Myself and my 9 year old both have celiac. My 5 year old has tested normal with tTG test twice, and has a normal EMA screen several months ago. NOT a full panel. He continues with constipation and frequent tummy aches, but the pediatric GI we see feels this is just more diet and behavioral. (Holding it)
Should I push for more tests- the DGP tests on him? If so, how long do I need to up his intake to get accurate results? We are gluten free at home but he does eat gluten when we go places. He has MiniWheats a few times a week (paper bowl and disposable spoon per his doc to increase fiber. So he gets pretty regular amounts of gluten but not daily pieces of bread. BUT I want accurate results so I can quit this constant wondering.
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
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.
So, I got my celiac diagnosis a year ago, my 8.5 year old has been gluten-free 6 months and just had her follow up- her ttg in normal range (was 80) and she is now EMA negative (was positive 6 months ago). Her vitamin D also doubled and she appears to be absorbing perfectly now- I took my 5 year old along to the appt because he is having tummy aches, he complains his waist hurts-- He just had his well checkup with pediatrician, urine was normal, nothing out of the ordinary when examining his belly, she felt it was just a constipation issue- since we are gluten free home, he does struggle with pooping regularly. We are working on fiber.
He had a ttg test only, a year ago when my daughter was tested-- he was normal, but this GI says let's go ahead and test him now---- he says the amount of gluten he is eating is plenty for testing-- he eats snack at school twice a week, at home has macaroni a few times a week, maybe 1-2 times a week, breaded chicken when we are on the go. Cheerios at home, but they don't really have gluten in them- just contamination risk. He eats normal food at events, whatever but I hesitate to say he is eating it super regularly. He said the lab order is good for 30 days (3 weeks now left to get labs done). Is it worth it to load him up over the next 3 weeks and how would I do that with no bread in the house, just do cereal, regular pretzels, etc daily maybe???
What do you all think?
I really want to rule this out, the genetics are not on his side!
This process is infuriating!! I spent an HOUR and 20 minutes at Walgreens going up and down the isle, reading labels and searching on my phone for gluten free cold meds/etc for children. I want to have my cabinet ready for cold season, we've already had a couple sniffles circulate! I get ibuprofen at Target (their brand) that is clearly labeled gluten free, the children's dye free ibuprofen as well. I also verified with the manufacturer on a couple of Target OTC products. I wanted to have some Tylenol on hand even though if my kids have a fever I usually use ibuprofen- there have been occasions when dealing with a high fever or really sick kiddo, that my pediatrician suggests alternating the two. So, I cannot find ANY generic OTC acetemetephen that apepars to be gluten free- I picked up the grape Tylenol children's liquid- I could not verify online but past post searches suggest this is TESTED and IS confimed gluten free?
I also have a list from gluten free drugs, that lists Benadryl and Dimetapp as gluten free. (the liquids) I had Dimetapp in my hand (nighttime cold and cough) and put it back b/c Benadryl D allergy/sinus is the exact same but twice the potency so only 1tsp needed rather than 2tsp, and made it way cheaper. But on the Benadryl site, it says they do not test so they don't add gluten ingredients, but there could be due to manufacturing. I also called the manufacturer of Triaminic becasue I have som ein my cabinet- both orange cold/allergy liquid and the purple nightime cold/cough liquid. I was told the same thing, no gluten, but they cannot say about manufacturing because they do not test their procucts.
What do you experienced moms do with this issue----- do you safely use products that are gluten free but are not TESTED for the presense of gluten?
I have not opened the Benadryl cold/sinus-- was curious your thoughts on this, or if you moms have suggestions on using a safe cold medication- is Dimetapp better, for example?
I do not want to be in the kitchen trying to fgure out what to give my sick kid at 2am, which is why I was trying to get some safe products today!
I use Ricolla drops for my 8 year old as well, and at least their site says no gluten in any of their products!
I do not usually use medications on my kids, but I like to be prepared- last spring my kids got hand, foot and mouth diesase and I tell you what, my 4 year old was about as sick as they come, even had 2 ER visits. It was bad and I was glad I had what I needed- you just never know and I like to know that my products are safe- I have verified them for myself (also celiac) but my products are a bit simpler- I use ibuprofen/Sudafed (Walgreens brand labeled gluten-free, behind the coutner) and Benadryl ( I buy Walgreens brand which is labeled gluten-free) when sick!