About to be screened for Celiac Disease

[WhiteHorse]

Well, my 2.5 year old went to the nutritionist yesterday. She was a little stumped after we went over his diet and habits looking for a way to add calories. I asked her about being screened for Celiac Disease and she said yes, he did exhibit some of the signs she sees often in CD patients.

My son is allergic to dairy and it has been really hard getting him to eat a variety of dairy free stuff. But if it turns out he has to also go gluten free, I just don't know what we'll do. He has such a limited number of things he will eat now. I guess we'll get through it, just need some encouragement here.

[scsigrl]

Honestly, dairy and gluten free aren't that tough after you get the hang of it. It is totally doable! It may seem really tough now but you will work through it and your child will thrive!

[babygirlie]

ditto. there's lots of things you can eat and a lot of it is easily available gluten free noodles are really great. It might take some reading and but you'll get it and it will be old hat soon.. if that's what you have to do. My daughter is also living milk and gluten free and we've had no problems. veggies fruits.. meat all gluten free

[WhiteHorse]

For those who are doing gluten free, did you have your dc screened with a biopsy? How is that performed and how did it go? I am really apprehensive about that right now and just feeling totally overwhelmed. We are going to do a blood test later this week and that is bad enough, but to imagine him having to be biopsied is scary. He is already very icky about doctors. We pulled into the hospital parking lot and he got really panicked and started crying to go home. He remembers the blood draw from when he was 12 months old! Poor thing.

[scsigrl]

After a few blood tests (very high ttG's) and a second opinion, we did decide to biopsy. Our son did AMAZING! He still talks about his hospital adventure. He had about 6+ blood draws prior. We did a lot of prep work. Talking about it (they suggested to start one day per year old they are so we started 3 days prior). We read storied and talked about how things would go. Not excessively, but enough. I am still amazed at how well he did.

Sadly, the biopsy was inconclusive and has required more blood work and still no answers. We are going to hold off on pulling gluten in the hopes that some of his other allergies go away...if they do and just watch for other stuff and his hight and weight gain.

Good luck managing this road. It is tough but doable!

[mamafish9]

We're perhaps facing this right now, so I've been reading.

With very high ttg (over 100), this scientific study says that in kids, it's 98% accurate. In other words, they took 49 kids with high ttg, did a biopsy, and confirmed celiac in 48 of them. And biopsies aren't 100% accurate either.

So for us, if we get high ttg readings, we will pull gluten. If that gets a positive response, we will take that as a celiac diagnosis. I don't want to deal with a biopsy for a maybe 2% chance my child doesn't have celiac (in which case I assume going GF won't address things). I would probably do the genetic blood test for celiac, as a different data point that isn't so invasive.

OP, US Biotek has a celiac screening panel that is fingerprick, not a blood draw. With a young child and previous bad experiences with a blood draw, you might consider that option?

[scsigrl]

Thanks Mamafish9. Out ttG's were both very high, biopsy inconclusive, genetic test +. With our list of allergies I am just not sure I want to take out gluten yet. My DS is asymptomatic and this was all found for totally different issues. We hope he outgrows some of his allergies and then we'll take it out. Dr. wants to biopsy in a year, we said no way. Not unless we see S&S. I dunno though now. Where can I read this study?

[mamafish9]

Originally Posted by scsigrl

Thanks Mamafish9. Out ttG's were both very high, biopsy inconclusive, genetic test +. With our list of allergies I am just not sure I want to take out gluten yet. My DS is asymptomatic and this was all found for totally different issues. We hope he outgrows some of his allergies and then we'll take it out. Dr. wants to biopsy in a year, we said no way. Not unless we see S&S. I dunno though now. Where can I read this study?

Oh goodness, I'm sorry - here's the original link I meant to post:

http://www.celiac.com/articles/908/1...ase/Page1.html

Here is the research study that is article is based on.

http://pediatrics.aappublications.or...ull/115/5/1341

Basically, they conclude that you don't even need to bother with a biopsy with kids with ttg >100. I'd say with ttg that high and a positive genetics test, you have a pretty clear diagnosis. There are problems with biopsy's not finding celiac as well, the bowels are a big place, and it can be missed.

What other allergies does your son have (and are they allergies or intolerances)? I read that 30% of kids are asymptomatic for celiac, but that doesn't mean it isn't doing damage .

[an_aurora]

Isn't 2.5 awfully young for a Celiac test? My DD was tested at 13 months and again at 2 years and both came back inconclusive, and the allergist said she would be very surprised if the one at 2 years came back positive since it usually is for kids under 4 or so. She did mention the genetic screen if modifying her diet (she is allergic to casein) didn't solve her problems, but she is doing much better so we didn't persue it.

[WhiteHorse]

Maybe I am wrong about this, but isn't Celiac different than just an allergy? Gluten actually triggers an autoimmune response which attacks the cilli in the intestines (among other issues). It is not a matter of "outgrowing" or eventually becoming tolerant. Not to say "just" an allergy as if it is less important, because allergic response is parallel to autoimmune response in that the reaction is sort of an attack, but not long term.

When my son was screened for allergies, he showed no allergy to wheat at all. Is the blood screening for Celiac the same as the allergy one?

[mamafish9]

Celiac is different than allergies. Based on what I've read, most celiacs also have IgG (food intolerance) to gluten, but not often IgE (anaphylactic allergy). With celiac the gut lining cells are damaged in a very specific way that is different than intolerances or allergies (that's what they look for in the biopsy).

However, it can get tricky with younger children, or people who haven't developed a full blown case of gut damage yet (kind of like their celiac is still in the early stages). Often then you see antibodies (sometimes at mid-range levels rather than super high), but inconclusive biopsies.

And some people develop celiac (including the visible gut damage) pretty quickly after being introduced to gluten, for some, it doesn't happen until 30 years later. So for young kids, if they haven't been eating gluten grains for long, or they didn't immediately react, you might get some inconclusive test results.

But, you can get clear positives as quickly as 9 months after introducing gluten, from what I understand (and based on the study I linked to above, blood tests are pretty much as good as biopsies for diagnosis). I think it's one of those cases where a positive test in a young child is clearly positive, but a negative test isn't necessarily negative.

ETA: And yes, celiac means lifelong GF diet. *Some* people seem to grow out of or heal out of their gluten intolerances or wheat allergies. However, there are plenty of non-celiac, gluten intolerant people where it is also a lifelong issue.

[WhiteHorse]

Well, we got the go ahead to get the blood test done. I am going to wait till next week.

In the meantime, I finally went to the store to find Bright Beginnings Soy Pediatric drink which was recommended by the nutritionist. It was a bit expensive but I really need to get calories in him quick. I got home and mixed it with his Very Vanilla Silk and he WOULDN'T DRINK IT!! Ugh! He is determined to starve himself to death. I also got him Almond Butter and spread on his hamburger bun (which is his fav) and he wouldn't eat that either. Too many new things I guess. Oh well, hopefully I'll have more luck tomorrow.

[mamafish9]

Hmmm - just a thought - a lot of kids who are allergic to dairy are also allergic to soy. Have you done both dairy and soy free with him?

As a sub, have you tried turtle mountain coconut milk beverage - it's yummy, and high in fat.

[WhiteHorse]

He's ok with soy. We use Silk Very Vanilla and he also likes the Almond version. I mixed it today about 3-1 and he's ok drinking it now - I think.

[kjbrown92]

Originally Posted by mamafish9

Celiac is different than allergies. Based on what I've read, most celiacs also have IgG (food intolerance) to gluten, but not often IgE (anaphylactic allergy). With celiac the gut lining cells are damaged in a very specific way that is different than intolerances or allergies (that's what they look for in the biopsy).

I agree that IgE is an allergy, but not all IgE allergies are anaphylactic allergies. Right? Anaphylaxis is when they have multiple system reactions and it's life threatening, isn't it? Just trying to clarify terms.

Why did you bring your DS to the nutritionist in the first place? I guess my question is, if he's still having some symptoms, how do you know what they're from? As in, could soy be a problem and you just don't realize it. If he's having something that's keeping him from gaining weight, etc. Or if he's not sleeping well (when the growth hormone is released), etc. I'm not a big fan of soy, especially for boys, with the phytoestrogens. There's better protein/fat out there - coconut milk, avocado, meat, beans, etc. I barely count what my kids drink as calories. I'm more focused on the variety of foods, and the content of that. We use coconut milk in smoothies and in baking for the added fat/calories, and I make coconut milk yogurt. Also are you eating the same things he's eating? Because for someone that age, that may be a good example. If you're eating something else then maybe yours looks better than his. Where if you're all eating the same thing, then he may be more likely to try new things?