Vent/feeling Frustrated In General

[Sesara]

I feel like a bad parent today - we've been technically gluten free for almost 4 weeks, but since I am still occasionally eating gluten until I can get bloodwork (which will hopefully happen on Monday) and he is still comfort nursing 1-2x per day and getting colostrum, I'm sure that he gets a little "glutened" every time he nurses. His sleep has very off this week, so I'm at a loss as to whether it was just the act of nursing, teething, or cross contamination from something else, and while I realistically know that he's getting a tiny amount of gluten through me, I'm sabotaging our efforts at gluten free, I'm also frustrated that his diapers aren't improving.

And sure, it's easy to say "just wean him", but the reality is very different, and being 8 months pregnant, my abilities to get him down for a nap or calm him in a meltdown are greatly limited. I really just want to be fully gluten free with him, but then I also have no idea how long it will take the levels of gluten in my colostrum to go away. Wish I had some idea of the PPM of gluten in a teaspoon of colostrum.

And then I'm frustrated by friends who "don't get it". I don't blame people for not knowing that if he has food prepared on a surface that may be contaminated, like a scratched non-stick skillet or cutting board, it may not be safe to eat. But he's a toddler. They will snatch and eat anything that looks tasty to them, so I cannot for the life of me understand why my friends whom I have talked to extensively about how he will have to be wheat free for his entire life don't seem to think that maybe it's not a good idea to bring cheerios with their own toddlers when they come over for a play date. I'm fine with supplying gluten free snacks, it's just a little infuriating to find cheerios on the floor after a play date. I know I just need to say something, but I don't see why this has to continue to be an issue - if their kid had a peanut allergy, I would be sure not to bring peanut containing snacks around them - I've always asked about peanuts or other potentially allergen containing foods when I'm not sure if parents would be upset bringing them out, so when it's a known issue, I just don't get where other people's brains are on this.

[Mizzo]

I find that if you don't need have an Epi -pen people don't take it seriously. I also think many people just don't care enough to ask questions and learn about it.

The most accommodating and understanding people are parents of other allergens and/or vegan and vegetarians.

A friend of mines husband has meat protein allergies so there house is meat free including gelatin. She has done more Celiac research than many in my family just so she understands my DD. :-)

I don't see how you can prevent the gluten from contaminating your child without stopping eating gluten or nursing, I hope for both your sakes the tests are due very very soon .

Good luck

[tarnalberry]

Totally my own opinion and a "what I would do" in this situation: go gluten free yourself and wait until you have finished breastfeeding (even if that's three years from now) to go back and gluten and test yourself. You are not "probably" contaminating your son - you are contaminating him. Amounts don't entirely matter. You don't need to consume gluten for a healthy pregnancy and healthy breastfeeding. I would rather make a conservative assumption for myself and test later when my body is entirely my own again. (I say this as a still-breastfeeding-a-toddler mom myself.)

And yeah, other people just don't get it. They don't make the connection. Eh... we get mom brained sometimes. Tell them. Be polite, but firm, "I'm sorry. We are still trying to find all the sources of contamination that are making our little one sick. Please do not bring any food over; I promise I'll have appropriate snacks available." (And, of course, DO have plenty of snacks to share!)

Good luck!

[Sesara]

Thank you for the feedback! I am feeling a little more positive now. I actually glutened myself up good today, before I saw your suggestion, but I'm hoping that it's the last time I will do so before Monday, when I will hopefully be able to convince my new doctor to order the celiac panel for me, based on the fact that my son tested positive for DQ2.5. I also managed not to nurse him today, and hopefully I can avoid it tomorrow, since my husband is home for naptime on the weekend and is great about getting him down. And then I can finally start to get all the gluten out of my system.

However, I did have a breakthrough on why sleep has been so rough lately. When we started doing the gluten-free diet, we also cut out anything we thought might be irritating his gut, including ibuprofen which we often give with teething. Another thing we've given it for in the past was growth spurts, but he hasn't had one in so long I'd forgotten about that. Well, he was making me rub his knees and feet a couple nights ago during a middle of the night waking, and I didn't even think about it at the time, since I was half awake, but tonight, my husband pointed out that his 18 month onesies are finally starting to get too short in the torso, and as he was falling asleep tonight, he was making us both rub his foot, knee, and hip joints, and his back - all the places my husband complained about growing pains when he was growing up. So I think maybe he's having his first growth spurt in forever - I'm seriously thinking it's been at least 6 months since we've seen any real growth, and he's only been barely increasing for more than a year - he was wearing these 18 month clothes since spring of 2011.

This makes me feel encouraged that he is probably starting to heal a little, even if I'm causing it to take longer than it should.

[MitziG]

you need to be very firm on thhis one. Before playdates, remind the moms that they can not bring snacks. Simply say "timmy is so sensitive that we can not risk him coming into contact with gluten at all, and I know it is difficult for others to know what is safe, so I will have snacks for your kids here." Yes, it feels awkward, but you are going to have to be firm like this for many years to come, so get used to it. To your kid, gluten is poison. You would not hesitate to speak up if they brought actual poisons and left them lying around. Well..that is what they are doing and it is just as serious. It may not make you popular, but your childs safety needs to come first.

[Sesara]

Well, my Celiac Plus panel is off. So now I can be 100% committed to being gluten free for my son's sake, and possibly my own. So at least that's out of the way.

[upwitht21]

I have a sign on the door that says "gluten free home please no outside foods". Everyone's been fine with that and I run a daycare =)

[Sesara]

Thanks for the suggestions. Now that I know what's working, I know I just need to speak up louder...which is hard for me, but I will learn.

I feel like we're having a victory today! He has only pooped solid for more than 24 hours, and he has grown probably close to an inch in the last week. And his belly is starting to look less swollen and normal. I think he might have gained weight too! I might even be able to go back to using his cloth diapers, which I now realize stopped fitting properly because of his belly bloat. And I'll have something to show the pediatric GI when we visit on Tuesday for his follow up.

[melikamaui]

I tried to post this once before but it disappeared, so my apologies if it posts twice.

Like the other poster mentioned, I have a sign on my front door. It reads:

"Due to concerns for our children with Celiac Disease, we ask that you please

1. Remove your shoes upon entering

2. Wash your hands immediately

3. Do not bring any food containing gluten into the house

Thank you for doing your part to keep them healthy and safe!"

Not only does it serve as a reminder to our friends to leave their goldfish, etc in their car, it also scares away salesmen!

[Sesara]

I tried to post this once before but it disappeared, so my apologies if it posts twice.

Like the other poster mentioned, I have a sign on my front door. It reads:

"Due to concerns for our children with Celiac Disease, we ask that you please

1. Remove your shoes upon entering

2. Wash your hands immediately

3. Do not bring any food containing gluten into the house

Thank you for doing your part to keep them healthy and safe!"

Not only does it serve as a reminder to our friends to leave their goldfish, etc in their car, it also scares away salesmen!

Thanks! I am actually hosting our weekly playgroup again, and I posted a message to everyone asking them to please remember that we are a gluten free household so only bring gluten free snacks, a list of what common cereals were fine, and the offer to provide snacks to anyone else's toddler as needed. I don't mind feeding other people's kids at all, so that option totally works for me.

I have been gluten free with only one slip up where I ate some tortilla chips that may have been CC'd slightly from a fryer, but hopefully, that minute amount won't affect my colostrum too much. We still haven't attained perfectly formed poop yet, but I still feel like we have improved a lot - the "gritty" poop has entirely disappeared, it's just softer than I would prefer.

Tomorrow is his one month follow up with the pediatric GI. I am sure that he is taller, and hoping that he has gained weight in the last 4 weeks, so that I can point that out as a result of going gluten free along with the positive genetic screen. Fingers crossed, our GI will be willing to diagnose. If not, we will be on the 2nd opinion trail for sure.