Children with Celiac and parenting

[Mommy]

Hello Lovelys. My child is 10. She was diagnosed a couple years ago and now at least I know why she has had so many tummy aches and missed school days. We do the diet really well. I just converted my kitchen to gluten free, it was just us so its pretty easy. But.......of course it still slips in. Cross-contamination I'm guessing. We don't go to restaurants but she had a hot chocolate at a friends house Sunday and although I checked the ingredients and it seemed clear, it did not say gluten-free on it. When she gets her symptoms; headaches, fatigue, stomache pain, I go into Nancy Drew mode trying to investigate where the gluten came from. Once I tracked a bag of lentils back to a facility that now claims to be a non gluten free product but the bag I had was old and said nothing. I think when things go well for a while I buy things like dried beans or rice that don't say gluten-free on it but also don't say may contain, so I think we are safe. It's a crap shoot with those I learn. So then I'm back to only buying gluten-free which you know is EXPENSIVE! I use lots of fruits and veggies that my kiddo likes thank goodness so that's a no brainer....so far. 

But I am writing now because she is in grade 5 and it is mid October and she has missed 12 days of school already from a cold and 2 times getting glutened. I ask for homework but her teacher just says to practice her "math facts", which amounts to adding and subtracting numbers up to 20. Not exactly ground breaking knowledge. I'm in BC Canada so I'm wondering if there is some type of sick day school club for expanding the mind! I have her learning to type, doing math facts of course, learning about plants and doing art, but I want her to not fall behind. 

Are there any other parents out there with similar concerns about missing so much school? Are there any people out there living with celiac that want to be a light in my mind of what it feels like to have symptoms and miss school? It doesn't sound pleasant from my daughters voice. Big hugs to you all. And I wish you tummy sunshine.

[trents]

Welcome to the forum, Mommy!

It is common for celiacs to develop other food intolerances/allergies because of the "leaky gut" syndrome that accompanies celiac disease. Common among them are dairy, soy, corn and eggs. But it can be almost anything. It might be helpful to keep a food diary for your daughter to see if any patterns turn up between what she eats and when symptoms appear. 

Has your daughter had any follow-up testing (either antibodies or biopsy) to check for villi healing progress? For adults, it's common to take up to two years or more for complete villi healing after starting the gluten free diet. I would think maybe less than that for children since their recuperative powers are so great.

[Mommy]

  On 10/26/2021 at 4:17 PM, trents said:

Welcome to the forum, Mommy!

It is common for celiacs to develop other food intolerances/allergies because of the "leaky gut" syndrome that accompanies celiac disease. Common among them are dairy, soy, corn and eggs. But it can be almost anything. It might be helpful to keep a food diary for your daughter to see if any patterns turn up between what she eats and when symptoms appear. 

Has your daughter had any follow-up testing (either antibodies or biopsy) to check for villi healing progress? For adults, it's common to take up to two years or more for complete villi healing after starting the gluten free diet. I would think maybe less than that for children since their recuperative powers are so great.

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Thanks Trent. She has been clinically diagnosed. The biopsy is too invasive for her age, but her last blood work showed it going down. Was +250 and now in 70s. I was thinking of having her tested for other allergies. Removing dairy didn't seem to make a difference. But corn and eggs I never thought of. She isn't good with gluten-free oats, so we don't use those. I didn't know leaky gut is connected but now that you mention it that makes sense. Same zone. Maybe we should do gluten-free rice and beans with veggies and fruit for a week and just clean up. Take care.

[trents]

I think leaky gut and celiac go hand in hand. My understanding is that the theory is that it may be kind of a chicken and the egg question in the since of which causes which.

[Mommy]

  On 10/26/2021 at 10:43 PM, trents said:

I think leaky gut and celiac go hand in hand. My understanding is that the theory is that it may be kind of a chicken and the egg question in the since of which causes which.

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Any suggestions for supporting leaky gut? 

 

[trents]

  On 10/27/2021 at 4:39 PM, Mommy said:

Any suggestions for supporting leaky gut? 

 

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Not specifically that I know of. Zonulin has been identified as the regulator of spacing between the cells that line the small bowel. So, therapies for leaky gut are being investigated that involve zonulin but no breakthroughs yet. There is just a lot that isn't yet known yet about how it works and how to manipulate it. Since there is a connection between celiac disease and leaky gut the best we can do now is to eliminate gluten. For many years my total serum protein and albumen have been below normal range, though occasionally they have managed to creep into the low end of normal, despite getting plenty of protein in my diet. I'm sure this is due to leaky gut since with leaky gut, not only do larger than normal protein fractions pass through the bowel wall into the blood, but it works the other way as well. Protein leaks across the gut lining back into the bowel from the blood stream.

[Mommy]

  On 10/27/2021 at 5:02 PM, trents said:

Not specifically that I know of. Zonulin has been identified as the regulator of spacing between the cells that line the small bowel. So, therapies for leaky gut are being investigated that involve zonulin but no breakthroughs yet. There is just a lot that isn't yet known yet about how it works and how to manipulate it. Since there is a connection between celiac disease and leaky gut the best we can do now is to eliminate gluten. For many years my total serum protein and albumen have been below normal range, though occasionally they have managed to creep into the low end of normal, despite getting plenty of protein in my diet. I'm sure this is due to leaky gut since with leaky gut, not only do larger than normal protein fractions pass through the bowel wall into the blood, but it works the other way as well. Protein leaks across the gut lining back into the bowel from the blood stream.

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Thanks for sharing your experience and thoughts! It is definitely down the rabbit hole trying to manage celiac and all that is connected. From my daughters experience she feels quite tired, has headaches, stomache paine and brain fog when she has been "glutened." We have a gluten free house but this time I think it was from pumpkin seeds made at a friends house after carving pumpkins. Such a simple thing has created 4 days of sluggish pain. What is your experience with symptoms if you don't mind me asking? I want to understand what she goes through. I don't make her go to school when she is like this because I can't imagine sitting obedient in class for 6 hours with this going on inside of her.

[Ivana]

Hello,

I noticed that your daughter has been diagnosed a couple of years ago, but her antibodies are still rather high (70s). It is a different process for everyone, of course, and it can take time, but it is my understanding that they fall to negative or close to negative within a year or two. Is it possible that she is still having gluten regularly somehow in her diet and not just ocassional glutening episodes? Or, if not, perhaps it is cassein in dairy that is keeping her antibodies high?Did her doctor have any explanation of this?

[mahonia]

Hi Mommy,

For the missed school we use

Out school.com

It is an online community of teachers that teach all types of subjects.  You can sign up for a class just before it starts, and they have lots of 1 day offerings.