Mom-of-Two

Welcome to the club

I first suggest you have your kiddos screened. Sometimes at such a young age it can be hard to get accurate test results but I would be willing to bet, out of 3 kids, someone may be positive even without symptoms. I was surprised when it was suggested my kids get screened, and even more surpriesed when one of them was positive. It is better to check, and if normal, find out the dr's recommendations for re-screening. Sadly, we have to worry about genetics

I started out in a shared kitchen- still preparing food for my kids, but me and hubby ate gluten free meals. I had a separate strainer for pasta, a new cutting board, etc but still had gluten in the kitchen. I thought this was ok. I was making dinner once and stirred my gluten-free pasta with the spoon I was cooking the wheat pasta with it was then I realized how easy it actually is to do, even when you are aware and think you are doing it all safely! We made the decision to remove gluten all together at home. About that time was when we discovered my oldest was celiac as well, so next day I got a big box and off it all went we got a new cast iron skillet, new utensils, pasta pan, got rid of anything obviously unsafe, new toaster. Our pans were less than 6 months old, and nice stainless steel so we were able to keep those (but did replace the pasta pot).

It is easier for me with two of us to make sure our soaps, lotions, chap stick, etc are all gluten free. ALSO--- you need to check medications, gluten is used to bind things. I made lots of calls, Target emailed me with gluten info for their allergy, headache products, etc. you must be very proactive in calling and emailing- don't guess.

I think a vitamin is a great thing, probiotics, especially vitamin D and many times iron or magnesium. But, what's even better is to have your vitamin levels checked to get a baseline, and they will retest in 6 months to see if they've corrected themselves (as your gut heals, you will absorb your vitamins again). I was found low in vitamin D, iron, and folate at first- all excellent 6 months later. My 8 year old's vitamin D level tripled in 6 months too

I use Red Apple lipstick when I wear it (which is rare!) but they also make a chap stick/balm that is njce. My kiddo uses Badger lips balms. Email companies, to check cosmetics, watch things like sunblock and lotions. Softsoap brand is gluten free, Dove products like body wash and deodorant, shampoos, etc. I use some nice shampoo from Target called Organix, their entire line is gluten free.

Commenting on the above: when EMA positive, that tells you there is significant intestinal damage- my 8yo was EMA positive, positive TTG, and very low vitamin D at time of testing- but her biopsy was and I quote "beautiful" according to our first ped GI who then informed me to keep feeding her gluten- saw a second opinion who said that is crap, this child cleary has active celiac (I have celiac also), and to treat her as such. Drew me a picture of how easy it is to miss damage in children on biopsy. 6 months gluten free, she is EMA negative, TTG normal, and vitamin D tripled.

So.....the way I understand it is that EMA directly coorelates to intestinal damage- we should assume that my daughter had damage then, especially with her low vitamin D, correct? It has bugged me for 6 months that they found no damage, as a parent you just wonder! Now that she is EMA negative, does this mean healing has been totally successful then? I assume so if her vitamin D is now excellent (being absorbed). It just irks me that we put her through biopsy, they took plenty of samples, and it was missed!

I found out I have celiac a year ago, and because of genetics we had both kids tested. The GI ran TTG only as a screening, my youngest came back normal but my 8 yo had elevated TTG at about 80- strong positive. He advised a biopsy, which took me some time to decide on because I had sort of made up my mind that if either were positive on labs, we'd just make them gluten free, since I have celiac. But when that shock came to be, we ended up doing the biopsy. Totally normal, healthy biopsy, with plenty of samples taken with a good pediatric GI at the chidren's hospital. This guy told me NO celiac, to feed her normally and retest in 6 months. But we just felt so uncomfortable with this, we got another opinion and our current pediatric GI ran some extra tests- she ended up coming back very low on vitamin D and also EMA positive- so, that gave us our reassurance that she does in fact have celiac. Being as thorough as possible, he also had the biopsy samples re-ran through their hospital, and there was nothing missed. He drew me a picture on a piece of paper and showed the intestines, and an exampke of 6 samples taken, how much space was still there to have damage- so he assured me the damage was in there, likely missed or patchy.

Been 6 months gluten free, her TTG normal, now EMA negative, and vitamin D nearly tripled.

If a family member of someone has high TTG but normal biopsy I would be sure other things are tested to get better answers, but no, I would not chalk it up to something else given the celiac genetics.

My husband has a coworker whose brother has celiac- was diagnosed about a yer ago and felt great after starting the diet, but symptoms like you describe began creeping back- his GI diagnosed him with bacterial overgrowth. He is 110% after a few months of treatment.

Life changing for him.

I was diagnosed at 33, I believe mine was triggered by an open abdominal surgery in which I spent 8 days hosipitalized with sepsis after a burst appendix. I've also had 2 pregnancies, I feel that all contributed.

I would see a GI and get further testing, no question!