Frustrated With Results

[Nessabobessa]

Hi there, this is my first part, and hopefully someone can help!

My 8 year old son was diagnosed with celiac 5 years ago after he failed to thrive (age 2 to 3 didn't gain 1 once and only grew a cm). Each year we go for blood work and are seen by a specialist at the Children's Hospital and his Pediatrician.

His last blood results came back 16 U/ml which is borderline. His specialist said to keep doing what we're doing, he's growing and gave me another requisition for blood work. We had an appt with the pediatrician today and he was 37 U/ml!!! I don't know where he's getting it! We're all so careful and he says he's not sneaking anything. I will note that last summer he ate a chocolate muffin and got really sick and that scared him.

I usually only buy him things labeled Gluten Free, and he eats meat, potatoes, veggies. He's got his own butter, no double dipping knives in the PB/Jam. When I make him a sandwich, I lay down a piece of paper towel in case my cupboard has particles.

These are the only things I can think of:

Cheese/yoghurt

Tooth paste

Shampoo

Soap

My mom babysits him and makes bread a lot, not while he's there, but could flour be in the air he's breathing?

Looking forward to hearing from you all!

Vanessa, for Jayden

[notme]

there actually could be flour particles in the air if your mom is baking while he is around.  <not from breathing it, just from flour particles getting into your mouth and then swallowed)  i switched my soaps, lotions and shampoo/conditioner (anything that can get into your mouth and, yes, i get soap & shampoo in my mouth in the shower)  if you are doing any remodeling in your home i would maybe worry about that.  if he had a bad experience, he is probably pretty vigilant.  maybe try to keep a food journal?  i hope you find the culprit   good luck & welcome to the forum

[kareng]

The main issues I can see, assuming he is bringing and eating only his own safe food at school & other houses--

- eating in an environment where flour will get on his plate, food, etc from baking with gluten

- people sharing toasters, colanders, PB, etc.

- an enviroment where there is a lot of gluten and it might not be managed safely ( needing a paper towel before you make a sandwich on a plate).

My suggestions - that Grandma watch him at your house and give him only food you have purchased and prepared. Maybe try to get your whole house gluten-free for a few months to protect his health and see if that helps his numbers go down?

[bartfull]

Could be getting it at school. Play-Doh is full of gluten. Some schools do "projects" using flour too. Or it could be kids sitting next to him at lunch and getting gluten crumbs on his food. Or sharing snacks like chips which are gluten-free but are contaminated by gluteny fingers reaching into the bag.

[sunny2012]

I was contaminated by hubby baking cookies! I never even went into the kitchen. He spent an hour wiping down every surface. It was just from breathing in the flour in the air. The nostrils empty into the stomach.

 

Then there are the surfaces when it settles. It can even get into the cabinets - doors are not air tight. I'd suggest that mom stop being allowed to bake with flour in your home.

[Nessabobessa]

Thank you for the responses! I'm 99.9% sure he's not sneaking food at school, they have a strict no-sharing food there. He also knows to wash his hands after playing with play dough, but he's probably not doing it well enough though. I never would've imagined it would be this hard, and frustrating

[Zebra007]

Hi, I am an artist, and therefore I quickly became aware  that paint and crayons contain gluten,  so he could  possibly be painting or using crayons at school and then putting his fingers in his mouth.  Also  I can clearly remember chewing on my pencil at school whilst trying to figure out the complex answer to a Math question    I would ask your mum if she would mind not baking the day before he arrives, or that she sticks to one day a week of baking, and then has a major clean up afterwards, just an idea, as flour can definitely get everywhere.  

[Nessabobessa]

Here I thought the flour thing was far fetched, just grasping straws, but it seems like it really could be a factor! Interesting!

[bartfull]

Have you read the Newbie 101 thread in the coping section? That might give you some other ideas where it may be coming from.

[Not crazy]

My mom made cut out sugar cookies at Christmas time a couple years ago. I went over after she made them and sat at the table talking with her while she frosted them. Had a really bad reaction. I may as well of just ate one. At least then my reaction may have been worth it (she makes the best cookies). Now I don't go over for a couple days after she makes them, or does a lot of baking.

I gave up trying to do a shared kitchen. I was still getting trace amounts of gluten. Even had separate pots, pans, spatulas, anything plastic was not shared. Had a separate stand alone cabinet to put gluten items in. Next to it was a granite topped island cart where they made sandwiches, poured cereal etc. I did not allow floury mixes.

[MomBTired]

Some of the great people here taught me something. I was going crazy like you. My son is down to 32 as his lowest in 2 years. Found out that the number can be elevated by his thyroiditis and his gastro doctor doesn't know that. So other autoimmune diseases can keep it high and judging by the people here, think it's rare to only have Celiac

[notme]

just thought of one more thing - you say he washes his hands at school.  do they use soap and water or hand sanitizer.  hand sanitizer is made with grain alcohol and is not going to 'wash' gluten off like soap and water.  it just makes sanitized gluten (learned that one the hard way while on my first gluten-free camping trip.  could not figure out why i was feeling so badly!)  rinsing hands is better  

[icelandgirl]

just thought of one more thing - you say he washes his hands at school.  do they use soap and water or hand sanitizer.  hand sanitizer is made with grain alcohol and is not going to 'wash' gluten off like soap and water.  it just makes sanitized gluten (learned that one the hard way while on my first gluten-free camping trip.  could not figure out why i was feeling so badly!)  rinsing hands is better  

That's really interesting. I hadn't thought of that. It makes me wonder...are Clorox wipes enough to clean off gluten? Or is soap and water and scrubbing needed? Thanks

[nvsmom]

That's really interesting. I hadn't thought of that. It makes me wonder...are Clorox wipes enough to clean off gluten? Or is soap and water and scrubbing needed? Thanks

 

Water and soap is best.  Those wipes kill bacteria. Gluten is just a protein and doesn't need killing... although it would be nice if it was the case.    You want to wash away the gluten particles, effectively you need to remove them.

[Nessabobessa]

You guys are great! My Dr couldn't think of anything we were doing wrong, and suggested I join a web forum, I'm glad I picked this one . I never in a million years would've thought such little exposure could affect a person so much.

I'm lucky he has no reactions to it, other than the time he ingested the whole muffin.

Oh, and at school he uses soap and water, but being an almost 8 year old, I'm sure his washing skills aren't perfected that's interesting about hand sanitizer!

[icelandgirl]

Water and soap is best.  Those wipes kill bacteria. Gluten is just a protein and doesn't need killing... although it would be nice if it was the case.    You want to wash away the gluten particles, effectively you need to remove them.

Thanks Nicole. Ugh...I've been using them to wipe the counters when my kids do have gluten. Ugh! What do you use instead? I liked it because I wasn't getting gluten on my sponge. Feel so dumb!

[MomBTired]

You can still use the wipes, I do. I don't use a sponge. I use dishcloths instead and change it and the kitchen towel before I make dinner. Everything goes in the dishwasher and if it can't, gluten won't touch it. It's however you clean. I like the wipes since they go in the trash after

[nvsmom]

I'm lucky because my house is almost completely gluten-free.  Hubby has some granola, oatmeal, and a few sauces, otherwise that is it for gluten.

 

I do usually clean up with just a dish cloth and soapy water (and sometimes a disinfecting spray).  I change my dishcloths a couple of times per day (it's me and three boys home all day so the clothes get used more often than when everyone is out of the house) and immediately after a cc risk.  For instance, I rinse hubby's oatmeal pot very very well, then I rinse the brush or cloth very well, and then I rinse and fill the sink with soap and water, and wash his pot last.  Then the dishcloths go into the wash.

 

Wipes do work well to clean and sanitize.  As long as you use the wipes to wash the gluten off, and not to sanitize the gluten, you're golden.