Can I Just Assume It's Celiac's Now?

[3groovygirls]

Hi everyone! I've been on periodically...

My DD is now 16 months and they suspect Celiac's. She followed a typical course, when I was nursing her she was super fussy if I ate anything with wheat, introduced solids and she had constant diarrhea and vomiting (aka, "reflux"), anyway, she lost weight, got FTT, was horribly sick her first year. Once we cut out gluten she's been fine, gaining weight back, sleeping through the night etc.

So anyway, NOW she's so sensitive to gluten if she even eats a product that is cross contaminated with gluten she has diarrhea for 2 days. Sometimes she even vomits immediately (as happened one time with a whole wheat cracker)

She hasn't had any of the testing b/c she's so young and also b/c she's gluten free, but with responses like that can I just assume it's Celiacs??

I'm just curious what you all think since you've BTDT!

Linda

[nitu-752002]

I am not an expert and new myself to all this but do you know if its gluten or wheat? It could be wheat intolerance but if she is doing well on the new diet, i guess it doesnt hurt to keep her on it!

Nitu

[ShayFL]

You can "assume" anything, but if she doesnt have POS blood and/or biopsy the medical community as a whole would not dx her. If it were me, I would push for genetic testing for her to see if she even has the genes. If she doesnt have the genes there is still a tiny possibility that it is Celiac (very tiny), but with MUCH LESS probability. You could be comfortable thinking it is an intolerance then. If she does have the genes, then if it were me and my child, with POS response to the diet and the genes, I would "assume" she shouldnt eat gluten for the rest of her life.

[3groovygirls]

Crud. I guess I was hoping they could say it without doing all the testing. I can't imagine putting her back on gluten for testing - I don't even know how she wouldn't, quite literally, get sick and die on gluten. Seriously she was SO SICK with vomiting and diarrhea it was a a stomach bug for 2 days each time she ate it. And she should be on it for 6 weeks before? ACK!

I guess I'm afraid I'll NEVER get an answer if we have to do that so I was looking for an easy way out, KWIM?

Tell me about the gene test? I asked my DD's Dr. and she said that the only gold standard was still the biopsy and not that test. But she's a ped, not a GI - who would I see for the gene test, a GI??

[3groovygirls]

Shoot, I forgot to answer one of the questions - it's all gluten, not just wheat. She can't eat barley either. Same thing. Haven't tried rye b/c she's only 16 months old and I don't know what I'd feed her with rye, LOL!

[mftnchn]

It seems to me that with her degree of sensitivity it would be dangerous to put her on gluten just for testing.

[3groovygirls]

Yes, that's what her Ped. said, that's why I was looking for some easy assumption, you know?

I'm interested in the gene test though! That would be very interesting since one of my other DD's had suspceted Celiacs as well! (her blood test came out negative but she was only 18 months when it was done, if one DD had the gene I would get my other DD retested). Do all GI's do it, or do I have to see a gene Dr?

[Fiddle-Faddle]

I think you have your diagnosis, and it's very clear--wheat causes problems, and not just moderate problems, but SEVERE problems. If you knew she reacted to peanuts, would you put her ON peanuts just to make a test come out positive?.

I don't know that you need anything official from a doctor. In fact, there have been cases where people have been DENIED insurance based on a celiac diagnosis, so you might be better off without it.

It would be interesting seeing the genetics, but again, those could potentially be used against her (I do NOT trust the insurance industry these days), so I would pursue genetic testing via Enterolabs and pay privately, out of pocket.

As was said above, there are cases of people who do NOT have the supposed celiac genes (2 genes are recognized here in this country, but SEVEN are recognized in Europe and Asia), who still have biopsy-diagnosed celiac.

I think the reason it appears to be a tiny chance that you would lack those genes and still have celiac is that very few people without those genes have even been tested for celiac. Also, we all know that many people have "tested" negative for celiac, but have every symptom, prompting the question, "Do we call them celiac or gluten intolerant?"

There are people with DH who tested negative, both for bloodwork and intestinal damage. But they obviously have celiac. It's looking more and more likely that there are many manifestations of celiac, and they don't always cause villi damage--which totally turns the "gold standard" of diagnosis on its head.

In the long run, though, it doesn't really matter what you call it if the outcome is the same.

[Fiddle-Faddle]

Forgot to add--sounds like your pediatrician is a keeper, if he (or she??) was able to diagnose your child so quickly, and it also sounds like YOU are really on top of things!!!!

Welcome aboard!

[ShayFL]

If you want to pay for Genetics privately (so it isnt on her record) you can use Enterolab or Kimball.

[3groovygirls]

Thanks guys!

My ped. actually knows a TON about Celiacs because both her husband and son have it!! So when she saw what was happeneing with Violet it reminded her exactly of her son (her son is only a year older than Violet). So I think she is a great ped, but also it helps that she has personal experience.

VERY interesting about the insurance. Maybe I should do pay out of pocket!

[MarsupialMama]

If she is only 16 months old, I wouldn't bother with tests unless you really want to do it, because they are very unreliable, ESPECIALLY until the age of 6. The tests themselves have flaws. Many people can test negative for everything, but the fact is, they react the same (badly!) when they consume gluten.

From your daughter's response, I would for sure not put her BACK on gluten for the sake of any test or any diagnosis. We put our daughter on gluten-free before we knew about any testing, and she has responded so well that regardless what any test or doctor says, we will stick with the diet. When she grows up (like, say late teens?) if she wants to try gluten, she will have to deal with her own symptoms then, but as long as she is too small to understand the seriousness of the issue (we've had a traumatic experience!), we will do gluten-free.

[ShayFL]

Fortunately the genetic tests are very reliable. It is rare that they arent accurate. Of course nothing in medicine is 100%. A lab technician could be coming off a long night out on the town when he reads the results.....But I felt good about mine. I did Enterolab and Kimball and they were consistent with each other.