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9 yr old daughter, 1 yr gluten-free, ALWAYS hungry!?!! Help!

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Sorry this is so long, here's the tl:dr if you don't want to read it all.

TL:DR My 9 yr old daughter who's been gluten-free for 1 yr has always been big for her age and always a hungry kid. But in the last 6 months her hunger has become insatiable. We're going to see an endocrinologist to see if she has anything going on there that could be causing her hunger and development. I'm just wondering if anyone else with celiac has experienced this insatiable hunger and can offer any tips. 

Here's our backstory:

My daughter, J, was diagnosed by biopsy in early 2020. The symptoms she was having pre-gluten-free was mostly constipation and stomach pain. J's a big girl; proportionate in weight and height and really active and healthy; she's just big for her age. But she's always been big for her age, fluctuating between 75-90th percentile in both weight and height, since she was 8 weeks old. 

When we first were referred to our GI for J's stomach issues our pediatrician also said we might also want to see an endocrinologist. We did the wrist x-ray to test J's bone age and it was 7 months older than her birth age. The Dr explained that wasn't too bad, but said she would send J's medical records to the endocrinologist board at CHOC for them to evaluate and decide whether they thought J should be seen by them. At the same time that was done we began the journey that ended in J's celiac diagnosis. And of course her diagnosis opened a whole new way of life for my daughter and our family, which we're still perfecting.

This was all happening before and during the Spring of 2020, right when COVID flipped the whole world upside down. We had an appointment with endo at CHOC in April 2020, but they cancelled her appointment when mandatory lock down first happened here in California (mid-March 2020). We rescheduled for the fall, but for one reason or another we had to cancel that appointment. At this point we need to go back to our pediatrician and begin that process from the beginning again (x-ray, labs, and records sent to endo at CHOC to evaluate and refer for appt), and we've got an appointment coming up to do that.  

That brings me to our current issue:

I know many (if not most) kids with celiac can be small for their age, which as explained above has not been our experienced. We'll see soon if this has anything to do with J's endocrinology, but in the meantime I'm gowning more and more concerned with her appetite, which is becoming insatiable! She's always been a hungry kid. She'd eat all day long if I let her, but up until the last 6 months or so it didn't concern me much. She eats a balanced diet, snacks on healthy foods, and likes trying new foods. I just thought she was mistaking hunger for bordem, or had a fast metabolism like her Dad, or grew hungry because she's always running around burning energy. 

I just recently realized increased hunger can coincide with celiac (duh), so now my mind is buzzing with questions! Could this be because she keeps getting gultenized (that's what the dietitian we saw in the beginning called being exposed to gluten)? Or is this coming from a certain food? Are we not being careful enough when eating out (take-out)? Or, and this has been the hardest part of adjusting our life after diagnosis, is she getting cross contamination from our kitchen at home?? 

She's a month or two overdue for her labs, but since going gluten-free we've checked her levels three times and her GI was happy with the results. She hasn't gotten to zero yet but our GI said it's normal for that to take up to a year, which is where we are right now. We'll see her pediatrician and GI over the next few weeks. We'll have her labs and x-ray redone and see what those show. Then I assume we'll be seeing an endocrinologist in the next month or two. 

How can you help?

I guess I'm just wondering if anyone else has experienced this kind of insatiable hunger during their celiac journey. If so did you figure out what was causing it? Even if you haven't experienced it personally is there anywhere you can point me to learn more about it?

Again, sorry this got so long. This is the first time I've connected with a celiac forum. Hopefully I'll become a regular!!

Thanks much!!

M

 

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You're daughter is still eating take out food! Wow! I'd take a serious look at that. There's no way you are going to avoid gluten cross contamination in that scenario unless the eatery is a dedicated gluten free business. Several recent studies have demonstrated that most people who claim to be eating gluten free are actually just getting lower amounts than before and this was especially true of those who dined out. As you suggested, this might be preventing her from experiencing full healing in her gut.

I wonder if her hunger is related to nutrient malabsorption. Celiac disease damages the villi in the lining of the small bowel. These villi are the organs responsible for nutrient absorption. I would look at putting her on a good, gluten-free mutlti vitamin and add in a B-complex. Taking high levels of B vitamins is safe because they are water soluble and excess will be peed out. But be careful what products you use because not all vitamins and supplements are gluten free. Costco is a good place to get gluten free vitamins and supplements.

Having said that, I think it is wise to take to an endocrinologist. Thyroid issues and diabetes (insulin resistance) could cause insatiable hunger. And interestingly enough, there is a higher incidence of both in the celiac population.

Edited by trents
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Welcome to the forum!  Happy to have you here!

Wow!  I agree with @trents!  You need to pay more attention to what your daughter J is eating! 

Try keeping a food/mood/poo'd journal.  Doing this will pinpoint problematic foods and possible glutenizing😸.

The food journal will also allow you to see if your daughter is overeating carbohydrates.  If your daughter is filling up on gluten free facsimile foods, be aware they are not enriched with vitamins like their gluten containing counterparts.   

Your body needs thiamine Vitamin B1 to turn carbohydrates into fuel for the body.  Without enough thiamine, the carbohydrates get stored as fat.  

One of the symptoms of thiamine insufficiency is a voracious appetite.

High calorie malnutrition is caused by eating lots of carbohydrates without sufficient thiamine. 

Here's some articles that might help....

Thiamine Insufficiency Relative to Carbohydrate Consumption

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

And...

How Dietary Mayhem Causes Disease: The Choked Engine Syndrome

http://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

 

I think it's important to state that Celiac is a genetic disease. Your daughter J got her Celiac genes from her parents.  All first degree relatives should be tested for Celiac, too.   The whole household could benefit from a totally gluten free home.  

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9 hours ago, trents said:

You're daughter is still eating take out food! Wow! I'd take a serious look at that. There's no way you are going to avoid gluten cross contamination in that scenario unless the eatery is a dedicated gluten free business. Several recent studies have demonstrated that most people who claim to be eating gluten free are actually just getting lower amounts than before and this was especially true of those who dined out. As you suggested, this might be preventing her from experiencing full healing in her gut.

I wonder if her hunger is related to nutrient malabsorption. Celiac disease damages the villi in the lining of the small bowel. These villi are the organs responsible for nutrient absorption. I would look at putting her on a good, gluten-free mutlti vitamin and add in a B-complex. Taking high levels of B vitamins is safe because they are water soluble and excess will be peed out. But be careful what products you use because not all vitamins and supplements are gluten free. Costco is a good place to get gluten free vitamins and supplements.

Having said that, I think it is wise to take to an endocrinologist. Thyroid issues and diabetes (insulin resistance) could cause insatiable hunger. And interestingly enough, there is a higher incidence of both in the celiac population.

She still gets pizza from Fresh Brothers, which is certified gluten-free, and burgers from Smashburger. Smashburger has made it a point to not put gluten in any of their condiments and toppings, and when requested will prepare your meal in a designated gluten-free place. I have spoken with the managers of both the establishments that we go to and the manager at smash, who has a child with celiac as well, has assured me they take extra, extra precautions.

That being said, our tiny kitchen is probably a bigger cause for concern than our 2 trusted take out places. We've done everything we can to keep the gluten at home in one small place, we don't even cook meals with gluten anymore because I don't have the counter space to prep and the stove top is a mostly gluten-free zone (sometimes we use one burner then clean really well after). We're mostly just heating things up (J has her own oven and microwave that stays gluten-free) but the kitchen is so small I just can't imagine it's good enough. Our lease has been up for 7 months, we're paying extra to be month to month because we're doing everything we can to move. It's just been impossible to find a place. We live in Orange County, CA and there is way more demand than there is supply. On average rental houses here are getting 200 applications within the first 3 days after it's listed. We've got a family bio, pictures, professional and personal references in our application packet (along with everything they require) and we're getting passed up for members of the police force, doctors, and other families without student loan debt (our credit scores are good, we just have loans we're paying).

It's creating so much anxiety for me because I know we've got to move for my daughter's health, but I just don't what else I can do about that part of the situation.

I've got thyroid and blood sugar on my list of things I make sure they test for. I assume those and vitamin deficiencies are routine anyways with the endocrinologist.

I just feel so helpless. I spin out on worrying about minute details, when ultimately we just need to move!

Thanks for your response.

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8 hours ago, knitty kitty said:

Welcome to the forum!  Happy to have you here!

Wow!  I agree with @trents!  You need to pay more attention to what your daughter J is eating! 

Try keeping a food/mood/poo'd journal.  Doing this will pinpoint problematic foods and possible glutenizing😸.

The food journal will also allow you to see if your daughter is overeating carbohydrates.  If your daughter is filling up on gluten free facsimile foods, be aware they are not enriched with vitamins like their gluten containing counterparts.   

Your body needs thiamine Vitamin B1 to turn carbohydrates into fuel for the body.  Without enough thiamine, the carbohydrates get stored as fat.  

One of the symptoms of thiamine insufficiency is a voracious appetite.

High calorie malnutrition is caused by eating lots of carbohydrates without sufficient thiamine. 

Here's some articles that might help....

Thiamine Insufficiency Relative to Carbohydrate Consumption

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

And...

How Dietary Mayhem Causes Disease: The Choked Engine Syndrome

http://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

 

I think it's important to state that Celiac is a genetic disease. Your daughter J got her Celiac genes from her parents.  All first degree relatives should be tested for Celiac, too.   The whole household could benefit from a totally gluten free home.  

We've all been tested for the antibodies and we were all normal. Our PCP and pediatrician said they don't routinely do genetic testing for no reason. If we all have normal antibody levels, and no symptoms, they don't see that as a reason to figure out who passed on the gene. However, we are all eating a lot more gluten free. When I cook a meal it's almost always 100% gluten-free. But I'm not doing much of that as I explained in my response to trent, so that's not as helpful. We've switched lots of other stuff to gluten-free too though. I've just got a 10 yr old picky son, and a husband who eats like a 10 yr old, so it's been hard to cut it out completely.

Your info about thiamine is extremely helpful though. One thing she's eating a lot of is sandwiches on her B-Free bread. I considered those a healthier option because she doesn't use condiments, she's getting lots of protein from the cheese and meat (organic, usually turkey breast, with no nitrates) and some vitamins from the lettuce. But that could be the key. I'm definitely gonna research all you linked and ask her Dr if she can start taking that. 

At this point the Dr's probably want us to wait to do anything till we see endo. So endo can check her labs as they are now with this infliction.

Still though, you gave me lots to look into. Thanks so much!!

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Thanks for the additional information, MindNumbMama. It gives us a better picture of the precautions you are taking. You seem to be doing what you can do on your end. One thing though. gluten-free bread products are not as nutritious as fortified wheat bread since there are no regulations mandating that niacin and riboflavin be added to the four as is the case with wheat flour. gluten-free bread products are mostly just empty calorie starch. Lots of tapioca, rice starch and bean starch. That's another reason to look into vitamin supplementation.

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Hi! Nice to have you!

I agree with everyone about following through with the doctors. And, it sounds like you are doing a good job taking precautions, especially when eating takeout.

I just wanted to chime as someone who has always been on the tall side, (100%+ on all growth charts as a child). Her hunger could be related to celiac. But, at her age, could it also be just a normal growth spurt?

I can tell how hard you are working to protect your child. Don't forget to breathe. She is blessed to have a parent like you.😊

 

 

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In the beginning, gluten free alternatives didn't fill me up at all. It was like eating air. Your daughter has my full sympathy and understanding. 

On top of eating foods that doesn't fill her up, she is also growing which of course also increases hunger. 

Does she/can she eat nuts? Making your own crispbread with nuts and seeds is a great alternative to the airy gluten free bread and it will fill her up. Before I found out I could increase my nut intake I was a hungry creature too. I'm sure there's nothing wrong with your daughter. It's the gluten free diet causing it. 

 

If the doctor mention IBS, run. 

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