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!
Listerine, Crest, ACT anticavity rinses for kids, can any of them guarantee they are gluten free?
What do you all use on your celiac kids? I know Toms of Maine is a company that has gluten free oral care, and a gluten free anticavity rinse for kids, it looks like a strong mint flavor and I want to try it only if I have to, as my daughter isn't fond of that flavor.
Can someone explain EMA testing to me? My daughter had elevated tTG back in April (tested b/c I have it), had a normal biopsy in May. Doc said stay on gluten, no damage, no celiac. Didn't like that advice, got a second opinion and he basically said the same but was way more willing to search for a diagnosis. Re-ran tTG (had been 3 mos since initial tTG), ran EMA, vitamin D and iron, CBC. She had been gluten free at home about 2-3 weeks prior to the tests though. Her tTG was 44 (<20 normal) so down from 78.20 likely because oflower gluten diet 2-3 weeks.
Her EMA was 1:40 with a normal range of < 1:10 dilution. GI said she is "mildly positive" on EMA- ? Don't ou either have endomysial antibodies or not???? And regardless of the value, having them is quite specific to celiac, yes? I don't understand the EMA values, can anyone clarify?
My 8 year old's birthday party is this weekend, want to make gluten-free cupcakes with homeade cream cheese frosting (probably vanilla and chocolate). I have access to just a few kinds at the store, in fact our local grocery has no gluten-free mixes- no time to order online. I believe Namaste is at the store, we made their spice/carrot cake and it was AMAZING for my own birthday but I haven't heard anything about their chocolate or vanilla mixes. Any experience with kid and adult friendly gluten-free cupcakes, I would like to do chocoalte and yellow but either is ok. I do not want gritty and dry!!
I was also thinking of doing the yellow cupcake recipe by Elisabeth Hasselbeck in her cookbook, I believe she uses brown rice flour and coconut flour. But I have trouble finding some of the ingredients, may need to hit the health food store 30 minutes away.