Keep Pursuing?

[Mom-of-Two]

Hi everyone!

I was diagnosed 18 months ago, a few months later my kids were tested-

youngest had normal tests but oldest had + tTG and endomysial antibody, low vitamin D. Went on

to have normal biopsy, however she has reversed all tests and any symptoms (joint pain) on gluten-free diet for past

10-12 months.

We re-ran testing on my 5yr old because he has stomach aches, pediatric GI runs tTG and

endomysial testing, he was normal again.

Stomach aches continue, at this point what should I do? Ask for more testing? We are trying to

get him going to the bathroom on a more regular basis, as he struggles with this. Both pediatrician

and GI say his stomach pain is due to that, we have tried a few different fiber gummies with

little success- they want us to do Miralax.

He is a happy little boy, but does complain of stomach ache usually every day, it doesn't keep him

down, seems intermittent. I also should add, he eats little gluten- because our home is gluten-free.

[StephanieL]

We had + blood work and neg biopsy but resolutions of issues with gluten-free diet.  After the biopsy they gave us the options of scoping every 6 months (um, no) or going gluten-free to see what happened.

 

With the strong family history, I would ask for the genetic test (which I would assume will be +) and have him go gluten-free as well. If there aren't any improvements over 6 months or so perhaps it isn't gluten. I would bet there would be some improvement though.  

 

Good luck!

[mommy2krj]

I think the if he's eating very little gluten...that may be affecting the tests. Especially given the family history. I would ask the GI doc if he thinks he should be eating more gluten for the tests.
 

Or....given the family history....I'd just take him completely off gluten and maybe milk products too (or some kind of elimination diet) to see if you can determine the cause of the stomach aches.

I need to do another cleanse with my just diagnosed 6 year old. They want me to have him on Miralax every day for a while.....we shall see what happens after the cleanse.

It's always so hard to figure out why their stomach hurts to begin with....add in mysterious diseases and it's that much harder.

[nvsmom]

Unless you want him to eat increased amounts of gluten (slices of bread or so) for the required gluten challenge time (2-3 months), I would recommend having him go gluten-free. It is very possible that he has non-celiac gluten sensitivity (NCGS). If he had NCGS (which is much more common that celiac disease) then he won't have villi damage so the celiac disease tests will be negative.

 

I have two kids who I suspected also had celiac disease, but their tTG IgA tests were negative and the doctors refused to do more. They went gluten-free and are feeling much better even though the doctors did nothing to help with diagnosing them with anything. (I'm a "bit" anti-doctor now a days )

 

Give the gluten-free diet a few months to help him. It can take some time for bathroom hbits to improve - months.

 

Best wishes in whatever you decide to do.

[tommysmommy]

Given the family connection, I'd try diet options before medication. My 7yr old improved gluten-free but stomach/bathroom issues didn't completely resolve until we went mostly dairy free. Probotics help too!

[Mom-of-Two]

Well, X-ray yesterday revealed he has a bad impaction- basically colon full of poop, up to his rib cage

She has us doing Miralax 3x a day for the next 3 days, then a daily maintenance dose for awhile until we get results of some testing.

She has labs for iron, couple other things, and the other missing components of the celiac panel - he tested normal on tTG

and the EMA screening the GI did, but never had the DGP ones done so I asked and she agreed that it's time to get to the bottom

of this constipation issue. She feels a great deal of it is behavioral, holding it because it is painful etc and also just diet- he eats fruits

but basically only veggie is salad (romaine lettuce). He is very picky, and eats no fiber/iron rich grains at home since we have no gluten

in the house!

He's been on probiotics several years. None of the fiber we've tried helps.

At this point we are fairly certain he will either be positive on these tests or never test positive but feel better with diet change.

He just in the past 3 weeks starts complaining of wrists hurting, and begun cracking them, which was my daughter's only symptom!

Now to decide how long to wait- because he does eat gluten, not starting from scratch, how long to "gluten load" him in an effort to get accurate test results? He eats snacks that have gluten but not daily, he has normal food at restaurants and parties, play dates, outings,

etc and we do have a couple gluteny cereals which he eats with plastic spoon/paper bowl. I don't want to bring bread in the house and can't

cook regular pasta, so just try to achieve in snacks?

[nvsmom]

I have never fully believed that whole theory that kids hold it and cause constipation... I mean, what caused the initial constipation that made it so painful to go? I remember being in tears as child because it was so painful, and my mother having to "help" me. I just know that I didn't hold it back then, and I didn't as an adult either yet I used to OFTEN get so backed up that I could feel the lump going up my side to my ribs... I don't know, I don't think people do that to them selves on purpose unless they have a mental problem, which many docs think we do. LOL

 

I would extend the gluten trial for about a month. For those starting from scratch, doctors usually advise 6-12 weeks. You'll have to use your own discretion.   The usual amount is 2 servings per day in the equivalent of 2 slices of bread.

 

I don't think you have to worry about using paper plates and bowls if it is a "glutenous" meal. Soap and water gets it off fine. Just wipe down the counters and the table when he's done, and clean up the floor if any gluten-free eaters will eat off of it. Stuff like muffins, crackers, cookies, oatmeal, tortillas, pitas, pizza, Cheerios and Shreddies would make any kid happy - Oh! Goldfish crackers. My kids loved those and I used to have to keep them under lock and key or they would eat bowls of it in a day.  LOL

 

Good luck with the tests.

[Mom-of-Two]

I never thought I would be going out to buy gluteney foods and load my kid up on them LOL :-) he's gonna have fun with this experiment!

I was thinking a month also, especially since he will be eating daily snacks at kindergarten as well. I really wish I could've figured this out prior to school starting! If gluten does end up being his problem, I sure hate to make him feel miserable just as he starts school!

The pediatrician is running celiac screen which includes the DGP tests he hasn't been tested for yet. And I think it runs tTG which he's been negative on thus far, but maybe increasing his gluten intake will give us a more accurate result. She is testing him for all sorts of inflammation stuff too- sed rate, ANA, CRP, metabolic panel, CBC+diff, amylase and lipase, iron +TIBC, ferritin.

I AGREE------ and so does my pediatrician, what causes a kid to get fecal impaction!??!!!

[mommy2krj]

I have never fully believed that whole theory that kids hold it and cause constipation... I mean, what caused the initial constipation that made it so painful to go? I remember being in tears as child because it was so painful, and my mother having to "help" me. I just know that I didn't hold it back then, and I didn't as an adult either yet I used to OFTEN get so backed up that I could feel the lump going up my side to my ribs... I don't know, I don't think people do that to them selves on purpose unless they have a mental problem, which many docs think we do. LOL

 

I would extend the gluten trial for about a month. For those starting from scratch, doctors usually advise 6-12 weeks. You'll have to use your own discretion.   The usual amount is 2 servings per day in the equivalent of 2 slices of bread.

 

I don't think you have to worry about using paper plates and bowls if it is a "glutenous" meal. Soap and water gets it off fine. Just wipe down the counters and the table when he's done, and clean up the floor if any gluten-free eaters will eat off of it. Stuff like muffins, crackers, cookies, oatmeal, tortillas, pitas, pizza, Cheerios and Shreddies would make any kid happy - Oh! Goldfish crackers. My kids loved those and I used to have to keep them under lock and key or they would eat bowls of it in a day.  LOL

 

Good luck with the tests.

 

I agree! My little guy is full of poo as well and the doctors were trying to tell me it was from him holding it. Ummm...no. He's probably the most regular person in the house (or at least, the only one I really pay attention to at this point) and has never had any issues with pooping causing him pain unless he was sick with something and had several days of diarrhea. :/ But, I'm just his mom. What do I know. Believe me...the kid has no problem going to the bathroom whenever and wherever he needs to! His teenaged siblings, on the other hand, that are very aware of their peers and judgement and all that fun stuff...yeah, they would be better candidates for that.

[nvsmom]

LOL I always wonder why when docs think kids are holding it in and causing "C", why they don't think kids are forcing it out and causing "D"...

[mommy2krj]

LOL I always wonder why when docs think kids are holding it in and causing "C", why they don't think kids are forcing it out and causing "D"...

 Haha! RIght!