating gluten light and that just makes me soooo happy!

[GottaSki]

You are doing all the right things...you are your child's best advocate...trust your gut.

This thread shows more than the knowledge accumulated, it shows the common sense that needs to be more present in medical discussions today.

I would never dismiss the wonders we have access to with medicine...I only question -- why not try the simple first?

Hang in there and feel free to private message me if you need to VENT...a mom worries enough without med issues.

[Nicholasmommy]

  GottaSki said:

You are doing all the right things...you are your child's best advocate...trust your gut.

This thread shows more than the knowledge accumulated, it shows the common sense that needs to be more present in medical discussions today.

I would never dismiss the wonders we have access to with medicine...I only question -- why not try the simple first?

Hang in there and feel free to private message me if you need to VENT...a mom worries enough without med issues.

Thank you very much for your kind words... I know that I am my childs best advocate. My son's first pedi told me he was fine and to stop trying to put him through all these tests. I spoke to another pedi in the same office and I got a similiar answer "he's fine." I knew in my heart he wasn't so I switch pedi and my son's new pedi said that she couldn't believe the other doctors said "he's fine" b/c it is not normal AT ALL for a child to just stop growing! I look back in complete horror b/c if I would had listened to the old pedi my son wouldn't have gone in for a check up until age two!

I have great respect for medicine but I believe more in common sense and a mother's intuition. No one knows their child better than the mother!