6 Year Old Son... Confused By Test Results

[chickpea77]

ttg weak positive, anti g iga negative, anti g igg negative....

i was inconclusively diagnosed celiac about 5 years ago by my family doc (my symptoms are so bad that she told me not to go through with the testing because i would probably lose my job in the process-- i had cut wheat out of my diet prior to the blood test before i had even heard of celiac disease because i only had symptoms when ingesting wheat). i do not present normally as i get severely constipated, bloat until i literally look 6 months pregnant, i curl up into the fetal position because of the pain, and my body almost shuts down (i fall asleep and am next to impossibblw to wake up, in fact i stopped eating wheat because my husband was worried that one day i would fall asleep and wouldn't wake up again.

anyway, now my 6 year old is complaining about stomach pain and can't sem to eat a full meal. after cutting the wheat out for a week we noticed that he was eating like a champ, but once we reintroduced it we were back to the tummy pains and not eating again. he doesn't have diarrhea either....... i just don't know what to think. he is so skinny and i know he will be fine if we just cut the wheat out, but if he is celiac i want the diagnosis confirmed.

the dr says we need to redo the blood test or we can have the scope done. my son is teriffied and i don't want to put him through any unneccessary procedures....

any input would be SO GREATLY APPRECIATED!!

[mushroom]

Hello and welcome to the board.

I assume you had your son tested after your diagnosis five years ago with negative result. It is highly possible that in the interim he could have developed celiac. It would be good to know one way or the other particularly if he is not thriving. A blood test is not terribly invasive I know you don't like to subject your kids to such things, but they are are a vital part of medical information and I guess sooner or later he will have to have one. I am not a mom, but all the other moms on here have told stories of how they distract their kids and it is only really the actually prick itself when the needle goes in - it is not an especially painful procedure, rather just the surprise of it, so whatever you can do to distract him, pull funny faces, recite ditties, whatever it takes. The main thing is not to give him the impression that this is something that he should be afraid of.

If the blood testing comes back positive you can consider at that time if he should have the endoscopy and discuss it with the GI you are referred to, if any. It is perfectly possible to be celiac without having diarrhea, constipation, of a multitude of other symptoms. Celiac seems to present in different form in each individual, which has in the past made it hard to convince doctors to test for it. But if wheat gives him pain, it certainly sounds suspicious.

If you preferred doing the scope, they sedate them really well so he will not be aware of any of it, and I have not heard of complications from the procedure from any of our posters. If you would only consider doing one procedure then the scope is still considered more definitive providing it is done correctly, with at least six samples taken from different locations.

Now, on rereading your post, I am a bit confused. Were those your son's results or yours?? I was assuming they were yours, now I am not sure

[chickpea77]

Thank you for replying Those are his results. Where I am confused is the weak positive ttg. Does that mean he does have celiac or not? The iga and igg are negative, so I don't know what to think...

[mushroom]

Labs normally give ranges for their scores. E.g., let's posit that a score of <5 would be negative (0-4); 5-9 weak positive; >10 positive. Each lab sets their own ranges for the scores based on their particular testing. This would mean that if the ranges were as I set forth he could have a score anywhere between 5 and 9. Now obviously, there is a big difference between 5 and 9. 5 is only just above negative, whereas 9 is only just below positive. He is in no-man's land but depending on where he scored he is closer to one than the other. I would definitely redo the blood test if it were done some time ago.

[chickpea77]

hi, sorry!

his results are as follows....

gliadin as: IgA 4 ( <20: negative)

gliadin as: IgG 11 (<20: negative)

tissue transglutaminase IgA: 25 HI (20-30 units: weak positive)

so confused

[frieze]

hi, sorry!

his results are as follows....

gliadin as: IgA 4 ( <20: negative)

gliadin as: IgG 11 (<20: negative)

tissue transglutaminase IgA: 25 HI (20-30 units: weak positive)

so confused

hi, sorry!

his results are as follows....

gliadin as: IgA 4 ( <20: negative)

gliadin as: IgG 11 (<20: negative)

tissue transglutaminase IgA: 25 HI (20-30 units: weak positive)

so confused

where is his total IgA??

[chickpea77]

where is his total IgA??

these are the only results i got so i guess they didn't do that one? does ttg iga not count for that?

should i be asking for that??

[Seeking2012]

these are the only results i got so i guess they didn't do that one? does ttg iga not count for that?

should i be asking for that??

Yet again, another astounding example of the ignorance in the medical community. *facepalm*

[chickpea77]

Just called the dr and he is adding the total iga to the testing! Thank you for the tip!!

[chickpea77]

So we have boosted his glutn intake for exactly a week now and he has lost 2 lbs (and that was after eating dinner!). He is already so thin, and now his shoulderblades feel "sharp". Still no diarrhea/loose stools, but tummy aches when he eats.... Shouldn't he be gaining weight with all the pasta he has been eating?? We have to keep his intake up for another 2 weeks for the blood test.... Feeling like a bad mother

[GottaSki]

So we have boosted his glutn intake for exactly a week now and he has lost 2 lbs (and that was after eating dinner!). He is already so thin, and now his shoulderblades feel "sharp". Still no diarrhea/loose stools, but tummy aches when he eats.... Shouldn't he be gaining weight with all the pasta he has been eating?? We have to keep his intake up for another 2 weeks for the blood test.... Feeling like a bad mother

You are not a bad mother - celiac testing is beyond frustrating. His possitive tTG and symptoms are enough to diagnose for some doctors, but I do agree that getting all starting data before removing gluten is the best option.

I did not see a tTG IgG in the mix - and were the gliadin tests Deamidated Gliadin Peptide (DGP) - if not add these too.

Has there been nutrient testing - B12, D, K, Iron, Ferritin, Copper, Zinc along with CBC and CMP - if possible get all complete in his next draw - as it will give you a good snapshot before removing gluten.

Hang in there - you are researching and asking questions - that makes you a very good Mom

[chickpea77]

hank you for the info! i have booked an appointment for tomorrow morning because he has lost another pound i just want to get to the bottom of this before it gets any worse! he has been complaining with less and less ingestion. we have virtually cut out dairy while we are doing the challenge, just to get an accurate idea of how much of the pain is coming from the gluten.

i guess at this point, after boosting gluten intake in the house i am noticing my eldest son, who is almost 11, is completely out of sorts..... he can't seem to focus, quick to tears, yawning all the time, just not himself. maybe i'm getting ahead of myself, but if your younger child came back with a weak positive and you suffer from celiac disease yourself, would you test your oldest for it as well even though he isn't exhibiting any gastro symptoms?

thanks:)

[kareng]

It's genetic. All first degree relatives are supposed to be tested periodically, even with no symptoms.

First degree relatives = parents, brothers and sisters, children

[chickpea77]

thank you

[chickpea77]

so, we went back to the dr to go over everything that you have all suggested, as well as the intensive internet research i've been doing (argh!), and the dr said all of my research is spot on (thank you!!). he wants my son to keep eating the gluten until friday when he goes in for a repeat blood test (total iga, ttg iga, dgp iga and igg, and ema). after getting the test done (along with my eldest who will also be doing the bloodwork) i am to takehim off of gluten until we get a date to see the ped. gi. once we have the date we can go ahead with reintroducing the gluten because it could be anywhere from 3 to 6 months for the initial meeting. he said that we have just basically proved that he has Celiac disease, and will send us for the scope just to get a definite diagnosis, but he said that even if the scope comes back as normal it would probably be best to remove it from his diet anyway.

that is as good as a diagnosis for me to make up my mind about his diet, but my only concern is the gluten challenge..... has anyone done the 1.5 months, 4 slices of bread and had the scope come back negative? he has now lost 3.8 ponds in 2 weeks.... he is already SO skinny and needs to put on some weight..... is 1.5 months really enough to prove damage?

thank you again for all of your support--it makes me feel so much less isolated in trying to help my son

xo

[GottaSki]

I think your plan is perfect!

A gluten challenge does not guarantee positive pathology from endoscopic samples. The current challenge would be enough reason to remove all gluten. I do think an endoscopy is valuable - even after gluten removal -- if there is any way to move this up - I'd suggest that, but do not believe a 6 week / 4 slices of bread challenge is a good choice for your son. Perhaps down the road if you and your doctor think it is a good idea go with the 1-2 slices a day for at least six weeks - again if he gets extremely ill from the challenge I'd stop it.

Good detective work Mom -- this is the way we train our medical professionals -- one at a time

[chickpea77]

So, we got the results from the repeat blood test today. His ttg iga went from a 25 (weak positive 20-30) to 37 (moderate to strong positive >30). He was still negative in his gliadin iga (he got a 4) and gliadin igg (he got a 13) {both of these are <20 negative}. His total iga was in the normal range and his EMA came back negative. Dr. said he is pretty positive that he has Celiac Disease (between my own history, his weight loss, tummy aches, constipation since upping his gluten intake, and the ttg results). We have the pediatric gastroenterologist appt on Tues., February 19th. not sure what she will say from here on in... relieved about the results (at least we finally have some sort of idea of what is going on), but broken that my 6 year old will soon be missing out on pizza days, bday cake, play dough.... Just want to get an official diagnosis

[GottaSki]

So, we got the results from the repeat blood test today. His ttg iga went from a 25 (weak positive 20-30) to 37 (moderate to strong positive >30). He was still negative in his gliadin iga (he got a 4) and gliadin igg (he got a 13) {both of these are <20 negative}. His total iga was in the normal range and his EMA came back negative. Dr. said he is pretty positive that he has Celiac Disease (between my own history, his weight loss, tummy aches, constipation since upping his gluten intake, and the ttg results). We have the pediatric gastroenterologist appt on Tues., February 19th. not sure what she will say from here on in... relieved about the results (at least we finally have some sort of idea of what is going on), but broken that my 6 year old will soon be missing out on pizza days, bday cake, play dough.... Just want to get an official diagnosis

Completely understand your sadness. But once the transition has been made he will be feeling much better and he will live a much healthier life.

He can still have pizza, birthday cake and play dough -- let us know his favorites - we can help direct you where to purchase or replicate nearly anything -- my celiac teens have pizza regularly - we make it.

[chickpea77]

Thank you for your suport This has bee a stressful time. Honestly I am most worried about the scope because of what happened last time he was put out (he was tongue-tied and had to go for corrective surgery at 4 years old). They practically tore him off of me while he was letting out blood curdling screams staring at me and reaching for me as they took him down the hall to the OR.... And the fact that one of my best friends had a hole punched through her intestine during a colonoscopy--I know it isn't exactly the same, but still scares me! Argh... I just can't wait until all of this is over:-(

[GottaSki]

Oh goodness...poor baby and mama...I know it is tough but do try to distract - it has been a couple years since the other procedure -- for kids that can be enough to forget somewhat.

You will likely not sleep much up until the procedure, but try. Is there something you do for yourself to relax -- exercise, hot bath, etc. Do that - even if you have to get up extra early. Set the tone, make it clear it is something the doctors need to do and he will be safe.

Hang in there!

[Purplemummy]

Hi ,

I am in the UK & my son tested positive for coeliac by blood tests - My children have Diabetes & coeliac disease is linked with that - so is part of my childrens yearly blood testing .....

The professor ( who also works at Gt Ormond Street London as well as our Hospital a mile away ) said that we did not need to have endoscopic samples. That the blood test were enough ( we tested twice to confirm ) .

My son grew 5 cm in 3 months ...

He was 7 at the time .... Yes it was very sad as he had few symptoms so it was difficult for him to understand ..... But he sure loved being taller ..

Regards

[chickpea77]

2 days until we see the Pediatric Gastroenterologist.....I don't know why I am freaking out so badly because, regardless of what s/he says the issue is, he is going gluten free.... a weak positive ttg, then a positive ttg, a tummy ache every single time he eats and they seem to be getting more painful, plus I have celiac disease too.... There is no way I am going to keep poisoning him just to keep scoping him until enough damage shows up to diagnose him! *blush* perhaps I am getting entirely too ahead of myself.... guess we still have 2 days until we find out what the next step will be..... thanks for letting me freak out........

[GottaSki]

2 days until we see the Pediatric Gastroenterologist.....I don't know why I am freaking out so badly because, regardless of what s/he says the issue is, he is going gluten free.... a weak positive ttg, then a positive ttg, a tummy ache every single time he eats and they seem to be getting more painful, plus I have celiac disease too.... There is no way I am going to keep poisoning him just to keep scoping him until enough damage shows up to diagnose him! *blush* perhaps I am getting entirely too ahead of myself.... guess we still have 2 days until we find out what the next step will be..... thanks for letting me freak out........

Completely understandable...those doctor visits where they want to keep watching are very stressful. You know what to do and will. If you have any lingering angst...this is the place to hash it out

[chickpea77]

So we went to the Ped. GI this morning and my son is booked for his scope next Monday morning. They will take 6 biopsies. I was concerned that because his only positive test (tTG iga) was only at a 37 (20 - 30 weak positive/ >30 moderate to strong positive) that the biopsies would be negative/inconclusive but the Dr didn't seem too worried about it and told us we could start on the gluten-free diet immediately after the test! She seems to be pretty sure that Celiac is the issue here, which makes me very glad because the alternative to elCeliac when it comes to elevated ttg are much more ominous. Wish us luck! And once again, THANK YOU!!!

[chickpea77]

So, we just got back from the scope. The Dr told us they saw some slight redness, and then in recovery the nurse was reading the chart and said that they found some scalloping.... any opinions on what that might mean?