[AppleCrisp]

I'm sure you've all discussed this many times, but its all new to me. I'm just so exhausted by my son. He's 18 months and doesn't sleep AT ALL; he barely eats, and he's falling off the growth charts more and more. We've been testing him for celiac disease. All the testing is "inconclusive." Nobody seems to have a clue, and it just goes on and on, more testing, more non-information. He's 2nd percentile for height and weight. His IgA was so low it was non-existent, but the GI doc said that had "limited significance" - what does THAT mean? And that the low IgA makes the other celiac blood tests invalid. Then he had a really low albumin test, which they said means he isn't digesting proteins, another "possible" sign of celiac, or "maybe nothing." He also has low, but not very low, iron...again, maybe a sign of poor nutrient absorption, or just nothing. So, they are pushing us to do the biopsy, which I so do not want to do....the only appts they have are afternoon, and you can't feed them for 6 hours prior, so how am I supposed to get a toddler up at 6 am (his wake-up time), and not feed him or give him liquids all day until 12:30 pm?

Any thoughts? They said not to go gluten free because it will screw up the biopsy if we do that. It just seems like they don't know anything, so they are going to do test after test after test just to see what they can come up with.

TIA.

 

[apple_dumpling]

It will screw up the biopsy if you go GF for a while before he has it.

However, if it were me, I'd just forgo the biopsy and try going GF for a few months, unless you think that it could be another intestinal/stomach problem going on.

Since your ds doesn't eat much in the first place, the GF testing probably would be inconclusive. If he's not eating much gluten, the test really isn't going to pick it up, kwim? I tested positive from bloodwork - but had the bloodwork repeated two months after going GF and tested negative because I didn't have it in my system. If he wasn't eating much gluten before he was tested (and at his age he probably isn't eating a ton anyway) then it wouldn't show.

Trust your instincts. If you really feel that it's a gluten issue, then I'd forgo the biopsy and try GF for a few months. If it still hasn't improved after that, then maybe you'll want to reconsider more testing.

Maybe someone who knows more about the specific bloodwork he had done can chime in for you!

 

[USAmma]

My dd has had four biopsies and finally they figured out what was going on with her. It was not Celiacs but it is somewhat similar in nature. The biopsy/endoscopy can really tell a lot and it's a valuable test when your child is not doing well and it's probably digestive in nature. Make sure they look for eosinophils and provide you with an exact count of how many. If there are *any* found at all, it is significant. If there are more than 15 then it's EE. EE is a very underdiagnosed condition in children and masks reflux and Celiac's. Many doctors do not even know to look for it and it's missed (thus why my dd has had four biopsies-- the third one was by a doctor who knew what she was doing finally). Good luck with all this!

As far as how to cope for the test, see if you can reschedule to first thing in the AM. That way you don't have to starve him during the day. He can just fast at night while he's sleeping. I agree, if you are going for the test do not limit gluten yet, or anything else.

 

[AppleCrisp]

I forgot to add....I had anemia, and constant stomach problems as a child, and bad eczema. Would it be helpful for me to have myself tested, and if I am positive, wouldn't that kind of add another positive in favor of a dx of celiac? I asked the GI guy this, and he said no, they would still have to do all the testing on him anyway.

 

[jocelyndale]

Here's the thing. If it *is* celiac disease, the GF diet must be for *life*. It's an autoimmune disorder and non-compliance with the diet can have grave consequences. It might be better to have the endoscopy with several biopsy slides done to check for the often patchy damage. If you know for sure, it will be much easier to commit to the diet for lift and to remind him of the necessity of it when he's 13-14.

Sure, you can go GF now. If he improves, you have your answer, but you won't have the gold standard of the biopsy to back it up.

As an adult, I made the decision to go GF for life without the biopsy. A lot of people can't commit to it, though, and need those firm test results.

 

[grisandole]

I'm of the camp that doesn't need proof from the medical establishment, so take my comments with that in mind

If you suspect Celiac, which it very well may be based on his symptoms and yours, then I would just go GF and then, if things improve, you have your answer. But like the pp stated, a GF diet is for life, and you need to be committed to following it. If you go "mostly" GF or go GF for only a few days or a few weeks, you won't be able to tell ANYTHING. I've heard people say "well, I tried it for a few days and didn't notice a difference, so it wasn't the gluten", and I want to scream! LOL

Gluten can take weeks to get out of the system, and it could be months before you see results...normally it doesn't take that long, and if your little one is young and isn't eating much odds are you will see changes sooner; but it doesn't always happen that way. If the gut is damaged, it takes time to heal.

My understanding of the biopsy is that there is still a chance that they can miss it...they can take out a portion that isn't damaged...but I could be remembering that wrong.

If I were you, I'd look at the GFCF forums/groups (pm me if you want some info) and start that diet right away. If you want to go for the biopsy, be sure to ask about what USAmma mentioned so that they can figure out what is going on in there!

I hope you get everything resolved soon.

Best wishes,
Kristi

 

[Meg_s]

Casein can also be something that makes kids not sleep... just adding that in there since my son can't have casein. Here is a pretty good article about celiac, http://www.scdiet.org/7archives/scdceli1.html just as something to keep in mind.