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Should I Push?

sarahelizabeth

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sarahelizabeth Contributor
sarahelizabeth
Posted

I visited these boards this time last year when our GI dr was debating testing my youngest for celiac. He never did end up testing him but now I am wondering whether I should push for it?? He's 21 months old now. This time last year he wasn't gaining weight (at all) and was falling completely off the growth charts. He had chronic constipation issues that wouldn't resolve even with miralax. He had chornic ear infectiosn (11 in 18 months and has had 2 sets of tubes), and horrible eczema as well. The GI Dr wanted us to do allergy testing first before he started looking at celiac or even possible hirshprungs. We thought he had a dairy allergy. Ended up he didn't and we started him on whole milk which he did MUCH better on than formula... finally started gaining some weight.

We found out at 11 months he had a peanut allergy... then at 20 months we found out he was also allergic to most all tree nuts, as well as vanilla, and green peppers. We've finally removed all his allergens but aren't seeing much improvement (some but not what we were hoping for). He's still constantly got a pimply eczema rash (does flare something awful if he does get an accidently exposure to an allergen), now he goes back and forth between diarrhea and constipation... his stools are often a very light yellow color and smell something fierce. He's still small BUT he's actually gaining weight now... up to the 10-25th percentile for weight now finally (up from below the 3rd before a year). He NEVER eats... its not that he's picky... seems totally disinterested and acts like it makes him sick to eat. Lately (the reason I've become concerned again) he's been sleeping ALL the time... falling asleep less than 2 hours after he wakes up and sleeping 16-17 hours a day... 3-4 hours more than he used to. I thought maybe it was a growth spurt but its been going on WAY longer than that and he's not eating to support a growth spurt. I am not sure what to think???

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CarlaB Enthusiast
CarlaB
Posted

I'd have him tested.

If gluten is not the problem, keep looking for what is. Some of us feel better on a gluten-free diet but have other health problems causing some of the symptoms.

Many different diseases that have a systemic reaction all have very similar symptoms.

I'd still try the diet once the testing is completed just to see if he responds favorably to it. But don't do it before the testing or it can affect the results.

plantime Contributor
plantime
Posted

Insist his docs run the tests. They are not near as bad as docs claim they are, and the diet is not even close to as bad. If your docs absolutely refuse to do the tests, then go glutenfree for him, and see if he gets better.

Juliet Newbie
Juliet
Posted

Yes - insist that he run the test. This is very similar to how my son started getting very noticeably sick. It was during the time that he started getting very lethargic that he began to lose weight and get the distended belly and grey skin tones. Up until that time, he was only having the constipation/diarrhea cycle; he was still gaining weight and height.

ryebaby0 Enthusiast
ryebaby0
Posted

Why not just start him on a gluten-free diet? The doctor's opinion is interesting, but not actually necessary....

happygirl Collaborator
happygirl
Posted

If your doctor is not interested in running the tests, I would find another doctor who is open to it. Make sure the run the FULL Celiac panel.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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