I Need Support With My 3 Year Old!

[sol's mom]

hi, i'm new here. my 3 year old daughter and i both have celiac. we found out when she was 6 months old. she and i have been strictly gluten-free ever since, but because the tiniest amounts of gluten cause her severe constipation and stomach pain and diarrhea for days, she's never had more than a couple of weeks without being sick. her most recent gluten attack started when she ate a piece of fruit at a restaurant from her brother's plate. one side of the fruit had touched his wheat noodles.

even though our house is completely gluten-free (including body products), she is often sick, and i am afraid it's because of cross contamination. we've already given up food from bulk bins (most of our food comes from the natural food co-op and other health food stores), but many of our gluten-free foods come from facilities which process gluten. it doesn't seem like most people with celiac avoid these facilities entirely. i feel like i need support in making this drastic step. i hate to take away more food options from my daughter, but she is spending most of her life so far in pain.

my daughter also has frequent urinary tract infections. does anybody here deal with that?

thanks for any ideas.

sol's mom

[shayesmom]

hi, i'm new here. my 3 year old daughter and i both have celiac. we found out when she was 6 months old. she and i have been strictly gluten-free ever since, but because the tiniest amounts of gluten cause her severe constipation and stomach pain and diarrhea for days, she's never had more than a couple of weeks without being sick. her most recent gluten attack started when she ate a piece of fruit at a restaurant from her brother's plate. one side of the fruit had touched his wheat noodles.

even though our house is completely gluten-free (including body products), she is often sick, and i am afraid it's because of cross contamination. we've already given up food from bulk bins (most of our food comes from the natural food co-op and other health food stores), but many of our gluten-free foods come from facilities which process gluten. it doesn't seem like most people with celiac avoid these facilities entirely. i feel like i need support in making this drastic step. i hate to take away more food options from my daughter, but she is spending most of her life so far in pain.

my daughter also has frequent urinary tract infections. does anybody here deal with that?

thanks for any ideas.

sol's mom

My dd is also highly reactive to small amounts of her allergens and gluten. We've had to remove a lot of foods which should be safe...but for her, just don't work. So my suggestion is to keep track of the manufacturers and products she does well with...and ditch the rest. For example, we've had several reactions to the Envirokidz breakfast bars. So I will no longer waste my money on those products. I can't see the point in working so hard to keep a child healthy and then having those efforts negated by companies that just don't get it....

As for the urinary tract infections, you may want to try a supplement called D-Mannose. It works very well on UTIs caused by e.coli (which is a main culprit in causing most UTIs). It's the sugar extracted from cranberries. You can find more information on it on PubMed.

P.S. My specialist at the Cleveland Clinic once told me that the number one cause of UTIs was constipation. This was a couple of decades ago when I was suffering from chronic kidney and bladder infections....but considering the constipation issues your dd is having, I would think this connection would be worth researching a bit.

[swalker]

You may want to look into supplementing her with Glutamine (contains no gluten) an amino acid that plays an important role in gut-wall integrity and probiotics which will help with healing and maintaining good flora to minimize reactions.

[sol's mom]

thank you. the responses are very helpful.

we just gone done with a week of effects from being glutened, including a uti, and today a woman at the park gave my daughter a pretzel! now i'm up in the middle of the night again with my daughter and so glad i have this resource to go to for support!

[weluvgators]

Hugs, Mama! It IS hard!!

We have three young, super sensitive children, and it is difficult to navigate. We have also had to eliminate many foods that *should* be safe, but they are not. We have had to eliminate several foods labeled gluten free because a 20 ppm threshold is not an effective way for us to manage our gluten sensitivity. We have had to take extreme measures to ensure the health and wellness of our children, as gluten is everywhere in our world today. I hope that you can figure out the sources of her gluten CC or possible other contributors to her illness.

So, does your home have pets? Is your DD on any medications and/or supplements? If so, have you verified that they are gluten free? Do you have other people enter your home? Are there any protocols in place for gluten eaters / pet owners that enter your home? Have you implemented stringent hand washing protocols? Is there any play-doh in your home? What about crayons and other craft supplies? Is she in any childcare setting outside of the home?

Those are some ideas off the top of my head for how we have been troubleshooting our extreme sensitivity. I would be happy to expand on more of our strategies if you are interested.

[sol's mom]

Hugs, Mama! It IS hard!!

We have three young, super sensitive children, and it is difficult to navigate. We have also had to eliminate many foods that *should* be safe, but they are not. We have had to eliminate several foods labeled gluten free because a 20 ppm threshold is not an effective way for us to manage our gluten sensitivity. We have had to take extreme measures to ensure the health and wellness of our children, as gluten is everywhere in our world today. I hope that you can figure out the sources of her gluten CC or possible other contributors to her illness.

So, does your home have pets? Is your DD on any medications and/or supplements? If so, have you verified that they are gluten free? Do you have other people enter your home? Are there any protocols in place for gluten eaters / pet owners that enter your home? Have you implemented stringent hand washing protocols? Is there any play-doh in your home? What about crayons and other craft supplies? Is she in any childcare setting outside of the home?

Those are some ideas off the top of my head for how we have been troubleshooting our extreme sensitivity. I would be happy to expand on more of our strategies if you are interested.

wow, thank you for that great response! it's good to hear of someone else being so extremely careful.

what does CC mean?

our house is intended to be gluten-free, including indoor pet foods (we have 1 dog and a cat inside/outside and 7 chickens outside) and body products and supplements. no play dough. i read labels on everything. no one is on any meds. i used to have a note on our door that said Gluten-Free House, but i noticed that people didn't pay attention to it or didn't know what it meant or thought THEY didn't have to worry about it, so i took it down and verbally tell each visitor that no gluten is allowed in our home. gluten still gets in that way sometimes. we have frequent overnight guests, and it is very challenging.

here is our exception: my husband insists on having a small box on top of the fridge where he keeps a few gluten foods, and he is supposed to only eat them outside, but he's not 100% although when he does it inside he is very careful (like a very contained bowl of cereal that he washes himself.) he is extremely careful about not putting a bread knife in our butter or putting any gluten on our cutting board and stuff like that. otherwise, my husband and other kids eat gluten when we go to the farmer's market (outside) and when we go out to eat, which isn't often and seems to really be too dangerous for my youngest.

i am thinking i should get my other 2 kids tested also. my other daughter particularly complains of occasional stomach aches and has pretty frequent diarrhea, but her symptoms are so mild compared to my youngest, that until now i hadn't seriously considered the possibility.

i was thinking that the hardest part is dealing with foods and products that officially contain no gluten but still make us sick. figuring out which ones they are and eliminating them. and how constant the accidents are. my little girl has been sick her whole life with little interspersed spells of wellness. it looks the same way every time, roughly every 2 weeks. but then this lady at the park gave my daughter a pretzel yesterday after i felt like i was turning a new leaf and becoming extremely careful, and i just felt like the world in general was unsafe for my daughter. it's a terrible feeling.

do any of you have trouble when your kids visit a messy house? seems my daughter comes back from this one friends' house sick even if she didn't eat anything, just because there are crumbs and all kinds of stuff with gluten, like lotion and things, around everywhere. i don't want to not allow her to go over there, but i'm thinking she should at least primarily just play outside when she's there.

do you have other ideas for me? or do you think i'm doing everything i can?

[swalker]

It certainly sounds like you're careful. In today's climate I thought everyone knew better than to feed other people's kids!

Being that she has been so sick for so long her immune system is very comprimised. I'd concentrate on building it up so she's not so sensitive. The two supplements I've already suggested would be good in addition to a quality multivitamin and a good omega 3 supplement as well.

[taweavmo3]

I don't have alot more to add, except that I am finding comfort that there are other parents who have children that are as sensitive as my daughter.

I'm actually thinking of taking this step too, I'm noticing a trend of reactions that occur after I give her something that is "made in a facility" or made by a company that also makes wheat products, even though it's marked gluten free. And the messy house question??? Funny you mention that, b/c I've noticed the same thing after we come back from my SIL's house. The next day, I swear I feel like I've been glutened, even though it seems crazy.

We too seem to have a great few weeks, and then we have a setback. We've been at this for four years now, so I feel like we should have more good than bad at this point. We are still leaps and bounds better than when she was diagnosed, but I still don't feel like she is 100% well yet. Of course, my dd is in school, where I'm sure she touches gluten from time to time. I found a project in her notebook the other day......made with Cheerios.

Sigh, I wish I had more help for you! But no, I don't think it's too drastic of a step to remove all products that might have the slightest bit of gluten, even if it's less than the 20 ppm standard. For many, that is still too much. Good luck, and welcome!

[weluvgators]

what does CC mean?

CC is Cross Contamination. We have come to understand it better than I ever wanted. Fortunately?, we have a DD that is so obviously reactive that we are very motivated to be Gluten Free. However, it was easier for me to understand and convey an adult message when I came to realize that *I* could tell when we were getting Gluten CC. As my daughter has gotten older it is becoming a bit easier to manage, but she has very limited exposure to gluten. She struggles to do OK when we go to a shared play space, even at the playground. It is very difficult for a young child to remember the importance of clean hands when they just want to eat a bite in between all of the running at the playground, but we have come to understand that the stringent hand wash protocols help keep us feeling well.

It sounds like you are doing great! We did eventually have to ask my husband to better clean himself after gluten eating. Of course, it was when *I* recognized getting glutened from him that it made sense! He has a beard, so he has learned to be much more diligent. He has his own washing protocol that he follows when he gets home from work, and I try to ensure that he gets the space to do that. But really, it is simple, good, hygienic practices! There is just a special focus on understanding how easy it is to spread gluten. Now his car on the other hand . . . oh, well! We use my car for the family!! And it is gluten-free except for some eatings that DH did long ago before we were as serious about living gluten free . . . and by

[ChemistMama]

How much does your daughter understand of her illness? I have a three year old son, diagnosed at 18 months, and I've brought him up to be wary of most all foods unless he asks me. We went to a picnic at my daughter's school and he said 'mommy, is there anything gluten free on table for me?" Granted, he does poke at things not knowing if they're gluten-free, then I have to wash his hands, but he is wary. Fortunately he's not super sensitive.

One other tip, most people don't understand what "gluten free' is. You may want to change the sign on your door from "gluten free zone" to something more direct, like "No OUtside Food Allowed Unless Approved by the Management". You have to be a little strict if you're going to protect your daughter!!

And yes, do get your other kids tested!!

[fripp017]

Hi,

I was just browsing through this post and the replies. I have Celiac Disease. My two children have been screened by blood tests and both have come back with positive results. I am in the process of getting them tested. My son is 4 and my daughter will be 2 in a week. I have looked online, aniticipating their results, and I have found a couple of cute and creative ways to id your children with medical issues. I read the post about the pretzel given to her by a stranger and that makes me mad and worried all at the same time. Do you have a medical id for your daughter? I know that when my children are diagnosed they will have one on them one way or another. I have found sites with medical id shoe tags, zipper tags, and kid sized bracelet and necklaces. That might be something to consider since you can't be sure that friendly park visitors won't be slipping your kids food. If your daughter had a medical id and someone doesn't ask you first about something, you have the right to enlighten him/her on the purpose of a medical id and the disease your daughter has. Just thought you might want to consider it as an option since you can't really control the cross contamination issue with food companies.

[Alex J]

In a rush with a child on my lap but wanted to say that we do avoid pretty much anything made on the same equipment/same facility. I also call manufacturers to find out how their foods are produced (if they appear gluten free on the label but carry no warning labels).

I have always done this, and it does massively cut down on the number of foods we could eat. But my son had food allergies before he had celiac, so I had seen from that how massive an effect a tiny amount could have on him (eg chew and spit out a carrot that had been on a plate with fish, to which he is allergic, and he had to be rushed to the ER with disfiguring swelling). I can't SEE the effect from gluten, but that doesn't mean it's not there.

[Coach Carisa]

hi, i'm new here. my 3 year old daughter and i both have celiac. we found out when she was 6 months old. she and i have been strictly gluten-free ever since, but because the tiniest amounts of gluten cause her severe constipation and stomach pain and diarrhea for days, she's never had more than a couple of weeks without being sick. her most recent gluten attack started when she ate a piece of fruit at a restaurant from her brother's plate. one side of the fruit had touched his wheat noodles.

even though our house is completely gluten-free (including body products), she is often sick, and i am afraid it's because of cross contamination. we've already given up food from bulk bins (most of our food comes from the natural food co-op and other health food stores), but many of our gluten-free foods come from facilities which process gluten. it doesn't seem like most people with celiac avoid these facilities entirely. i feel like i need support in making this drastic step. i hate to take away more food options from my daughter, but she is spending most of her life so far in pain.

my daughter also has frequent urinary tract infections. does anybody here deal with that?

thanks for any ideas.

sol's mom

Hi Sols Mom,

I know how difficult your task must be! It is hard enough going gluten free when you're an adult, but having a child with sensitivites is especially challenging. One thing that almost always needs to be done, especially if she is also having UTIs, is using a therapeutic grade probiotic and cultured foods to rebalance the flora in the intestinal tract. In fact, many gluten reactions and food sensitivities can be traced to a gut that is not properly equipped with the right microflora to digest certain foods (i.e., grains, dairy, soy, etc.)

Probiotics are vital these days for a number of reasons, but especially so if you have gut dysbiosis of any kind. A "leaky" or overly-permable gut may be the root cause of food allergies and a number of disorders and balancing the population of bacteria in the gut will help it heal and become less leaky. A less-permable gut does not allow undigested chunks of food to pass into the bloodstream where they are attacked by antibodies and treated as an "enemy". This is the beginning of a food allergy!

I am sensitive to gluten, soy that has not been properly fermented (natto, miso and tamari are ok) and corn. I suspect that eating lots of GMO corn, wheat and soy in my earlier days has contributed to my condition, but I know that my gut is healthy and balanced now and I am absorbing nutrients properly because of the healing that has occured from using cultured foods and probiotics.

You simply can't omit this part of the healing process!

Including small amounts of cultured veggies or drinks (like kombucha or kefir) is a great way to start on probiotic foods. I have recipes if anybody wants one...

Hope this helps!

CC

[sol's mom]

thanks everyone!!! i get it now that i need to focus more on repairing her gut.

my daughter does do probiotics every day and always has. each day i make her a raw (soaked nut milk) smoothie with probiotics and udo's (essential fatty acid) oil added. she loves kombucha, which really surprises me. i personally just started the body ecology diet to cleanse myself of candida, and so we are starting to eat cultured foods each day. we also just started taking glutamine in a fiber drink- recommended to me on this forum- and it seems to be very beneficial for both of us. she is loving coconut water right now, and it seems to be very balancing for her.

since i first posted, i have been way more careful about her exposure. washing her hands and face frequently. limiting the products we eat to things we've already done well with and things that are most unlikely to have gluten contamination.

since i am on body ecology diet, my daughter largely is also, except i haven't restricted her fruits. but we are eating mostly vegetables plus eggs (from our own hens), fish, millet, quinoa, buckwheat and soaked almonds and sunflower seeds. waaaaaaay less packaged food (and we never ate a lot of packaged food to begin with).

so the effect is: she is still getting diarrhea and constipation and uncomfortable urination as often but her discomfort is no longer severe. she is happier and able to get through her days and nights MUCH easier.

i don't know exactly what to think about it all. it's so hard to measure how they're doing, isn't it?!

[sol's mom]

I don't have alot more to add, except that I am finding comfort that there are other parents who have children that are as sensitive as my daughter.

I'm actually thinking of taking this step too, I'm noticing a trend of reactions that occur after I give her something that is "made in a facility" or made by a company that also makes wheat products, even though it's marked gluten free. And the messy house question??? Funny you mention that, b/c I've noticed the same thing after we come back from my SIL's house. The next day, I swear I feel like I've been glutened, even though it seems crazy.

We too seem to have a great few weeks, and then we have a setback. We've been at this for four years now, so I feel like we should have more good than bad at this point. We are still leaps and bounds better than when she was diagnosed, but I still don't feel like she is 100% well yet. Of course, my dd is in school, where I'm sure she touches gluten from time to time. I found a project in her notebook the other day......made with Cheerios.

Sigh, I wish I had more help for you! But no, I don't think it's too drastic of a step to remove all products that might have the slightest bit of gluten, even if it's less than the 20 ppm standard. For many, that is still too much. Good luck, and welcome!

i have been noticing for myself that just walking into a pizza place or other place where there is a lot of gluten around makes me feel heavy and headache-y. i have asked our neighbor-babysitter now to wash sol's hands frequently when she's there, and the last 2 times she went there she did not get sick when she came back. yay! so thanks to the person who gave me then hand-washing tip. for whatever reason that hadn't even occurred to me.

i love getting support for avoiding "gluten-free" foods if they are made in a gluten-shared facility. it was a mind-boggling step for me to take, and now that we've done it, i feel way more confident about our long-term well-being.

[sol's mom]

Hi,

I was just browsing through this post and the replies. I have Celiac Disease. My two children have been screened by blood tests and both have come back with positive results. I am in the process of getting them tested. My son is 4 and my daughter will be 2 in a week. I have looked online, aniticipating their results, and I have found a couple of cute and creative ways to id your children with medical issues. I read the post about the pretzel given to her by a stranger and that makes me mad and worried all at the same time. Do you have a medical id for your daughter? I know that when my children are diagnosed they will have one on them one way or another. I have found sites with medical id shoe tags, zipper tags, and kid sized bracelet and necklaces. That might be something to consider since you can't be sure that friendly park visitors won't be slipping your kids food. If your daughter had a medical id and someone doesn't ask you first about something, you have the right to enlighten him/her on the purpose of a medical id and the disease your daughter has. Just thought you might want to consider it as an option since you can't really control the cross contamination issue with food companies.

i like the bracelet idea because even if there was still a slip, i could show the person her bracelet and they would probably take it more seriously and think before they did that again. this lady was totally not concerned even after i explained celiac disease to her. she thought i was over-reactive. so frustrating!

[Mama Ruthies]

Some great ideas on here---I need to be much more aware of possible cross contamination when we are out and about.

Our 4 year old reacts to gluten by having bathroom issues for a short time and then a regression in his speech. He already has significant speech delays so it is very disheartening when he does get glutened. We realized he got something about a month ago and are really bummed. We also found out last fall he was anemic and are working to keep his numbers up. We think his numbers might have gone down after the glutening.

Could you share any of the products that you or your kiddos react to---products that are labeled gluten free? I would so appreciate having items to consider. I try to be very careful---it is hard when we are around large family gatherings ---people just don't understand! We are going to start telling them to think of it as poison for our son---any contact would be like giving poison to him. Hopefully that will help.

I will become much more vigilant about having our other four kids wash/wash/wash hands if they have been around gluten. I use antibacterial after visiting stores/parks/etc but should handwash---don't think the antibacterial would eliminate the gluten necessarily.