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[Joianne]

I posted this in a WLS forum that I belong too. Someone mentioned that what I describe sounds very similar to what her son is dealing with. As an addition to this we HAVE brought my son into the dr's for floating feces before, they tested some and said it was fine (although the sample wasn't the one I called about). I'm hoping that maybe I can get some answers, even if it is just that I'm over thinking this.

History:

When my son was a year old he was diagnosed with Rickets. After a years worth of treatment he was deemed "cured". Of course since then he has needed supplements twice (with this being the most recent). When he was originally diagnosed with rickets I caught it before the doctors did. He was exclusively breast fed and I noticed he wasn't gaining much but was a great eater. At first they blamed everything on the breastfeeding. He had bumps on his ribs and his wrists cracked when you helped him stand up. At 12 months he wore a size 3-6 months. CHOP actually thought I was crazy so I switched Dr's and the new Dr humored me and did blood work and scans that showed the malformations. The specialist I brought him too first said it was a malnourishment problem but at this point they are leaning to hereditary. They wanted to do genetic counseling but I have no clue whats on his fathers side because they refuse to speak to us.

My son is also diagnosed (with a 2nd and 3rd opinion) with ADHD. I've chosen to use supplements and behavior modification because he's been used too much as a guinea pig and I hate my baby being on a bunch of chemicals. He seems to be doing well with what we're doing. Because I'm so careful of what he intakes and his supplements I can tell when he's had anything that triggers him.

As of last weeks Dr.s appointment he weighs 115 (he's 9). We don't eat bad. Because of his ADHD I limit sugar and artificial everything (colors and sweeteners), I can't remember the last time I fried anything. I can look at myself and totally understand how I am this big, my son not so much. We are terribly careful with what he intakes. The only thing I could think of is he's not as active as he should be but he's not 115lbs inactive. He's also tall and stocky (think line backer) just like his donor. We've joked that he is like a garbage disposal because no matter how we limit him he is ALWAYS hungry.

He's prone to migraines, Seeing spots, dizzy sometimes throwing up migraines. Because of this we watch his diet even closer. No MSG or nitrates. No hard cheeses, hot dogs, bacon, sausage etc.

TODAY:

I just received a call from my sons doctors office. Despite the 2,000 mgs of vitamin D3 I give him a day his levels are still low. He needs to be put on the supplements once again. His cholesterol is also through the roof for the third time in the past year and a half (we've been monitoring it every 6 months). So now he has to go to CHOP's lipid clinic. I'm starting my search over again to see if somehow these things are connected.

I'm at a loss, but I can't help but think these things are somehow connected. Help?

[sreese68]

I would absolutely have him tested for celiac!!! Make sure he eats plenty of bread or pizza before the blood test. (Has to be eating gluten for the test to be accurate.) Make sure they do the full celiac panel. False negatives are pretty common (my blood work was negative), so even if it's negative, you should consider demanding a biopsy or doing a gluten free trial on your own. But if it's positive, you can skip the biopsy, consider him celiac, and go gluten free.

Good luck!

If doctors refuse the test, then find another! My GI was woefully ignorant about celiac.

[Jestgar]

I would absolutely have him tested for celiac!!!

It's totally worth the trouble of making sure they do this. Even if it's negative, you could try a gluten-free diet and see how he feels (after the testing). You may want to try it with him, both to understand how to do it, and to see if it affects you as well.

[GFinDC]

Mal-nutrition is common with celiac. The reason is that celiac disease can damage the villi lining the small intestine. Those villi absorb the nutrients needed to grow and maintain the body. There used to be a belief that people can only be skinny with celiac, but people can gain weight with celiac too.

Gluten can also affect the brain, search on "gluten ataxia" to learn more. If you do trial the kid on a gluten-free diet, it would help to take him off dairy and soy also. A good trial diet is 3 to 6 months. It takes a while to learn the ins and outs of the gluten-free diet, and how to avoid the cross contamination issues.

A good gluten-free diet is low in processed foods and high in whole ingredients, cooked at home meals. Low sugar and high protein. Lots of vegetables and fruit if he can digest it.

I flunked the celiac disease antibody tests also, but I had been off gluten 3 months before my testing appointment. Guess I was out of practice!

[maximoo]

I would also have him chkd for prader willi syndrome. Its a disorder where person never feels full & always hungry no matter how much they eat. 115 @ 9 is a very large kid. Is it possible he may be eating things he shouldn't behind you back at school, friends houses, etc? Increase his physical activity with whatever he likes to do. Decrease the tv watching/video games. He needs more natural sunlight too. Fair skin 10 mts a dy, medium complexion 15 mts & dk skin at least 20. Do not let him get sunburned. Apply sunblock after he has had his sun for the day.

Good Luck!

[T.H.]

If your little one does have celiac disease, which seems like a possibility, the weight will make your doctors even less likely to diagnose it, or test for it.

Until recently, many medical texts had the now-known-to-be-false information that celiacs were always very thin and wasted away. However, doctors have since discovered that one can be celiac and be very overweight. In this case, we are not absorbing nutrients, so the body keeps prodding us to eat more and more in an attempt to get more nutrients. We always feel hungry, not for calories, but for vitamins and minerals.

And although I have not seen any evidence to support the following idea, it may also involve the body lowering the metabolism significantly to try and conserve what calories are actually being absorbed. I know of some who have weight fluctuations when on or off gluten, even when calories are not fluctuating, so I think it's a possibility.

All 4 members of my family who were diagnosed were overweight at diagnosis. And we all only started losing weight when we went on the gluten-free diet. For me, if I start getting low level gluten contamination somewhere, one of my symptoms is that my weight starts climbing again, even when I'm eating the same number of calories.

Also, if your little one has never been on an elimination diet or been tested for food allergies (by an allergist who focuses on food allergies, rather than environmental allergies), you might want to think about that. There was a recent study that found a pretty strong correlation between childhood obesity and food allergies. ( Open Original Shared Link )

Many people are saying that obesity causes the allergies, although the study only found correlation, not causation. And based on many people I've met who found food allergies, eliminated them, and suddenly lost weight? I wouldn't be surprised if some day they find out that food allergies can cause obesity.

Oh, also - food allergies, if they are mild, don't have to cause hives, but they CAN cause inflammation of the gut and so inhibit absorption of our food, too, including tryptophan, which our brains need to make seratonin and melatonin (so our emotional control and sleep schedules are hosed).

Shauna

[Joianne]

Thank you to everyone who replied. To answer a few questions:

@maximoo, believe it or not 115 on 9 year old doesn't mean he's a big kid. He is a little chunky but mostly he looks like a line backer. We've actually had football coaches walk up to us in public and ask if he was on a team. He's also in the 90th percentile for his height, so he's on the tall side. We are very careful of what he eats. I would love to say he's sneaking food at school or friends but his friends come here, they LOVE our house plus we live next to a park where my son plays for at least an hour a day (We've been pushing him to play outside more), plus he walks to and from school which is 6 blocks away. He has an incredible appetite which I try to keep satisfied with healthy food like pretzel sticks, fruit, and veggies. The school cafeteria is on strict orders to not allow him any snacks and he is on a limited diet there also. I mean I will tell you my son is not the sneaky type but who knows what he does when I'm not around I can only hope he's doing right.

@T.H., I started to have a hard time pushing his pedi to test for Celiac but since their office is the ones who wouldn't test for ricketts when I begged them too as an infant (I had to go to another drs office to get a second opinion) they kinda tiptoe around me and order whatever I ask for most of the time. PLUS his stomach has been really acting up (which isn't unusual for him) so in the same breath they decided to test for IBD too.